From the Lab Rat’s Desk 2009 – this dreadful/worst disease

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 po0lite 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 m9oving 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.

From the Lab Rat’s Desk – December 01, 2008

I’ve been on this road of neural death with diagnosis attached for about eight years. Granted a few years beyond the typical prognosis, and I should be happy about that, but it can be a mighty grim path to travel. Of late, it has not been lost on me that I make this journey solo, without a “significant other”, “life partner” etc.

In this society that is a great disadvantage. Add to that some other disadvantages such as being and immigrant with no well established extended family. There is no pension of nest egg built before becoming unemployable, I was in my mid forties the nest was just emptying out and I was embarking on those years one typically uses to build that security for later. Along with my unemployment went the long term disability, pensions etc. Although dutifully paid somehow it was not there when I needed it. Had doctors been a little more willing to attach a diagnosis I might have had some eligibility, but it took them too many years. The only other sources for services are faith based charities and I am not a card carrying member of a parish or church, nor should I have to be to be cared for when I need it. Yet the government underwrites the faith based charities where you sing for your supper, including those where first you stand in line along the street for a few hours for your tray. There is lots of food but few are allowed to hand it out, charity is heavily regulated.

The safety net insists you use up all savings and holdings before you have the eligibility to be on “welfare” and unless you are first on welfare, disability applications are not taken. I was unemployed for several years before my application was accepted and two appeals before it finally went through and I was destitute. From that point in life there are few ways to recover your standard of living.

On my own I could not afford to rent anything other than a room, an “SRO”, which means no security, no privacy and most of them are very scary places with no accessibility for persons with wheelchairs and other needs,. My son, who is also disabled shares and small one bedroom apartment with me, he has the bedroom, I sleep in the living room, this we can just afford. This way we both live a marginal but private, secure and dignified life. However we are tied by need to each other, if either of us were to leave the other would be unable to afford the apartment, it is a pretty scary world if you are disabled and single.

As world finances are in turmoil you can’t help but be fearful that the first cuts will be made to services, not corporate bailouts. Anything less than what we have now will put us on the street. You wouldn’t do it to a dog. Horrible choices – if you can call them choices are always put before you, accept and apartment but lose the dog and kick your disabled kid to the curb. I was shocked they would even consider that a choice.

What I have learned is that what one social worker said to me many years ago “you’re still attractive why not find a man and get married before you lose your looks”. I was disgusted, basically I should consider my only means of certain survival is to find a man, any man, or woman, and live out of his/her pocket. Take some abuse if need to, love isn’t necessary, just would be nice if they liked us and treated us kindly. Wow, we’ve come a long way as women haven’t we? Not far from the poorhouses of the Dickens’s novels I read in my youth. As it is my survival depends on my son sharing the apartment. I am at all times at the mercy of someone else. The notion that there is a safety net is bogus. I am not safe, far from it.

Horrifyingly I continue to deteriorate and I don’t know how long I can manage, continue like this. As it is now all my time is spent either sitting in a chair trying to keep busy with the few abilities I have left, or hygiene and housekeeping to very basic level. No more cooking of full meals, it is heat and eat now. I have simplified my wardrobe so I can quickly wash in a sink and let dry fold and put in a drawer – no ironing, no complicated fasteners. My one great joy is taking out the dog once a day.

Everyday I agonize that there is noway I can still even hope to make some income. I have tried, but stories didn’t find publishers, only a few paintings were sold, and I no longer have any energies left to do promotions. Friends are all gone, some keep in touch but at most I see a friend once in 6 months. I cannot remember my last hug, ir was about a month ago. I am human, I ache for human contact. I am often upset by my deterioration but have no one to speak with about it. No one holds my hand, no one gives me a hug.

I try to feel good that at least I am not dragging a husband into this depressing scenario, cold comfort. Again I find myself living in a world where the only way to feel safe and cared for is to be coupled up with someone who feels committed to stay, and preferably has an income and insurance as well. If there really was a safety net this would not be the case. If i had my own income I might be able to purchase the services of a live in or out companion. I think with a little help I could still do some writing, painting and if fortunate find a market for it as well and have something to leave my kids.

Where did it all go so terribly wrong? Being and immigrant is the wrong thing to be, I cannot draw on what my parents and grandparents had built up back home. My marriage went to bits and I found a very sexist world still existed. A world where doctors would speak to your spouse as though you were not even in the room, but without a spouse no useful information was imparted not were your complaints given the same weight as when expressed through the spouse. We have not come a long way as women, not at all. Not being a member of a wealthy or at least charitable church puts me with less resources to draw on.

I find it offensive I should buy into a faith for the sole purpose of a better standard of living, it is repugnant. I learned during the early years that Catholic for the most part was not considered “Christian”, and if I were to mention having first been raised Buddhist, well, there were many suddenly refusing to break bread with me among my “Christian” friends. Worse still was the realization that much of these resources were funded by our tax dollars, and to me faith should not be attached to faith.

Also I found that some diseases are better than others, and mine did not fit with any of the big organised disease charities. The one small organization which finally accepted me as a member, the BC Ataxia Association, still grumbles that mine is only a “sort of” ataxia unlike the inherited versions. Even the on-line support group which was set up for the disease which I was diagnosed with found my trials of unorthodox treatments so offensive as to attack me for it until I left. I was brought to tears with all those attack emails, and on top of it many of the member of that group suffered from very different diseases than mine. I stuck with my unorthodox treatments and at least I am still alive, beyond my prognosis.

Really though, should someone struggling as hard as I am have to suffer so many indignities, often at the hands of those supposed care for me and all those in my position. There are days I feel guilty for being a single immigrant with no nest egg or portfolio, unwilling to kick dog and son to the curb and live in some roach infested SRO until the desire to live is good and dead, then with my power of attorney in the hands of a government run nursing home I will quietly be given just a little too much morphine. That is the thought that does make me cry, quite often lately.

I need only a little help and encouragement, like a potted plant needs fertiliser, sunliight and water, and so does every person finding themselves in this position because I am certainly not alone, there are persons everywhere in this predicament, we don’t all have in home carers, many struggle on their own. If my hands fail utterly and cannot type, my voice falls silent, no one will type for me. People wither without human contact, you don’t get many hugs in my position. Even family stays away because seeing me so different from what I once was is “too depressing”. Of course their lives are busy, and visiting me is not convenient.

I can scream “but it isn’t fair”, and I think I would be right, but fairness does not live in this world. Women most especially were fighting wrongly for equality when instead they should have fought with all members of the human race for fairness no matter the gender, ability, race or faith. I cannot be equal when I cannot do what you can, but I should be able to tap into fair treatment as you can. Winter allows for more thoughts on the passage of time, and it raises my fear level, one hopes to end life in a better world than the one we were born into.

We should at least laugh when we can.