S Clay Wilson was trying to get home from a friend’s house November 1, 2008, the night his life changed forever. We will never be certain if he fell or was attacked, since he has no memory of it. The numerous injuries on his face and head made him look like he was beat up. Two good samaritans found him unconscious between parked cars, face down in the rain, and called an ambulance. (I have tried to find them in order to express my gratitude for saving his life, but have had no success.) He’d suffered a Traumatic Brain Injury, bleeding in three hemispheres of his brain. He spent three weeks in a coma, and we had no idea how severely impaired he was for many months. Once he began to speak again we realized he hadn’t just “awakened” to resume life as it had been before.
We had a lovely afternoon on Xmas, opening presents in the living room together, and receiving calls from friends & family. Wilson was especially happy with the flowering bouquet of colorful socks I managed to find for him online. After his injury, he went through a period of several years where he only wanted to wear black socks. So unlike him! But this year, he has returned to his affinity for the outrageous ones he used to prefer, so I got him a fresh batch, as well as a new pair of slippers. It doesn’t take much, really. The older we get, the fewer things you want. This apartment is already filled to the rafters from years of collecting. These days I’d rather divest than continue to acquire anything beyond what we actually need. When I moved in with him in 2000, he noticed that I had many things that he, too, already owned. “We have two of everything!” He declared with joy. Now, I’m not so excited about that any more. I’d like to simplify!
When we tired of hanging out in the living room, I struggled to my feet off the couch, grabbed onto the walker I’ve taken to using of late, and said “Come on, honey, let’s go in the back and watch a movie.” I turned around to see if he was following me, and discovered he couldn’t get up out of the chair. This happens sometimes, but not very often any more. There was no way I could pull him up myself like I used to do. My back is much too fragile now, and I would injure myself trying. Good thing I realized there were some people smoking pot on our front porch! I hobbled to the door and asked them in to help. They were disoriented a bit for a second when they first entered the living room, looking around in awe at all the art on the walls, and the wacky stuff festooning nearly every surface. “Wow” one guy said “I really like your apartment!” They approached Wilson then, who seemed momentarily wary of these strangers. “This is Wilson” I remarked. “Well Mr. Wilson” one said,”We’re just going to help you get up”. He stretched out both arms, and they gently raised him to his feet. It turned out they were visiting our neighbors, and had heard of him. I laughed, because I was fine with asking strangers in to help! If we get trapped in the furniture again, we might have to wait til Rena came back to work. Not a pretty picture. I’m going to have to get someone to put the new legs on the couch & chairs that I bought three or four years ago, as I’ve let it go too long and am now too crippled to do it myself. They would raise them up so we could get up under our own steam. It’s such a joy getting old, eh?
Wilson has been losing ground a little more this past year, I’m sorry to say. He is no longer as talkative in the evenings, and has lost a great many facial expressions. Sometimes he won’t even answer a yes or no question, like “Do you like this movie?” Or “Is this comfortable?” Instead, he will frequently just stare at me. I have to ask a question several times to get an answer out of him. It’s frustrating, and I remind him sometimes that I wouldn’t be repeating myself if he would reply the first time. Then, he will sometimes reveal a tiny smirk in the corner of his mouth, which lets me know that he understands, and is just messing with me. Still playing perverse pranks! And getting extra attention.
Thanks to all you Marc Maron fans out there! He talked about Wilson on his WTF podcast a couple of times in the past few months, and retweeted some of my tweets. He has so many thousands of followers that we had an increase in donations to the Trust, especially last month. It really saved us, and I am so grateful. I am a fan of his as well, and was really pleased when I saw his quotes on the inside flap of Wilson’s biography, “Pirates in the Heartland”. Volume Two of his three-volume biography will be out before summer 2015, by the way. So the saga continues. Thank you so much, Marc, for keeping Wilson on people’s minds. We are pretty much hermits, so receiving donations and good wishes from people all over the world truly brings them to our door.
