Alexander “Sasha” Shulgin’s Stroke
A man who has had a huge influence on world culture and possibly your own life needs your help. He has suffered a stroke, and has lived a life dedicated to spreading precious and suppressed knowledge without requiring financial compensation in return. Think of the money and attention you unconsciously give to mass media, to activities that perpetuate ignorance for short term rewards. A single positive experience with MDMA or other compounds this man introduced should convince you of the value he has brought to the world.
Yesterday, on the way to the hospital for a scheduled test, Sasha had a stroke. He has been struggling for six months with an ulcer on his left foot that won’t heal, hoping to avoid amputation. Sasha & Ann have been in serious financial trouble for some years, and the coming medical bills will be a burden they can’t bear alone. Please, express your gratitude for all the work that Sasha has done, for everything he has given to the world, and give something back. Think of all the ways that your life, and the lives of others, have been healed, transformed, and bettered by this wonderful man. He needs your help now. No amount is too small or too large. Please give until it feels good…not until it hurts.
If you are not familiar with his work or influence, he rediscovered MDMA (colloquially “Ecstasy”), introduced its use as an adjunct to psychotherapy, and was distressed with irresponsible use and criminalization. He synthesized and tested a huge number of psychedelic compounds previously unknown to science, and detailed the process in the books PiHKAL and TiHKAL. For more read Shulgin’s wikipedia entry. Please donate to assist with the overwhelming medical bills that a long recovery like this entails, anything and everything helps.
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Sasha Shulgin c/o Transform Press
November 18, 2010
Sasha is in the hospital in San Francisco recovering from a small stroke that occurred at the base of the brain. The only damage “so far” seems to be to the part of the brain that controls the speech centers. So he has to enunciate carefully when he speaks, in order to be understood. There is also loss of awareness in the throat around the entrance to the windpipe. So he has to have liquids thickened slightly to prevent them from going down the wrong tube. The normal cough reflex has gone “temporarily, we hope”. There is no apparent paralysis anywhere, and we all hope the damage that has occurred will repair. Sasha’s left foot will need either surgery, the best course of treatment for his non-healing ulcers, or amputation, the thing we are hoping to prevent. All this is due to a circulatory problem, and the decision has to be made by the doctors very soon.
Sasha somehow maintains his good humor and his loving disposition, bless him; only when his foot is painful does he lose his smile.
We don’t know when he will be back home, but we hope he will be released within a couple of days. Thank you for your concern and caring. We’ll keep you informed.
November 21, 2010
Dearest Friends –
I’m sorry to have let a couple of days go by without telling you what’s been happening, but I’m sure you understand.
Sasha has, of course, two entirely different problems, one North (head) and the other South (foot). The effects of the (relatively) small stroke have been getting most attention, but the left foot, with its buildup of necrotic – dead – tissue, and the possibility of infection getting into the blood stream, which increases with every day, is keeping the doctors busy with plans, counter-plans and risk-benefit concerns. Sasha underwent a CAT scan and an MRI of the foot, and the day before yesterday (whatever that was), he was put on a strict fast from midnight on, in preparation for the Great Angiogram (which is the procedure we were driving him to when the stroke happened). Instead of getting him into the surgery room in the morning, which had been the intention, he had to wait (other patients, emergencies, whatever) until around 4:30 p.m., when they finally got him into the surgery. He’d been sedated, but despite that, he couldn’t keep his legs still enough for the photography to happen, and they postponed it until Tuesday. By that time, of course, I was beginning to get angry at the idea of my beloved man going without liquid of some kind, not to speak of food, for so many hours, although actually it didn’t seem to bother him; I was projecting my own hatred of thirst and dryness of mouth onto him, I admit.
Yesterday, Sasha was pretty sleepy, from the various pain-killers and perhaps the stroke itself, but he slept very soundly and woke up hungry this morning. He was more wide-awake and demolished a full breakfast plus a fresh banana that happened to wander into the room. One of the after-effects of the stroke (an ischemic stroke in the middle area of the pons, in medical language) is the danger of food going down into his windpipe, so all his food is being thickened slightly, which seems to avoid the problem. His speech is still hard to understand, but if he’s told to “enunciate clearly,” he can make himself understood pretty well, so a speech therapist is going to help train him in getting back to normal speaking, and it will simply be a matter of time. There is real hope that most of the stroke-effects will disappear, although no one knows exactly how long it will take, and we just tackle these problems each day, and do our best, and what will be will be, to coin a phrase. Thank heaven there’s no paralysis apparent.
On Tuesday, the doctor will put Sasha under general anaesthetic, just enough to ensure non-movement of his body, and during that procedure, once they see the angiogram picture and know where the blockages are in his circulation, unless there is no possibility of sufficient blood flow to the foot, they will proceed to take out all dead tissue, and probably the remains of the Achilles tendon, and put his foot into some kind of suction device for a few days (or weeks – I’m not sure of that detail), but they plan to send him home after that, on Wednesday, and I’ll report in full on all the rest of this situation as soon as I think I know what I’m talking about!
Thanks to all of you for your wonderful expressions of love and caring. It helps all of us to know that so many good people are concerned and want to help. Sasha is aware of what’s happening and sends his love back to you.
Blessings — Ann
November 23, 2010
inFAQ’s answered by Ann:
Q: Doesn’t Medicare cover Sasha’s medical bills?
A: Medicare covers 80%, which is wonderful, but many of the procedures Sasha has had to undergo have been very expensive and we have to pay the remaining 20% of the bill. Also, at this time, Sasha needs round-the-clock care, which Medicare not cover.
Q: Didn’t Sasha work for Big Pharma and get a pension from them?
A: No. Sasha worked for Dow Chemical Company at the beginning of his career, but only for a few years – not long enough to earn a pension. He set up his own private lab after leaving Dow, and worked independently from then on, as a consultant and lecturer in chemistry.
Q: Didn’t Sasha work for the US government at one time?
A: No, never. He was a consultant to the DEA, among other institutions, but never employed by them.
November 24, 2010
Sasha is coming home today. The angiogram was successful. There is increased blood flow to his lower left leg, so hopefully the healing of his wounds will happen now.
Thank you all for your donations, attention, and most of all your love.
Tania and Ann
November 28, 2010
Sasha came home Wednesday night. Attached to his left foot is a most extraordinary invention called a Wound Vacuum, not very large at all — it’s mostly a piece of special black sponge which is fitted to the wound, held to it by thin see-through film which extends well beyond the ulcer(s) to wrap around the leg. A thin tube extends from the middle of the wrapping, down to a dainty black purse-like box which hums away, maintaining a complete vacuum. The purpose of this miraculous contraption is to draw out fluids which tend to build up in the injured area, causing swelling and inflammation, and also to encourage blood to move into the field of battle. Without blood flow, healing cannot take place, and healing (not only in the general sense of the word, but in the very specific sense of the coming together of the edges of a wound, the forming of granulation tissue, and eventually the reforming of healthy skin over the ulcer) is the thing we’ve been waiting for during the past six months.
We are very lucky people. We’ve got a plucky British woman, cheerful and efficient, funny and optimistic, who comes for the night watch, helps with Sasha’s dinner (he’s still being hand-fed), brushes his teeth and checks to see that the nether regions are dry before he goes to sleep, after which she curls up on our long, very comfy couch and doesn’t stir unless Sasha wakes up, or the 5:30 alarm goes off, at which time she looks for me and, if necessary, knocks on my bedroom door to wake me up. Then we both change the King’s diaper (he often sleeps through all this), tuck him back into his blankets, and go back to sleep. Which reminds me, I’d better take an intermission, and get some sleep before my own alarm goes off in four and a half hours. I’ll continue this tomorrow, I promise.
November 30, 2010
Dear Loyal Friends,
I beg your forgiveness for having left you in the dark the last three days; I can only say that, despite having help round the clock, I’ve found myself, by 8 or 9 p.m., utterly exhausted and wanting only to collapse in bed. By morning, I’m okay — even my slight emphysema has cleared up. But at night? Holy Toledo, as the ancient ones used to say. I think I’ve been working harder at a thousand little things than I realized. If it weren’t for the really wonderful people coming in to take care of Sasha, I can’t imagine — well, anyway. Enough.
Sasha is getting better. Slowly, slowly, his strength is returning. The Achilles tendon wound, when the Wound Vac. is taken off for changing (every three days) is looking beautiful, clean and beginning to show “granulation tissue,” which apparently means it’s going to heal, says the doctor. Amputation is fading into the shadows as a threat. Not entirely gone, yet, but fading. Another kind of threat has also retreated, due to the ingestion of what is known around here as the Big Guns — a glass of prune juice.
The doctor has ordered that Sasha be helped onto his feet three times a day, even if he takes only a few steps. He’s going to eat his meals sitting in a chair or wheelchair, from now on. It’s amazing how fast the legs lose strength, when you lie in a bed for a week or more. However, it’s even more amazing how quickly that strength returns, when the patient makes those thigh muscles work to push him into standing position!
We take him into San Francisco to see one of the terrific surgeons who saved his foot last week — on Wednesday, and based on what he sees, he’ll tell us what happens next and how soon. We’re expecting (and hoping) that the wound will be healing sufficiently, within the next two weeks or so, to allow a skin graft to be put in place. But none of us can predict anything until the surgeon and our new, already beloved doctor have examined the foot carefully and come to their conclusions. But it’s looking really, really good right now.
We’ll tell you what happens on Wednesday. If I don’t manage to, Greg or Tania certainly will. And I apologize again for leaving you all wondering and worrying.
Now, back to bed. Speech therapist comes tomorrow morning at 9, to watch Sasha eat breakfast, probably to evaluate his swallowing, etc. His speech is improving already, believe it or not. That man has an amazing life-force.
Goodnight, love and blessings to you all. Ann
December 1, 2010
Dear Incredibly Generous People,
Greg (who was away with Tania for four days and is now back home) told me today about the help you have been sending us (he is taking care of the contributions that have been coming in), and about so many of you who have very little to spare — especially in this difficult economy — but who have nonetheless sent us something to express love and gratitude to Sasha. I don’t know what to say, except Thank You, and thank you again, and please, please don’t send what you can’t afford; if you’re out of a job, wait until you’re back on your feet and comfortable. We are very lucky, very blessed, in so many ways; Sasha’s stroke was mild, and the effects are beginning to show signs of healing. We’re also blessed by having wonderful, patient, loving and good-humored people giving Sasha round-the-clock care. They are being paid, of course, but any one of them COULD have turned out to be difficult or impatient or short-tempered, but instead, they are all easy to work with and affectionate and uncomplaining under even the most trying circumstances. And, as is always the case in situations like ours, there are moments that would try the patience of Mother Theresa herself.
Tomorrow, we take Sasha to San Francisco, to see one of the two surgeons who worked on his left foot and — quite probably — saved it from amputation. He will evaluate it and give us some idea of what the next step is, and how soon (presumably a skin graft).
Sasha is more alert, beginning to make puns again, and anxious to get out of bed (until he’s actually out of bed, when he discovers that he actually appreciates the bed more than he realized), and his appetite is good again (there was one bad day when he ate very little, but only one). His food is still being pureed, but that probably won’t be for long, since his swallowing is improving. His speech is clearer, already, and a speech therapist will be coming once or twice a week for a while. There are moments when the nerve pain breaks through, but his pain medication is really good, and the bad moments don’t last long, thank heaven.
I’ll keep the reports coming, except when I simply can’t, but those difficult days are coming less frequently, and I can almost always write just before going to bed.
Bless all of you, and thank you so much for everything you’re doing, and for showing so much love to this extraordinary and delightful man (and I say this as his wife of almost thirty years). If healing continues as we believe it will, it won’t be very long until Sasha will be able to get back to the lab and back to work doing what he loves most in life, with our good friend, Paul, being his co-chemist (and furnishing good eyesight).
Goodnight — Ann
Dear Members of the Most Evolved Network on Earth,
Tania and I took Sasha to the plastic surgeon on Wednesday, and we were joined by Dr. Paul, our new and already beloved primary care physician. Both doctors examined Sasha’s Achilles tendon wound (since no one had thought to put Sasha on a gurney or table, they had to turn themselves almost upside down to see the ulcer), and they expressed approval and pleasure at what they saw. They also promised to put him on some kind of surface which would allow him to turn onto his stomach, next Wednesday, when they see him again.
Granulation tissue, according to the doctors, is beginning to form around the wound, and that means that healing is beginning, and THAT means making plans for a skin graft is now reasonable. Assuming, of course, that everything continues to look good. For the first time, we heard details about the skin graft experience, such as: Sasha will be in a hospital bed for five or six days — depending on how well the graft “takes.” The surgeon said, “We want to do it at exactly the right time — not too soon and certainly not too late — because it’s a one-time thing, and we’ve got just one chance to get it right.” Surgeons like a bit of drama, now and then, so it’s best not to react to such pronouncements with too much panic.
Also, Sasha’s left leg will be elevated, much like a patient with a leg cast after a fracture, to prevent a pushing down of blood, as happens when one sits or stands, because the skin graft is very delicate, and needs to be left quiet and peaceful until it takes. He’ll be able to exercise all the other parts of his body, thank heaven, but not the left leg.
Sasha is up several times a day, now, using the walker, and we’re trying to get his legs strengthened, as fast as possible, because the skin-graft adventure will inevitably leave his elevated leg weak for a while.
I’ll try to write the next updates during the day, so I can put in more time, giving you details and pictures of what’s going on, instead of fighting the impulse to close my eyes and go to sleep.
Goodnight, Dear Hearts, and thank you for your messages. I’m going to bed.
