Jun 22, 2013 8:33pm
I want to say again thank you to any of you who have helped us in the last few months, and that amounts to a great many people indeed.
Right from the very beginning, when I came to my senses in hospital, I received gifts, letters, and presents to cheer me up. Then, when I went home, Julia and I were sent cooked meals, offers of assistance, or rides to my physical therapy and help with my daily exercises or my walks. Now there are people who have made generous donations or who have arranged fundraisers. If I get through this, and I believe that I can, it will be due to a massive effort from all of you, just as much as from me.
I have been thinking a lot about the generosity of people. I have been scolded several times by people who misunderstood me when I said that I want to ’give back’ in some way. I don’t mean a literal pay back. I know that people who have helped have done so out of the goodness of their hearts, without expecting to be paid. But I feel that it is my turn to pass on the good vibes. It probably won’t be soon as I have my hands full with my physical therapy, but it is on my to-do list for sure.
In the late 1990s and early 2000s I was a member of a little collective of Bay Area animation artists called Maverix Studios. For several years, until the studio had to close, about once or twice a year we held charity art auctions of our own artwork, to raise money for a variety of good causes; the Asian tsunami, the Pakistan earthquake and so on- starting with a fundraiser for an uninsured medical emergency of one of our friends. Now many years later, I find myself in a terrible pickle and similar auctions have been arranged for me, raising money to offset the uninsured week of my hospital stay.
I now have a visceral sense of the tremendous good that artists can do, raising money with their own artwork. Even when I was not a beneficiary but a participant instead, I remember what a feel-good thing these auctions were. How they made us see that even drawing silly cartoons can be a useful thing. They gave us the joy of helping someone in need and then going home with framed art by our friends, not to mention the fact that the auctions gave us a good reason to do a new art piece, and draw something of our own, rather than for “the man”. There really wasn’t a downside.
I have a lot of time to think these days, and here’s a thought; wouldn’t it be great to make something like that permanent? A foundation or charity; “ARTISTS HELP PEOPLE” or some such. God knows how to do it, I imagine setting up a charity must not be easy, but couldn’t it be wonderful? Sort of like “Doctors Without Borders” but with artists.
Of course, all those auctions back then (and these for me now) happened spontaneously, in response to a specific need, so maybe a permanent charity or foundation would not capture that energy.. Plus, I don’t know if a registered charity has to have a SPECIFIC mandate; the Maverix auctions tackled a variety of different issues and maybe a charity has to choose just one. So perhaps it would be better to commit to an annual fundraiser and leave it at that. Anyway, I’m thinking about that..
Meanwhile, I have my physical therapy to keep me busy. The big news is that I can now feel some slight sensation in my right hand. Not in the fingers yet but a little, faint, sporadic feeling in the palm of my right hand. It’s a small development (I’m learning that they all are) but exciting for me none the less. I now have a very real hope that I will gain proper feeling in my fingers again, and of course sensitivity in the fingers is essential to DRAWING.
The dexterity of the fingers themselves improves, ever-so-slowly. I cannot really draw properly yet, but have begun to hold a pen and attempt to write or draw simple shapes. In general, my hand is further along than my overall arm strength which is still very weak. In fact, my hand is perhaps the most developed part of my rehabilitation. This contradicts the predictions of experts in the early weeks after my stroke, who were preparing me for my hand not waking up for a very long time indeed. No doubt the reason for the faster-than-expected recovery of my hand is that I have an above average amount of neural pathways to the fingers, from a lifetime of fine work with my hands.
My shoulder hurts me a lot less than it has for some time. For the first few months there was no feeling at all and then when sensation came back, my shoulder ached me solidly for a couple of months. The pain has eased greatly, but it seems that the shoulder ligaments may have been stretched in the time my right arm hung slack in the socket. It’s not clear yet if the damage is permanent. We shall have to see.
My right leg still feels like a plank of wood. We are going to buy another of the electrical stimulator units. I currently use one to stimulate the muscles of my ankle. These units are expensive and not covered by insurance, but seem worth it. Whereas the muscles of my entire arm are active (though very weak) my leg still has several muscle groups still dormant. Hopefully the stim units can ZAP them back to life.
