I have transitioned. It was not easy. I now know why I wanted to stop writing. It was because I felt compelled to write about nice things, funny things, positive things. It was a lie and I don't want to lie to make anyone else feel happy or good. I did that for a long time. That time is over. So, while you may find humour and life in this blog, I am in the later stage of ALS. My medical chart reads "Advanced ALS". I am still living with ALS. It has become a dark, difficult life.
I am no longer independent, not in the least. I can no longer dress myself. I can no longer pick up things off the floor. I can no longer make a decent meal, clean up after myself. I am incontinent both urinary and bowel. Fortunately I am still fairly regular, yet on a consistent basis I shit myself and piss myself. Catheters fail. I hang just a moment too long in the sling. My body betrays me, as it has been doing for years now.
It is the end of day, coming into night. The sun has set creating darkness out of what was a grey sky, the light of day much like the light of my spirit, slowly moving from grey to blackness. I am at home now, after heading over to the mall, where I was compelled to ask complete strangers to reach things for me too high on shelves or too tightly attached to fasteneners. My arms hurt from this small excursion
This is the most difficult time of day for me, where I am home alone with nothing to do but contemplate how ALS has destroyed so much of my life. It has destroyed my body, my intellect, my judgement, my spirit. It has crushed what I was, destroyed what I might have been, obliterated what the future could have been for me. This is the hour when these thoughts rise most, when they overtake me, driving me further from the grey to the black.
These feelings, these thoughts, are not abnormal. They may be a function of depression, a persistent side effect of ALS. There may be medications to offset some of them. However they are a constant part of lonely evenings wondering how bad it will have to get before I decide to end it all. As I write, there will be more of this, more honest expression of how shitty it is to live with "Advanced ALS", more of what seems like depression.
Do not try to cheer me up. Do not tell me to increase my anti-depressants. Do not tell me to look on the bright side. Do not tell me there are others worse off than me. Do not take me for a fool; I already know these things. And I really know what it is like to live with ALS. You don't get to say anything unless you know this too.
God loves you in your darkest hour. He understands and will one day give you a new body. A perfect one and a life without pain or sadness. I don't walk in your shoes, but I pray for God to work in your heart so you can find peace in your final days. Delete if you like, but I have to tell you that your creator loves you dearly.
ReplyDeleteRichard, that was one the most compelling notes I read from your hand. You're absolutely right, writing is all about straightforward, diamond-hard truth.
ReplyDeleteI would never ask you to look at the bright side, knowing what dire ailment you're up against and how crippling this malady gets regarding all aspects of life.
The only sensible thing that comes to my mind after your latest blog read is a quote from a quite extraordinary french ALS patient. He is a guy whose body is 100% paralysed for more years than you could count, yet he is still up and kicking and in charge of a major ALS assocciation.
This what he said about MND, which I find quite inspiring: "ALS will destroy your motoneurons, all right; but there's one swith it can't touch and turn off, it's the link, the circuit binding your brain to your heart. Oh, it will try hard to make your life such a misery that you will eventually drop the will to keep that link whole and ask for it to be turned off. ALS can't kill you, but it will endeavour to break you so you'll do that last thing it can't do by itself."
Looking forward to reading you soon, my friend.
Samuel, What is the name of the French man with ALS, or do you know his name Richard? Thx you Richard as always for your blogging.
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