Iíve been meaning to start this thread for a while now, Iíve even started the process a few times and then quit. Itís a hard thread to start, but I have the feeling that once I get going itíll get easier. Basically I want this thread to accomplish two main things:
1. Update you guys on whatís going on with me
2. Have a place to post my random thoughts, much like GHís Crashbox
I left a good many of you hanging last year when I posted about some tests I was going through. The results came back, and they were not what I wanted to hear. In April of 2013 I was diagnosed with ALS, which was confirmed through a second opinion in July of the same year. Thankfully the ice bucket challenges youíve heard and seen so much about have raised awareness of ALS, to the point to where I donít have to explain it quite as much as I used to.
For those of you not familiar with it, ALS is a degenerative neuromuscular disease that attacks both the upper and lower motor neurons. It slowly (and sometimes not so slowly) atrophies muscles until they become paralyzed. Although it only seems to affect voluntary muscle systems, your respiratory system is among those. It is fatal, there is no cure, and there is no effective treatment. Average life expectancy for ALS patients is about 2-5 years from initial diagnosis.
I am, as they say, on the clock.
The question that most people ask me is how Iím doing; so let me give you a snapshot of where Iím at. For the most part Iím good. If I donít want someone to know I have ALS, they donít know. I can fake being normal, but thatís getting harder and harder to do. The area currently that is most affected by it is my right hand and arm. I can no longer type with both hands. Right now I type with the left but peck with the right. Itís much slower than I used to be able to type, so typing stream-of-consciousness type stuff is harder and harder to do. I can still walk fine, even run really, but long distances are tough and I tire easily now. Perhaps the worst is that itís affecting my breathing. ALS is very individual and it progresses differently in everyone, but having if affect my breathing at this early stage is bad. It means Iíll have to make some very difficult decisions soon in terms of prolonging my life or not. For the most part, however, my life hasnít changed significantly, which has surprised a few of my doctors.
Mentally Iím really, really good. I have an amazing family, a deep and abiding faith, and an incredible network of friends. I am extremely blessed.
Iím also deeply moved by the concern and care that so many of you have shown me in posts and through PMs. CockyTalk is an amazing community and I love almost all of you. Almost all.
Iím still going to try to do my wrap ups this year, and Iíll continue to be a smart-ass in everyone elseís threads. Longer posts are hard for me now, which is why youíve probably just seen me drop bombs and leave lately.
You might be a little curious about the title of the thread. It combines one of my favorite poems, Robert Frostís Stopping by Woods on a Snowy Evening
, with the title from a Don Miller book, A Million Miles in a Thousand Years
Spareparts recommended the book to me once he found out. I got it, and itís helped immensely. Iím telling a fantastic story now Spare, thank you.
I still work, and I will until I cannot. Iím writing a childrenís book to help children deal with grief, and Iím making movies for my girls, one for each birthday until they're 18. Giving them advice and love on the birthdays I wonít be there to see.
At first I tried to wrap my head around the fact that I was dying, but eventually I realized thatís the wrong way to look at it.
Iím not dying. Not today anyway, and probably not tomorrow.
Iím living, and hereís who Iím living for.
Whose woods these are I think I know.
His house is in the village though;
He will not see me stopping here
To watch his woods fill up with snow.
My little horse must think it queer
To stop without a farmhouse near
Between the woods and frozen lake
The darkest evening of the year.
He gives his harness bells a shake
To ask if there is some mistake.
The only other soundís the sweep
Of easy wind and downy flake.
The woods are lovely, dark and deep,
But I have promises to keep,
And miles to go before I sleep,
And miles to go before I sleep.