Thursday, 24 January 2013



Sometimes I get really angry about the way my life has turned out; it's a mess.

I am 57 years old, in the midst of a nasty divorce, without a long term relationship and on the road to death. It's not a pretty picture. I did all the right things. I followed the rules. I was responsible, I paid my taxes, I worked hard, I raised my family. As a reward I get to die alone with this fucking disease.

I am angry at myself and my bad timing. Eleven months after having left my wife of 32 years I discovered I had ALS. It is undoubted that I was unhappy in my marriage. It had been an unhappy marriage for more than a decade. Oh sure, there were times of happiness and even moments of passion and excitement. These moments were brief and were ultimately outstripped by fighting and arguing. I had to leave.

My ex-wife has now demanded legal proof that I am dying from ALS, a report from the doctors and lawyers that will cost over $1,200. Not only am I dying from ALS but now I have to prove it in court with an expensive medico-legal report. My doctor tells me that the normal medical report would be free. I am angry about this too.

The problem is that having left, I expected to have a few years to go through the normal stuff at which point I would end up finding someone with whom I could build a new tomorrow, someone whom I could grow old with. I was supposed to have time to learn, grow and meet someone. Now this awful disease is stealing that future from me. So not only is my past a mess, my future is all fucked up too.

I am angry at the unfairness of this damned disease. I am angry at the loss of my life and future. I am angry that I don't get to have the happy ending; I don't even get a shot at the happy ending. I am angry that others get to go on with their future while my life freezes in place, locked in the stone of the implacable outcome of ALS.

I am angry at other people; they get to be happy and I don't. Others can make plans for their retirement and I won't get one. Others can imagine the lives of their children and grandchildren; that imagination has been destroyed for me. Others can imagine the porch and the rocking chair; all I get to imagine is the time when I can no longer walk, talk or breath. My future is measured in months, my days in minutes and my minutes are short.

This anger is so deep that it is almost unimaginable. There is no place for it to go. There is no balm for this anger. It springs out at the least provocation. Even Job had the hope of a better tomorrow. My tomorrow, and each one that follows it, will not be better. Each tomorrow will be slightly, incrementally and unerringly worse. Each tomorrow will have a little less in it, until there are no more tomorrows.

I am angry. I have a right to be angry. I've been robbed of hope, of dreams, of possibilities. I've been robbed of my tomorrows. My day is short and my sunset is dark, pointless, meaningless. It is the worst emotional pain you can imagine and yet I am compelled to bear it. I am expected to put aside that anger and to show grace and goodness.

Who the hell made up these stupid fucking rules?


  1. My darling, you have every right to be angry, your life has been stolen from you. I am angry for you and the pain you are in. I wish I could help you but I am helpless in the face of this disease. Others have no right to tell you how to be, ignore them. All I can say is you have been a bright light for me and Ray and a wonderful son to me. I love you forever and we'll meet again in another place. Wait for me. Mom

  2. Hi. How is everything going for you now?