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.
It has been an eventful month. Wilson was doing well learning how to walk again, and even climbing a few stairs. Until about ten days ago, when he fainted upstairs in the gym. It was hot in the direct sun, under the skylight, and they suspect he was dehydrated. He was taken to the ER on Parnassus, where I met him from home. After six hours, though, my legs swelled and turned red, so I was admitted to the ER as well! They brought in a reclining chair so we could be together, which made things much better. After a fourteen hour siege, Wilson was finally admitted to the hospital at 2a.m., and I was discharged to go home. He stayed for three days for tests. I bought him a tiny cuddle buddy in the gift shop. It was a tiny giraffe with floppy arms & legs which I perched on his pillow holding a miniature York peppermint patty and a tiny love note. We named him Mambo, and Wilson holds him constantly. I pet and coo to them both in times of stress, and it brings Wilson some unexpected solace.
We are hoping to bring Wilson home on Friday, September 23rd! I have been sick with a cold for five days, and sound very much like an old man in a trailer park again today. But I hope to be well by then. It’s a bizarre cold I must have caught in the ER. I just hope Wilson doesn’t catch it! I slept all day for the whole weekend, and am not quite over it yet…..I do long for him to come home. Yet I’ve been too sick to interview a new caregiver for the weekends. I can’t do this by myself any more, so a second caregiver is needed now. I just don’t want to be Typhoid Mary in the process. I hope to find people willing to work two days a week very soon! I’ll call the list tomorrow, and see if anyone is interested.
ill try to attach these other photos now. I’ve tried to write this THREE TIMES now today, and have lost the whole thing each time. So maddening. Wish me luck.
Wilson and Lorraine Chamberlain were married in the company of Spain Rodriguez, Susan Stern and Skip Ziobran on Aug 10, 2010 at City Hall. It was a glorious day, Calloo! Callay! We chortled in our joy……
However, instead of celebrating, we need to move him to Tunnell Center on Pine Street. He cannot walk, and we need a moment to hire more help, and get the proper equipment. Wish us luck.
Wilson was much improved today, as you can see by his peaches & cream complexion, bright eyes, and the sweet expression on his face. He had just been grinning from ear to ear! His attitude was much improved, with lots of mystifying comments
in his own special language……to which I frequently reply with “oh really? Well that’s good” or the like. He is happy when I agree with him, so I do. I really do!
Tomorrow I hope to speak with his doctors and get a plan in place for returning home just as soon as it’s safe, and he is really well.
It has been a challenge going up there to the hospital, since I’m getting profoundly crippled lately, and need to be in the hospital my own self!
Just as soon as Wilson is all squared away, I will then make a plan for some much-needed repairs on my own body. I am in magnificent pain, which cannot continue or I will go mad, very much like my grandmother did at age 52. At least I’ve made it twenty more years than she did. But I need to return to good health, so Wilson and I can truly return to having fun with the last few years of our lives, and enjoy each other, our friends, and this beautiful world.
I had to dial 911 yesterday,taking Wilson to the ER as guests were arriving for his belated birthday party. He couldn’t take a step, nor answer any questions. His blood pressure was ok, but He was running a fever. He has an infection in the brain shunt, and they are performing revision surgery on it this afternoon. I am very worried. I will let you know how he is doing when I know more.
Incidentally, anyone who sent cards to our PO Box might have had it returned. I didn’t realize it was time to pay for it again, and hadn’t checked it for two weeks! I’m just so crippled lately. It’s difficult to go there, and I had let it go too long. Instead of notifying me, they simply returned everything. It is still the same number. It’s all functioning again. You can send it back!
Wilson turns 75 today! Kevin Webster made him this fabulous mask which I will frame rather than cut out, it’s such a masterpiece. I’ll give him his ca
rds and read him his birthday wishes & snail mail….but the gathering of The Usual Suspects won’t take place until Sunday, the 31st. This breaks his CARDINAL RULE about celebrating birthdays on the actual day, but it’s a MONDAY, for one thing….and my own health issues are making it better to do later. So next Sunday it is. I’ll post photos of it next week, I promise!
Please send him some birthday wishes & anecdotes here or on his Facebook pages, and I will read them to him.
Wilson will soon be 3/4 of a century old. That’s a pretty big deal. Especially when you take into account the Traumatic Brain Injury he had nearly NINE years ago! I can’t believe it’s been that long.
I want to thank everyone who has donated to the Trust. It has made it possible for me to keep him here at home, where he feels loved and safe. It’s not easy, managing the ongoing care of someone in his condition. He stopped “gettin
g better” many years ago. His dementia has increased noticeably, and he spends much of the afternoon & evening watching movies streaming on the Telly. This keeps him entertained, since he can no longer draw. We take him out for a walk, or for a ride in the car as well, although that is becoming difficult now that my own health is also a challenge. I’m working on it….but things progress very slowly when you’re old and poor in America. Not only is it hard to get ahold of my doctors, Or get an appointment….but it’s almost impossible to get them to talk to EACH OTHER so a plan can be coordinated. I need hip & spine surgery now, as I’m in crippling pain and can barely walk. I need to stay strong so I can keep Wilson out of an institution.