Ken Weaver, of the Fugs, came to visit for a couple of hours on Christmas Eve. It was great to see him. He came all the way from his home in France. He gave us each a sterling silver skull ring from his own collection of jewelry he’d been wearing for years. They are really gorgeous. He is one of the people who can really make Wilson laugh. He is an incredible character, as well as human being. It perked both of us up to be in his company! I just wish he could come over more often. But he does call frequently and tell us all about his travels with his lovely wife Maxine, so we get to live a little bit vicariously through him.
I hope you all have a happy, healthy, and prosperous New Year! Thanks to all for your generosity and positive wishes.
We had fun on this sunny day, spending it in the back yard with some old pals. Ace, Rick, Eugene, Carlson, Marilyn, Sabeth, Kathi & the Johnsons joined Wilson for some food, iced tea, cake & ice cream. I put a little blonde bathing beauty on top the cake, after first painting polka dots on her bikini, and messing up her hair. I put 3 candles on it to signify 73 years, and they stayed lit til he blew them out. John Riddell also made the trip in, bringing him a hand drawn card which Wilson especially liked. Sabeth brought a binder filled with photos from the years they were together, which he poured over several times later that evening. It was a lovely day.
Thank you, Justin Green, for putting a Birthday Tribute on your blog. Anyone mentioning Justin’s name when donating to Wilson’s Special Needs Trust, received a print from him. It was just the incentive needed to remind people to donate.
And thanks to all the other people who needed no reminder to give so generously. It was a truly happy birthday with your generous donations. We very much needed this help, as the Trust was getting low. Again….thank you!
Wilson has been losing ground lately, and we’re going to see his neurologist later this month, to see if Altzheimers is becoming an issue. We were warned about it when he was first injured. Lately, a simple task like taking off his own t-shirt has become confusing to him. He is also much more ornery the first half of the day, becoming more uncooperative than ever. It makes our morning routine much less pleasant, so I’m hoping there might be some new medication to slow the progress of this cruel disease.
The new cd by Chrissie Hynde arrived yesterday, with a sweet note tucked in the envelope from her, reminding him to be sure to listen to the last cut called “Adding the Blue” in which she mentions S. Clay Wilson. It is great to know she still thinks of him. We went to her show, and visited her backstage in 2006. She had cried out for Wilson on Valentines Day at the Fillmore in 2000, saying “S. Clay Wilson…will you be my Valentine?” Sadly, he was not in the audience. In 2006, they talked nonstop for an hour, and he gave her his book. We visited her again, two years after his injury. It was an uncomfortable visit, as she was not used to him being unable to talk. After all, it’s not like she wanted to visit with ME all that much! We left before the show when Wilson became frightened and claustrophobic in the theater. Now, it is thrilling to receive her cd, and to know she still thinks of him. Thanks so much, Chrissie, for cheering him up! I will send her a copy of Pirates in the Heartland right away. Here’s a photo of them together in 2006. It’s fuzzy, but the only photo I managed to get that night.
