Friday, 9 May 2014


Most times I can manage the emotional distress that comes with having ALS. The anger that rages inside of me is not all that difficult to keep under control on any given day. It's deep in the background and I don't want it up front, messing up my daily life. It's there; it's just not in charge of me. Then there are times when I simply cannot bear it any longer, when the anguish leaps up and drives itself to the front, times when I simply cannot control the tears.

This happens to lots of ALS patients, where they go through times of grief and anger and fear and emotional pain. It shows up in massive, tearful displays. Some even have an expression for this; they call it the "ALS Ugly Cry". All that we can no longer do, the future that we measure in months instead of years or weeks instead of months, the limitations of our failing bodies; these become front of mind, top of mind. These become the forces that drive our emotions, at least for a bit.

It's hard to let this anguish out even though it is just beneath the surface, barely below the other emotions that I have in my daily life. The process of tears and crying just isn't something easy for me, other than that caused by PBA, something that is now chemically managed in my bizarre body and brain. The process of releasing this monster needs time and prompting, it needs help coming out. I need to cry; it's just not easy.

I have episodes like this periodically, perhaps every couple of months. I cry. I cry like you wouldn't believe. I rage in anger and tears. I wail in grief. Then it is gone; the beast is released and it runs from me, wild and free, escaping my emotional management. Unfortunately there is little real release in this. Unfortunately the carthartic effect is short. I have to get up the next day and start living again, living with ALS.

1 comment:

  1. Oh sweetheart you have every right to wail and howl. ALS is a beast that needs to be released as you say. Too bad there is no way to beat it to the ground and let it die. I cry with you believe me my dear. My heart breaks along with yours.. You are my son and have a piece of my heart . But i am hopeless and no use to you , that makes me so unhappy. Love you loads my dear.