Thursday, 23 July 2015

Hope Or Hopelessness Matters Little

It's difficult to write today; well, not difficult to write, just painful, sort of. My neck and shoulders are stiff today. My upper right arm hurts, as does the muscle in my neck on the right side. It is getting increasingly difficult to hold up my body when I first sit up in the morning. This morning Katherine tried to help me sit up and I had to ask her to stop because of the pain.

This is not a big pain. On a scale of 1 to 10, it might merit a 2. It's more of a stiffness, a weakness in these muscle areas. That's what ALS does. There is no big presentation of change; you just feel weaker and weaker until one day you realize that something you once could do is now beyond you. The final step in the process is when you can do nothing at all, then you die.

It's not so much a complaint as it is a recognition of my reality. For instance, there will come a time when I cannot sit up at all without support. That will mean changing my wheelchair for one with supportive sides. Perhaps by that time I will have given up on the manual chair and gone completely to the power wheelchair. There will come a time when I need that commode chair which is currently stored in the shower. My upper body muscles will have declined sufficiently that I will no longer be able to sit on the toilet without support.

One of the most terrifying things about this disease is the foreknowledge of what is coming, the ability to at least estimate what will most likely happen and roughly when. The march is not a lockstep one, where each loss triggers the next. There is just enough randomness to give you all kinds of false hope. That's when ALS strikes anew, shattering your dream that something might be different, that there might be a chance.

With ALS, hope is just as bad as hopelessness. Hope is dashed on a consistent basis. Hopelessness is a dark pit with no release. I've given up on hope, yet I refuse to fall into hopelessness. The best I can do is live with acceptance, find as much as I can in each day, and when the times comes, depart this mortal coil with as much dignity as I can muster. I just hope I don't die sitting in the commode chair trying to take a shit; that would be about as undignified as I can get. That would be hopelessness embodied.

1 comment:

  1. It is so awful Rick. I can hardly believe the state you are in. My mind goes to when you were such a healthy little boy and now this. I cry for you and know you too cry. It is so unfair but what is fairness anyway. I love you so much it makes my heart ache for you.