I hope you will donate what you can for this birthday, so we can stay here, and get what we need for Wilson’s ongoing care here at home. It is a lot to ask after all these years, but it’s still possible to communicate with him even though he can rarely speak. I can still make him laugh, and he can still understand he is loved. So it is still vitally important to keep this incredible soul at the home he has lived in for 35 years. He is still IN THERE, even though he can’t tell you about it.
We are having a few of the Usual Suspects over for a little party, and will post pictures of the festivities later on. His birthday is July 25! Please send him a message for me to read to him, too. He loves that.
This fabulous pin sold out in about an hour the other day, right after it was posted! I didn’t even get the chance to post it here before it was gone. The artist, Raynor Mauri, has ordered more. They will be available again in two weeks. I will announce it the minute they become available, so you’ll have a chance to place your order. We just had no idea it would be so popular. He has donated every cent to Wilson’s Special Needs Trust, keeping nothing for himself. This incredible gesture is a great help right at a time when I was starting to get very worried. The Trust helps us with nearly everything, and it hasn’t been as healthy as it once was. It has been eight years since Wilson was injured, and he stopped improving after only six months. He was the same for about a year and a half, but he is gradually declining now. He can do nothing for himself, nor can he draw any more. So be on the lookout! I will announce the pin here and on our Facebook pages the minute it’s in! And on Twitter @chamberpaint.
Well, we did make it through April, which some refer to as “The cruelest month”….and I tend to agree! We had more medical issues than usual, but managed to survive them all so far. Wilson is suffering from some repetitive mo
vement syndrome at last, a side effect from his dementia medication. I have been dreading this possibility for many years, hoping he wasn’t going to get some bizarre mouth movement, or even start drooling. He hasn’t got those. Instead, he does a rocking forward motion. It’s exhausting. Like doing crunches for hours at a time. I think this is why he remains so slender! It can drive me from the room sometimes, as it gets annoying after awhile, but he doesn’t do it ALL the time. He can’t control it, and does a fair amount of grunting and gasping when it’s got ahold of him, so I feel great sympathy for him when it’s going on, because he can’t just relax and enjoy a movie. Or his dinner. I remind him to try to relax, but there’s nothing he can do about it until it subsides on its own after a couple of hours.
Our caregiver, Rena, has been taking him out for a walk on her own lately, since I am in more hip pain. I use a walker now, even in the house. I’m hoping to be cleared for hip surgery soon, and look forward to pain-free walking by next Fall.
We lost power in the neighborhood for over 24 hours on the weekend, when I was alone here with him. Wilson is afraid of the dark now, and started babbling incoherently and moaning until I got some candles lit, and settled down to read to him until he could doze off to sleep. The following day I put a radio in his room, and gave him a shave and manicure. Our neighbors, Doug and Heather, brought us some ice and a big cooler, so we wouldn’t lose all our groceries. I talked to Wilson all day, keeping him entertained, and he really enjoyed the candlelit dinner, with two battery candles that sparkled on his tray table. I was so thrilled when the power returned! I’m just not that interested in camping any more. Especially not when I had to do all the work AND do all the entertainment. I was totally crippled the next day from hobbling around so much, finding more candles, batteries, etc. It was a lot of walking for someone who can’t usually make it to the kitchen without the walker….in such searing pain.
The one thing that saved my sanity was when my old friend, Skip Ziobran came over, picked up my iPad, went home and plugged it in, then brought it back a few hours later (both trips on the bus, mind you!)so I could lie down later and at least watch a video on it. We had no wifi, but I had a couple of movies on it. I just hadn’t charged it all day when the lights went out. I’ll never let THAT happen again! He was so incredibly generous to do that for me. He didn’t work that night at his bar the whole time, just so he could do that for me. He owns the bar called Martuni’s, on Market and Valencia. Please go in that fantastically fun place sometime and have one of their giant martinis. And say thank you to Skip again for Wilson and me. I can’t thank him ENOUGH for all he means to me as an old friend from Connecticut!
Ooops! I meant to put captions under the photos. The first several are Wilson going out for a walk with Rena, all bundled up like a kid. The last two were taken during the power outage, in the bedroom, trying to have a candlelit dinner.
I am sorry for doing such a crummy job posting these photos. I’m lucky they are even upright, as I had to fix that issue…..but forgot how to go back to each one to add a caption…except for the last one. I will try to fix this presentation when I have the time.
cheers to all from your humble scribe, Lorraine