Wide awake since 4:30, finally asked Meg Jankowski Reyes to get me out of bed at 6. Been a rough week, with nausea and upset stomach. Meds make me useless, hate that.
No breaks for terminal patients, still have to deal with random illnesses.
This month marks 6 years of living with ALS, 6 years. In retrospect, pretty sure it’s more like 7 or 8, took two years to get diagnosed. I’ve already exceeded the 2-5 yrs prognosis.
This brings me to a topic not often discussed in depth, survivors remorse. It simply can’t be avoided, especially when you meet and get close to so many amazing people. You don’t want it to be you, so you fight like hell; yet your heart breaks with every loss.
After 6 years, it can be deceptive to see me, a pathological optimist. I’m sure there are a few folks who wonder, “is he really sick?”, ” Is he still alive, but I thought ALS took you fast”.
My body is dying but my spirit is still kicking ass, that’s the only way I can put it. I still hate ALS and what it does. I hate that I must depend on others, for something as simple as getting out of bed. Yet I do depend on the grace and love of others to live. How can this not make my heart swell.
Yet I am on the same path as those we’ve lost. I mourn their loss but I honor their lives by embracing mine, in spite of ALS.
I hope my fellow pALS can do the same, if not…that’s ok, you are still loved.
I am reading and listening. So sorry. I hate ALS. Wish I could make this disease disappear for you and all.