I was working across the country for awhile when I started receiving emails from my sister (in her earlier years of having Lou Gehrig's) hinting for me to come home to help her (and dad with the yard, house etc). A few months later I pulled into our driveway and thought to myself, "If she has had this disease for five years, then am I going to live here for two years before heading back out? (Since many ALS victims last only about 7 years)".So the only place to stay was in the basement in a 12 x 12 room, no bathroom but a washer and dryer room and my dad's office taking up the majority of the space. I thought, "Well this will do for a few years somehow". How wrong could I have been?
Now, here I sit 22 years later and still sleep in the same room in the basement and wondering wtf do I do now?
So I am now going to pursue finding a publisher and see if I can bring my story out to the world. I thought this venue might help me in some financial way but it has been a bust. However I am at fault as I suck at marketing and promotion but my intent was to make sure I sat down at night to recount my experience as I knew it would be very unordinary and wanted to document the experience in case I "lost it" as I thought I might "break" at some point. What I did not share here was the early years of writing about coming home, very disenchanted, drinking heavily to deal with a horrid situation that just droned on (sorry sis) and left me broke, without friends, working full time in a grocery store and then reduced to part-time to keep up with the demands of, not only my sister's ALS, but the later aging demands of my parents. The early years of living amongst ALS, in my drunken state, are quite sad but very funny (in hindsight) but those pages are in the hundreds and it will take awhile to get them edited for an audience to read.
The "load" has worn me down and I am still after the crook that screwed us with a desire to punish him in some way. I somehow have remained alcohol-free for almost ten years despite me keeping a bottle of red wine in my little fridge as I wanted to share it with my uncle on a special occasion down the road when I am not so heavily judged by my sister (she hates my alcohol use).
Now, things have changed but I am not going to reveal anything here anymore.
As a therapeutic "tool", I was compelled to write about my experience as I was in a family environment and not the sole breadwinner. Things have changed and now I have to "find my way" for my financial future. Working for low wages all these years affected my future Social Security payments to be about half of what I could receive had I worked for the company I gave up to come home. Now, at age 55, I expect I will have to "slop through" more meaningless jobs until I, hopefully, die with a massive heart attack as I NEVER want to be a burden to ANYONE - EVER. I have lived for over twenty years in an environment of humongous 24/7 suffering and have had enough of human angst and I will not be a person to be pitied for or a drain on resources. As with most situations, no matter how horrid, it is possible to have joy, laughter and rewards of many kinds amongst the misery, but suffering makes all those things short-lived as the human emotional mechanism is so powerful, as my father used to say to me when I was in a temper-tantrum, "get hold of your emotions". Well, I have learned to "get hold of them" to some extent, but I am afraid I am "damaged goods" for the rest of my life. It is difficult to grow and nurture back a positive attitude when every single day, for years, the attitude was adjusted downward and what employer would love to have such a jaded employee? To my credit however, I managed to work in a very customer service business(s) for over fifteen years and rarely got a complaint and always rose to "top pay".
That's all I have to say for now but thanks to those who used to leave nice comments and if anybody has a way to help me bring this story to market, I would be most grateful. Email is: firstname.lastname@example.org
What a ride but the ride is not over by any means. There really are only two ways this story can end for me: a beautiful tribute or an ugly disaster. At least Life offers "choice".