Blessings —– Ann
To All our Friends,
Today we returned to the plastic surgeon’s office and he unwrapped the wound vacuum and took a look at so-called “granulation tissue,” which has begun to grow over the Achilles tendon. It’s doing beautifully, said he, and decided to wait another two weeks to maximize the signs of healing, and if the foot looks appropriately good, granulation-tissue-wise, he’ll set a date for the skin graft, probably December 27th. I felt a true sense of relief, probably because — this time — I’d actually seen the signs of healing on the wound/ulcer, and could indulge myself in a tiny bit of certainty that all this surgery, all this pain and anxiety, was really going to culminate in a healthy left foot!
It’s been almost a full year since this foot problem began!
I would love to write more, and will do so after tomorrow, but tonight it’s getting too late, and I have to get up in the morning in time to cross the San Rafael Bridge before the noon-ish traffic congestion slows everything down to a crawl. It’s my Mental Health Day, the day I get to play with my five-year old granddaughter for a few hours, painting pictures and making wonderful things out of Sculpey clay. The day I’m called Nanna!
Thank you all for your love and appreciation of Sasha — and me.
Blessings — Ann
Dear Patient (I hope) and Loving Friends,
I’ve had a bad head-cold the past two days, and couldn’t even begin to think of writing anything at all on this or any other surface. In fact, I couldn’t begin to think, period. Today, however, I feel better, having slept a lot, taken much echinachia, some vitamin C, and lots of hot apple cider. Oh, yes, and bowls of chicken soup, cooked by our wonderful Tibetan care-giver, Chime (pronounced Chimmy or Chim-ay).
Sasha is doing very well, wound-wise. Another problem has arisen, but thank heaven it’s amenable to several good medicines. This is a tendency to arise in the night about once an hour, needing — or feeling the need — to pee. (In case these details offend you, please remember that all males, including kings and presidents, as well as spiritual leaders and alchemists, have prostate glands [usually one each], and they all pee now and then.) This nightly overdoing of a natural act is, in this case, due to the enlargement of said gland, and this state of affairs can be easily remedied by modern medicine, and will be. Otherwise, our caregivers, each and every one a semi-saint, will lose too much sleep to retain their good and loving natures, and will eventually fall prey to their Dark-Sides, or collapse. Or something.
I send you all thanks and more thanks, in the meantime, for your messages and contributions and for taking time, in the midst of the seasonal turmoil, to think of Sasha and me.
Blessings to all of you —— Ann
The only reason for the silence of the past few days is that I became — well — sort of discouraged. Maybe a bit depressed. It happens sometimes. Today things changed for the better, because we saw the plastic surgeon again and he expressed approval and delight at the sight of Sasha’s main wound (they call it an ulcer). It has lots and lots of granulation tissue, which is what we’ve all been waiting for. And he set a date for Sasha to go into hospital for the skin graft: Wednesday, December 29th. Next week. For about six days.
I’ll continue this tomorrow, when I’ve had a good night’s sleep. I promise I will write much more, but tonight I’m very tired, so bed is the best place for me to be, and I intend to wake up with some amount of energy and I will devote the day — most of it — to completing this report and also wrapping presents (which will be several days late for Xmas, but that’s just the way it’s going to be).
May you all sleep well, too. And forgive me again for failing to communicate for so long. I’ll try not to let it happen again. No promises, but at least I’ll really try.
Bless all of you ——- Ann
Dear People Here, There and Everywhere,
Continuing the story of next week’s skin-graft surgery: As I told you last time, they (the Medical They) were wanting to do the procedure next Wednesday, but it turned out they couldn’t get a reservation at the hospital (I assume all the surgical rooms were filled, or something), so the new date is Tuesday, the 28th of December, at around 10 a.m. Sasha will go into the hospital the night before — Monday evening, the 27th — timing his arrival to avoid the nurse’s shift change, which happens at 7 p.m. Which means we’ll get him there around 8 p.m., when the nurses are fresh and relatively non-grumpy. This state of being is always helpful when one is a new patient (also fresh and non-grumpy). Especially when the patient (in this case, Sasha Shulgin, in case you’re losing track ) has a tendency to correct people’s English grammar, as well as to create puns of widely varying degrees of acceptability. The English grammar thing is invariably the same mistake, no matter what or where the hospital, and Sasha can always depend on a nurse, or orderly, or — for that matter — a doctor, to make that mistake: “Why don’t you just lay back and relax, Doctor Shulgin (or Sasha),” or some version of the same thing. Sasha’s response is instant and enthusiastic, “LIE, not LAY!” Almost always, this exchange takes place in a hallway, with Sasha on a moving gurney, surrounded by cheerful escapees from English 101. Being fresh and presumably well-slept, these angels of mercy always thank him for correcting their error, while I do my part, lifting my voice just enough to be heard by The Professor on his fast-moving gurney, “One of these days, Sasha, you’ll correct the Wrong Person, and then, you’ll be S-o-r-r-y!!!!” What I should say, of course, is “Next time, My Boy, wait until AFTER THE SURGERY before you insult the surgeon or the surgeon’s girlfriend.”
Oh, well. (Sigh.)
The skin-graft is not guaranteed to take, unfortunately, but we hope and cross all available fingers and toes. All I know is that They will position his left leg in the air, or at least higher than his heart. This position will be held by the left leg for most of six days. Since elevating that leg under normal circumstances always causes Sasha extreme pain, the surgeon plans to do some kind of temporary nerve-block, as well as giving him interesting amounts of I.V. Dilaudid (or Dilauded? Deluded? Never mind.) This plan helps alleviate my considerable panic at the thought of what might otherwise happen. All of these medical procedures seem to be a constant battle between the rocks and hard places, an unending effort to keep the patient steady on his high-wire — particularly when the patient is an older human, beset by several quite different physical problems all at once. What may require a thinning of the blood (trying to avoid a stroke) may work directly against a tendency to intestinal bleeding — et and also cetera. And to think I actually spent several decades wishing I’d become a doctor! Holy Smokes, Batman!
What will happen when Sasha leaves the hospital, none of us know(s). We’ll cross that whatsit when we come to it.
That’s it for tonight, my friends. Stay safe, have a really happy holiday, and sleep late. Ann
Dear Excellent and Superior Human Beans (also those entities who have migrated from other planets),
Merry Xmas, Happy Hannukah (slightly late) and Joyful Solstice (also slightly late, but who cares)! I hope you all slept well and long. This is going to be a very short but positive note, since I have to spend many hours today wrapping what used to be Xmas presents, but are now Happy New Year presents.
I think I probably failed to report on last Monday’s good results of a barium swallow test that Sasha underwent. The results were that, apparently, he no longer lets thin fluid down his windpipe, as was the case right after the little stroke. Which means that he can now have water (“Tried it once; didn’t care for it,” he says), soup and just about anything else he wants, without thickening. The only favorite thing he can’t have yet is red wine, which has been his favorite drug for many, many years. As long as he’s on pain medications, even the least bit of alcohol causes discombobulization, so it will wait until this whole leg and foot thing is over, and things have returned to whatever passes for “normal” in this household.
Happy holidays, dear people. Take care of yourselves and try to avoid anyone with symptoms of a head cold, because the one going around here is highly contagious and you’re better off without it, believe me!
Blessings and Thank You for being there — Ann (and Sasha)
Again, it took longer than I had expected to get back to you, but those of you who have had the experience of putting somebody into hospital will understand. The whole world (my personal world, that is) suddenly changes, and there are new dimensions, new schedules, new expectations and new fears to deal with. Like – are the nurses good and friendly and capable? Do the doctors know what they’re doing and to whom they are doing it? Do they remember which Sasha leg is supposed to get the skin graft? Does the nursing station serve the family members hot coffee and tea whenever they need it? Turns out, we are in a very, very old hospital (when is the last time you saw windows that opened with a crank?), and nobody has tea and coffee for family members, as the former hospital did. That’s okay. There’s a cafeteria downstairs and after hours there are machines that dispense. What they dispense is — well, it’s hot, anyway.
As for Sasha (you were wondering when I’d get around to the most important part of this adventure, yes?) – his graft surgery went very well, or so the doctor says, and he doesn’t seem to be having a lot of pain, so far, which is a good sign. To my surprise, they haven’t put the leg into any harness or other kind of restraint, but he’s wearing the soft boots which he’s had on for months, and we do our best to keep the leg up on a pillow. Oh, yes—we were urged to have our caregivers here night and day, because Sasha’s memory is severely impaired, and directions given to him by a nurse are forgotten ten minutes later So his caregivers (Chimmy, Vickie and Carlos) are his memory.
There have been glitches in communication about the particular pain medication being used by our primary care physician, and the nursing staff is sometimes aware and alert and other times somewhat clueless, depending on how well the outgoing nurses brief the incoming ones at the times of shift change. One breakfast tray never made it to Sasha, but he ate a good lunch.
We think he’ll be here until Monday or Tuesday, and we still have hopes of getting a private room, but the hope is fading, since this hospital was inundated by sick people on Monday, and they’re still full. Our doctor did his best to get us on the private room list, since a very compassionate friend offered to pay for it, but there is little hope that’ll happen. Luckily, the other patient in this room is a very nice gentleman, so there is no problem. Besides, we’ve learned to be grateful for human beings who are pleasant and cooperative, having experienced the alternative the first night we were here. There was a 26 year old male who didn’t like being intruded upon by another patient, and expressed (repeatedly) his dislike of women talking – obviously, he meant women doing anything – and during the night, he cursed Vickie, who was caring for Sasha, and kept cursing until he fell asleep He was probably in pain, having crashed his motorcycle, and he also was probably the only son of a gangster who had taught him to spread fear and panic wherever he went, in order to get his way, and the son was only trying to emulate Daddy and didn’t know any better. The nurses who had come in contact with this future crime kingpin made clear their joy at his transfer to another floor, although they tried to be discrete, and we were more than happy to find him absent when we returned the next day. It was a thankfully brief reminder of the fact that we, ourselves, live in a community (worldwide) full of really good human beings, kind and compassionate and loving and possessed – one and all – of minimally destructive dark sides. Of course, I mean all of you.
Love and Blessings — Ann
Finally, we have the really great news we’ve been waiting for! Sasha’s left foot has been encased in a wound vac. for five days, and yesterday, on the fifth day, the vascular surgeon, a terrific man named Dr. Parrett, took the vacuum off and examined the graft site. He said it had taken, hooray and Amen. Until now, we had not been able to dismiss completely the possibility of amputation, but this tells us that (at least, for the foreseeable future), the foot will remain with the rest of Sasha’s bod. And, thank heaven, Sasha can come home on Wednesday!
This particular hospital experience has not been without problems. We never did get a private room, due to the patient overload, but for the most part, the other room-mates have been nice people, so that isn’t a complaint. The nurses are mostly very nice and pleasant and helpful, with a few inevitable exceptions, who made things a bit difficult for our caregivers, probably not realizing that we have a really good relationship with our three caregivers and that they tell us everything that goes on when we aren’t there. Including what certain nurses say about a lot of things in our absence that they did not — and would not — say when we’re there. A lot of funny stuff, nit-picky stuff, goes on in hospitals as it does everywhere else, but small things get magnified in the minds of patients and their families, because we’re all helpless without good nurses, and there’s a lot of anxiety running around inside us when someone we love is sick and we can’t make them well by ourselves.
All of this rescuing of Sasha’s foot would not have happened without our new primary care physician (also known as the “family doctor”), who knew the right surgeons to send us to, and spends more time with us every time he visits than any other doctor I’ve ever known. Not fifteen minutes, but usually a full hour! He was introduced to us by a dear friend, an addiction and pain specialist named Howard (I’ll write his full name when he gives me permission), when our long-time family doctor left to open a clinic in New Orleans. This new doctor, Paul Abramson, is a member of The Tribe, and living proof that the universe is occasionally kind and compassionate, despite what might be described as overwhelming evidence to the contrary. The only negative (which we are going to accept willingly) is that his office is in San Francisco, a near-hour’s drive from our home. Dr. Paul has empathy, intelligence, humor, and loves challenges. And Sasha’s foot has been quite a challenge, witness the fact that the doctors in the Wound Care Center, where we took Sasha for many months, simply did not see the point of trying to avoid amputation, and thought we were wasting time and money in trying to keep his body intact. A certain lack of imagination, one might say. They are good doctors, but imaginative they are not. So I’m saying here, in front of God and all the Little Gods, that we are immensely grateful to Dr. Howard, who led us to Dr. Paul, who led us to Dr. Parrett, who led us to a successful skin graft.
Now, we are going to have to raise enough money to pay for round-the-clock caregivers for Sasha, for what may be years, since that magnificent mind has lost its ability to remember anything that didn’t happen many years ago. Arteriosclerosis, hardening of the arteries, is the cause, and the only bright spot in this rather sad picture is that Sasha’s true personality — optimistic, pun-loving, people-loving and chemistry-loving — is intact and shining brightly (unless he’s in pain, and we hope that will be an infrequent problem from here on), and when he moves back to the lab, with Paul, our chemist friend and Sasha’s co-author on the Shulgin Index, he’ll be happy again, because he still remembers most of his chemistry, and we hope that will continue for a long, long time.
And the Shulgin Index is off to the printer, thanks mainly to Wendy, my wonderful daughter, who said (something like), “No more! No more! It’s finished. We are sending it out into the big, wide world NOW!” At which point all the exhausted co-authors (Paul Daley and Tania Manning) cried out in unison (sort of): “Free At Last! Free At Last! Thank Wendy Awlmighty, Free At Last!”
Love and Blessings — Ann
Sasha is home, thank hevvin. I’m on my way to Marin, but before I can even get out of the house, there are so many things to do, including giving Sasha a shot of heparin — to prevent clots — that I suddenly found myself in the middle of a good ole-fashioned anxiety attack, including slightly shaking hands. So I asked Tania to give the morning injection, and promised I could do it this evening. I’ve got to get to the bank, get gas in the car, and I’m going to be waaaaay late. Wendy is the first person to say, “Don’t worry; any time you get here, it’ll be fine,” but anxiety attacks don’t allow that message to get through convincingly.
