Nov 1, 2013 4:50pm
A few months ago, I would tentatively shuffle around unsteadily, like a man of 95. Now I have graduated to to the next level and merely stagger about erratically like a crazy drunk. Progress!
Thinking of my similarities with the old and infirm, led me to reflect on the influence of my paternal Grandfather, a lovely and vital old bloke if ever there was one. He got to be old for sure, but infirm? never! Despite a stroke of his own that slowed him down at the end (in his speech, mostly) he was never put in a ‘home’ and stayed active and lived in his own place to the very end of his life, which is undoubtedly the way to do it. Thoughts about this irrepressible old fellow led to another blog post about my childhood memories and some lefty-scrawls to illustrate it, which can be seen HERE: (or you can read it along with all my childhood recollections in one thread HERE:)
I often feel that I have already had an early taste of what it feels like to be old, and thus I dread going through this again when I am actually old. My only recourse is to commit to staying healthy and being one of those spry old folk because, sadly, my late 40s are already spoken-for with physical therapy. Let me once again make the case that, if YOU are over 40 and have not yet dealt with any of your known medical issues, or worse; don’t even know if you are healthy or not, because you’ve not had a physical for a while, then by all means have one soon. Because the possible outcome of not dealing with your health concerns is premature old age and believe me, there is a better way to spend your time and you don’t want to do this twice.
My physical, occupational and speech therapy are going well. Every week I have one appointment with each of the respective therapists to monitor the progress of the exercises I do at home. Sometimes we do exercises on specialised equipment that I can only use at the hospital, or we do tests to track my progress, and the therapists all think I’m impoving as well as can be expected, given the the extensive damage to my brain and atrophy of my body. Some feeling is coming back slowly on my right side, though it is patchy, and my sense of balance is still impaired. In general, I still have a great deal of muscle weakness (my arm feels like it weighs 95 pounds) though it is sometimes unclear how much of this is physical (actual muscle atrophy itself) or neurological (faulty mind-body pathways). ‘Both’ is likely. A good way of explaining what I am feeling now is to imagine that on the left side of your body you are wearing normal lightweight clothes, but that on your right side you are wearing bulky, iron armour from the Middle Ages, from top to bottom. It is very heavy, and consequently you are often out of balance and always clumsy. On that side of your body you cannot feel anything (through the metal) and your range of movement is severely limited. And to top it off, you’ve been shot full of novocaine.
It has been an eye-opener for me to realize how much information our brains normally get from our senses. I never thought about it before, but now I’m the test case, because the left and right sides of my body are neurologically wired so differently. If I close my eyes and my therapist places an object in my unaffected LEFT hand, I can at once tell its size, shape, texture, weight and orientation very easily, and thus tell what the object actually is out 9 times out of 10, without even seeing it. If I relax and allow my therapist to manipulate my unseen arm, I can immediately tell if my hand has been moved forward, back, or up or down in space. The same is true of my left leg; even with my eyes shut there is a mental “radar screen” that lets me know what any body-part on my left side is doing and where it is at any given time. This is normal. You have this spatial mind-body connection too, without perhaps ever having thought of it. That mind-body awareness gives you your sense of balance and, as much as any muscular strength, it is this mental ability, called ‘proprioception’ which allows you to walk, to dance and to know that the bag of groceries is still in your hand, even though you have not seen it for 15 minutes, as you carry it home from the store. It’s how you work the brake pedal in your car, even though you are watching the traffic, not the pedal. And a myriad of subtle unseen ways that you get feedback from the world around you, that no longer work for me, at least on my right side.
