from the Lab Rat’s Desk – October , 18,2010

I am in the tenth or so year of having this, my charming, affliction. It has been with me for so long that I don’t remember how normal feels. I am sure if someone else were to wake up in this body even for a day they would be horrified. Normal for me means no drives to eat, sleep, drink, wake, put one foot in front of the other without thinking. My body feels as though it has been squished into an ill-fitting corset, if I lie down it feels as if someone is sitting in me, it is uncomfortable and it is alarming, but to me it is now “normal”. So is waking up with what feels like the worst flu every day.

After a few hours of getting myself pulled together I have two to three hours of limited energy into which I try to squeeze what has to be done, errands, maybe a visit or an appointment, and when I get back hurried housekeeping until I fall utterly drained into my chair. This is when my world becomes mostly virtual, although I always hope for a second wind so I could do something, anything, that I actually want to do, like paint, or play with my pets. Lots of things just don’t get done. I now understand how elderly people get to the point of being found knee deep in refuse and near starvation and no one knew.

It always seems that most people with an illness like mine have a significant other in residence who looks after them and the things that in my case remain undone. Sad in the sense I too would like someone to hold my hand night that are frightening because my body is doing strange and scary things (arrhythmia for instance), or someone to accompany me to appointments. I find myself no going to some appointment because I am just too tired it is too big a thing and I haven’t the energy. On the other hand there is no one to resent me taking so much of their healthy lives and keeping them housebound along with me. Perhaps too, if I had someone to rely on I might stop having to rely on myself and that alone might cause me to slip rapidly into the arms of the reaper. Right now I am too busy fighting to do much feeling. I am busy with things not busy with my illness.

What does sometimes concern me greatly is how much longer life is going to be this way day in day out. It is tedious, and I want more from my life. I want to make a difference. I want to work, I want to leave a healthy size body of respected work behind me. This weekend I attended a juried art exhibit where my X had two pieces entered. He sold one and also won an award for excellence in fine art. He deserved to win, and I was happy for him.Is it wrong I felt envy? I still paint but haven’t got energy to enter my work, walk around with my portfolio, schmooze go out and meet more and more people who could help propel my career as an artist forward, The same goes for my short stories, putting them on the internet has no helped in getting them published and the energy again escapes me to put a vanity press style book together, it is on the very, very long list of things I want/need to do.

Someone suggested I put together a play based on some of my short stories on being a dancer, and it is such a good idea but again, how can I? I have another play I’ve wanted to do for years I even have most of the actors lined up, but I have to find enough time and energy to read and direct the actors and promote the play. Everyone is always very excited and have confidence in me, but they don’t get it.

No-one can fully appreciate when they only see me occasionally that they are seeing me during the two decent hours I have that day. They have no idea that I am useless for the other 20 or so hours of the day. Even if I tell them, they do not grasp it, it only invites comments like “but you look so great”.

My mind works just fine, but my body cannot keep up. Lying back in my recliner I don’t feel so bad either, provided I’ve taken all my pills on time. It is tempting to say yes to all kind of things people think to ask me. Learning to say no is a problem for me. I think too that people who know me feel that once I commit myself to something I will do whatever I need to to make it happen, and I often do, but they are not witness to the after affects of having done that bit extra.

What would I do if a large pot of money were to land in my lap? I’d hire an assistant, someone to run those tedious errand, like groceries, picking up my meds, dealing with snail mail, housekeeping, freeing me up with some time to do the things i love.

I know I am very ill and I will not get better, I also know my mind will keep on working as if I were healthy. I did not do this to myself, it did not happen because I abused myself, but somehow it all feels like I am being punished. Punished by being kept on a disability so small I struggle to eat well enough, so low I cannot afford to socialize even if I found the energy. Punished by now being able to travel, or to take part in the world professionally as an artist either because of thelack of energy to promote or funds for materials. Punished by being made very aware that I am no longer part of the community, for the most part it is hurry up and die already. Infuriating because with just a bit of help I could be useful, but I cannot do it alone. So those of us like myself are just kept alive but not actively living.

Instead what looms ahead is more of the mundane, I managed to take a shower today, I managed to write this today and if this massive migraine abates maybe, just maybe I can do something about putting away my summer clothes and digging out my warm sweaters which I will then also need to launder by hand, not having my own laundry facilities. If I can maybe I can go to the store and get hot chocolate mix which I am out of, but likely some of this will not get done and the list for tomorrow will be longer again.
the lack of excitement is crushing.

The good part of my life is lived through my mouse. I play games on facebook, the kind of social games where i have met lovely friends on line. There I am as well as anyone, and I can edit my photographs. There I can for the moment forget that I am not “normal” and it helps fill the many hours of the day which are solitary and virtual friends help pass the time. I have pets to play with, farms to farm, hotels and restaurants to run. I am a powerful vampire and run two empires, while also pirating the seas.

Looking at the future is something I try not to do, it serves me better to live just this moment and not thing about what lies ahead. After all I don’t really know how it will be. I do know what is right now to be done, what I feel. Most of the time life just goes on no differently whether I agonize or not. My body need to be treated like that of a toddler, everything on schedules movements done with care and focus and lots of rests in between. My mind is not that of a toddler and I resent those who patronize when they know I am disabled/ill.

That brings on my last irritation, I don’t see myself as disabled. Disabled is someone with missing or non-functioning limbs, or senses, and they may indeed be able to become employed an be an active part of the community, some programs have been put in place to help. In my case I have no real disability what I am is ill I cannot work because I have no clue how I will be day to day. You and be disabled but healthy. I am not disabled but I am not healthy. On my pension I am allowed to earn another 500 per month, which they see as very generous, and if I were blind, or legless I am sure I could find ways to earn that extra bit every month which would make a tremendous difference. Does this not punish those of us who cannot earn any money because we are sick? We need that extra bit as well but are unable to take advantage of it to me that seems a bit cruel to people with MS, MSA, ALS and the like. Maybe if I live long enough to become a senior there might be a program of some kind to keep me involved in the community but somehow for the moment I feel like a leper without a colony.

No matter what I am still here and considering the alternative I am thrilled about it. There is always the possibility of change, change in a good direction, something good can happen,

–
aletta mes, vancouver, BC

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