This most dreadful/worst disease – some thoughts

04Jan09

My life is no picnic. Like most persons with these diseases I cannot sleep, eat, walk, talk well. I have had to repeatedly teach myself toilet-ing to prevent incontinence. I have had the torments of being treated like a child by the well meaning, and the impatience of those unwilling to wait for my considered answers. Sometimes my food has to be liquid, and other times my stomach is a bottomless pit because my broken brain tells me I have to keep eating. I am in constant pain where my neck and face contort from spasms, as do my feet and legs and on bad days my hands also.

I am pitied for my pain and at the same time often criticised for taking medications to deal with them so I can function and remain independent. Plainly life like this sucks. My friends have given up on me other than an occasional and polite query by email or telephone. My relatives visit sparingly as they have very busy lives themselves. I come from a background of stern stoic people who expect you walk it off and keep the condition out of public sight. Most of my life is spent at home in this chair.

My social life is here in this chair, at the computer. I have adjusted the keyboard with Velcro and tiny non slip pads on the keyboard. I use a trackman mouse alternating with using directional keys on days i am too shaky to guide the mouse. It is all very laborious. I detest not taking a shower every day, but the fact is that I haven’t that level of energy, there is only so much, sometimes you choose eating a second meal and other times skip the meal and take the shower. I am deeply grateful I live where they have affordable (well sort of) cable television, this is how I remain part of the world around me.

I have a dog, two hamsters, three cats and a fish tank, that makes me happy. The dog gets me up and around, he tells me when someone is at the door, protects me when i fall outside, helps me up, tells me the fire alarm is going off, and he thinks I am the best human being alive, he could care less if I am sick of well. I happily feed them all and keep them clean. I dread a time when I might no longer be able to, but for now I feel tremendous responsibility which for me is an excellent motivator.

I know for me the best way to deal with the disease is to keep moving to keep doing and if it becomes too hard, find alternative ways of doing it. I utilize strips of Velcro, clothespins, anything. I avoid certain foods because they make my life worse but make an effort to continue eating because general health needs to be excellent in order to avoid slipping backwards into the abyss at break neck speed.

This disease sucks for having taken my livelihood, my marriage, my dreams for the future, savings from the past, friends, skills, dignity. I am going to be 55 next week. Finally I will be eligible for some senior citizen programs (I hope),after ten years of not being eligible for anything because I was not old enough nor had a popular disease with a support/association to help out.

Now we’ve come to my but. But, it is not the worst disease, not by a long shot. I have had friends die from far more horrible diseases and at much younger ages. Unlike Huntingtons I have my ability to think. Unlike most cancers there are no awful, painful and frightening treatments, which may fail. I have had no body parts amputated. My mother had her breast amputated in her forties and she grieves the loss each and every day. A friend of mine has Scleroderma and has her body slowly turning into virtual stone until her lungs will no longer expand and contract. She is not old, and has not had a normal day with her children as she was ill from the time they were young. Mine is not the worst disease. I have worked with persons with HIV and full blown AIDS, grateful for the experience because I learned a great deal about coping from them. I have held them as they reeled from unrelenting projectile vomiting when taking their drug cocktail the first few weeks, and they were the ones fortunate enough to have access to those drugs.

I am just old enough to remember polio and TB, I think both of those were worse too. Happily I have no mental illness, which I think is much worse, especially since this society treats them worse than lepers and criminals. I think the elephant man was much worse of, as are many deformed by disease or fire/accidents in a word where we are most often judged on appearance first before anyone bothers to get to know “you”.

While I think I was “tragically” young in my early forties to be sidelined by disease, I did have a life, and the accompanying memories to live with the rest of my life. I had children, I had a happy marriage (for a time), I had a career (ballet) which I loved, I had friends, admirers, I travelled far and wide (it could never have been enough), I owned businesses, I won awards for everything from drama to swimming and running hurtles. There are children who will live their entire lives confined to wheelchairs, and many will not get past early adulthood, they will have fewer happy memories than most of us. My disease is not the worst, most horrible or dreadful.

For ten years now I have known that my life will in all likelihood be much shorter than expected – we have such a sense of entitlement, everyone expects to live into their eighties or nineties. Best not waste your life away, I didn’t – never enough to suit – but definitely I have done more than most ever will, and I am not done yet. It is becoming sport for me to see just how much I can still do, accomplish and contribute. Friends may have written me off, doctors may have written me off, but I have expectations of myself. Those who know me best simply expect I will continue to pull the proverbial rabbit out of the hat day after day and outlive everyone. I just might rabbit, I just might.

It is neglected in discussions of these kinds of disease that much of what decides prognosis has little to do with disease and more with our energy and spirit to keep fighting. It is and exhausting illness, pulling rabbits out of hats, looking fine when you are not, learning and relearning basics like using the toilet or swallowing every day. When every step has to be mindful, every word taking multiple attempts to process appropriately, hallucinations sorted out until they make sense, it can all be done but the cost is life energy, we are being drained of it every day. How do you replenish this energy when eating itself drains you?

I can tell you only what works for me and some others I have share this with. I need to be loved, even if just by a furry little hamster, I need to be tended and helped with the mundane so there is some energy left for the stuff that gives me back dreams, conversation, laughter, being with people.. I need kindness and patience, don’t finish my sentences for me, just wait, or let me write it down, or I will shut down and stop trying, encouragement is so helpful. I speak as slowly as I write but in reading this you’ve no idea if it took Aletta five hours or fifteen minutes, the computer has the patience to wait for input, too bad people don’t.

We are in a society which feels entitled to the best and most of everything. Once someone has a condition which takes away a good lot of those implied entitlements they fall outside the acceptable field of vision. Shunned for not measuring up, shunned for reminding us the entitlements are not there for everyone. These diseases are harder than most for friends and family because the terminal nature of the disease is apparent sometimes years before the end (decades in my case). Most hospice programs will jump in and help only the last 6 months, but when would those 6 months be? We exhaust everyone’s good will, they even doubt in some cases where you’ve managed to maintain the appearance of wellness that there is anything wrong with you at all.

For me the greatest insult is now “but you look well”. More convenient to have grown some horrible tumours to show for it, deformity or total wasting, or at the very least have the good graces to be seen in a wheelchair. They dread to see you die, but, are worn down by the length of time it is all taking. Somehow they are convinced you are not joining in because you don’t want to, because you “look fine”. I am not given credit for the mind boggling amount of time and effort it takes me to get dressed and walk upright. So not living up to what is considered “normal” and not keeping the pace of life I find myself out of phase, and yes, it is isolating.

While medications take care of much of the symptomatic misery and pain the isolation of not being able to keep up (energy, financially, socially) and know it will only get worse and you will die. Everyone dies, but the luxury of denying it is gone for me, there is little available energy yet I find I must use some of it denying the reaper every day, much like brushing one’s teeth. There is one benefit, I take nothing for granted, I love life, even the bad bits. I would have said at 20 that I would never want to live this way – just shoot me if it gets to that – but I’ve changed my mind – I want to live. Every day I find one bit of it large of small, grandchild or cottonwood fluff that makes life so incredibly glorious that to put and end to it prematurely is so very wrong.

Fortunately this disease can have the pain and discomfort dealt with, and that gives me the comfort required to enjoy and take part in living, even if most of it is in an armchair by the computer with my doggy beside me. I am not in a hospital hooked up to multiple machines in absolute agony, that makes this far from the worst, most dreadful disease there is.