When my therapist places an object in my stroke-affected RIGHT hand, I cannot tell much at all. Sometimes, I can feel almost a light brushing, like a puff of wind, but often I feel nothing, even in the exact same spot. Because the neural pathways to my RIGHT side were cut in my brain, the only makeshift mind-body connection I have is to watch that right-side body part, even peripherally. This works, but is a poor substitute for the real thing, because if I look away, that body part drops off my mental radar completely, and I have no idea at all of what it is doing. Am I still holding the book in my right hand? Is my right leg still walking? It is hard to overstate how weird this feels; with my eyes shut I have no awareness of the right side of my body. It is no exaggeration to say that this meat-suit I am wearing now does not feel like my body; it does not feel like me. That is an alienating situation to say the least. So, while muscular weakness is still an issue, this lack of spatial awareness and feeling is perhaps the bigger problem.
Strangely, even though I cannot feel the weight, orientation or texture of an object held in my affected right hand, I can now pretty reliably feel the temperature of things. I can feel the warmth of the water when I clumsily wash the dishes, for example, but I cannot feel the dishes themselves. It is strange to get only part of the sense information from an object. If a metal key-ring is placed in my right hand, I might feel the coldness of the metal but nothing else; not the weight nor the texture. But at least temperature is something to move forward with, and gives me hope that the other sensations too will return in time. The vital mind-body connection on my right side must be rebuilt from scratch, neuron by neuron, and in the meantime, I must do the best with what limited resources I have. At times, I feel a tingling sensation or warmth in parts of my right side. Until I hear a better explanation for this, I take it to be thousands of neurons busily reconnecting the neural pathways between my right side of my body and my brain. Although my right hand is still very uncoordinated and has no touch-sensation, nor much strength nor range of motion in the greater arm itself (the pectoral, shoulder and back region) I do incrementally feel improvement, which I rejoice in.
If you were to accompany me on my daily walk, you would not be thinking much about the act of walking. In the foreground of your mind, you’d be concerned with our conversation, and only think about walking if an obstacle came along. Whereas I would be thinking ‘left leg, right leg’ over and over, to make myself walk, as well as concentrating on the conversation. I am able to do this much better now, but a few months ago I could not talk while walking, as it took all my mental focus just to move my leg and keep balanced. To approximate this for YOU, imagine walking and talking with me while you are juggling; it takes more of your mental focus, doesn’t it? (Especially if you are wearing the suit of armour and dosed with novocaine). Even though I have improved a great deal, walking is still taxing. Of course, walking on uneven ground or in the dark is especially tough, because the shifts in terrain and changes in my own spatial orientation become harder to guesstimate visually. Walking while holding an object in my affected hand is tricky too; the more I concentrate on my steps the more likely it is that I will drop the object, but I have been trying this more often to get used to it. I am pleased to report that my balance too, shows slow improvement. Previously, I needed one of those 4-point quad canes that genuine old people use, though I am happy to say that mine never had tennis balls on the ends. (You have to draw the line somewhere.) Because of the extra topographical info it transmitted to my left hand via the points, it allowed me to ‘read’ the terrain. But now that I have gotten better at adapting to my new centre of gravity and compensating, I’ve graduated to now exclusively using a regular walking cane.
The neurological rebuilding of synaptic pathways in my brain is a slow process; much slower than rebuilding muscle. This means that, while I sometimes identify with the very old, I have much in common with a newborn baby. When we are born, much of our mental connections are being wired on-the-fly, as a result of input from the outside world. In fact, when I reach out to grasp something with my right hand, even the erratic way that my hand moves and the often inappropriate grab-action (either too hard, or not hard enough) reminds me of the clumsy movements of an infant. How many times have you picked up a baby, to have her jam her wee fingers in your eye, fling your spectacles across the room or tug frantically on your beard? Or perhaps you have seen small children roughly pet a small dog? The baby does not have the fine motor skills to do otherwise, because that baby is writing neural pathways, just as I am.
