The Future

Lisa put forward these four questions a blog post ago and I'll answer them now:

What elements made up your life before diagnosis?

Most of what made up my life before my diagnosis was doing the prep work for having a completely different life in 5 or 6 years. Going to work everyday, keeping on top of bills and money, getting Joe through school so he could get a good job that allowed me to go and get the education I've always wanted. I had friends that I could do stuff with when I could afford to do stuff. I was a part of the political party system. I worked for the candidate until I got too sick. I am on the local riding association executive. I obsessively watched and read everything I could about politics. I obsessively read and watched everything I could about fashion, but not trends. Much of my life was about what I could do with myself, for myself, by myself. I didn't have many friends who were interested in doing what I liked doing, and that included my husband. For an extrovert, I seem to have surrounded myself with introverts. My life was not as I wanted it to be, but I had the skills, knowledge and know-how to get there with time and support. With MS, I've got the time and the support, but the skills and know-how are gone.

What have you done as a livelihood?

For the past 9 years I have been in events/fundraising or an executive/personal assistant for the most part... with an 18 month sojourn into the legal field. It's a busy life with little emotional or monetary payoff, but it's what I know how to do.

Are you unable to do the same thing for a living at this very moment?

No. The key to being able to work in jobs like this is that you are capable of showing up everyday, with all your physical and mental capabilities, looking good and fresh and bright eyed, and being able to work anything from 8 hours to 12 hours without hesitation. That's not an everyday thing, but it happens more than you'd think. I still know how to do the job, I'm just not able to commit to a job like that because of the unknown future MS has given me.

And what had you pictured as your future?

I wanted a fabulous life all about me. When Joe and I decided to get married, it became all about us, and thus less personally fabulous because Joe doesn't like or enjoy many of the things I find fabulous. Since I have no real talents or interests, being fabulous is something that I've aspired to since the first time the "girls" dressed me up in their drag costumes and I passed as a boy in a dress at a gay bar. MS has stolen that from me, too.

MS has taught me that I am a really awful human being, and I'm not sure that I am at all interested in changing that. I'm extremely self-centered and selfish. I hate most people. I cannot tolerate people who are gullible, unquestioning or simple and people with no sense of irony or intellectual curiosity. I know that I am smarter than most people and really try to keep myself away from people who can't keep up or can't think abstractly. I hate children and old people I am not related to.

My social worker is sending me to the MS clinic psychiatrist, and I know that if I tell him the truth I'll be on anti-psychotics by the end of the session. She seems to think that I need to find "my soul" and re-prioritize my life.

I know where my soul is. It's in England. I sold my soul to Noel Taylor back in the summer of 2003 because I wasn't using it and I'm not sure that he's interested in giving it back. I don't believe in the soul. I don't believe that there's any part of me that's eternal, nor do I want there to be.

I have no priorities beyond making myself comfortable. In 80 or 90 years everyone who's ever known me will be dead so what I do now matters not, since I'm not curing polio or inventing the internet. I believe that the point of life is just pain management. You just work hard enough to make life as easy to deal with as possible. With MS my ability to manage my own pain is regularly defeated by my lack of money, stamina and cognitive abilities.

I'm not interested in embracing my life if there's no chance it won't end up fabulously. I have no talents and no interests beyond fulfilling my own need for comfort. Joe and I tried to talk about this last night and what it came down to was that he doesn't like me as a person very much and we're less compatible than he thought we were in the beginning. I am not interested in people and I'm less interesting than I think I am.

I'm supposed to find meaning from all this? I am supposed to find my "authentic self" or some such in all of this? I'm quite obviously failing as a human being and being physically disabled just compounds my worthlessness.

I've known for a long time that I'm just not a nice person. I guess I've just got what I deserve.