I’ll continue this later today — this evening — by which time I should have calmed down and retrieved my normal state (well, at least I’ll be over the anxiety stuff).
I haven’t even opened a single Xmas present yet. And I haven’t sent off most of the Xmas presents to my family, would you believe! It’s ridiculous. Have to remember that everybody understands and stop beating myself up about it.
To be continued when I return home from my Mental Health Day.
Dear Patient People,
This is the second note for January 7th, and it’ll be short, probably surprising nobody out there. This was a complicated day, but it all smoothed out in Marin County, as I breathed in the (relative) normalcy of Wendy and Audrey (five years old) and their two adolescent cats (American Alley Cats) who formed instant relationships with a large box I had brought in, containing somewhat late Xmas presents. As soon as the presents were out of the box, the cats were in. And around. And on top. And inside again, while we watched and laughed.
I’m over my anxiety attack and this evening I injected brave, stoic Sasha with his heparin. He didn’t make a peep, bless him, mostly because he was determined not to upset me, and also because the needle was very, very thin and fine. He’s doing very well, skin-graft-wise, but has a few episodes of pain in his foot each day, which is probably due, at least partly, to his peripheral neuropathy. It causes needle-strike pains which can go on for a long time, but we always give him buprenorphine, which is an amazingly good pain drug used by both Dr. Howard Kornfeld (he gave me permission to use his name) and Dr. Paul Abramson, who is in charge of Sasha’s pain management. In the evening, Sasha gets Lyrica, which is good for nerve pain, along with the buprenorphine, and these two work well together to dull the pain and allow him to sleep. We used to also give him Vicodin (one capsule), but it suddenly turned sour on him, causing restlessness and delusions, and these problems have pretty much disappeared since we cut that drug out. This can happen quite often in elderly patients — a sudden reversal of good effects — and one has to be alert to this possibility when the patient is older, and also when that patient has some degree of dementia (that’s such an ugly word, even when one is used to it).
Our lovely, motherly Tibetan caregiver is asleep on the couch, a few feet from Sasha, also asleep in his hospital bed, and I must go to bed myself. I’ll do my best to talk to you tomorrow, in between wrapping my family’s Xmas presents and getting them sent off to Denver and Puyallup (near Seattle), now marked with “Happy New Year.”
Which I also wish to all of you, again. Bless you for being there.
Now, this will be really short, because tomorrow is the big day, and it makes more sense to talk to you after Sasha’s foot gets examined by the two surgeons who did the skin-graft. What we hope is that they will look at the beautiful graft and admire it (and themselves, justifiably), and declare that, instead of continuing with the effort to keep Sasha’s left foot off the floor, and without any pressure on it, the whole picture for the future will be the reverse: Keep the left foot ON the floor, begin a bit of walking, then walk more, then walk normally, then walk to the lab!!! Of course, the surgeons won’t know about the beloved lab, so they won’t say anything about it, but the rest of us know, oh yes, we do!!!!!!!!!
And all our spirits will rise, most of all Sasha’s. Finally. After a whole year, for Pete’s sake.
And I can stop giving him shots of heparin. I’ve never given shots before, and my hand still shakes a tiny bit now and then, but I’m getting really good at it. And Sasha, bless his beautiful soul, utters not a squeak when I plunge the very fine needle into his tummy area. Now that I can do it so well, I’m ready to relinquish the privilege. ASAP.
Talk to you tomorrow. Wish us luck.
Love and Blessings to all of you —- Ann (& Sasha)
Dear Friends, Romans, Countrymen, Lend me your Ears,
We drove Sasha to the surgeons, Dr. Parrett and Dr. Safa, both excellent, skillful, indeed — vastly superior — vascular surgeons who did the job of saving his left foot. They examined and admired, then carefully re-wrapped the lovely skin-graft. Then they said the magic words, “It’s time for Sasha to put some weight on his foot and begin walking, just a few minutes several times a day,” and we began smiling. They told us to return in two weeks, at which time they would “ratchet up the activity.” Later, when we were home again, I phoned Dr. Abramson (“Dr. Paul”) and asked how long I should continue giving Sasha the heparin shots, and he said that as soon as he began walking, he wouldn’t need the heparin to prevent clots from forming. That was good news. I’ve managed to learn how to give a shot smoothly and without more than a smidget of anxiety, but I’m very happy to give it up, too.
Sasha still has needle-strike pains, now and then, sometimes in both left and right feet, but usually in the left one, and he may need pain meds for quite a while. If the pain is due to nerve regeneration, there will come a time when the needles will disappear; if due to peripheral neuropathy (as I think I already described), they may be permanent. We’re hoping for the former, but if it’s the latter, there’s hope that the attacks will come less frequently. But right now, we’re so happy about the saving of his foot, we’re not going to worry about anything else. For 24 hours, at least.
I’ll write more tomorrow, if I can; otherwise, I’ll be back with you Thursday. In the meantime, I send my thanks and deepest gratitude to those dear hearts who have contributed money, both small amounts and very large, all of them received with feelings of something close to awe. I know that Sasha has contributed to the happiness and increased richness of many lives, but it still seems incredible that so many of you are sending help — in the form of money — as well as expressions of love. We are determined to care for him at home, no matter how far the so-called dementia may go. Right now, his chemical knowledge is still mostly intact, just as his musical memory is. He’ll be walking to the lab within a week or two, at the most, and he’ll be back in the world he loves, with the help of Paul Daley. We will continue giving him round-the-clock care as long as we can afford it, and we’ll continue raising funds every way we can so that we’ll be able to afford it. I’m very optimistic, and that’s due entirely to all of you and your responses to our call for help. Tania and Greg have been steadfast friends, giving of themselves and their energy for years to both Sasha and me. Without them, I would be in hospital or in a state of complete breakdown (I admit I’m not really 39 years old, although that news may shock you deeply), and I just don’t have the energy to do all the things that Tania does for us without complaint. And our caregivers have become affectionate friends as well as paid helpers. That’s why I think of us — Sasha and me — as really blessed.
Thank you again, and much love — and talk to you tomorrow or Thursday…
Sasha is doing well, and would be doing even better if it weren’t for a “blister” on his left heel. You could call it the possible beginning of another ulcer, but we don’t want to go there. The doctors and nurses call it a pressure blister, and we’re trying to get him to remember, every time he gets up to walk a bit (he’s supposed to do that about every hour — with a helper beside him) to walk on the ball of his foot and not the heel. It’s not too hard for him to get the message, since the heel hurts severely every time it’s touched. It’s tempting to think things like, “Why is there always some new ulcer or skin breakdown; why doesn’t all of it go away, now that the skin graft is successful?” But the fact is, he’ s still got the peripheral neuropathy, and probably always will have. Which means, it’s going to be hard to get him completely off pain meds, because there’s always some nerve twanging away, especially at night. The only reason — for me — to want him off pain meds is that only then can he have red wine again — even just a single glass. And that is, or was, his favorite drug, his drug of choice, and I hate to see him go through the rest of his years without enjoying it again. We’ll figure something out.
Since coming home, my impression is that Sasha has had somewhat less “sundowning” than before. Maybe I’m just imagining it. He certainly does have evenings when reality is definitely — ah — altered. Not a good trip, either; it’s usually associated with some anxiety, such as trying over and over to treat his small television monitor like a computer, and wondering why he can’t find the mouse OR the keyboard. But I’ve noticed that there are now some evenings without sundowning, or at least with a minimal amount of it. There’s no question that being home is better than being in hospital, for anyone, but particularly people with mild dementia. They need familiar faces and things around them, and any place not-home is disorienting. He goes to the doctor without trouble, because he’s with familiar, loving faces, people who know what’s going on, and he knows he doesn’t have to decide anything or fix anything or do anything worrisome. And the visit to the doctor’s office is relatively short. Before you know it, he’s headed home again.
This leads me to thoughts of Burning Man and other places in the world that I’d enjoy seeing again (or, in the case of Burning Man, enduring/surviving again). If someone offered to lend us a nice-sized RV and pay our way to BM, I would be tempted to say Yes! Yes! (and Thank You, of course), but then I would have to sit down and do some thinking. We couldn’t do it without a care-giver, of course, because Sasha can’t be left alone. And even the most devoted care-giver would need time off. Okay, then, two care-givers. Since they would be together in the RV, they would have to like each other and get along very well. (Maybe we change the description of the RV from nice-sized to HUGE! ) Could I be the second care-giver? Yes, I could. But my months of being just that, last year, taught me how exhausted I can get in a rather short time. Not only am I no longer young, I have a very bad back. I also need ten hours of sleep, while Sasha needs about six hours.
What about the many wonderful volunteers who have offered to help take care of Sasha now and then? Well, that sounds great, but my man needs — as I said before — familiar faces around him, especially at times when intimacy is unavoidable (peeing, etc.). Above all, there is the possibility of something physical going wrong, like another stroke, when medical treatment is vital within the first few hours, to prevent disaster or death. Burning Man is not the place to take that kind of chance.
(Sigh.) Well, we don’t know how things will develop within the next months or years. Sasha’s body has always been amazingly strong, and his mind has been one of the world’s best. Maybe ——- maybe. We’ll see.
This has been a lot of speculation, but that’s what came out today, and that’s what I shared with you.
I’ll tell you more about what’s going on within the next few days. The weather in the Bay Area is predicted to be dry and sunny and a bit less cold for the next week, so enjoy the sunlight and have a lovely weekend.
Love and Blessings to all of you — Ann
Dear Friends Everywhere,
Wonderful news! The skin graft, which has been considered almost surely a success, but with a couple of questionable places that were being carefully watched, is now officially a complete success! We can see the new skin clearly, and the nurse who comes three times a week to change the dressing said, “It’s time to be happy! The graft is perfect!”
There is still the small ulcer on the heel, but that is considered the result of pressure over a long period of time in bed, and it is looking a bit better. Sasha is being taken on short walks with the walker (and with a caregiver by his side) every hour, and we are trying to get him to remember to walk only on the ball of the left foot, not on the heel. And whenever he sits down for a while, his left leg is lifted on pillows so that the heel hangs in the air, without any pressure of any kind. The heel is the source of considerable pain, whenever it is touched, and we hope it’s going to clear up soon. Sasha’s other source of pain, which might or might not clear up in time (weeks? months? years?) is his peripheral neuropathy, together with (says our doctor) pain caused by regeneration of damaged nerves. We aren’t sure what causes the needle-strike pains which hit him usually in the mornings and always in the late evenings, but if it’s nerve regeneration it would theoretically fade away when the nerves recovered. If it’s the neuropathy, he’ll probably have it the rest of his life, which means he’ll have to be on pain meds, which means he won’t be able to drink red wine again, which is a dreadful thought. We do give him a glass of Fre wine, which is non-alcoholic, whenever a guest comes to dinner and brings a bottle of red wine. He’s put up with that for quite a while, and there are times when I think he forgets it isn’t the genuine stuff.
Inevitable question from one of you: How could Sasha not know that non-alcoholic “wine” is not real red wine? Answer: aside from the mental state (the “d” word), he lost all sense of smell several years ago, which is something that can happen to chemists when they are elderly, simply as a result of having been exposed to too many chemicals over too many years. It’s quite common among serious chemists when they’re over 75 or so. And loss of smell means alteration of the tasting ability.
Again, I send my fervent thanks to all of you who have donated anything from fifty cents to thousands of dollars to help us with the cost of 24-hour home care. Without your help, we would be forced to entertain thoughts of nursing homes or places like it, which would be really dreadful for a man like Sasha, whose mind is still bright and creative (some days are better than others), despite the memory loss. As soon as he can walk as far as the lab, he’ll be back out there and truly happy, but he will still need a caregiver close by.
So thank you all again, with all my heart.
Blessings — Ann
Sasha’s heel is improving, but he’s still lifting his heel from the ground when walking, just to insure as little pressure as possible until healing is complete. In the evenings, he still gets the needle-pains in his left foot, and only the pain meds and a bowl of chocolate ice cream (by mouth) seem to help.
It was a beautiful day and we saw none of the reported high winds that brought trees down all over the East Bay. It’s hard not to hope for warm weather and early spring, but common sense reminds us that more rain is needed, and more rain will come. I just hope the weather gets a bit less bone-chillingly cold, especially at night.
Sasha’s spirits have been a bit low the past two days, although he smiles and laughs as soon as Paul Daley arrives, or Tania, or Greg, or several other familiar, loving people. He always smiles at me, as I do at him. Our two women caregivers are not only trained, and immensely capable, but affectionate and truly caring with Sasha. They change what has to be changed during the night, and they always do what has to be done with amazing good humor, no matter how little sleep they might have had. During day shifts, they engage Sasha in various ways, not letting him droop or sink into sadness (which sometimes overtakes him for a few minutes), and their good humor always brings him out of those low moments.
I’ll write more about our two women caregivers tomorrow or Saturday, but it’s too late tonight to write as much as I’d like. I have one question on my mind: how come people who take care of property — houses, farms, haunted mansions — are called caretakers, and people who take care of people are called caregivers?
Sleep well and Blessings ——Ann
Dear Ladies and Gentlemen,
Well, I would have managed to write last night, except for the fact that Sasha got sleepy early and everyone headed for bed, including me, at an hour when I would usually be sitting down and gathering thoughts and memories for this note. I’ll either make this rather short, because we’re going to be interrupted momentarily by a plumber who will, we hope, make things flow as they should in the bathroom and kitchen — or I’ll make it long because the mood will be right and the urge will overtake me. The writing urge, that is.
