Sunday, 22 November 2015

Happy Anniversary To Me

Today is November 22nd. This is my ALS anniversary. Three years ago today I sat in a cold hospital room where a neurologist confirmed that I had an illness with no known cause, no viable treatments, and no cure, a disease where the outcome was always a debilitating, frustrating death, a disease which would steal my muscles, my strength, and ultimately my life. I can still remember that one piece of advice he gave me after confirming my diagnosis; "If there is anything you want to do, do it sooner rather than later."

Today it is three years from that day, three years from when I was given that awful news. Three years. Three years in which my body has changed dramatically, continually for the worse. Three years in which my life has changed dramatically, some changes for the better, most for the worse. Three years in which I was supposed to decline and ultimately die.

My life with ALS didn't start a simple three years ago. My first symptoms were almost two full years before diagnosis. At first I attributed things to getting older. The clumsiness, the easy exhaustion, the weakness; these were happening because I was in my mid-fifties. Or perhaps it was my weight; I was a lot heavier than I should be. Then I thought it was a back injury. I made every excuse I could until I was forced to seek medical attention. That's when I go the word, and an prognosis of 36 months or less.

That I am still here, still typing, still getting around, still breathing, is a testament to the vagaries of this illness, to my unwillingness to stop living life, to the failure of statistics when it comes to individual application. The average ALS patient dies within 36 months of diagnosis. Clearly I am not average. I've seen many in my cohort pass away already, many others who are much worse off than me. I've seen PALS diagnosed after me who died well before me. I'm still here; they are not.

Three years is a short amount of time to live and a long amount of time to die. I have more time to live yet. For that I am grateful. My body continues to die as I live; for this I am somewhat less than grateful. I planned for 36 months. I budgeted for 36 months. Now that I am here I am in no hurry to leave. At the same time I find only limited pleasure in remaining. Living with ALS is a tough ride.

I'm now in that next step in the scale. 80% of people with ALS are dead within five years. This does not mean I have two more years to go. It means there is an 80% likelihood that I will be dead 24 months from now. Personally I suspect it will be sooner than that. I'll be happy to see my 61st birthday this coming July. That's my next big anniversary.


  1. Your writing is extraordinary. thank you for putting so much of your talent into your blog.
    As I do not comment a lot, But I do Follow you each and every day.

  2. Hang in there Richard. Best regards. Bob