Wednesday, 27 November 2013

My Left Arm

Everyone with ALS wants to be the one who beats it, the one who recovers from the muscle loss and destruction of this illness. Everyone wants to live without the wheelchairs, hoyer lifts, bi-paps, trachs and all the other accouterments. Everyone of us wants out of this place, off of this path, away from this progression. I am no different; I live in the foolish hope that something good will happen someday.

It did not happen today.

Over the last few weeks I have been noticing a tiredness in my upper left arm, rather like the tiredness I felt in my legs during the spring of 2011. I've noticed an ache in the muscle, a sort of low grade sense of pull within it. That ache has translated into me doing things just a bit differently, taking a rest when doing heaving lifting, favouring my right hand, using my power chair more willingly. That ache was something I had seen before.

Today I went to the ALS Clinic, something I do every couple of months or so; my last clinic resulted in the warfarin for the blood clot in my left thigh. Over the summer, however, there had been almost no change in my condition. The progression seemed to have slowed and perhaps even stopped. The doctors warned me that this could change just as quickly to progression as it did to pause. They warned me that this dark beast could, and would, rise up again to steal more from me, that it would come and eventually take another part of my life.

I did not want to believe them. I wanted to be that one person, that person for whom the rules of ALS changed. I wanted to be the person who got stuck at lower paralysis, living a vibrant and active life with the upper half of my body, at least for a while. I wanted to be the patient that others talked about, that guy who went on for years and years, without any further progression.

It did not happen today. At the ALS Clinic today we identified that ache in my left bicep as the subtle onset of muscle loss, the beginnings of the beginning, that infinitesimally small initial step down the path leading to a destination I know all too well. Today ALS decided that my left arm was up for grabs, only it is taking from me the ability to grab it. Today I found out for certain that I will not be that one, the one who beats the odds.

How long will it take? I don't know. It took almost 2 years for me to lose my legs completely, but my arms may be different. I don't know. All I know for sure is that my left arm is weaker today than it was yesterday.


  1. The other thing you know,Richard,is that you have many family and friends pulling for you and praying for you. Sorry to hear your bad news today.May you find some comfort that the people that love you will walk (sorry, no pun intended)along side you however long this road my be,and still be there at the end.
    With my journey of grief, I realize that there are no right words that "fix it" no special poem or formula that takes it away.Honestly, I dont even feel any comfort from God. The only comfort I get is just when someone says ,"I care and I hurt with you".

  2. Oh my darling son I too had hoped you would be that special person who beat it. I know you have told me not to hope but I cannot stop myself. My love for you is never ending and I want the best for you at all times. What a sad day for us and the rest of the family as well as all your dear friends. love you lots Mom

  3. You never know with ALS for sure. May your progression be slow.