Right now, despite my knowing that 99% of the world’s population is unluckier and less blessed than we are, I’m caught on that knife-edge between light and energy on one side, and dark grey grouchiness and self-rejection on the other. Mild depression, I guess. (Self-pity, says my inner judge.) On PBS television there is a great program about the Big Bands of the ’40’s. Benny Goodman’s music, tremendously familiar and loaded with memories — or bits of memory — about high school (most of it sheer hell for a girl with an English accent who had recently been in Europe and home-schooled) …. Actually, when I got to private school in New England, things got a bit better. There were lots of weird people there; I wasn’t the only one. (The inner judge grumps, “You think you had problems because you had an English accent? Try having a black skin, kid! Now, THAT was problems!) My mother persuaded my father that my brother and I should change our names to her family name, instead of going around with a name that sounded Jewish (because it WAS Jewish). So we did. We became Ormiston, instead of Gotlieb, because my dear father had experienced anti-Semitism (plenty of it in the State Department, for which he worked), and didn’t want to make his kids go through what he’d gone through (and because he was afraid of my mother). It worked pretty well. But kids will make hell for other kids without the excuse of black skin or Jewishness or even English accents. If they’ve been bullied at home, they’ll bully others at school. Boys, especially, will attack weakness or gentleness, and my brother was very gentle — extemely intelligent and gentle — and he was sent to private boy’s school in Canada and never really recovered from it.
But those were the days when good parents did things like that — sent their kids to private schools (if they could afford it) and told the boys to “buck up” when they wrote home pleading to be released from torment. Bullying was accepted as normal (that lasted until just a couple of years ago, and is still accepted in most schools), and young males were expected to fight back or just put up with it. Nobody talked about the suicides. And, realistically, it was simply the law of the jungle — if you can’t fight back or turn the tables in some manner on your attacker, you will go under and die. The survivors were strong and apparently self-assured. The British Empire was forged by such survivors. And they kept the empire going until a little guy who walked around in a cotton loincloth and taught helpless Indians how to handle the tough, hard British took the country back from them.
I’m probably going to have to throw out all this stuff, unless I decide I’m writing Book Three on Caring Bridge, and Facebook, and I’m not sure that’s what I should be doing.
I’m just in a mood to hate the dark side of humanity (including my own Shadow), and that is a complete waste off time. It’s there because it has to be. My only job is to make unconscious things conscious — starting with myself and my own Shadow.
As for Sasha, he’s doing well and better, really improving every day. It looks as though the various things we’ve been attempting — hanging the heel out over the edge of the cushion — has begun to heal the ulcer. And he’s sleeping better (which means the caregiver at night gets more sleep).
And I’ll stop running on at the keyboard, and give you fuller Sasha information in the next note.
Blessings and love — Ann
January 27, 2011
Dear People Across the Great Wide World (except China),
Sorry again. It was impossible to get to my computer, and I’ve got to get some sleep. Tomorrow, however, is a day without visitors, one hundred and five errands, etc., and I think I’ll actually be able to get some urgent things done, and also WRITE. To all of you. Sasha updates (good) and stream of unconsciousness (no comment). I promise. I give my word(s).
Love and gratitude and be patient yet again, please — Ann
Dear People All over the World, including China, unless the people in China are among those who believe that Tibet is better off as part of China than before they were part of China. Although I don’t wish to alienate any nice people in China, they must understand that I am a devoted admirer of the Dalai Lama and all the people of Tibet who resisted the invasion of Big Brother China. I would not have expanded on this except for Greg, who always puts my writing onto Caring Bridge and Facebook, and who phoned me today when I was driving in town (without my head set) and asked me (referring to yester– oops — several days ago, when my salutation included the words, “except the people of China,” or something like that), and asked me, “Why?”
My reply was rather scattered, since a corner of my mind was busy trying to identify possible policemen or other law enforcement who might notice that I wasn’t talking into a headset, and subsequently levy upon me a fine of huge proportions. And they would be right. I believe in headsets while driving and also while not driving, and I own two of them, but don’t know where they are at the moment.
Since then, I’ve reviewed the part of my brain that contains files called “China and Tibet,” and re-affirmed my strong feelings about that subject. That’s why you are being subjected to all this. I’m out of the China closet. Actually, that used to be (in the late 1800’s) called the China cabinet, but —- Never Mind.
Where was I?
Oh, yes. Hello, Dear People of Everywhere,
Today was one of the Big Days. Sasha actually walked all the way to the lab, and took his seat inside, with his caregiver present, and began talking chemistry with Paul, who took some fantastic photos. Tania joined them at one point, and there is a great picture of all three of them, smiling broadly.
We are (meaning the two girls/women/ladies and I) gradually getting a picture — sort of — of Sasha’s pain problems, the where and the why. His Achilles tendon and the heel have become almost-perfect examples of superb Western medicine and what can be done by really good Western surgeons. The original angels are, of course, Drs. Howard Kornfeld and Paul Abramson, who pointed us in the direction of said surgeons. Without them, we would never have heard of doctors who label themselves “Limb Savers,” and we probably would have lost a foot by now. And, yes, we all would have lost that foot.
In the evenings, Sasha’s needle pains attack his leg, and they are now being understood as the results of the peripheral neuropathy, and he’ll probably continue having that problem. We’ll do our best to make him as healthy as possible by means of diet (fresh fruits and veggies, protein, vitamins, etc.) as well as exercise. Following the advice of a very wise person, we’re giving him goat’s milk and Basmati rice, and these do actually help reduce swelling in his feet, which is a real concern. But we’re all still learning. Every night is a bit different. When he can be persuaded to stay in bed most of the night, the foot swelling is gone by morning. When his pain makes it necessary for him to sleep in the Lazyboy chair, the swelling is still present when he wakes up. But all of it is getting better.
Sasha’s mental state seems to have improved during the day, since he came home from hospital, but the “sundowning” is almost always present, to some extent, by the time evening comes. His chemical knowledge is still there, though, and now that he can work in the lab with Paul, it will probably sharpen and improve, along with his analytical ability and other aspects of his mental functioning. But he can’t be left alone, because there’s too much risk of falling, among other things. So we continue to fund-raise, because we’ll need 24-hour a day help for the rest of Sasha’s life. So far, as I’ve said many times, we’ve been amazingly lucky in our caregivers, with perhaps a single exception, but we’re busy taking care of that exception. We seem to have attracted really lovely human beings — funny and caring and patient — and may it continue to be so. With Tania and Greg as our right and left arms, all we can do is give thanks (and feed them all Basmati rice).
For the moment, this is all. When Greg returns from his mother’s funeral, I’ll write more.
Love and thanks to all of you. Sleep well and dream in color (unless you don’t want to). Ann
Dear Everybody, Especially Those in China,
Again, I have a couple of good reasons for having presented you with silence for the past few days (I’ve lost track of the number), such as:
1. Laying off one caretaker, interviewing another. The details are a bit sad, but these things happen.
2. Wrapping the next to last Xmas present.
3. Making phone calls and answering phone calls and missing phone calls.
4. Going on errands that should have taken 1/2 hour and actually took three hours.
5. Recovering from same.
6. Promising myself that I’d done everything I needed to do in the outside world, only to discover five errands that were urgent (the next day) and taking two to three hours to do them (how do you underline words in this program?) and two hours to recover again.
7. 1-1/2 hours spent in feeling sorry for myself, followed by 27 hours spent feeling guilty for feeling sorry for myself.
8. The revolution in Cairo. I have an answer for what should happen next in Egypt. There should be a Golda Maier (Mayer? Meier?) — with an Egyptian name, of course — an educated woman, a mother and maybe grandmother, who can fearlessly offer herself as transitional communicator between the people and the government. She would be welcomed instantly, for reasons I will offer next time, and Egypt will step into the 21st century.
9. I’m tired, and I’ll continue this tomorrow evening. I will also answer those who got their panties in a bunch over my China comments (which delighted me, by the way). During the day tomorrow, I will be Nanna, and will regain what I have left of my mental health.
10. You are good people — at least, most of you are, at least most of the time, and I send my love to you all.
Blessings — Ann
P.S. Sasha is doing very, very well, and has gotten back to the lab again, this time for over two hours, today. He becomes much happier when this happens. And his chemistry memory seems to be very good indeed. And the Shulgin Index will be available, the printers say, the first week in March!
Dear Everyone (except males between ages 15 and 34 living in Nigeria),
Let’s see what reaction THAT brings about! The China remark and its responses brightened my day immensely, since it inspired a couple of tiny surges of adrenaline in me (in obvious response to the tidal waves of adrenaline in those who responded), and if there’s anything I need to help me get out of bed, it’s a pile of tiny surges of adrenaline.
We are getting better and better (“we” meaning Sasha), but there’s one problem that remains, of course: the one that makes it necessary to have 24-hour caregiving. Sasha’s brilliant mind (over 180 I.Q.) is, as you know, suffering from mild dementia. We’re finding out a lot about so-called dementia. For one thing, the state of mind — the acuity of mind — varies tremendously over every 24-hour period. There are days when he’s at the top of his form, as the British say, full of puns and funny comments, and when he’s in the lab (three times now), his chemistry is right there, with a few small holes here and there, but basically intact.
But at night (thus the term, “sundowning”), there is anything from mild misperception to frank hallucinations. And, unlike what one would expect, his profound experience with altered states doesn’t help him, because these states are full of anxiety and unease. Even when he’s having no pain from the peripheral neuropathy, he’s inclined to lie in bed and toss and turn, and when you ask him what’s wrong, he says, “I don’t know,” and if you ask if he has pain, he says, “I don’t know,” and then he argues for getting back into the Lazyboy chair (where he’s spent many hours in the evening), where he’ll go to sleep — usually. The only thing wrong about this sequence of events is that, unless he spends some hours with his feet up on the bed, his feet will begin to swell. The only thing wrong with swollen feet is that they are inclined to produce small cracks in the thin skin, and those cracks can form ulcers, and ulcers are what we’ve been fighting for the past year. With less than good blood flow, ulcers are real trouble, and they just won’t heal.
It’s possible that some of the sundowning at its worst may be due to one of his meds., Lyrica, which is one of the few good nerve pain medications available. One of its nastier side-effects can be, “mood-alteration,” which is pharma-speak for “messing with your head.” So we might be faced with a choice: attacks of nerve pain, or increase in sundowning. Even if we had no drugs that affected the mind, Sasha would still have a certain amount of sundowning, because it’s one of the things that goes with dementia. I’m grateful that it isn’t worse than it is, but one hates to see it there at all. I’m also aware of the fact that my reaction to it is part of the remaining shreds of denial — my semi-conscious refusal to accept the existence of any dementia at all.
My problem, not his.
We’ll see what the doctor says.
Bedtime. I should get on the stationary bicycle, because my legs are feeling very tired and achy, and I’ve got to get their strength back. But bed is so much more inviting.
Bicycle in the morning.
Goodnight and Good Sleep to all of you. And Blessings.
Ann and Him.
For the past week, I’ve been battling severe back pain, which will presumably disappear (at least for a while) on Friday, when I get my bilateral steroid back injection. The pain makes me feel like an old, stooped, withered great-great-grandmother — the kind whose voice is a quavering whine. Okay, maybe my body is slightly — uh — well, sort of old-ish, maybe, but my ravishing beauty is barely — er — well, never mind.
Along with the pain (actually, the “pain” is controlled pretty well by pills) goes a general feeling of weakness in the spine and legs, and that leads to a sense of exhaustion which is as much mental as physical, leading to depression (which I’m inclined to anyway), not intense, but enough to make it very hard to convince myself that there’s anything worth getting out of bed for. Some days are better than other days.
One of the things that I have let drop, temporarily, due to this generally icky state of mind, is Caring Bridge and Facebook. After the injection Friday, I’ll feel a return of meaning and intent and interest (I hope and believe), and I’ll sit down and continue communicating. Until then, I ask you to understand and be patient — as I have so often — and I send you thanks and blessings.
See you this weekend. Don’t forget the Oscars (those who loathe them or couldn’t care less ignore this) on Sunday. My family members are for the Black Swan and the King’s Speech.
Goodnight. Sleep Well.
Love from me. Ann.
Okay, I’m B-A-A-A-CK. And never mind asking where I’ve been, because I wouldn’t tell you even if I knew.
Sasha is not only doing well, he’s doing remarkably well on the physical front, and even a little bit on the mental front. Our two Tibetan ladies, who usually take over during days, have been responsible for the improvements in Sasha’s body. They exercise him almost continuously, sometimes gentle upper-body stretching, which strengthens his arms, sometimes standing at the kitchen sink, lifting feet and legs (one at a time for now), and once a day, walking all the way to and from the lab. Gradually, they’ve weaned him off the walker and back to a walking stick (with one of the women next to him at all times), and as of today, he can walk all by himself with his stick — not fast, but steadily — although, again, with a capable, strong woman right behind him (they are really strong, these gals — all three of them).
No more shuffling steps, thank you very much, and no more moments of dizziness. With the increased strength in his legs — and arms — he’s beginning to hold himself differently now. A bit straighter, a bit more like the original Sasha we’ve been missing for so long.
Tomorrow, I’ll tell you about the mental side of things.
Love and Blessings — Ann
Sasha, Ann, Tania, Chime and I just opened the box and held the first copy of The Shulgin Index in our hot little hands while hooting and hollering. Eight years of work plus tons of heart and soul… THE SHULGIN INDEX EXISTS. Yee haa
The Shulgin Index is available from Transform Press.
Dear Friends, Strangers and Visitors from Other Solar Systems,
Now, as to Sasha’s state of brain and mind. As you know, he has mild dementia, which is the reason we have round-the-clock care. For a couple of years, he was taking Aricept and Namenda, which may or may not have helped slow the process, but which obviously weren’t doing much of anything recently. Our new doctor, Paul Abramson, decided to take him off those, and put him on hydergine, Albert Hofmann’s compound. That was about three weeks ago. I didn’t expect any obvious results, and of course one never knows if a state of dementia is being slowed down; I mean, how would you tell?
So when Dee (one of our miraculous Tibetan women) told me that Sasha was suddenly doing certain little things (like feeding himself) which he hadn’t been doing before, I said “What! He is?” or something like that, and she then listed a few other things that he was doing better, all of which was astonishing. Clearly, the hydergine has been changing things. He takes it three times a day.
