I am Elle and I live in Illinois and I considered myself to be easy going and fairly upbeat. While I would never be mistaken for being bubbly or perky, I don't consider myself to be negative. Friends would probably describe me as a good listener, funny, and compassionate--at least I hope they would. My husband Harry suffers from Huntingtons Disease. Huntingtons is in the same family of neurological disorders as Parkinsons and shares a few symptoms, such as the shaking. It is a 20 year long degenerative disease with a predicted onset of 40 years old. He will be 40 in September 2012 of this year.
We have been married approximately one year and I can see the changes in him between last year and now. He is getting incrementally worse. I love him fiercely but I don't know how I'm going to juggle everything and keep sane and calm. I am working on my masters degree and currently work for the city in which I live. He was a writer but got laid off over 3 years ago and hasn't been able to find steady employment. He is smart, sensitive, ever laid back, kind, and sweet. We recently celebrated our first anniversary.
Being newly weds is particularly difficult because any future plans or hopes seem so far away when dealing with the uncertainty of an illness. I've been on the fence about children for as long as I can remember, but to have the realization that kids may be out of the picture of our future makes me sad. But as his condition worsens I fear for our potential children's physical safety, emotional and mental happiness.
The worst is the round and round of my thoughts. There's so many decisions to make and most of them are big questions. Do I even want kids? Maybe I will cherish my freedom at 54 to make decisions for only myself. But by the time my husband passes away I will be unable to bear children-without great risk to us both. I also did not want to raise my kid alone. I watched my mom do it and it looks exhausting. I've seen married couples who are worn out completely, the idea of doing it by myself quite frankly terrifies me. I know that I could, but do I want to? And even if I did is that fair to the kid, to never know his/her father? Growing up without a Dad SUCKED, and I only got a taste of it because we met when I was 13 and were able to form a relationship. But I remember making Fathers Day cards for my grandfather, an alcoholic who barely spoke to me or acknowledged my presence. Girls especially need a father figure because fathers teach girls what to expect from men. Girls generally will search for someone to fill the void and seek approval with men. While not all girls do this, as a fat girl with low self-esteem, who developed early and was propositioned by quite a few dirty old men--sometimes you just want to know that you are loved and cared about regardless where it comes from. I never took any of these men up on their propositions, but if my self esteem had been low enough, my mother wasn't so strict, and I never met my father--I might have sought out one of them to fill that father shaped hole in my life--which could have been life-ruining.
But enough shoulda, woulda, couldas---Kids are just one issue.
I can usually remove emotion or hold off long enough to rationally think my way out of problems or situations, but with my husbands illness---I simply can't. Whenever I have to tell someone about the illness I begin to cry. I may cry at movies, but I am not a crier. Not typically. It bothers me that I don't have the control over my emotions that I used to.
I think it's the powerlessness of it all. Your lives are at the mercy of this disease. I am trying to cope well, but there are so many losses over time. Harry won't be able to walk or speak and will have to be fed by tube. He will become irritable and potentially verbally and physically abusive--though there are meds available to mellow him out. He will become confused and his mental functioning will be damaged.
I think I have a grip on my sadness until there is a development (more information about his status, further deterioration of his condition, what other families have gone through, etc.) and then my depression flares up something fierce.
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