It was a busy Spring. I was alone, taking care of Wilson, for over three weeks after our caregiver disappeared. It took awhile before I was up to interviewing another parade of wackos, degenerates & mouth breathers! Fortunately, After calling nearly everyone on the list, I found a terrific young woman. She has been with us for two months now. Wilson and I both like her. She cooks, helps with errands, and has a sense of humor. That third quality is really important to both of us, even though Wilson rarely laughs. He will smirk on a good day and I’m gratified. In the old days, he would leap into a doorway wearing a mask, lifting his shirt. Or walk by quickly, shorter with every step, like he was going down a flight of stairs. Sight gags to break up the day, or startle me out of my wits. I miss that. Now, I’m the one trying to entertain him. I’m just not as good at physical comedy…especially now that I’m always in so much pain. So all he gets is my stream-of-consciousness blather, or my singing, which is his favorite. My repertoire is as varied as it is peculiar, so I’ve not managed to bore him yet. (However, one time I was regaling him with some amusing anecdote from maybe 20 years ago when he interrupted me by saying “You told me that already”. First whole sentence in months, and it had to be that! I’m repeating myself? Amazing. He can’t remember to spit after rinsing, but he remembers something I told him 20 years ago. The brain is a truly mysterious thing.) Anyway…things are going along much the same. He hasn’t drawn anything since February, and is still pretty frail but we keep going. I admitted him to Laguna Honda Hospital for three weeks in late April. When I returned home that afternoon, I literally collapsed into bed, remaining there for the whole time save for visiting him three times, and going to the doctor twice. I had been feeling exhausted for nearly a year, and though I had lab work done last November, no one paid any attention to the results until I could no longer walk without a walker, was in magnificent pain, and couldn’t stand in the kitchen long enough to even fix anything for myself to eat during those weeks alone. Turned out, my Thyroid had stopped working! No wonder I had been feeling like I was dying. I also became allergic to Ibuprofen, racing to the ER when I awoke with my face & right hand swollen. I was unrecognizably disfigured. I’ve been taking Thyroid meds, which have helped some. I was beginning to think I was going to be fatigued like this forever, but I’m hoping once they get the meds right I’ll return to my former self, and have more energy. It takes ALL of it to take care of Wilson, so I need more, please! He suffers if I suffer, since no one else takes him for a walk, or out around town. So I am trying to take him out on my good days, for sure, so we don’t turn into a couple of hermit trolls who glow in the dark.
Patrick Rosenkranz’s biography, Volume One, is out now. “Pirates of the Heartland-The Mythology of S. Clay Wilson” is well researched, well written, and is filled with interviews & photos & his drawings. To see a video about it, just go to YouTube and type in Pirates in the Heartland. It’s got some terrific video of Wilson in it. I loved hearing his voice as it used to be. He speaks so quietly now I’d almost forgotten what his booming voice and rapid fire delivery sounded like. Made my heart skip a beat.
The Zap Anthology will be out in the Fall.
Thank you to those who have sent donations to the Trust! It gets low sometimes, which is really scary. It pays for our phone, Internet, cable, special supplies for Wilson, and everything else besides rent, food & utilities. We would be cut off from the world, wearing dirty clothes, if not for all your help. It would be quite dismal. Instead, we have Netflix & Hulu streaming, and Pandora so Wilson can listen to music at breakfast every day, which he loves. Again, thank you.
I have hopefully uploaded our Xmas card on here. We actually just share this walker. It’s really for Wilson to sit down on when we’re out on a walk, in case he gets tuckered out for a minute. I hope you all have a lovely Holiday!
Wilson had been getting slower and more easily confused over the weekend and the days leading up to Thanksgiving. I kept trying to reach his doctors, of course, and his neurologist finally called back late Wednesday afternoon. He suggested I take him to Urgent Care at UCSF on Friday for a ct scan. However, on Thanksgiving, he was much worse, with his right eye half closed. I drove him to the ER at UCSF (so he could be near the neurologist) where we remained until midnight, when they finally admitted him. They discovered he not only had fluid in his brain, but bleeding in there as well. They transfused him with a clotting blood product, and administered a billion tests. The next day, they decided to install a little cone mesh thing in his neck vein, threading it down into his abdomen to prevent a possible piece of the blood clot in his leg from traveling to his lung or heart. That was Friday afternoon. On Sunday morning, a doctor called to say he wanted to remove it, and put