I’m thinking seriously of asking our doctor if I might try the drug myself. After all, it’s my understanding that Albert and his wife took it themselves for many years, and my thinking, focusing and memory could use a bit of sharpening, to say the least!
I know that dementia is not reversible, and that the brain’s blood vessels can’t be cleaned out the way some blood vessels in the legs can be, but even small improvements — less sleepiness (sometimes), more ability to focus on things that matter to him (like chemistry), a bit less “sundowning” in the evenings (sometimes) — become immensely important to all of us. It’s like getting a bit more “real Sasha” back, even if it isn’t every day or every evening. We really celebrate every improvement of this kind, and hope that it’ll last for a while.
I hear from Greg that an amazing number of lovely people have asked what I want for my birthday. A card would be wonderful, but as for gifts — I’m sure you’ll understand when I say that what matters to me most is being relieved of the constant anxiety about how we’re going to afford to keep Sasha at home with the excellent and loving care he’s getting from our three Graces. By the way, Sasha’s increase in physical strength, his ability to walk now with a cane instead of a walker, is entirely due to the women who take care of him and put him through exercises all day long (although they do let him nap a bit in his chair after meals). They treat him like their own fathers, with love and humor, and you can’t put a price on that.
So what I want for my birthday is to find a few very wealthy and compassionate people who are interested in consciousness and familiar with the world of psychedelics, and who understand what Sasha’s work has meant — and will continue to mean, long after he dies — and can afford to help us keep him home and so very well cared-for.
In the meantime, I feel tremendous gratitude to all of you who have sacrificed God knows what, to send us whatever you could. It’s because of you that we’ve made it this far, and I hope you understand that I can’t thank you individually, although I would if I could.
The best thing I can do in return is to continue The Third Book. I’ve finally gotten to the point where I can put aside one whole day a week (with Tania’s help) to do nothing but write. Several chapters are already half written, and I’m going to re-write them and continue with new chapters and the necessary research next week. Tania is away this weekend, but after Sunday, she’ll be able to take the phones and keep the world at bay for that one whole day a week, and I’ll get started.
For now, I wish you all Blessings — and don’t forget to re-set your clocks before bed on Saturday.
Love and thanks — Ann
As the saying goes, “Life is what happens when you’re busy with other things.” Life and — right now, until tomorrow, at least — death. Tomorrow is when we get a diagnosis of a PET scan of Sasha’s son, Ted. He recovered, several months ago, from cancer of the neck, and it looks as if it’s come back — with a vengeance. This is one of the more aggressive forms of cancer, and this time, the lumps, the tumors, actually show on his face. A doctor friend of ours visited him and feels that he may have only a few weeks to live. Of course, we don’t know for sure until tomorrow, when we — Tania and I — take Ted to the oncologist’s office, around 9 a.m., and she reads the diagnosis to us.
So, why are we assuming the worst, when we won’t know for sure until tomorrow? We aren’t assuming that the cancer has spread inside him, as some of his symptoms would suggest, but we also want to be ready to help him in any way we can, if the verdict is thumbs down. It’ll be hard enough on him, and he won’t need a couple of shocked, tearful women around him, when the most urgent thing will be to line up help for him, like social worker, Hospice, and various other things, all of which require clear, focused minds. So we’re looking straight at it (as Ted is, also, to some extent), and not falling into denial. We’ll be as ready as we can be, whatever the diagnosis, and we’ll be able to move fast. If the PET scan shows no metastasis, it’ll be whoops and laughter and a few glasses of champagne (or whatever Ted wants). No problem there.
So I’ll write tomorrow, at the end of the day, if I possibly can. Sorry I haven’t spoken before about Ted, but this site has been devoted to his father, Sasha. By the way, Sasha is now walking without the walker — just with a cane (I don’t know if I told you that before), almost entirely due to our three helpers — the two Tibetan women and the Cockney one — bless all of them, and his mental state has actually improved, due probably to a new medication (thanks to Dr. Abramson) — and I apologize if I’ve told you all this before; I can’t remember exactly what I wrote last time, or when the last time was.
There is another famous saying, which you all know, which is both a blessing and a curse: “May you live in interesting times!”
Sometimes it almost gets too, too bloody interesting, n’est pas?
I’ll write again tomorrow. Cross your fingers, toes and any other parts that lend themselves to crossing.
Blessings — Ann
I didn’t get to the computer Friday, as I’d intended, but I’m here today with the continuation of the story of Ted Shulgin.
Tania and I drove Ted to the Cancer and Research Institute yesterday, where a truly wonderful woman, Dr. Chen, who is straight-talking, gentle, empathetic but firm and down-to-earth, read us the diagnosis of the PET scan. It was as we had all expected: the cancer has returned, with a vengeance. It now inhabits not only the soft palate and the neck and throat, but also the lungs. They had thought he had an invasion of his bladder, too, but that turned out to be the only good news in the report; the bladder was clean. Of course, lurking in the background is the aortic aneurysm, which may have been there for years; nobody knows. It was caught on film last year, and has been part of Ted’s life for a long time, now.
Ted asked what his options were, and how about chemo again. Dr. Chen explained that, had he been able to eat enough during the past few months to put on a bit of weight, the chemo might possibly have been considered, but he has been unable to take anything but liquids all this time, and not all liquids at that, and his weight loss has been severe, and the chemo would probably kill him (or words to that effect).
So the next step is Hospice, which is one of the greatest inventions ever thought up by humans. That and the Forestry Service are great lights in the darkness, and the people who work with them are among the best examples of their kind — the human race, I mean — and when Ted stated that he wasn’t interested in having Hospice people invade his life quite yet, I pulled rank and told him that Tania and I need Hospice on the case, whether he thinks he’s ready for them or not. Ted, by the way, is a rather stubborn man, and in this situation he’s going to have to accept the fact that neither Tania nor I are superhumans, despite much evidence to the contrary, and we need everything that comes with Hospice — a social worker, possible Medicare, possibly other helpful things, none of which we know enough about. We need all the help we can get, in other words, because we have the entire responsibility of Ted’s care in our hands. Tania’s husband, Greg, is immensely helpful with lots of man-things, like water-hookups, propane tanks, and anything involving cords and plugs. And computers. And big, bad, indifferent corporate structures which believe they can screw the average consumer and get away with it. MAN, is he good with them! He is, after all, a New Yorker, born and bred, and he Knows What To Do.
But dealing with Ted is not his forte (that word should have a wingdangle over the “e” but I don’t know where to find it on the keyboard).
Sooner or later, I’ll tell the story of my surprise birthday party, which was fantastic, due to the amazingly expert and very devious planning by my daughter, Wendy. But not now.
Sasha is really doing well, and better all the time, physically. The miracle women have done so much for him, I am continually amazed, and I will continue doing everything I can (along with many friends) to make sure he stays here and has these people taking care of him. It means fund-raising and more ditto. Ted’s bills are now my bills, of course, since he has no known assets at this point. He used to run the best fastener business in the country, but the economic collapse killed it. Then came his heart-attack, two years ago, and a quadruple bypass, and some emotional shocks, all of which caused some pretty bad depression, and then the cancer. Nature is not known for its compassion.
Okay. I’ll stop for now. Continue as soon as I can. Thank you for your good hearts and willing ears (or eyes).
Blessings — Ann
Sasha continues to be a bit stronger in legs and arms every day. He does his exercises with each daytime caregiver, sometimes with reluctance, most of the time with humor and pleasure in being able to do so well. He eats a big breakfast and a light lunch, and in the evening he usually eats well, especially if I’m eating with him. During the day, most of the time, he is bright and interested in whatever conversation is going on. He’s at his best when there are several people around, and he loves going out to the lab when Paul is here, and indulges in puns and word-games as long as his audience continues to groan in response. Sundowning is always present, once the evening has begun. It’s not disturbing at this point, since we’re used to it. He almost never gets really angry; only if something causes him pain, which sometimes happens despite very careful handling by his care-people. After all, the skin of over-80-year- olds is usually very thin, so they need to be touched gently. However, there are times, such as the need to remove a bandaid, when it’s very hard to avoid causing painful stretching of the skin.
After lunch, Sasha always goes up the stairs (with his careperson by his side) to the parking area above the house, and he crosses slowly over to the big building his son, Ted, had built (I call it the nuclear bomb shelter), and sits inside with Ted for about 15 minutes. Ted is usually content to sit silently with his dad, holding his hand. It’s hard for Ted to talk clearly, due to constriction of his throat by the cancer, so they sit peacefully for a little while, and that seems to be all they need, right now.
Ted is still able to walk, slowly, from his RV to his big building (which is not zoned for human habitation, right now, so he can only be in it during the day). By the end of the day, he asks Tania to walk with him back to the RV, where he sleeps. His strength is ebbing slowly, and even his determination to stay on his feet as long as possible will carry him only so far.
So what do I do now, for fund-raising? Just add a little note to a personal letter, something like, “Oh, by the way, I happen to have a new responsibility right now, which adds an additional ten thousand or so to the current bills,” — such as the dues for Anthem, that wonderful, compassionate health insurance, and the advance payment for Neptune, which is indeed worthy of admiration (without irony, this time), the people who take over the body and place it in the sacred fire, and manage the things like death certificates, etc. — or perhaps I should not mention it at all to a potential donor, lest he (or she) feel overwhelmed.
Sasha knows what’s going on with Ted, since we don’t make a secret of any of the concerns we talk about every day, but his short-term memory problems probably protect him from some of the worst implications, some of the sharper stabs of emotion.
I think I’ll write more after Easter. Happy Pagan Easter, People!
Oh, yes. I should write a brief note about some questions people have asked, over the months.
1. My children can’t help with funds because they have no extra money, themselves. In fact, I often send a bit of extra to one or two of them who happen to be having trouble. None of my children have ever asked me for money, and they all work very hard at their jobs. They are all four exceptional human beings, compassionate, bright, creative and wonderful parents to my eight grandchildren. I’m immensely proud of them all. No, they can’t possibly manage $480 per 24 hours — plus.
2. Yes, my husband and I have had a documentary film made about us — and several other people we know. It will be out on DVD soon. This year, anyway. And — PLEASE KEEP IN MIND: People who are subjects of documentaries do not get paid. THEY DO NOT GET PAID ANYTHING AT ALL. When Sasha and I were asked to go to the various film festivals at which “our” film was shown (The title is “Dirty Pictures”), we had to pay our own way by air. We did get some help from a nice admirer to stay in a very gorgeous apartment in Telluride, Colorado. The maker of the film, Etienne Sauret, has become a beloved friend, but he can’t afford to pay us anything at all, since documentaries don’t make much money even when they are award-winners, while the cost of making them is huge. We could only afford to go to a few festivals, and that was quite an experience, but such trips are now impossible. Sasha can’t travel without caregivers, of course, so we enjoy the memories of the adventures we did have, and let it go at that.
3. Could we sell some of our land? Yes, we’re trying. We had a beautiful parcel on the market a year ago, and nobody looked at it. The economy had tanked. Recently, a good broker in town said, “Try next year. There’s no point in putting it out there right now. Wait a year or so.” I think he’s right.
4. That’s it for today. Love and blessings to all the Bun-Rabs out there.
May 12, 2011
I know Ann has not written in a while, so I thought I’d drop in for a little whisper. We are presently mobilized around Sasha Shulgin’s son, Ted. He is on hospice care here on The Farm. As Ann said to me earlier today (and I paraphrase): “Things are both intense and calm around here right now”. We are grateful for you love and your prayers and your donations. Thank you & Namaste
To Anybody who is still out there and still interested, bless you,
There is too much to tell you, this time, and I’ll have to keep it reasonably short because, if there ever was a time for getting enough sleep, this is it.
Ted, Sasha’s son, is dying, and the process is going very rapidly, thank Heaven. He’s in a hospital bed in his building, the Nuclear Bomb Shelter, having been moved out of the RV by the Hospice nurse, who said she couldn’t take care of him in there. He remained able to sign his name through yesterday, which enabled us to put his will together, read it back to him, and bring in two witnesses to add their signatures. That was the last worry, the last obstacle to peace of mind, and he managed to do it. We were congratulating ourselves and him, last night, on having gotten it done. Today, he lost the ability to speak and there was certainly no way he could have signed anything.
Sasha knows what’s happening, but his bad memory allows him to be diverted to some extent, when he falls into sadness. His son looks like someone liberated too late from Bergen-Belsen. (If you don’t know what that refers to, sign up for an adult course in Modern History, or whatever it’s called. You ought to know all the names of all those places. Okay, not all, but at least the major ones.)
Tomorrow morning, as I understand it, the Hospice people will allow Ted to be transferred to their house-of-last-days, Brun House, or a name close to that. There, he’ll be surrounded by beauty and peacefulness, and any of us family and friends can sit with him, but his meds will be in the hands of nurses, which will be a relief to us. We’re getting to the point where we aren’t entirely sure we won’t make a fatal mistake, under pressure. Not that we don’t want him to be able to leave his body as soon as possible, but we don’t want to be responsible for his liberation by making a mistake, as I’m sure you’ll understand. (When I say “we,” I mean Tania and Greg, who are incredible, with their strength and humor and love, and Glenn, who is always willing and unafraid of any challenge, and Nada, who is a new-found treasure, and Chime and Dechen, our Tibetan wonder-women, and Vickie, who laughs through the worst messes and can always manage the impossible if necessary, to name the basic Group here in the house; there are others outside, like Phyllis and Dr. Steve Ripple, and Lisa and Soozle, all of whom are Team Shulgin, even if some of them don’t have the caps. Yes, there are caps, thanks to Dr. Ripple.)
