Dear Cora & Louise,
There has been a huge lapse in time, since I last wrote to you. Sorry.
I recently wrote a piece in my blog about the reality of life with ALS. I tried to be forthright about my experience. The piece evoked a fairly large response from people online and in person...mainly sympathetic responses. I mentioned you both on one occasion. I said that you were the reason I got up everyday.
That's not an exaggeration.
At some point, you may struggle to reconcile that statement with the fact I've signed an order saying I no longer want doctors to resuscitate me in the event of an emergency...that I want to be left to die.
I think you may have a hard time with that, because I know I have. In fact, it's fair to say that it's unequivocally the most difficult decision I have ever made.
I tried to make the decision, at first, based solely on what was best for me. But I found it impossible to keep you out of my mind...milestones in your life that I'm going to miss; grappling with the idea that I won't be there in moments when I'll feel an innate, primordial need to protect you (which is all the time); the task your mum faces in raising you by herself...dealing with the good, the bad, and everything in between...
Then I realized that - such is the nature of ALS - there's nothing I can do about any of that. I'm not sure I'll ever be able to process that. I suppose that's what really makes this so unfair; being helpless.
I've thought back throughout my time with ALS about the attitude I've tried to take while confronting my illness. I've tried fighting ALS, even though its a losing battle. I've tried to refrain from getting angry, and I've been fairly successful. My thought is that if I only have x-days to live then being angry is a waste of time. I've tried to remain upbeat, but not always succeeded.
After almost three years, ALS has certainly taken its toll on me.
I've decided that I want to finish my fight without invasive medical intervention. At this point, that basically means that when my muscles are no longer able to make my lungs muster a decent breath, I don't want a hole cut in my windpipe and a ventilator connected: I don't want a machine keeping me alive.
No matter the amount of love I have for both of you, I cannot imagine a life connected to a ventilator as a life where I can begin each day fundamentally happy.
To be perfectly honest, when my time comes, I think I'll be ready for a rest.
As I write this, my mind frequently drifts off, imagining how you will feel about this decision when you're older.
Do me a favor: don't ever think this decision reflects negatively on how much I love you. You bring light, joy and love to every day. Every day. Try as I might to fight this disease, I wouldn't have the strength to fight it without the two of you.
I love you,