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.
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.
It’s been awhile since I have written an update on here, so please forgive me. My own health issues have kept me from getting on the computer as often as I used to, having had a mini-stroke Feb 1st, as well as increasing back & hip pain. I will try to do better, I promise.
Wilson is much more frail than he was before his brain surgery last year. He can’t walk very far, so we must always have the wheelchair in tow so he can sit down when he’s tired. Also, he is not comfortable with the noisy traffic or people passing by on the sidewalk any more, so he is reluctant to go outside very often these days. We are both in danger of becoming complete hermits! However, we have had visitors come by now and then, which usually cheers him up. I’m always happy to put him on the phone when people call, even though he isn’t able to say much. He still loves to hear his friends’ voices, and smiles thru their whole call.
Here is a photo I took of him a couple of weeks ago. When I read what it says on it, he laughed out loud. It’s just a shame he refused to smile when I took the picture, though. He is so stubborn, the minute I suggested he keep smiling, he stopped. Typical Wilson.
I plan to get someone to help put a “Subscription” button on here from Paypal soon, so people can subscribe and donate a small amount monthly. The Trust has been getting quite low, which worries me. Without it, we would have no phone, internet, cable, or supplies for his care. I promise to get someone to help me with it very soon so perhaps people could subscribe by the time his birthday rolls around July 25th.
Thanks for reading this, and continuing to care about Wilson. I read everything to him that you write, so feel free to keep in touch.
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!
We had a great day today! I managed to get Wilson to walk 4 loops around the apartment, down the 5 front steps, into the car and back out without any help. This is the first time since last March. Now, I can take him with me when we have no caregiver to stay with him. We’ve been virtual prisoners on those days, as he cannot be left alone. Tomorrow we have to go get his ultrasound done to see how the blood clot is doing, and we can go in the car, instead of wasting $20 on a cab. Besides, it take forever to get a cab in this town!
Hope everyone has a lovely Thanksgiving. Our friend Marilyn is planning to deliver Thanksgiving dinner to us on her way to a party. It will be a treat to eat someone else’s cooking, as well as having a visitor in the house.
I brought flowers, a balloon, cake, & gifts & cards from his pals to celebrate Wilson’s 71st birthday in the nursing facility. I’d hoped to have him home by this day, but we’ll have to wait another week. He was thrilled when I showed up with a big cart filled with all this stuff, and enjoyed watching me set up the display. I read him all the emails & letters I’d printed out while he ate a piece of cake, smiling. I opened his gifts for him and he was able to say “That’s really great!” each time something new emerged. It meant the world to him to get so many cards, etc, from old friends. Thanks to everyone who wrote on here, and sent birthday greetings by email & Facebook. I read every one of them to him, and he loved it.