I remember my ex-husband, John Perry, Jungian analyst, saying, “I’m not afraid of death; it’s what might happen during the process of getting there that worries me,” or words to that effect. I couldn’t agree more. If I had to face what Ted is going through, I would arrange a really great party, with all my children and grandchildren and even greatgrandchildren, and good friends and all the people I wish I’d been able to get to know, and never did, and I’d do it while I still had the ability to think and talk and laugh, and I’d say goodbye and “I’ll be seeing you,” and those who had to cry could cry, and the rest could have a blast. Then, a few days later maybe, I’d step through that lovely door (I’ve seen it and it’s beautiful), and go home. But then, I don’t face the problem that some people have — believing that physical death is the end of their awareness. I know it’s not, and I know I’ve been through death and rebirth a large number of times, so my only fear is dying before I’m really tired of this round, and before my children have found their soul-mates (those who haven’t yet), and before I’ve written all the books I really want to write. Death itself is a going home, as I said, and I’ve felt the blast of sheer joy that comes from the other side, when a friend has been in awful pain, horrendous pain, and is suddenly free.
Okay, it’s time to stop making things hard for many of you — those who don’t want to think about death and dying at all, and think it’s “morbid.” Is there some way for you to stop being afraid of all this? Yes. Take a few good psychedelic trips — with good babysitters.
Sleep well and be as healthy and as happy as possible, and don’t be afraid of the bumps in the road. And most important of all —–
TAKE CARE OF YOUR TEETH!
Love and Blessings — Ann
May 15, 2011
Ted Shulgin, Sasha’s son, died peacefully in his sleep around 6:30 a.m. Sunday morning. I’ll write more in a while.
Love and Blessings — Ann
Sasha’s son, Ted — as I wrote a week ago — died at sunrise last Sunday. We all felt the tremendous weight lift from us, and there was a lot of smiling, along with some tears. He had gone in his sleep, which was a blessing, since we’d been warned that the last few hours might be difficult, and it was so good to know that he’d slipped away without struggle or fear. Our dear new friend, Nada, had been sleeping on the cot, a few feet from Ted’s bed, and there had been no sound; the only way he knew, when he woke to his every-two-hours alarm, was that the outline of the white down comforter no longer moved slightly against the grey background of the back wall. It was around 7:00 in the morning, which was the time that Ted had always left his RV and walked to the big building to start his day, rain or shine. This Sunday morning, there was bright early sunshine on Mt. Diablo. It was a lovely day.
Sasha knew his son had gone, but I wasn’t sure that the words had really, really entered his consciousness until the day had ended, and he hadn’t suggested going up to “see Ted,” as he always did some time after lunch. He was rather quiet, but he could be diverted easily by one of us any time we noticed him going inward. For once, his memory loss had a helpful side-effect, in that one of the major causes of grief — memories of the past with the person who has died — were fewer and less distinct, so the punch in the stomach, the knife in the heart sensations that new grief causes were softened, blurred, or sometimes not there at all. Thank heaven. Thank heaven many, many, many times over.
My own relationship with Ted had been fine until he had his stroke and quadruple bypass, about three years ago. After that, the anger that always simmered inside him was less deeply repressed, and became a habit, a way of life. Over the years, we learned to stay away from each other, for the most part, and we never argued about anything. He was very polite to me, because he had learned, the hard way, that when I got really angry, I could out-shout him, out-curse him, and that I wasn’t in the least afraid of him, which couldn’t really be said of almost anyone else he knew. The poor guy had been hurt very badly by a beautiful woman with whom he’d been in love for ten years. He knew she was a borderline — they had gone into therapy together and the therapist told them both, to their faces, that she was a borderline, but Ted managed to convince himself that he could rescue her, ignoring the fact that she didn’t really want to be rescued. She was expert at manipulating men, and she had him hooked for a long, long time. He even supported her two kids and gave her a job. He was a knight on a bloody white horse, and after telling him, once, that she was trouble and would never commit to a real relationship, I shut up because nobody is as deaf as a man in love. When he was unconscious in the ICU after heart surgery, she paid him a visit, and — within earshot of a nurse I had already warned to watch out for her — she said goodbye, and thanks for everything, and sorry it didn’t work out. (They had begun to have serious arguments and the relationship was breaking apart by this time.) She never phoned to see how he was doing, and it was clear that she knew he wasn’t going to be able to maintain her in a sufficiently comfortable lifestyle, and she was going to have to find a new sucker, so there was no reason to waste time following his progress — or his deterioration.
After that, Ted became an angry hermit, sarcastic, bitter and uninterested in relationships. A few of us remarked to each other that he seemed to be, in so many ways, trying to kill himself.
He smoked again (Pall Malls, yet!) and drank heavily.
He loved his father, though, and he had warm feelings for the two really wonderful women he’d been involved with earlier, before Blondie came along. I never asked him, but I’m sure he knew that he’d had two treasures in his life, and that he’d been a fool not to have married one of them.
So when I say to close friends that my relationship with Ted was at its very best during the last 48 hours of his life, they understand. Actually, it became a new relationship – an increasingly warm one — several months ago. Tania had been the one taking him to doctors’ offices and keeping track of his medications, ever since the cancer had returned. As she had been doing, at his request, during his first bout with cancer, during all the chemo treatments. The only thing I did was to find a new primary care physician for him, a few months ago, because it became clear that he wasn’t going to find one for himself, even though small tumors were beginning to push through the skin of his cheeks, and one was blooming on the inner part of his right eye. Tania was giving a lot of time to Ted, even though she had a lot of work to do for Sasha and me. She got no pay, of course, because Ted didn’t seem to have much money at all. Tania is a very loving person and compassionate, and she believes in Karma, as do I, but Ted was a difficult person to help. However, he began changing two or three months ago. He began to thank Tania for what she was doing for him. He expressed gratitude for what other friends were doing for him. This was unlike the Ted we’d known for the past three years. We made uncomfortable jokes to each other about Ted — “I’m beginning to really worry about him. He must be seriously ill to be acting so nicely.” He told Tania she was the sister he’d never had. I think that really touched her.
Since he’d first gone for treatments at the cancer center, Ted had held onto Tania’s hand when he was frightened. It wasn’t until I went with them to see the nice doctor who was prepared to tell us what the reading of the previous week’s Cat-scan told her about Ted’s condition — it wasn’t until then that Ted reached for my hand. We listened to the unemotional medical words and phrases that meant Death Sentence. None of us were surprised. When the lady doctor explained, carefully and sympathetically, why nothing could be done to stop this particular bullet-train, Ted asked those simple words that all of us have heard in movies, thousands of times, “How long do I have?” She said, “Not more than six months,” and that was that.
During the last two or three days, when Ted weighed a lot less than 100 lbs, and we got used to measuring out morphine and Valium when we took our turn sitting with Ted (I did less than any of the others), I discovered how to calm him down when he got restless. The word, “restless,” has a somewhat different meaning in this situation; it can mean anything from flailing arms and efforts to get out of bed when one shouldn’t, to groaning and jerking the head from side to side, or pushing away blankets despite the cold, or — whatever. I found that if I stood beside his bed and held his head against my chest and stroked his hair gently, his body would begin to relax. As long as I stayed there, doing what every mother loves to do to anyone’s child, no matter what its age, Ted’s exhausted body would be at peace. I told Tania, and she reported later that it worked for her, too. Dechen once or twice spent about an hour massaging the soles of his feet, and I think Chimmie also massaged his lower legs when he appeared to be in pain — probably muscle cramps.
So, during the last two days of Ted’s life, I was occasionally able to be the loving mother to him (I doubt that he had any idea who was by his bed at any particular moment, by then) — and that wiped out all remnants of hostility or resentment in me. He had become one of my kids and needed what I wanted to give.
I’ve felt no grief since his death. It was such a blessing to have him die in his sleep, to be free of that traitorous body. All I can sense from the other side is calm amusement and peacefulness. I have no way of knowing whether it is his soul I’m feeling, or some part of my own psyche, and it really doesn’t matter.
Oh, yes. Somehow, he managed to gather enough strength on the Friday before his death to complete his will and sign it before two witnesses. Tania and I had pushed — as gently but firmly as we could — to get it done that day. Our instincts were right; the next day he was delirious and could barely see, and he certainly couldn’t have signed anything. After that, we told him quietly that he’d done all he needed to do and he was free to go whenever he chose to. I called it “going home,” because that’s what I believe it is. Ted didn’t believe there is anything like consciousness after death, so I assume he was pleasantly surprised.
That’s it for tonight. Take care of yourselves, and keep your souls clear of anger and all the other dark things, as much as you can. The psychedelics can help.
Above all, learn to love yourselves. And — yes, you know what’s coming next:
TAKE CARE OF YOUR BLOOMIN’ TEETH!
Love — Ann
As usual, it’s too late and I’ve got to be up tomorrow earlier than I want to think about, to wash my hair and get ready for the book-signing at U.C. Berkeley bookstore.
But before I dash to bed, I must say something to all of you. We’ve spent months and months, now, fund-raising for Sasha’s home-care. It costs an extraordinary amount each day, as you know, but it’s worth it because the Tibetan women and our bouncy Brit are so terrific, so loving to Sasha, so determined to keep him getting stronger and keep him happy, I never spend more than a fraction of a second thinking about the alternatives. They simply can’t happen, so why waste time worrying about them! Not only that — all the good care — but seeing Sasha in the lab with Paul Daley, several times a week, is a joy. He’s so happy there, so full of puns of the most dreadful kind (okay, sometimes they’re actually good, worthy of at least two groans from everyone present), and so comfortable speaking his first language — chemistry — that it makes up for what’s been lost. Almost.
Anyway, my point is that I don’t really understand how we’ve managed to keep this going. It’s been a few 20’s here and a couple of hundreds there, and now and then some thousands, and the amount in the bank slips occasionally downward to where one sweats a little and tries not to notice. But somehow, it keeps coming sufficiently to pay the wonderful women day after day, and I sometimes feel as if it’s magic, or some kind of quiet blessing that keeps a safe cover over this house and the people in it. The passing of my stepson, Ted, has given us a bit more money – enough to last perhaps three or four months — and we hope that maybe a certain very wealthy and very caring gentleman might be able to put us on his philanthropy list next year, but experience has taught me not to take anything for granted, so I don’t think about that very often, either. We’ve been given no promises, so we can’t depend on anything like that actually happening.
In the meantime, I find myself thanking the universe, the Great and Smaller Gods and Goddesses, and most of all, each and every one of you. I can’t send written thank-you’s to you, but I can say here and now — you have my gratitude, my thanks and my love.
Blessings and good dreams —
Ann (and Sasha)
p.s. You will please note that I haven’t said a word, this time, about — t***h.
Dear Patient People,
This bug is taking a hell of a time getting out of my system. I have a good day, then the next is full of coughing, and getting across the miles of a Safeway to get to the dairy section causes shortness of breath. Oh, well. A friend of mine told me it’s called the “Hundred-Year Cough,” so I just have to turn on the patience switch and put up with it.
The nice, wonderful, kind things that have happened around here are more cheerful to report. Before July 4th, which was also our 30th anniversary (I can’t believe it’s been that long! Fantastic!), we had a bunch of volunteers, organized by Tania and Greg, who came to manicure the outside world. Lots of tree branches which were leaning lovingly over the roof (fire hazard) got cut, then those same branches, now lying all over the ground (also fire hazard) got transported to a big dumpster; over-enthusiastic ivy got trimmed, plants were placed here instead of there, and patios were swept clean in preparation for barbecue activity on the Fourth.
I’ve never seen such amazing, non-stop work, most of it in considerable heat. I always feel guilty, seeing hard-working people doing such things for no pay, especially because I was unable to really interact with anybody, being at the height of this bronchitis plus laryngitis, and worried about giving it to anybody else. When I have a chance, I’ll get Tania to give me the full list of these terrific people, and acknowledge them in print, first names only. In the meantime, THANK YOU IMMENSELY, all of you.
The strange post-death processes and problems that have followed Ted’s passing have become more and more odd, not less. What it boils down to is that Ted was a committed survivalist, and planned for years and years to survive — along with his Dad (and probably me) — when the economy went blooey. Most people who knew him tended to respect his knowledge of economics, but gradually tuned him out, because for at least 25 years, he spoke of the disaster to come, and he expected it momentarily. Of course, life and economics being what they are, the collapse had to come eventually — and did — but not for 25 years. By that time, Ted had undergone a small stroke (perhaps not as small as we thought), along with his heart failure and the subsequent quadruple bypass, and on top of that, a complete betrayal by his 10-year girlfriend (he had taken care of her and her two teenage kids for all that time, despite knowing that she was a borderline). After that, he closed in on himself and began hoarding coins. During the last year or so, he sold some of his coins to get cash on hand. His very successful fastener company had failed, like millions of other small companies, due to the bad economy.
Ted had given the okay to an old friend from college, who had gotten into bad trouble when he became bi-polar, when that friend asked if he could come over four days a week, just to hang out, with the permission of his “safe-house,” or whatever one calls places where people without a record can be put by the justice system. They had told him he was well enough (he was on lots of meds) to be trusted to spend most of these days in some place where a friend could keep an eye on him. Ted, I assume, was the only person he knew who was in a position to agree to this plan. He had a thriving business, but he managed it from his home, and — let’s call him Bobbie — could sit around and talk or just keep Ted company. Ted was a very kind person, at that time, and a sucker for a good story. I happen to like that in people, by the way. I always like people who are willing to give others a chance, and often a second chance, as opposed to the people who automatically say No, mostly because they don’t want to be inconvenienced. I understand that feeling very well, too, but the suckers are closer to my heart. On the other hand, giving some people a third and fourth chance is just not wise, and not to be admired, because it runs up against my first rule of life: keep your survival instincts sharp, and don’t be a fool. Or something like that.
Anyway, Bobbie was a loser, but he was Ted’s problem, not ours. He had lunch every day with Ted and the rest of us, but never offered to contribute anything to the meal. He also never got up to help anyone with a heavy load into the house — he never picked up a bag of groceries, for instance — and we all just shrugged and didn’t expect anything from him. He owned a couple of houses, I was told, and had his own car.
