Tuesday, 25 August 2015

Blog Entry 1,000

Blog entry 1,000; that's what this entry is. On November 22, 2012, I was diagnosed with ALS. On that Friday, I went away for the weekend with a group of my closest friends, along with my brother Peter, and share with them what had happened, what my diagnosis meant. We call it "the weekend of crying". The following Tuesday I flew to Vancouver to share the news with my Mom and Ray, and with my children.

Then, on Wednesday, November 28, 2012, I started this blog in the morning, before returning to work. Since then I have written about the terror and pain of ALS, the damage of this disease to my life and my body. I've written about my voyage of discovery, my travels of adventure, the sorrow and joy which are a part of everybody's life. I've shared many of the most intimate details of my life, of how ALS was changing me and my body. I've also shared my thoughts, philosophical and physical, as I live with ALS.

There were a great many days when I wondered if I would make it this far. These days I wonder how much farther I can go. I think of Anne Bolyne, Anne of a Thousand Days, the ill-fated second with of Henry VIII of England. I'm certainly going to last longer with ALS than she did as Queen. I doubt that I will make blog entry 2,000, but who knows. Wonderful things can happen; look at me and Katherine. My true hope is that I make it many more than 1,000 days with her.

Since my diagnosis, I've come to learn an awful lot about myself. This kind of situation makes for even more introspection than usual. Writing about it each day makes it more palpable; when you write, you cannot ignore. What's interesting to me is what others find interesting in my writing. The top entry in my blog was my post on running out of money, followed by a guest post from Sarah Coglianese. Serious entries, the tough parts, make up the rest of the top 10, including another guest post by my friend Chris Gordon.

As you might expect, the US and Canada are the source of most readers, yet there are people following this blog from the Ukraine, Russia, France, the UK, Sweden, Turkey, and even Australia. People read to see how I am doing, to learn more about ALS, to validate their own journey with this killer disease. Some read my poetry, prose and stories. Everyone has their own reason for visiting, for being a part of my life with ALS.

I will keep writing. There are days when I wonder if I should, when having written for 1,000 days seems enough, when I no longer feel relevant. There are even days when I wish I didn't have to write, yet it has become a discipline, almost an addiction. It means I write for the same reason I did when all of this started; I write because I must. And tomorrow will be blog entry 1,001.


  1. I'm thrilled to bits to see blog entry 1000. I'm seriously hoping to see blog entry 2000 ... typed!

  2. Keep writing! We are all here for you :) I also wish to see blog entry # 2000! your follower from Kuwait!