Last Wednesday, this amazing thing happened.
I like that. It's a good start.
It comes courtesy of our friends Ros and Dave. Dave has MS, and if you don't know what that is, then you should find out. I reluctantly admit that I had very little knowledge of just how it worked its nastiness till after everything changed for me. Until then, illnesses such as multiple sclerosis and cancer were what other people got.
Ros sent me this link to a story on an excellent blog. I admit that I don't know just who Wheelchair Kamakaze is, but gee, I like his style.
I was totally blown away by this paragraph. The reason is that it could be describing, with clinical accuracy, just what the tumour in the left side motor centre of my brain is wreaking on my body, and the frustrations that come with it.
Not only am I sick, but I’m sick of being sick. I’m sick of dragging around a useless right side as if it were a carcass, even while my left side continues to weaken. I’m sick of relying on the kindness of others to cut my food, zipper my jacket, and button my pants. I’m sick of the prospect of taking a shower being as ominous as the prospect of taking a trip to the gallows. I'm sick of the fucking wheelchair. I’m sick of only being able to sleep in two-hour spurts because whatever position I’m finally able to fall asleep in invariably becomes so uncomfortable that it interrupts my dreams. I’m sick of muscle spasms that make my limbs shudder and shake as if possessed by demons. I’m sick of always being so goddamned fatigued that calling what I feel “fatigue” is like calling the Queen Mary a dinghy. I’m sick of the meds and I’m sick of the lack of meds. I’m sick of having to be brave, I’m sick of always seeking the peace within, and I’m sick of not having the freedom to let my mind wander, because it could very well wander into a real-life horror story too demented to be conjured up even by Edgar Allen Poe. I’m sick of watching my dwindling abilities turn into disabilities, of looking on helplessly as my world gets smaller, of watching the walls creep in. So much for my being an inspiration, I guess.I haven't been subjected enough to the wheelchair to to summon up the adjectival expletive above, but even ours, smallest and lightest possible, is still an awkward creature to carry and use. Nearly everything else is right on the money.
Most of the time I just don't feel that angry. What is it that makes me angry? I guess the myriad of small things, and some big ones, that make me lash out at times. A lot of them are merely frustrations, but some are serious because, purely selfishly, they can lead to rash decisions on my part that could be fatal for me.
I've said many times that I don't feel the 'injustice' of having this brain tumour when I consider the genuine injustice that plagues the globe. By any world comparison, I've had a dream run, so let me not go back down that well-worn track. I do get angry about the injustice, the cruelty, the selfishness and irrationality we see all around us, but as I said in my previous posting, there's usually precious little we can do about most of that.
What makes me angry on the personal level is being disappointed in myself for some reason, and much more so if that comes out in an unjust criticism of anyone else - as it often does. This is especially true of anger seemingly directed at those on the spot, Tracey and Christian, who have shown nothing but continuous care and concern for me. That sort of ingratitude causes stress that rebounds on us all and keeps me awake at night when it happens.
I see that I've managed to turn a vice into a near-virtue somehow. It's not. As my friend Joan says of me, taking her cue from The Life of Brian:
He's not the Messiah. He's just a very naughty boy.And I have no idea why Tracey should have thought the opening words of Mr Kamakaze's piece were so funny that she nearly choked. I ask you, what's so hysterical about this?
My wife attends a monthly caregiver support group, though I can’t imagine why, since I’m such a prince and always a tremendous pleasure to be around.*
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*Wheelchair Kamikaze, "The Rants, Ruminations, and Reflections of a Mad MStery Patient" http://www.wheelchairkamikaze.com/2013/04/anger-mismanagement.html
Thanks for sharing these thoughts, Denis.
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Denis, I am at a distance and from where I sit you have always come over as remarkably cool, calm, rational, objective and uncomplaining; in fact, the same old Denis. Don't feel disappointed at yourself when you feel you haven't lived up to this image with those close to you. It has not been easy for you and not easy for them. I think you have all been wonderful. You've got enough to keep yourself awake at night without guilt feelings. You are not unique. We all know we can relax and be ourselves - letting out all those things we take pains to conceal from others. This is the way it works. Most of us, without a fraction of the problems you have all had to deal with, put on a good front, but let our anger and frustration show to our nearest and dearest. Unlike you, however, we are not sensitive enough to lie awake worrying about it. Don't be so hard on yourself. Love to you all. Bob
ReplyDeleteIs ANYONE 'always a tremendous pleasure to be around'? Let alone someone in such a distressing situation?
ReplyDeleteGreat, though heart wrenching, description by Mr Kamikaze.
I haven't had much experience of the 'very naughty' side of you, but I think Joan thinks I'm 'very naughty' too - she knows I lose my temper when stressed. It's interesting to me that we humans expect so much of ourselves and have expectations, or goals, of perfect behaviour. Animals lash out when in pain or fear -it's natural -and they purr or wag or frolic when things are good. I'm not botoxed out of expression yet, and do TRY to be good and nice. It just fails occasionally.
When my mum had a quite major stroke (yes, here I go again), her personality changed. She would sometimes lose HER temper, which she had so very rarely done all her life. That is common with stroke patients, another illness most of us know too little about.She was confused at her new found situation, and in pain. I found it very hard to cope with, alongside the knowledge that this was the final furlong. No matter what efforts I put in to help, they were just bandaids. That knowledge alone is a psychological handicap (too mild a word!)The labours of Sisyphus is more like it.
So you, Tracey and Christian are surely not superhuman and surely all 'act out' at times, in your individual ways.
OK, you've given yourself a good dose of mea culpa, we know now you aren't saintly, can I just enjoy my friend again?
Julie M xx
A quick clarification before any other comment. There are two Joans - and the one you're thinking of isn't the one who made the Messiah comment. She'd be puzzled if she thought I'd credited her with that one!
DeleteDenis I visited the home of a guy about to undergo surgery for cancer of the esophagus this morning. It's Sunday, but he was at work!, so I met his wife - mid 40's; still in dressing gown; quite unhinged and teary that she couldn't find the minor bit of paperwork I had to ask for, despite my assuring her I could anyway get it by one simple phone call.
ReplyDeleteShe said something like "Sorry - it's the little things like this stupid missing bit of paper which set me off. I'm pretty brave with the big things like how to proceed when talking with the doctors".
I can't link this directly to what you've written, but your words made me think of this morning, and my wish that'd I'd been able to do somehow better.
!! above by kvd
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