After Ted died, one of the first things Bobbie said to us — the next day, I think — was, “I would like to look around here (Ted’s huge barn-like structure), because Ted told me he was leaving everything in here to me.”
“Oh, dear,” we said. Then Tania explained, gently but firmly, that Ted’s will didn’t say anything to that effect. In fact, it didn’t mention Bobbie at all. “Sorry, but we have to follow the will, Bobbie.” The minute Bobbie left, which was soon after that, we changed the locks on the barn. Then we expressed sincere gratitude to good ole Bobbie (in absentia) for having made it so perfectly clear, so quickly, what he was, saving us a great deal of guessing. I think Tania did leave him a couple of farm implements which we didn’t need, and which he had said he would like to have.
Sad to say, Bobbie had introduced Ted to a friend of his — Mr. Crooks, l’ll call him — who was a coin broker, without a license. Ted, after his second bout with neck cancer began, when his mind was doing some odd things, now and then, apparently sold some of his more valuable coins for cash, which he kept in his desk drawers. He paid for ordinary daily needs with the cash. Mr. Crooks bought many of the coins, we gather, and Ted came to trust him as much as he trusted Bobbie. During the last couple of weeks before his death, Ted made out a careful list of many silver coins, some of them valuable, and gave the coins to Mr. Crooks, with the written and verbal instruction that he was to evaluate the collection, with a view to selling. If he sold them, he was to take a certain reasonable percentage, and give all the rest to our family trust. He knew we needed $480 a day to take care of his father, and he loved his father very much. Thank heaven, the paper he signed, and had Mr. Crooks sign, was kept here, where we found it. Within a week, Tania had found Mr. Crook’s phone number, and left a message asking to be brought up to date regarding the coins.
Mr. Crooks phoned in reply, and proceeded immediately to shout and yell at Tania that he knew better than all the rest of us did, what Ted really wanted done with the coins, and that, moreover, he had a lawyer, and we should get one too. He hung up, leaving poor Tania, who was still recovering from the last couple of weeks caring for Ted (we all pitched in, but she was the person he wanted near him most of all), in a state of shock and disgust. Which, according to some wise people we know, was probably the objective. In these situations, our friends said, a person who wants to benefit much more from the death than he was meant to, will sometimes act in such a crude, hostile manner that the distressed family will decide that they don’t want to deal with him at all, and turn away, leaving the ill-gotten gains in the nasty man’s hands.
However, that’s not happening in this family. We now have our own lawyer, a very nice young man whom we’ve known for several years, hot on the trail. We have no idea how much the collection is worth, but in our situation, we can’t turn down anything that may help pay our caring ladies, even if only for a couple of months.
All in all, this little incident has reminded all of us of a simple fact: we are immensely lucky in our friends and acquaintances. We shouldn’t — and we don’t — take any of them for granted. There are, of course, many strange and not particularly admirable people involved in this world of consciousness-exploration, but the majority of them — the ones we’ve met — are good, honest, thoughtful, caring and completely trustworthy people, and all of them have courage, which is a necessary attribute for anyone determined to explore the depths of the human psyche.
So I toast you all — with Korean ginger tea — and I honor you for your curiosity, your empathy, your capacity for caring, and your integrity.
Blessings and hugs from the very lucky Shulgins……….
Dear People of the Tribe,
Sasha feels very well, most of the time, but today is a low day for him. There’s a sensitivity to touch on a part of the lower right leg, but no continuing pain and no lesion, so we’re not too worried. Will take him to a dermatologist next week, to check a lot of small red places which have popped up on his back and elsewhere, just to make sure all is well. His spirits are not good, today, although he smiles often enough. Oh, yes. His right hand has been showing unexpected weakness since he woke up. He hasn’t been able to make a real fist for most of the day, but this evening the strength seems to have improved, though not comparable to the left hand.
I came across a DVD made years ago, showing Sasha giving a lecture to a small group of psychologists at a private institute or teaching college in Berkeley — can’t remember its name, but I remember the place. Sasha was invited there every year for many years, to give a general lecture about psychedelic drugs. I sat toward the back of the audience, which is what I usually did at Sasha lectures, since it afforded me the maximum viewing of the audience as it reacted to what he was saying. In a place like this Berkeley college, there weren’t usually any surprising responses, since he was pretty much singing to the choir. On the other hand, one might learn a great deal sitting in an audience of law enforcement people, maybe for a lecture about drug policy and the law, which would attract people working for the DEA, among others. Being at the back of such an audience would create a combination of enjoyment and small spurts of fear in me. For one thing, there would be quite a bit of quick looking around, on the part of many men as they took their seats (these audiences were mostly men), looking for familiar faces of friends, and also for somebody who might be Dr. Shulgin’s wife, who might see more than she should of reactions to what her husband was saying. Law enforcement people on all levels of power tend to want to keep their feelings unavailable to civilian prying. Even more than they want to keep them unavailable to their peers and superiors at work. The result is often a version of what book-writers call “the stone-faced look,” familiar to all of us who enjoy watching murder mysteries on television.
My job, as the other half of Team Shulgin, was to sit quietly in my seat, scribbling as discretely as possible in a notebook (remaining aware of possible curiosity on the part of seatmates to my left and right), looking as much as I could like just one more Justice Department cadet, earning extra education credits, until the talk by Alexander Shulgin began. After that, it was simply paying attention to body language, to the profiles of men reacting — often with contempt or plain hostility — and occasionally scribbling in my notebook. Sometimes there were surprises; many times I found myself delighted by people seated before me who were nodding vehemently, often to themselves, at a point made by Sasha. I sometimes caught sight of older men in the audience who seemed as interested as I, in the responses of others in the audience. They were keeping an eye out, so to speak, for reactions not necessarily approved of back at the home base. Or maybe not. I’ll never know.
What was the advantage to me — or Sasha — in knowing how members of a particular audience might be reacting? After all, we seldom knew by sight any of the people in the audience. It was simply important, from our point of view, to get a feel for the intensity of hostility in any “establishment” audience. And to pick up indications of friendliness, if any. Any large group of people whose job was to enforce laws — good and bad — would reveal feelings which they knew to be acceptable by their friends and co-workers. Being aware of what feelings or emotions were currently okay in such a group could be valuable. As the years passed, there were distinct changes in the ways these groups reacted to Sasha, and noting these changes — which in general were positive — gave us little bits of information that helped us understand what was happening in the larger society.
I didn’t intend to get into this subject tonight. In fact, I was thinking about finding the DVD and wondering if I should show it to Sasha and to our Tibetan angels. And why I haven’t shown it to anyone yet.
I guess that’ll be the next note, maybe tomorrow.
Love and Blessings — Ann
Dear Patient and Accepting Tribe Members,
Yes — the tape of Sasha lecturing. I played only the first couple of minutes of it, after discovering it in a box (everything in my life — and Sasha’s — is sitting in a box somewhere in the house waiting to be rediscovered) then turned it off and sat for a moment, thinking about playing it for Tania and our Tibetan ladies, and Sasha himself, and what it might cause in Sasha, particularly. The women, of course, would be delighted. Tania would be feeling a mixture of pleasure and sadness, because she’s known him for many years, and saw him at his best and brightest. She suffers from this — (expletive deleted) — dementia thing, in some ways, more than I do, because her memory of Sasha as he used to be is clear. My psyche has blessed me by removing most memories of the way he was “before,” so I can be with this present reality without comparing. Of course, the memories of the past are there, closed off but available, should I really need to experience them again, but I won’t need to do that until I get to work in a serious way — with a serious schedule — on Book Three.
Maybe that’s one of the reasons I find it so hard to get back to the book, always finding writing jobs I have to finish before I can pick up where I left off on it. I’m going to have to work that one through, because Book Three needs to be continued and finished, and it’s going to take at least the best part of a year, working steadily, to do it.
Back to the tape. Our Tibetan women will find it an extraordinary experience, seeing Sasha at a blackboard, talking rapidly (he was always being asked to “slow down,” during talks, which he found hilariously funny), bright and sparkling (his hair, that day, was at its psychedelic best, clouds of white substance shooting out from his head, obviously alive and engaged), and they will laugh and nudge Sasha and say things like, “That’s YOU, Sasha! Look, look! Can you see?” Sasha’s sight works mostly on the periphery of the visual field, since macular degeneration has destroyed much of the center. He will probably not be able to see himself on the screen, but he’ll be able to hear what’s being said. Will it hurt him? Will he have one of those moments that we dread, when he’s aware of what he used to be and isn’t any more? If so, then I’ll have to stop the tape and play it later for everyone else. But how to tell ahead of time? It’s not inevitable, but why take the chance?
I’m going to think about this a little longer.
By the way, the weakness in the right hand was there again this morning (and yesterday morning), but it seems to repair to a great extent during the day, though not entirely. The ladies are putting him through his paces with the arm and chest exercises, just in case that helps. The weakness itself appears to be improving slightly each day, and I’m not going to report it to Dr. Abramson until we’ve watched it for a few days and can get a general idea of what direction it’s going in.
Sasha’s core Self is loving and warm and very inclined to be funny, especially with word games and word twists. He gets irritable, but not often, and always for good reasons. In the lab with Paul, he seems happy and engaged, and his remaining chemistry brain-cells get activated. He gets tired after a couple of hours, but that’s to be expected.
He is frail, though. It’s hard to be sure, when you’re with him every day, but the frailty is quietly increasing, tiny bit by tiny bit. Our girls keep him walking several times a day, and spoon feed him only when he gets forgetful about feeding himself. They are great cooks, and can turn out extraordinary meals — mostly Indian cooking — without looking at any kind of recipe. Sasha is being fed amazingly healthy food, thanks to Chime and Dechen. May their tribe increase (and may their descendants reclaim their country — Tibet is for the Tibetans, damn it!)
That’s it for today, unless I think of something vital.
And thank you all for what you are and how you’ve been helping us. Without you, I truly don’t know what we would have had to do to keep Sasha safe and as happy as possible. Thank you very, very much.
Love and Blessings ——- Ann
September 15, 2011
A sweet tidbit: Sasha and Chime and I were just sitting around the kitchen table. I asked Sasha to repeat something that he had just said and he said “Oops… can’t remember”. I said “How does that feel, Sasha… to not have all that stuff running around in your brain anymore?” Sasha said ” It’s very freeing. I am in shy amazement of the world in front of me that I haven’t touched yet.” ♥ gregM
The Incredible Tribe,
I hope all of you are well; I hope many of you are experiencing joy, now and then; I hope that those who have not had joy may have experienced contentedness and laughter several times recently; I hope that those who may be in grief or pain, or both, may have friends who can bring supper for a few evenings and hugs several times a day. May all of you be blessed, whether you’re aware of it or not.
As for Sasha, he’s well in body and pretty contented in soul, thanks to his helpers and the drug called Ergoloid. He’s sleeping much more than he used to, years ago. He used to be wide awake after six hours of sleep; now, he sleeps as long as ten hours a night.
The documentary called “Dirty Pictures,” created by Etienne Sauret, one of our favorite people in the cosmos, will finally reach San Francisco on Friday, October 14th. It will be the opening film of the documentary festival at the Roxie theater, and I haven’t the least idea how to get tickets, but it’s probably as easy as getting tickets to other programs at other theaters. I’ll call Etienne in New York and ask him if there’s anything I ought to pass on to all of you. We (most of the people who are in the documentary) will be on stage — I think — after the 7 p.m. showing, for Q. and A. The first thing I’ll tell the audience (it concerns me because of all the fund-raising we do for Sasha’s helpers) will be what I’ve mentioned many times to this tribe, that being in a documentary film does not get you any kind of pay; in fact, you usually end up paying a lot of things out of your own pocket. Like, lunch. Over the years, every time somebody (and their crew) has been here to do an interview, I’ve always prepared a pretty big lunch, because interviewers, whether of the movie type or the journalism type, always have a grab-it-as-you-go breakfast, and never think of lunch until they’re starving. And, although the money adds up, it’s a good idea to feed these busy people, because they’re more inclined to tell you their own stories (often of their own psychedelic adventures — in the very distant past, of course) when they are relaxed and their tummies are full.
Another cost that comes out of your own pocket is that of the means by which you can manage to attend a film festival at which your (it isn’t, but you think of it as yours, anyway) movie is being shown. The documentary film maker always wants you there, along with anyone else who appears in the film, so that all of you can get up to the stage and sit in a row, along with the producer/director, and answer questions from the audience. It’s more fun that way, of course, than simply seeing “your” movie in a theater, along with the rest of an audience of strangers in the dark. So you dig into your savings and you make it to as many of the big film festivals as possible.
It’s completely different from a Movie-movie, which pays its stars and even the odd locals who appear in crowds, and pays them pretty well. There is nothing more aggravating than being in our situation, not broke, but continually asking people for money to pay wonderful care-givers, and then to hear somebody ask, “Since you’ve been in a documentary, why do you have to raise more money all the time?”
On the other hand, lest you think I sit around and mutter disgruntlements for hours every day, please be advised that I am nothing if not grateful (anyone who can wrap his mind around that double or triple negative is a better man than I) — I mean, I am truly grateful to a dangerous and sometimes cruel universe for the life I’ve lived, especially the last half of it. I’m incredibly lucky and blessed in so many ways, particularly in having been — and still being — with Sasha. He is truly a sweetheart, a man with heart and empathy, as well as extraordinary intelligence. Even now, with the dementia, he keeps people laughing at his word-games and puns, and his often to-the-point observations, and he loves me without reservations, as I do him. We met late in our lives, and it was worth the wait.
And I’m blessed in the children I have — four of the most true and integrity-filled human beings (there must be a better way of saying “people who have integrity”) I’ve ever known; warm and eager to love others, sharply intelligent, caring and excellent parents to their own kids, and pretty damned good-looking on top of that!
