I’m ready for my close-up

 Posted by on April 15, 2015  My stroke
Apr 152015
 

Apr 15, 2015 3:05pm

Thalamus_small

After almost 25 years living in California, I’ve finally gotten my own Botox injections. Instead of being used on my ever wrinkling brow and baggy eyes, the preferred wonder drug of Hollywood starlets was jabbed into the spastic muscles of my arm and leg. One of the strange aspects of what has happened to me is the muscular spasms. While the LEFT half of me functions normally, on my RIGHT side, some muscles are still paralysed, some are coming back to life, and others are only partly under my control due to SPASTICITY, a sort of muscular Tourette’s Syndrome, where certain of my own muscles fight against me, and overpower the weaker muscles. Botox injections are famously used to weaken the muscles that cause frown lines and therefore bestow a blandly beautified movie-star brow, but in my case the Botox will (hopefully) weaken my spasm-ing muscles and level the playing field between them and the weaker muscles I have full control of.

Sometimes, when Julia and I are at home watching a movie, we’re amused that my right-side has a mind of its own and involuntarily reacts to the film. Even an incredibly lame ‘BOO’ scene will cause my body to react like a Tex Avery cartoon coward, with a hilarious ‘TAKE’ reaction. I can only assume that there’s some involuntary twitch or ‘fight or flight’ reaction that is immediately suppressed on my left side, but is highlighted on my right side where I have little voluntary control.

Although constant spasms are sometimes a frustration, they’ve had their place in my recovery. The muscular rigidity in my leg, likewise involuntary, acted as a sort of SPLINT in the early months of my rehab, allowing me to walk when I otherwise didn’t have had the strength to stand. But now that I’ve regained some voluntary muscular control, the idea is to ease the spasms and restore a balance. Speaking of balance, my internal gyroscope has improved a lot since the early days, when my equilibrium was completely shot. It isn’t yet back to 100% normal, I still have a hard time looking around while walking and must keep my eyes forward to maintain balance when in motion, but I now have functional balance, and it has been over a year since I had a fall.

It is a strange thing to realise that there are ‘shades’ of numb. I still have no touch-awareness in my right hand, and yet the numbness is a different numbness from when I first awoke in the hospital. Back then, the entire right side of my body was a absolute void in my mind. I was still mentally connected to my LEFT side, but my RIGHT side had ceased to exist, mentally, when I closed my eyes. No sense of touch, no sense of space, no ability to feel pain. Nothing. Now, 2 years later, there is something there.. There’s still no touch sensitivity, but my hand sometimes has an ever-so-faint pins & needles tingling.. that feeling after your leg has ‘gone to sleep’ when sensation is coming back. Oh, how I hope that that actually IS what is happening (though over a period of years, instead of minutes). For the last six months or so, sometimes, I feel a vague warmness in my hands and fingers. Fingers crossed (numbly) that this indicates that connections are being reestablished. I will take anything, even pain, over the numbness and lack of connection to life.

I sometimes feel like a puppet with its strings cut, but to take that analogy further, I’m a puppet with cut and tangled strings. What appears to be the control to move the puppet’s leg UP actually moves it DOWN. When quietly concentrating on the muscles along the back of my leg, the hamstrings and calf, some muscles can’t be sensed at all, some I can mentally connect to, but with the limb moving in the opposite plane of motion than I’d anticipated. My right arm is more dexterous than the leg, but still very clumsy. Thankfully, it has been a while since I’ve broken a cup while doing the dishes, but my staggering clumsiness is a constant issue. I spill stuff, I drop things, I bump into furniture and scuff and kick the walls. This is not the result of my lack of care. In fact, perversely, the more careful I try to be, the more spastic my body movements often become. It is a very strange to be so out of touch with this body that I’ve spent my entire life in. In primary school, the mean girls would call me a SPAZ, and now I’m spastic for real; lurching about the place like a drunken Frankenstein’s monster.

Speaking of primary school, a few months ago, a dear friend from childhood, PETER LAWLOR, visited San Francisco on his way to business meetings in Las Vegas. We laughed the whole weekend he was here, but had extra chuckles the afternoon we spent together in the pub. I’m unsteady on my legs even on a good day, but after a few Drambuies and even more beers and chuckles, I was lurching about so crazily that I was scaring passersby as we made our way from the bar to dinner. Julia met us in the restaurant, where we were still giggling like maniacs. When she remarked that perhaps we’d had a little bit too much to drink, I replied that if I looked drunk sitting down, she should’ve seen me careening up the street in the dark, frightening the neighborhood children.

Given that I’ve been in this medical pickle for over 2 years, it’s amazing to consider what tiny percentage of that 27 month period has actually been spent under professional medical supervision. I was in hospital for 8 weeks, where the care was amazingly good; several therapy sessions per day for all my various broken bits and pieces. I was pushed to my limit almost daily by an amazingly supportive and caring team of therapists, doctors and nurses. After I checked out of the hospital in late February 2013, it took a while to get into an outpatient therapy program, but I was finally accepted in May 2013, when I had one weekly 45 minute session for both arm and leg, through till December 2013. Then I was cutoff.

It frankly amazes me that after the level of devastation my body and brain had been through (and still deal with) only 70 X 45 minute sessions of occupational/physical therapy sessions were deemed sufficient before being left to my own devices. I was offered cheerful soundbites about “getting on with real life!”, but it was unclear what this actually meant, and it’s still a question even now, over a year later. I was set ’free’ in much the same way that a one-winged bird would be let back into the wild; it might be a feelgood moment back at the animal shelter but utterly terrifying for the bird. After a mini-tantrum to my physiatrist (“I’m a professional cartoonist whose drawing-hand still doesn’t work; HOW am I supposed to ‘get on with real life’?!”) I got an additional 3 months of therapy for my hand, but was only granted one 45 minute session per month, which was next to useless. That monthly session felt as if it were merely for the benefit of the insurance company. I’d do the exact same exercises that I’d done the previous month, with the therapist measuring my progress with a stop watch. The data was soon used by the insurance company to claim that my lack of progress did not warrant any more care, and in May 2014 my therapy ended for good.