him back on blood thinners. Naturally, I asked if he was the same doctor, whom I’d met, who installed it. “Well, no” he said. “Well, have you spoken to him?” I inquired. “Well, no…” He repeated. I asked him not to touch my husband until he had conferred with the other doctor. I didn’t want someone practicing this procedure on him! I don’t care if it IS a teaching hospital….don’t “practice” on my husband! They waited to remove it until Tuesday. Every day, I asked the nurses if Wilson was getting all of his medications which I had listed. “Oh yes” they said. On Wednesday, the new nurse looked at the computer in his room, and said “Well, just not the Exelon patches. The pharmacist doesn’t have that one.” Are you kidding me? He can’t just stop taking that one! No wonder he’s been so groggy, sleeping and even snoring right while I wash his face! I called our caregiver, Scott, and had him bring a box of them on the bus. Outrageous! When I took them to the nurses station, they logged them in and notified the nurse. Within minutes, the pharmacist showed up, apologizing for this “misstep” in Wilson’s care. The next day, I showered Wilson in the deluxe bathroom there, he was discharged at 4pm, and I brought him home before someone killed him! I had spent three days racing around, getting his brain scans & ultra sounds from former examinations (Why don’t hospitals have the capability of sharing files through their computer systems, one might ask?” I never managed to get the ultra sound disc back. Frustrating. And yet, you have to be CHARMING to all of these people. Otherwise you run the risk they will race away from you whenever they see you coming to ask a question, like an abused waiter in a busy restaurant. So now that we’re home, the Social Worker has set up numerous sessions with Tye, the Physical Therapist, Susie, the Occupational Therapist, Slava, the Speech Therapist, and Antonina, the Visiting Nurse. Antonina asks, in her thick Russian accent “Has he any LESIONS? Rashes? Any BOILS or SORES?” While tugging at his shirt as he pulls back. Wilson’s skin is all alabaster, peaches and cream, without a mark anywhere. I keep him cleaner than myself! So I help undress him against all his modest protestations in order to satisfy her desire to inspect him. She is once again satisfied. The three therapists have much more success with him. He likes them! Susie has managed to do the impossible, coaxing him into his studio and getting him to draw for the first time in a year! She is a beautiful Asian girl with a lovely personality and a good sense of humor. “Are you cheating on me now with Susie?” I query. Wilson just grins. He has done two drawings so far. She is coming again this afternoon, when I strongly suspect he will create a third. And Tye has been getting him to do exercises, mirroring his every move! I wish they could come longer than their six week contract, paid by Medicare. I plan to ask what they charge. If it’s not too expensive, I will pay them to continue with money from the Trust. (Thanks to all who donate! Every penny truly adds up, and makes his life and health so much better.)
A few days after bringing him home, I received an automated survey call from UCSF. The last multiple choice question was about how satisfied we were with the stay there. I pressed 2, for only “fairly satisfied”. Within two hours, a live person called to inquire about my answer. I told her about the procedure, then the removal of the mesh. And about them lying to me about his meds. She was pretty appalled, and gave me the address & phone number of Patient Relations, so I could report it. I had already planned to write a complaint, so this made it easier.
To wrap this up, one more thing happened to make life a little difficult. I have been experiencing random bouts of nausea, fever, chills, and fatigue. Of course, I just thought I was getting run down, menopausal, or just OLD. On Monday, after leaning against our claw foot tub, scrubbing it, I noticed a bright red area on my left thigh. I thought it was a pressure mark. Later, after taking Wilson out for a walk, I looked at it again, and it was much bigger, and boiling hot! What the hell…blood clot? Allergy? Infection? I raced around, putting things in my backpack, and drove up to the ER at Davies, only a few blocks away. Turns out I have Cellulitis, an infection deep in the tissue. It’s from a bacteria most likely caught in the hospital. It’s a dangerous kind of staph infection requiring strong antibiotics. It has caused excruciating pain in my leg. I have been on the antibiotics for 3 days now, and the redness is going away slowly. But it hurts deep to the bone when I walk, although not as severely as yesterday or the day before. Tomorrow I will have a whole blood panel screening, since I have been experiencing some other mysterious symptoms as well. Might as well get it all checked out! I’m just glad it looks like the antibiotics are having an effect, or they would want to admit me and administer stronger meds intravenously. Just what I don’t have time for! I told them I don’t have time to get sick…I’m taking care of Wilson!