In fact, it was when I realized this fact that I finally began to understand the magnitude of what my body now must do, and how much time it will take. How long till a baby walks? A year? Year and a half to do it well? Two years old to be able to run well? It will take me at least as long as that, best case scenario, but more if you consider that the baby is more or less capable of constant movement whereas I am not, so babies wire themselves much faster than an adult. How many times did you have to practice to get the hand control to write a letter in anything other than crude scrawls? I will have to do that all again. I am also reminded of those long ago days as a toddler, when I had neither the muscle strength nor the muscle coordination to operate the door handle on a stiff door, or take the lid off a jam jar. Do you remember that? Do you dimly remember how it felt not to be able to do any action simultaneously? (think of a child-proof lid). I am getting a refresher course in such things. On a related issue, I find myself napping mid-afternoon like a child, and this is probably for the same reason; writing so many neural pathways is tiring.
Even as I am constantly impatient with the slow process of reconnecting neural pathways, I am simultaneously amazed that this so-called ‘brain plasticity’ happens at all. As far as I know, there is no other organ in the human body that rebuilds itself quite the way that our brains can do. When something goes wrong with your kidneys, you are stuck with it, or whatever crude surgical fixes modern science has come up with. But the brain is capable of rebuilding itself, like a lizard regrowing its tail. (As Woody Allen said, the brain is my 2nd favourite organ). My right-side balance, touch and proprioception has been destroyed but the good news is that it can be rebuilt. That fact is utterly amazing to me. Brain plasticity will be my salvation.
I’ve had some social landmarks lately, including my first foray out in a large social gathering (rather than a quiet dinner with 2 or 3 others) when I attended a really fun wedding of our friends Rhode and Sylvia. This was also the first time since my stroke that I had dressed up in fancy clothes, and the first time I got on the dance floor, which in my case was more a matter of standing in one place and swaying a little, but it was a great deal of fun for both Julia and I. So much fun that I definitely went into tired-baby mode long before we got home. I also had a wonderful visit from my great old friend Jon. He’s been a friend since I was only 17 years old, and now has a farm in Missouri, where he downed tools and drove for 3 days to visit me. This was very much appreciated by me. For the few days he was in town, Jon was able to accompany me on some of my walks and help me with some errands as we spent time catching up. Likewise, old friends Dave and Annmarie visited me when they were in town for a wedding. As I am sort of a shut-in; toggling back and forth from home therapy to hospital therapy, I really treasure the occasional visit from an old chum.
Recently I have been paying more attention to my healthy LEFT hand as it receives its own type of therapy; DRAWING. If I were a teacher or a lawyer instead of working as a cartoonist, I could go back to work now, at least part time, because those jobs are almost all mental and I could do them without the use of my right hand. My job was certainly mental, and required quite a great deal of thought, but had a major component of specialised work with my fingers, and those are far from skilled at present. Getting that level of return from my therapy will possibly take years, as I require close to 100% physical recovery to do the fine motor skills I once did every day. So, I have begun training my left hand to draw because I suspect that medical insurance will run out before my hand is 100% healed, and at that point having a LEFT hand already skilled at drawing would allow me to start working again, BEFORE a full return on my right.
I have managed to push beyond the early feeling of frustration (or, in my weaker moments, self pity) at the crudity of the drawings my left hand draws, to a point that I now enjoy it. I am never exactly sure what my Left Hand will make but it is a lot of fun for me to find out. I am mostly drawing in a sketchbook (thank you, Janine!) but Julia has also set up a cintiq for me to work on. That is still a bit of a chore, as so many Photoshop commands require the coordinated use of both hands, but I am working through it slowly. My Left Hand is certainly not an obedient an ’employee’ as my Right Hand, but he often comes up with something funny, so my first order of the day is not to tell Lefty too explicitly what I want in advance, but let him surprise me instead. And surprise me he does, as I have been enjoying this process, and it takes me way back, to a time I was about 12 years old, when I was never sure what would happen when I sat down to draw. Recapturing that clumsy joy of discovery at what I can sometimes do has been one of the few pleasant surprises of this otherwise difficult process.
It is certainly not the first time that drawing has given me a happy diversion from the mundanities of life and I am very much enjoying the process of re-discovery..