This highlights a difference in opinion of what the purpose of medical care actually is. From the insurance company’s point of view, I get care as long as I improve but not when I plateau. To MY way of thinking, lack of progress is the PRECISE reason that I need more care (after all, if you hit a plateau at the gym that’s exactly when you need a personal trainer). I expressed these frustrations to my medical care-givers, and they commiserated, shrugged their shoulders in resignation and the older ones even confided in me that it wasn’t always so; over the last 20 years the insurance-tail is wagging the medical-dog. America is famously proud of having ’the best medical care in the world’, and I think the carers themselves are wonderful, but the insurance companies who control access to that care are notoriously stingy. The knowledge that this superlative care is there, but just out of reach, makes this process doubly frustrating. I feel like Oliver Twist asking for more soup.

The truth of any longterm medical recovery is that the bulk of it must be done on your own steam. In the early months after my release from hospital, I had constant care from a supportive crew of loved ones who would supervise me on my walks and exercise regime. After my physical therapy ended— December 2013 for my leg and May 2014 for my arm— and my caregiver loved ones were finally back to their own lives, I continued the exercises I’d learned on my own. I was able to gradually improve enough over the past year to get my physiatrist to ask for more physical therapy, and it just re-started in February. Once again, it will only be for a few months, but my hope is that it will give me enough new exercises to be able to improve further and jump up to a new level.. It is a very slow process.

I’ve been working very hard on my left-handed drawing. Julia and I often go sketching outside when the weather cooperates, which over the last year or so has been very often. When not drawing on location, we simply sit on our bed and draw from the TV, which is equally fun, and we do that frequently. Julia recently bought a little PC drawing tablet, and has been doing some amazing work. My Lefty drawing continues to be the one area of my rehabilitation where I see quantifiable improvements month to month, especially recently, when I got my first paid drawing gig using my left hand. My friend Carol commissioned me to illustrate the cover to her new children’s book (now available for digital download on Amazon) and I was grateful that she thought of me. It was very fun to do, although it was time consuming and fiddly using Photoshop with one hand. I may buy some foot pedals to make those two-handed key-commands easier. My friends who make a living as illustrators tell me that it’s not the best time to try and get into illustration, with print media suffering, but I’m optimistic I might get such work every once in a while. A good friend has put my name forward as an illustrator for his children’s book, so fingers crossed for that potential project.

I previously mentioned how I’d started a little ‘story consulting’ late last year, and I had more of the same again just a month or so ago. Hard to say if that will lead to any more such work, but it has been extraordinarily gratifying to feel professionally useful again within the industry that I love, if only sporadically. I’ve been trying to keep up my writing practice, with a least one blog post every month or so. There are a few personal writing projects that I want to push forward on. In addition to the autobiographical childhood stories I’ve been writing on my blog, I have an old idea for a children’s novel which I may also try and adapt into screenplay.

Julia and I recently took an editing course, because we both plan to make some little movies. Julia wants to make more of the painting-process films she’s been making, but with more sophisticated editing, whereas I want to tidy up the animated film I made in high school. I recently had it transferred from Super-8 onto digital media and it was hilarious to see again after all these years. At the bare minimum, I need to do a little bit of colour correction and put a simple soundtrack to it, and then maybe I’ll put it up on Vimeo. While taking the editing course, I realised that I have even more potential material that could be made into simple short films. I’ve been writing autobiographical childhood stories on my blog for several years, and since my stroke, illustrating those stories has been great training for my lefthand. If I can read the text into a microphone, perhaps I can edit the images into a 2 or 3 minute movies. These would not be ‘proper’ animated films, but simple camera-pans and zooms across my own illustrations, but it’s quite exciting for me to consider that I could make some simple short films, even in my reduced circumstances.

I look forward to getting started!

  6 Responses to “I’m ready for my close-up”

  1. Edit is where the real film happens. Brilliant idea for you and Julia. I look forward to those stories!

  2. James how wonderful to hear more from you. You come into my thoughts from time to time, wondering how you are getting along & how you are. Thank you so much for your latest update.

    Your rehabilitation sounds like quite a, dare I say the word,…”journey”. Frustrating and curious, especially as to what new surprise your body has in store for you. I hope things keep moving forward for you. Your night at the pub with your friend was so funny, I could just imagine it 🙂

    Hurray for your children’s book! What a fabulous opportunity!! I love the idea of little animatics of your life story blog. Terrific idea. I check in on them from time to time & enjoy them so much. I think the editing idea is brilliant. I’d love to see the movie you made at school 🙂 it sounds like you were destined for this career.

    Keep going James, you have an amazing spirit 🙂 & love to you both :)))) xo

  3. We’re far more up to date in catching up with this latest. And once again, best wishes for the various possibilities on your horizon. My parental pride in your “right stuff” is boundless. Love, as ever

  4. Amazing stuff James!!!
    Many many thanks for keeping us informed of your progress and life in general.
    Without a doubt you remain a genuine inspiration……..when do you do your TED Talk???

  5. I’m so grateful that you continue to keep us up to date on your antics, Jamie! And really inspired by your continuous push to improve in every way. Thanks!

  6. Ashley has problems with spasticity also. Takes Baclofen regularly and an occasional Botox injection. Thanks for your updates, they are so great to read. Love you guys!

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