Oh, I forgot….since coming home, I’ve had to purée all of Wilson’s food, and even thicken his water. It’s harder than you’d think. The first few meals were a nightmare, using my crummy old broken blender. When I mentioned it on Facebook, only a few hours went by before Ron Turner from Last Gasp showed up at our door with a huge box. It is a deluxe new Ninja blender system! I have since been serving up miraculous meals in creamy swirls for Wilson. I told Ron that I have become POWER MAD, and am roaming the apartment, wanting to purée everything in the house. It’s an incredible device, and has made the tedious process of pureeing everything an enjoyable success. Thank you again, dearest Ronald.
Well that’s about it for today. I’ll try to get back soon, and report some hopefully HAPPY holiday news. Happy Holidaze to all of you out there. And many thanks for all the care and generosity from Wilson’s friends & fans.
Wilson was happy all day on his birthday. He smiled as I read him emails & cards while he opened his presents and took phone calls. Thanks to everyone who wrote to him, donated to the Trust, and called to sing the song! The following Sunday, I had a party for him. It was a great success, as he spent the whole time in the living room with his pals. (Sometimes he is known to hide in the bedroom when people come to visit, so this was an extremely successful day.) Thanks to Marilyn for the checkered cake & fried chicken. And to Ace, John Riddell, Phaetons, Bill Carlson, Donna Safiotti & Eugene McCarthy for coming to spend time with him. The gifts he got in the mail were all a hit as well. I am grateful to everyone who helped make this such a happy day for him.
We had a lovely day out in the back yard last week. The little girls from upstairs had a tea party while I repotted a plant in the sunshine. Wilson was smiling the whole time! San Francisco usually has such crummy weather in the summer (The coldest winter I ever spent was a summer in San Francisco..Mark Twain), but the heat wave kept the damp foggy days away for several weeks, so it was easy to convince Wilson to go outside for awhile.
His birthday is coming up on July 25th! I am on my way down to the Apple Store right now to have them help me add a SUBSCRIPTION BUTTON on here. Soon you will be able to subscribe, donating a sum each month without having to think about it. I will add several different affordable amounts so lots of people will be able to do it without going broke. The Trust has become low in the past year, which has worried me. Hopefully, this will help build it back up. Look for it soon!
I realize I’ve not posted very many photos of Wilson’s work on here! There were many more I wanted to include, but the files were too big to download. I will adjust them,hopefully, and add them later on. His drawings have become more simple as time goes by, until the past 2 years, when he has drawn only a face, or that odd character he drew last Fall. This Spring he was able to draw only what appear to be clouds, or talk bubbles…with no figure at all. It has been heartbreaking to see this decline, which has affected every area of his life, of course, not just drawing. I hope you enjoy looking at some of his work here. It is a microscopic speck, compared to the whole body of work over his lifetime, of course. Thanks so much for checking in. I will post more information soon, as his birthday approaches on July 25th, so come back as the day gets closer!
If you click on a drawing, then click on it again, it will enlarge so you can see all the details.
Wishing all a peaceful season. I have been fighting the flu the past few weeks, so it’s been a little slow around here. I did manage to get out this week for a few hours to catch up with Xmas shopping for Wilson. I got him an antique ironWWI nurse (possibly Florence Nightingale?) carrying a pan of blood, and a sailor in whites, kneeling over a giant machine gun for his collection on the mantle. Also the requisite slippers & socks.
Ken Weaver came all the way from France last Thursday for a visit. Wilson was so excited he managed to say whole sentences, which have become a rarity this past year…… and they did a lot of laughing. Then, his pals, Cousin Marilyn, Ace, Carlson, Rick, & Eugene came on Saturday with cookies and hot cider. (Wilson ate so many cookies & candies he was not interested in dinner til late in the evening). He is always happy after seeing his friends. I’m just grateful he hasn’t become utterly bored with me yet!
Thanks to everyone for the abundance of cards and letters flying thru the mail slot the past few weeks. He loves it when I sit down and read them all to him.
I’ll try to write more often on here this year. I’m always so busy, I’ve not been doing that as often as I should. I do read him your messages, and tell him about the donations he receives. Best to all, and a peaceful 2013!