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Saturday, September 28, 2013

My right foot – and other bits

Christy Brown (1932-1981) had cerebral palsy, leaving him with control over only his left foot, but as an artist and author, he made good use of it. His life story as told in his autobiography, My Left Foot, was made into a movie in 1989.

Sadly, my right foot is just the opposite. It's damn near useless.

Brain damage or malfunction produce phenomena for which you can be quite unprepared, even though their effects make perfect sense in retrospect.

My Right Foot
opposite in every way from his left
   Let me give you a couple of examples. When I am going to sleep, I lie on alternate sides, sleep by sleep. As I turn to lie on the right side, I encounter this strange object. It feels like the smooth branch of a young tree. It is warm to touch and obstructs the path for my shoulder. Something hangs off the end at right angles to the main branch.

   I touch it with my left hand. I realise, with a shock, that it is my right arm and hand.

   Something then registers in my brain that the arm has the sort of sensation my lip feels when I've had a local anaesthetic injected into my gums by the dentist. I can feel something but know there’s no sensation deep down, nor of heat nor cold on the surface.

   It feels utterly weird, this arm, as if I don't own it – as if someone has strapped this thing on to me. Using my left hand, I can arrange its placement for sleeping, each portion bit by bit.

   Yet it can be made to move on its own, with effort, in certain directions. The movements are, medically, spastic. They overshoot or undershoot the target. The fingers may grip one way but not another. I try to bring index finger and thumb together, and they can touch, but the moment I try to squeeze them together, each curls up in its own direction.

   It also manifests in other ways. Sometimes I am trying to open the laptop computer – one-handed, needless to say but I'm saying it – and it won’t open. The reason, I eventually discover, is that my right hand is sitting slap-bang on the lid, resolutely and mindlessly holding it down, while the left is doing its best to get it open. (By the way, I challenge you to get most modern laptops open with just one hand – it's not quite as easy as it looks the way they’re weighted.)

   Then there’s the leg. When I sleep, both legs are drawn up, sometimes to a right angle. When I wake, I can stretch the left leg so the knee is locked and the leg is straight. I go to straighten the right leg and it has no intention of obeying. I know if I give it a little help with the left foot it will, but I don't want that. I want it to straighten out on its own.

   I lie flat on my back. The leg is still drawn up, in the same position as when I woke. I summon up all my willpower to get it to move under its own command.

   Usually, given time, it will start responding very grudgingly and then finally cooperate, slowly, like a naughty child forced to do a task it would prefer not to. Both legs are now flat and I can stretch – but I have to be careful, because if I overdo it, then a fierce cramp can develop in the right calf or quads.

   The right foot. It's dead as a doornail. (Don't ask me why a doornail is so dead. I have no idea, but I’ll find out what the oracle says in a minute.... I did. It's fascinating.) I order the toes to lift or wiggle, and they just lie there. I can't get a trace of movement out of them if it were to save my life.

   All the big toe wants to do is curl downwards. I think that's a response to the ankle's collapse in function, producing “foot drop”, which is every bit as nasty and inconvenient as it sounds.

   But here’s the funny thing. If Tracey’s putting an ugg boot on that foot, and touches a certain spot on top of the foot, an involuntary response causes the toes to spring to life and curl upwards like magic for a second. "Surpri-i-se!" says Tracey. It looks ridiculous and we laugh, but somehow it feels good to see them move at all. It's as if they’ve just been messing with my mind all this time by lying doggo. (It's all the other way, actually. Mind messing with toes....or not, as the case may be. You know what I mean.)

   What is really happening is that my right side is paralysing, bit by bit. The process is inexorable, because all the physiotherapy in the world doesn't allow for the effects of the next seizure, and the one after that. For a stroke or longer term deterioration, physiotherapy can effect a cure or stall off the evil day. But in the case of a brain tumour, it's not much use when its benefits are negated in two minutes by a seizure.

   One last thing, not related to arm or leg. For these I'm blaming the addition of Gabapentin to the drug cocktail, because they started happening only then, but it may be pure coincidence. I'm referring to the onset of periods of intense drowsiness. 

   I've never experienced them before, and they’re damned inconvenient. I’ll be sitting typing, for example, get struck with this intense desire to close my eyes, and next thing I know, I look at the screen and find my hand's been resting on the keyboard and I've typed a thousand letter Cs.

   The nearest thing I can equate it to, only this keyboard drowsiness is much worse, is when I've driven a long distance, and have that intense longing to close my eyes while driving. (That’s when I've stopped, folks. I'm not entirely stupid.) I'm sure you know the sensation.

   If I try to fight it, it won’t give in. At times getting up and exercising stall it off, but it usually comes back. That hero in movies who fights off knockout sleep-drugs, he's a better man than I am, Gunga Din.

   Again, it could all be traced to the brain tumour itself and its knock-on effect, but there's nothing for it but to deal with all this as best we can.

   We can do no more, but we try not to do less.


  1. What a bugger if you will pardon my French

    I have even fantasised about amputating those useless blobs - astonished to learn that there are actually people that are compelled to remove perfectly serviceable legs. The fact that the blob sometimes, as you describe so well, has a life of its own is perhaps its saving grace.

    I marvel at your sanguinity (??) - I suppose I should stick to the noun and say ability to be sanguine. Being blessed with a degenerative disease rather than a brain tumour, I can at least fight back. This is being painstakingly typed with the blob on the end of my left arm. I have to admit I cheat and use my right hand for the most common key - backspace.

    1. Dave: see my 'comment' below, which is really the reply that should be here. It's so easy to write it as a comment by mistake. You'd think after all this time I'd get it right.

  2. Reading this, it seems somehow doubly unfair that the right leg is unresponsive to command, yet retains the ability to cramp? You would think there'd be some sort of beneficial trade-off, but seems not. I've had a lot of cramps over the years, so in a very small way can offer sympathy from experience.

    Totally off-topic but a question to both Denis and David: have either of you seen the movie "The Intouchables"? Nothing profound, except it is; nothing significant, except I find it quite uplifting. But you'll have to pardon the French.

    1. It used to cramp more, but as the leg weakens they do seem to be less painful, so there might then be a trade-off. I used to find a relatively easy fix was to use the left foot to push the ball of the right foot upwards towards the knee – that could settle it instantly at times.

    2. I'd never heard of The Intouchables till now, but it looks as if it would be an intriguing film from the commentary.

  3. I wrote quite a lot of this with you in mind, Dave, knowing that you'd be well aware of the progress of these sensations. I'm glad to reaffirm that I haven't reached the point yet where either limb is entirely useless. At the same time, each day now shows a weakening of the neural links that give strength to the limbs, and this can be very frustrating - but we have to live with it, make adjustments as you did to compensate, rely more on pieces of equipment.... you know the story only too well.

    I am very glad that you can fight back more effectively than I, because there's a longterm benefit in it for you. My life is in three week bites and, as Tracey pointed out to me when we were having a quiet tete-a-tete a few nights ago, my condition is now a good deal worse than it was before I began Avastin.

    As a hunter and pecker of keys now that I use only one hand just as you do, I know also what an effort each sentence can be. I do envy you the ability to use the space bar with your right hand. I'd just love the capacity to use the shift key with the right hand and save all the caps lock pressing.

    I so wish you and your lovely wife and carer Ros well on your journey and the trials that I know are ahead of you..


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