And, after them, our friends. I think Sasha and I must know a large percentage of the world’s best humans. The list begins with those close to me, who help me every day — Tania and Greg, and then Glenn, and Paul and Nancy and — and we keep meeting new ones. I don’t know many people who can claim to be as lucky and blessed as we are.
Well, considering the fact that I’ve spent most of today feeling quite depressed, this has turned out to be a very nice experience, talking with you, and I’m certainly ready to change my vibes, my energies, and maybe get something written on Book Three. Oh, yes. Now I have Mondays as writing days — for Book Three. If I don’t get down to work on it now, it’ll never happen, and I have a wealth of stuff to get onto paper. One day a week is just a beginning, but it’s been good so far, and eventually, down the line, I’ll put aside hours during at least five days a week. It should be finished late next year. Wish me luck; I’m an incredibly lazy person, probably due somewhat to chronic mild depression, and I’m not a self-starter by nature. Oh, well — enough nonsense. Thank you for being there.
Blessings, Namaste — Ann
Dear Friends/ Dear Everyone,
This is the time for me to answer some questions that have come up recently, and which should be explained before we ask for any more funds. I realize that not everyone wonders the same things, but I think the questions are legitimate, and I would want to know the answers myself, if I were to be asked to help somebody with my money.
First, of course, is something I have talked about before — quite recently — and that is the fact that anyone who has been the subject of a documentary — as Sasha and I have been — cannot expect payment of any kind. Documentaries are not like true “movies,” and people seen in them are not paid. The reason is, simply, that the people who create the documentaries are often highly creative, but only a handful of them manage to achieve fame, and even they have a hard time making enough money to pay their photographers and their editors, not to speak of the miles of film needed for even the shortest documentary.
The next question that has been asked, in one or another form, is basically this: “How is it that a man as famous as Sasha Shulgin, a man who has created so many psychedelics that are used all over the world, how can such a man be in need of money?
Well, Sasha made a decision, many years ago, that he would work above-ground; that he would not create an underground lab, and that he would not make consciousness-opening drugs (or medicines, if you will) for the counter-culture, but that all his work would be legitimate and that he would publish in professional journals and books. His purpose has always been to discover, and then to share his discoveries with the world. He was never particularly concerned with making money, and in fact told me and his friends that he felt money often distorted one’s life and one’s discoveries in a way that he didn’t want to have happen with the psychedelics. In order to make money with his drug discoveries, he would have had to sell them illegally, and he was not going to do that.
As a matter of fact, when I first knew him, he told me that he didn’t have any insurance that wasn’t absolutely necessary — like life insurance — and that he believed in being self-insured. At the time, it seemed to make sense. Everything he said and believed in made sense to me, because I loved him and believed absolutely in his intelligence and common sense. After we were married, I continued to let things go the way he wanted them to go, even though he would have taken out life insurance if I had insisted, and of course, I should have insisted.
To make this as concise (and short) as possible, Sasha made money on his drugs only one time, and that was when Aldrich Chemical Company asked him to make a series of compounds for them. He did so, was paid, and went back to working for himself. Our main sources of income were his teaching at the various colleges and universities, and eventually income from two cell phone tower companies who made a contract with him and his son, Ted, to build towers on our land. He was so delighted at the idea of getting a monthly payment from one company, and a yearly payment from the other, that it never occurred to him — or Ted — to consult an attorney to make sure the contract was fair and reasonable. It was the kind of arrogance that often causes trouble for highly intelligent people who take for granted that they can out-think any mere company executives. The contracts, we now know, were for just about the least these companies could possibly offer, and gave them all the power and left none in the hands of the landowner. Or his son. Or his wife. His wife (me) should have had the sense God gave baby kangaroos and asked some questions, but I didn’t because I always left money matters in the hands of the man I totally believed knew far more about business than I ever could, and would know what to do.
Sasha and I took many trips, but most of them were at the invitation of somebody putting together a conference about consciousness and psychedelics, or psychedelics and spirituality, or consciousness, psychedelics, spirituality and the future. They paid our way in return for our giving talks and being available to those who attended. This was a great deal of fun and we saw many marvelous countries and talked to thousands of truly fascinating people and we were stiffed only twice –both times during the same trip. We went to East Berlin first (the organizers never paid our expenses, although they kept promising to do so for literally years), and then we went to Dublin, Ireland, to speak at a university (they never paid us either, and haven’t bothered to promise to do so, and we haven’t bothered to keep asking them). My memories of East Berlin are very rich; we learned so much on that trip, and met so many really interesting people, it was almost worth the considerable loss of income. The only thing I can say about Dublin is that it rained constantly and the whole city smelled of Guiness beer.
When we were older, Sasha and I sold some of our Dow Chemical stock to pay for a couple of Harvard sponsored ocean trips around the Greek Islands and Turkey. Those were a joy. Since I am absolutely certain I led a few of my former lives in Greece, France and England, and since I grew up in Italy in this life and love that country immensely, I remember all those experiences with real joy. And if Sasha could remember, he would tell you the same thing.
Our Social Security doesn’t amount to very much, although I am grateful for it. Sasha gets over $700 a month, but I get only something over $300, because years spent rearing children do not earn social security points — or didn’t when I was young.
Sasha’s carefully saved money in the bank, and most of his Dow stock, have gone to pay bills that he never really believed he would need to pay — medical bills. Sasha spent his whole life until his 80’s being as healthy as a human being can be. He never seemed to get colds or the flu, and he had one single surgery when a child, which was an appendectomy. He told me when we first met that he believed that people got sick only when they wanted to (unconsciously, of course) or needed to. I told him that he should think that one through very carefully, and gave him examples of human beings (babies, for instance) who obviously didn’t “want” to get sick but still did. He continued to believe that he would never get really sick — enough to have high medical bills — because he never had and saw no reason why he ever would. (Shades of Steve Jobs!)
By the time he had begun to lose his sight and could see the beginnings of memory loss that went beyond the normal amount we all experience, it was too late to get life insurance or make other kinds of plans which might increase our income. I pressed for putting a beautiful five acres of our land on sale, which we are doing yet again, although most brokers say to wait a couple of years until the economy has improved. We have managed to pay for our wonderful Tibetan — and one Britisher — women who take superb care of Sasha through the funds that all of you have given us, and for which we feel more gratitude than you can possibly imagine.
I am still a believer in Sasha, because the essential man is still — dementia or not — the person he always was: loyal and loving and tremendously life-affirming and funny as hell. He still makes good jokes (and lousy ones), and he loves me the way I always wanted to be loved. He wasn’t clever about money, but what he did care about was — and still is — chemistry, and the fabulous things you can discover in the world of molecules, and how deeply satisfying it is to send what you know out to the world in the form of books, and how moving it is to hear from hundreds and hundreds of people in all the countries of the world (except Antarctica) writing to tell you how you saved their lives, or marriages, or sanity. Sasha was, and is, a truly good man, a nice and kind man, and he deserves the best we can give him at the end of his life. He has a dark side, but I’ve been able to live with it without any regrets, as he seems to have been able to live with my dark side without more than an occasional shrug. His I.Q. was equal to Einstein’s, but he’s been a much sweeter person than Einstein ever was. And, unlike most of the extremely high I.Q. people in this world, Sasha never had the slightest touch of malice or cruelty. He’s been a good man to know and love.
So, this is my attempt to answer some questions that have been asked — some out loud, and some quietly. I know I must have left out a lot, and I don’t mind answering anyone who wants to e-mail me and ask.
Blessings and very much thanks — Ann
Where did you all go? It’s been at least two months — maybe more — and I’ve been lurking around this site, hoping to catch a glimpse of somebody, maybe find a note pinned to a blackberry bush, telling me where to go, or where you all might be doing something together. The thought actually occurred to me, finally (yesterday to be exact; 2:30 a.m. to be precise), that maybe I ought to write the note I had been looking for, and someone out there might find it and realize that I was looking for all of you. Of course, I don’t know who you all are, so it’s hard to imagine how we would look for each other(s), or how we would recognize each other once we’d found somebody we thought looked like someone we might be looking for. Know what I mean?
(You have now been exposed to a portion of an episode of Nanna’s World of Fantasy.)
That should help explain the silence of the past two months (or is it three?). Never mind.
Xmas came and most of us survived. We caught a cold that came to be known as The Cold That Never Goes Away, and some of us are still coughing from it.
The Republicans — or Republicans now calling themselves Conservatives — began to be really funny, though probably not intentionally.
The famous and wonderful singer to whom I had written a plea for financial help last year (2011), knowing that he had admired Sasha’s work for a long, long time, sent word through his very nice secretary that he couldn’t do anything for us this year, since his (charity) money had already been assigned by the people whose job it was to assign his disposable money to whomever it was that was assigned to receive it.
I continued getting reminders from various good people that if I actually got to work and wrote Book Three, it would undoubtedly make enough money to pay for Sasha’s round-the-clock care for a year or more. I always replied, “I know, I know.” And Tania and I would set up a plan involving her answering the phone for one afternoon a week, while I wrote the book. It worked very well for a couple of weeks, then Xmas knocked on our door and said, “Ahem — you haven’t forgotten me, have you? Or your sweet grandchildren — eight of them, isn’t that so? And didn’t I hear that you have two great-grandchildren this year? Oh, sorry — I didn’t mean to talk so loudly.”
For a while after that, everything is a blur in my — and everybody else’s — mind.
Things come back into focus around February 14th, and the year is 2012. There is a smell of chocolate in the air. The fruit trees have exploded into buds and flowers, despite the fact that we are all waiting for the rains of winter to arrive — and stay for a while. This drought bodes ill for Burning Man; it means the possibility of dust storms again every day, maybe several times a day. Most of our favorite people are planning to be there; we can’t be, obviously.
Sasha is doing beautifully. His hearing has gotten a wee bit harder, but not yet bad enough for me to insist he make use of his wonderful and expensive hearing aids. He stopped using them a year ago, and we decided not to make a fuss about it, but if he starts asking, “What did you say,” too often, there will be a rethinking.
Sasha had pneumonia for about two days, but reacted almost immediately to antibiotics and returned to health within the week. Our Tibetan women cook immensely healthy meals every day, and at night, his feet get inspected as if they were vital ingredients in a successful space launch; not a tiny piece of dry skin gets past the eagle-eyed care-person. No ulcers will ever be allowed within fifty miles of the Great Alchemist’s feet, not again, not ever!
Sasha’s body is obviously becoming a bit more frail, but his spirits are so good, I suspect they keep the machine going. His favorite place to be is the lab, which he goes to whenever Paul comes over, about twice a week. The rest of the time, he likes to sit at Starbucks, watching cars and people with one of the women by his side. He seems to have become a mascot for a small group of very elderly gentlemen — and one nice lady — who visit our local Starbucks almost every day. Greg got some Starbucks cards for all of us, which make things even easier.
For now, I hope this will be a sufficiently informative note to keep you happy and forgiving. I’ll continue soon, because there’s a lot to tell you.
I hope you’re all happy (or reasonably contented) and healthy. And that your own private economy is improving. If yours improves, ours will also improve, we hope.
With much love — and Blessings — to all of you. Ann
Hello, Peoples of the World and Occupants of All Ocean-going Vessels,
As usual, Life happened during the past two months or however long it’s been. There has been a family problem that’s kept all of us in a state of tension and — well, you know how family problems are.
Sasha is doing very, very well. Most probably thanks to the Ergoloid, his memory has improved (slightly, but definitely), and the “sundowning” has almost disappeared in the evenings. I tell everyone who’ll listen to me about hydergine (remember, it was discovered by Albert Hofmann), and advise them to insist to their often-reluctant doctors that it is available (under the Ergoloid name in this country), and that — unlike Namenda and Aricept, the usual meds given for dementia — this one actually works!
Our two Tibetan ladies and one Britisher are with us, and I hope they’ll remain with us for the rest of Sasha’s life, and the fact that we can pay them is due to all of you who keep sending small, medium and large amounts of money, check or cash or whatever, and I hope every one of you realizes that you are directly responsible for Sasha being healthy, content (occasionally really happy), and well and lovingly cared for. Without all of you, this story would be a tragedy, like millions of other families who don’t have enough money to keep a beloved parent or husband/wife home and in good and loving hands. Denmark, I believe, has a wonderful system of care for the elderly; why can’t we develop one here that works?
Sasha gets to be in the lab with Paul twice (sometimes thrice) a week, and when Paul is working at his other jobs, Sasha likes the local Starbucks. He and his helper lady go down — just a few blocks from here — and join a bunch of older citizens who gather there every day, it seems, and talk and share stories and ask the pretty Tibetan woman about her Tibetan way of life, and they eat and drink and pay with the Starbucks card and have a great time. Thank heaven for that particular coffee shop. They never push people out or ask for their table, or any such ways of increasing profit, and I have to assume that this is the policy for Starbucks generally. If so, they are good citizens and make themselves welcome in a community like this one (pretty laid-back and friendly).
The ladies are walking more than usual with Sasha, and doing exercises for his arms and legs, because Dr. Abramson (may his tribe increase) wants more muscles. The exercises have always been part of his daily routine, but this slight increase is a push to make Sasha steadier on his feet, and less fragile generally. His birthday (June 17th) will be his 88th. No, really? Let me figure that one again. Yes, it’s true. Eighty-seventh! Incredible.
I was going to go into a long essay on The Shadow — since my family problem involves an explosion of somebody’s shadow. It’s nobody I’ve ever mentioned before, and I think that right now, I don’t know how this is going to play out, and what I’m going to learn from it, so I’ll keep quiet until the Lesson — whatever it turns out to be — is clear.
In the meantime, love your family, be there for them, as much as possible, but also remember to love and respect yourself and honor your own needs. And accept, yet again, our thanks for all you’ve done — whether it’s been money or words of support —
Blessings — from Sasha and me and our extended family…….