From the Lab Rat’s Desk – January 20, 2009

Life only comes with one instruction – “live”. There is something very wrong with a world where it is considered acceptable not to follow this one instruction and cut short the most precious gift of “God” the “universe” or whatever deity you choose to accept. How can a man with ALS survive for more than 30 years and have the world hanging on his quantum theories suffering the same problems as Dr. Turner (Jan ’06 article on Dr. Turner on the BBC’s website (posted on the PSP Forum 3 years ago): http://news.bbc.co.uk/2/hi/health/4625538.stm)and others who’ve chosen to end it. Others write books while stricken, or paint paintings. Many are involved as grandparents, dog owners, cat owners, friends and find value in their own existence such as it may be. I doubt an atheist would have an easier time making peace with the decision to end life, after all an atheist has less time to live in this universe than those who believe there is “more” what ever this may be, heaven, becoming part of the universe’s intelligence, or a new soul recycling old bits of ourselves. My own opinion is that she suffered less with her neurological problems than she did with depression and the failure of those around her to help drove her right to those greedy Swiss “doctors”.

As for patients living in various forms of denial, I must commend it as a coping skill. I wake up everyday and compare myself to the day before, worse or better, and in this way I fail to notice how much I am actually losing, the increments are always small. I avoid lengthy introspection, that is depressing. If I comparted even to six months ago I could be brought to tears. Six months ago I could complete in two days what now takes me a week, and much I can no longer do at all. When it comes to my future it is the same, today and tomorrow, no long range plans. Lengthy introspections are avoided, they take me to the edge of the abyss ad that is not a good place to be.

I hold on to my dignity as much as possible. I will not be seen on bad days. Clothes no longer have complex fasteners nor are they tight fitting, and the heels on my shoes are lower and broad, but I look nice, and I try to sparkle around people because it makes all our lives happier. Being around people is valuable only when they are not taking you by the hand and walking you through “what if” thoughts or being frightfully sad for you – the only way to react to that is to become sad, maudlin, angry and guilt ridden – all at once. I am a very direct person, it helps, I tell everyone what I need and want and those who can deal with it are in my life, and those who cannot are not. Not surprisingly my family was relieved to be told what I needed and what I wanted as far as being sick went. I arranged for the brain donation papers, I wrote what I wanted down on paper and signed and witnessed. I wrote some letters to people who I felt would need that letter to hang on to if I were suddenly gone and things were left unsaid. Since then those letters are largely not needed as I don’t think anything remains unsaid. What a weight that is lifted off the sick shoulders.

On spectacularly bad days I wonder am I worse or have I been here before. Happily I journal about the illness (as if it had it’s own life), and I can pick up a volume (ten years of journaling since being diagnosed) and answer how many other times I have had such a day, or not. I also have set of photos taken those years taken without makeup, and this too shows low and high points, a progress gallery of sorts. The journals and photos allow me to observe more objectively and this does not give way to panic, I don’t need to personalise that if I do not want to.

We die of complications, and if our general health is spectacular chances are we can live a long, long time, and the decline will be less rapid. Beyond that just wanting to live – attitude- is paramount. I am in love with life, all of it, I look forward to every spring,delight in every animal I can see or interact with, I love the sound of children laughing, a cat purring, beautiful music. I like to laugh, I like to learn, I like television mysteries. I don’t concern myself with an afterlife, there either is or isn’t, if there is I hope to be considered deserving enough. I could content myself with just the life I have. Perhaps because my life has been filled with pain and loss not of my own making I pick and choose what to react to, often the only choice I had.have is “do I want to be happy today or not?”

I could make a very long list of what this illness has cost me, every one of us could, but I have also gained, I take nothing for granted, I know today could be the last. That said I’ve outlived some of my young friends all of whom died before turning 40. I have seen their last days of trying to draw breath. I cannot dwell on it, the pain of dying in some cases is awful and in others not, and nothing can prepare you for either so cast aside those notions.

Dr. Hawking continues to find joy in life, and wouldn’t it be frightful if you took yourself to Switzerland to terminate; and the day after, the pharmaceutical giants announce a breakthrough to regenerate sick brains.

Meanwhile I try to stay with my yoga every day, even if it is very little, I take care of myself as much as possible, and I find reason to be happy. I tried the lithium, it didn’t work , feeling a little desperate for success I asked the doctor to maybe let me try again, but he said no, it made no difference and it won’t next time either. The definition of insanity, doing the same thing and expecting a different outcome.

Parkinson drugs work on Parkinsons, and my current doctor did not push me to try. Other doctors wouldn’t even treat me unless I tried them, imagine, some doctors also turned me down because my condition was to complex. It never occurred to me a doctor could turn down treating a patient, what a revelation.

Life was worse when no doctor would treat the symptoms, somehow there not being any treatment translated to doing nothing at all, finally the current doctor was willing to treat symptoms to make life bearable. Buscopan stopped the drooling and the extreme vertigo and my hearing became better, narcotics for pain, neurontin for peripheral pain (the kind narcotics don’t help), burning sensations and to a lesser degree the arrythmia, duvoid for my bladder dysfunction (retention) and trentall to make my blood flow better. Other symptoms are managed by natural means (yoga, diet, lifestyle, laughter,friendships)

The greatest casualty of my illness was having any social life or productivity with rewards (an income), those I have a hard time with. Being connected on the computer is invaluable, and every time someone tells me what I have written has helped it makes up for all the paychecks I have missed out on. I can travel via the computer and the television, and as I said I don’t think it helps to dwell on losses. Being sick has changed nothing as far as who I am, I never felt defined by how society views me or by what toys I own or what mountains I’ve climbed, so being a potted plant is just fine, as long as I can be well tended. Even an atheist would prefer living to the alternative, death is not a rational choice.

aletta

From the Lab Rat’s Desk October 26, 2007

Today I went to the consulate with all the paperwork, they were very helpful and in two weeks I can pick up my new passport. The whole lot photos included was cheaper than paying the Canadian authorities for photo ID and this well do equally well and allow me to leave and come back out of the country a little something I’ve been unable to do for a long while now.

I am sick and tired of giving money to a government which abandons me whenever I have a need and leads me to live in fear, fear of poverty, (too late for that one) fear of homelessness and fear of being deported because they suddenly take a dislike to immigrants. I may even move back. I had to buy some kind of photo identification and since the passport of any country will work, maybe that mugger in some twisted way allowed me to have one choice in my life – not to give the bastards one more dime.

I am still looking for any improved housing, but so far there is little on the far horizon and nothing in the foreseeable without further loss in quality of life. My best bet is to hang in and try to not slip further down into the abyss ogf red tape and contempt.

One thing I do know, I could not have made it through the past few weeks without the help of friends and family. Thanks to them, I am feeling a lot less frieghtened and I once again feel like part of humanity having once again established to the standards of public and bureaucratic acceptance that I am Aletta Mes, I exist and I should be welcome in any country of the world that accepts Netherlanders. ATMs again say hello to me, now just the bus pass to go, literally and figuratively.

Apparently I can expect some help from my Member of Parliament’s office with the victim’s fund claim (hopefully it is not just another empty promise), and a few other forms await my attention.