It is a strange thing to have your own body rebel against you. This is not a new problem for me; as a lifelong asthmatic I’ve often felt hijacked by my own physical frailties, but I feel it now in a powerful way I’ve never had to deal with before; muscle spasticity.
My entire right side is finally capable of limited movement but it often doesn’t do what I tell it to do. Instead, it will curl up and go its own way. I am told that this spastic movement is a very primal reaction, initially triggered directly from the spine in that desperate moment of my stroke; the brain was offline so the body curled into the fetal position to protect itself at the very end.
As it so happened, I was saved by in the nick of time by Julia coming home and getting me to hospital, but I am now left with the echoes of that moment as certain of my muscles now react spastically, with no input from me. They CLENCH or SPASM or TREMBLE at the most awkward times, such as at 3am when I’m desperately doddering to the toilet for a pee. THAT’s when my leg decides it wants to go in another direction altogether, as my toes painfully curl under me: “Oh, no, no, NO!”
I have learned that it never pays to hurry, as that will only make it worse. This spastic reflex is involuntary but it is in response to external stimuli and made worse by my heightened emotional state, just like my asthma when I was a child.
I have asked my physical therapists, and an old friend who had a stroke a few years back, if this primal reflex will be forever a part of my life? They are unsure. Maybe. We shall have to see. Reconnecting neural pathways takes time. Meanwhile, my muscles have atrophied from lack of use, so those I can access conciously are very weak against the stronger spastic reflex. Hopefully, my muscles and mental control will get stronger, but at the moment I am dealing with weakness on the one hand and uncooperative body parts on the other.
Speaking of willful lack of cooperation, State disability was denied me months ago by a bloody-minded bureaucrat because of my writing the incorrect date on the application. I discovered my error just after I got home from hospital but it was simply impossible to get through to the disability office on the phone. Thankfully, my brother Dom was here and he took me in person, still in my wheelchair, and we talked with an employee who was an absolute brick wall, so we filed an appeal.
A few months later I got the notice of my hearing date and as luck would have it, another brother was on hand to be with me; Jo this time. The judge was as stony-faced as a pro poker player while she heard what I had to say, so I did not hold out much hope that she would rule in my my favor. Thankfully, the inscrutable judge was sympathetic to my argument that my error on the disability application was due to my disability in the first place; namely a swollen brain.
I had been living on my savings and was not clear if I would ever get any cash actually coming IN, but now my financial situation is nowhere near as dire. I’ve been warned by friends that the billing nightmare isn’t over quite yet; chances are that I will be hit with more bills that insurance won’t pay once my case gets through the system. But that is in the far future, when hopefully I will be working and can pay down such straggling bills myself.
This disability money, and the money being raised by friends, has quite literally turned my situation around, and so quickly that it catches me by surprise. I had just gotten used to being massively in debt, when quite suddenly, the financial burden is lifting. It wasn’t long ago that it seemed it would be hanging over my head for years. So, the past few months have been a roller coaster ride; I’ve been despondent at times and elated at others.
The combination of kindness by family and friends and a bureaucratic turn in my favor, means that I will be able to pay my bills, put the financial worries behind me, and get back to what I should be really focussing on, which is my physical rehab. It will be a long road; I need nothing less than a full recovery to get back the fine motor skills we artists all rely on.
A stroke is a devastating thing; I feel like a nuclear bomb has gone off in my body and I am living in the rubble. I truly would not wish my situation on my worst enemy. To be crippled and utterly helpless fills me with a frustration that could touch on despair if I let it, and the financial predicament has been craptacular to say the least.
But at times I can see something wonderful as well. The outpouring of generosity and kindness from my friends and family rallying to my side has been a revelation, and under normal circumstances I would not see that. It’s a frightful situation I find myself in and that is no exaggeration, but it has been both touching and bracing to see the unmistakable expressions of love from those who care about me.
It’s as if I witnessed my own memorial service without having to take the trouble of actually dying to see the love of my community. I feel like Jimmy Stewart in IT’S A WONDERFUL LIFE, getting to see the love of the entire town after his moment of utter despair.
Once again, I thank you.