I have been thinking for a couple of days as to whether or not I should write this post. What I am about to say will create some consternation for some, upset others, and find complete understanding and agreement with some of you. In the end, this is my story, and this part of it is an important turning point.
I contacted the Alberta Health Services Medical Assistance In Dying program on Thursday. I let them know who I was, where I was, and that I would like to talk to them. Before I go any further, there is a process here, and you can't simply call them up and say "I want to die." Here are the criterion for MAID, just to start the proces rolling.
241.2 (1) A person may receive medical assistance in dying only if they meet all of the following criteria:
a) they are eligible — or, but for any applicable minimum period of residence or waiting
period, would be eligible — for health services funded by a government in Canada;
b) they are at least 18 years of age and capable of making decisions with respect to their
health;
c) they have a grievous and irremediable medical condition;
d) they have made a voluntary request for medical assistance in dying that, in particular, was
not made as a result of external pressure; and
e) they give informed consent to receive medical assistance in dying after having been
informed of the means that are available to relieve their suffering, including palliative care.
(2) A person has a grievous and irremediable medical condition only if they meet all of the following
criteria:
a) they have a serious and incurable illness, disease or disability;
b) they are in an advanced state of irreversible decline in capability;
c) that illness, disease or disability or that state of decline causes them enduring physical or
psychological suffering that is intolerable to them and that cannot be relieved under
conditions that they consider acceptable; and
d) their natural death has become reasonably foreseeable, taking into account all of their
medical circumstances, without a prognosis necessarily having been made as to the specific
length of time that they have remaining.
In short, I most certainly qualify, even in my current state, let alone when the time comes. Even that doesn't mean I can just ask for the big pill. I have to go through two separate assessments, with two separate physicians. Then, even after all that, a third physician will talk me through the process to confirm that this is what I really want. It's not easy to die with medical help; a well planned suicide is actually easier. I'm just afraid of screwing it up.
Simple starting this process does not mean I want to finish it any time soon. The assessment will leave me in a place where I have up to a year to act on it. With that out of the way, it will be one less hurdle when the time comes. I want to make this easier for myself, not more difficult. I am in no hurry, but when that day dawns, I don't want to start a lengthy process right then. I want the process out of the way so I can get on with it.
There will be some of you who will tell me it is a sin to take my own life. I'm not. ALS took my life a long time ago. I've already outlived most pALS in my cohort. I do not want to live on machines, at least not the way I feel today. I don't know if that will change, but this process allows me to change my mind right up to the last minute.
There will be some who question my timing, as if any time was too soon, and certainly this time is too soon. All I can say is you do not live the life I life. You do not suffer as I suffer, or feel the pain I feel. This is a planning step, not an action step. I'm getting ready to die, just as most of you will do at some point in your life.
If you are one of those who feels that life is sacred, I would disagree. If life was so sacred, why does God allow so many people to die in such horrible ways? There is nothing sacred about disease, disaster, dementia, and so many other ways to die. Death is not dignified, let alone sacred. Furthermore, I am not ending my own life. ALS is doing that for me, has already done that for me. I am just doing what doctors do for a great many of their patients. When the time comes, I will simply expedite matters. Nothing, nothing at all, will stop my slow, creeping death. All I want, when the time comes, is to expedite what God has done to me already.
If you ask about God's plan for my life, I ask you this in return. What if God's plan for my life is to leave it in as dignified a manner as possible using MAID? Perhaps God wants me to show others that life is for the living, that dying is a process which need not be long, drawn-out, and ugly. Perhaps God wants me to pave the way. And in truth, if Heaven is such a wonderful place, why delay?
In the end, the key here is to remember that this is preparation. People who prepare for their own funeral are lauded. Mortuaries run TV commercials encouraging preparation. That's what I am doing, preparing. How it works out is in the future. That is yet to come.
There is no 'right' decision, there is only YOUR decision in such an infinitely complex, personal, hellish circumstance. I wish you the least amount of pain possible and that you are able to go out on your terms, as ALS has already taken so much.
ReplyDeleteI am looking at the same decision only in the US going into hospice and tell them I’m ready. My Mother did it when she was ready.
ReplyDeleteI wish I had that option here in Texas. I am planning to do voluntary stopping eating and drinking in a few months. I took a screenshot of your words because they will help me a lot to "explain" things to friends spout off about God's will and life's sacredness. as always, thank you so much for your blog and good luck with your process!
ReplyDeleteDear Carolyn, it's so hard to understand that so many of the states do not allow or support this need. I've read many people say that just knowing they have the ability to end their pai , makes daily living ever so much more bearable. I wish you all the best and sending a virtual hug as many miles separate us. Richard had posted about human touch and it truly resonated with me-wishing I had someone who wanted to hug me. Anyway, whatever illness you have, it's your decision and hopefully your friends will see that and support you.
DeleteYou have to do what is right for you. Nobody should have to suffer.
ReplyDeleteMy feelings is it's your life.. your the one living it, dealing with ALS each and every day... no vacation for you...It's easy to give advice and opinion. It's got to be a most difficult decision. If and when it ever happens you need to know, your story's sometimes funny, others depressing will be missed by me..:
ReplyDeleteI think you will know when the time is right. I am sure you will not want to be in this poor guy's state.
ReplyDeletehttp://www.nybooks.com/articles/2010/01/14/night/?pagination=false