“Is something wrong
Of course there is
You’re still alive
Oh do I deserve to be?
And is that the question? Oh
And if so, if so
“Alive” Pearl Jam
For the past two years, I’ve had a death sentence over my head called Amyotrophic Lateral Sclerosis, or ALS/Lou Gehrigs Disease.
This little slice of heaven kills fast and horribly. Typically, two years after diagnosis, you should be almost completely paralyzed, unable to breath or eat on your own. You’re typically dead after three years. There’s no treatment, no cure. Then my ALS doctor, the wonderful Dr. Kasarskis at the University of Kentucky said in December 2015 something was wrong and good…it’s almost been 2 years and you’re still alive.
Six months of further tests later, today Dr. Kasarskis gives me a bit of news: the diagnosis was wrong. I’ve lost no strength in two years, and all my tests were unchanged. He believes that at the time of diagnosis, August 2014, my raging case of Rheumatoid disease was mimicking symptoms. As my RD went into remission, my symptoms improved.
Of course, I’m still very weak, and will need months of physical therapy to rebuild strength. I will always use a cane because of my feet turning inward because of the RD. I’ll still never be able to work a normal job, and still be considered disabled. But, I will be alive….
In my mind, I’ve been dead. Now, suddenly, I’m going to live to old age, fates willing. My son will have me until adulthood. My husband won’t have to find a replacement for me, unless he really wants to (haha). I feel like a trapped animal that’s had the boulder removed, and doesn’t quite know what to do next. I’m sure I’ll figure it out.