Friday, 13 September 2013


So someone said it again to me yesterday, someone with legs that work, with arms that are strong, with all the breath and lungs they could want, someone without ALS. They said "you should focus on the things you can still do, not what you have lost". This irritates the hell out of me. It is so easy to be pompously upbeat when you face only the normal challenges of life.

Here I sit, trapped in my chair, my swollen feet near iridescent purple, blotched and mottled. Here I sit, trapped in my chair, unable to get my own breakfast because the cereal has been put in the top cupboard where it has always been, that selfsame cupboard now too high for me to reach without standing, and standing being a challenge to great for this morning. Here I sit, looking at the mess and dreck in my kitchen, watching my housekeeper do the simple tasks that I could do a mere matter of weeks in the past.

Focus on what I can do? Those things that healthy people take for granted frustrate me. Those things that healthy people just do without a moment of thought are beyond me. Those are all things lost to me now, beyond what I can do. It is not enough that they are things I cannot do. In the ultimate of cruelties they are things that I once did easily, so recently functioning and fulfilling as still to be contained within my muscle memory, except the muscles cannot move to what is remembered, to what once was.

If someone says to me one more time "I was sad about having no shoes until I saw a man with no feet", I may just explode in anger and frustration. To have no feet is tragic; to have feet that sit at the ends of your dead legs and defy movement is not only tragic but maddening. To see the apple on the tree, just inches out of reach, and know that you will never again reach it, this is loss that invades every thinking moment.

I don't feel better than other PALS in worse condition. That their loss today is greater than mine in no way diminishes my anger and distress. It is betrayal to their lives, their dignity and strength, for me to feel better because they feel worse; their struggles highlight mine. Their advance is a harbinger, a notification of my future.

 Don't walk a mile in my shoes; I cannot. Sit for an hour, or a week, or a month in my chair. Then talk to me about what I should focus on. Don't lecture me on focus. It's all too plain to me.


  1. For your defence and the help of others who will follow with disease and disability, teach us how we should deal with it. You’ve told us to ask you how you’re feeling, not how you’re doing. But, and especially, when you’re down, and angry, and clearly upset, how do you want folks to respond?You’re blogging in public, so you must expect a reaction (and you being you, of course you do!) :)

  2. Of course I expect a reaction! I am, after all, still me regardless of this disease. :)

    You're comment is actually more direct and correct than I could have asked for. You're right, rather than bitch about what people do wrong, it would be more useful to say what they can do right. Unfortunately some days that is a moving target, along with my emotional state. However I am an emotional radio station, always broadcasting, so it's usually pretty easy to figure out where I am at.

    At a minimum, I would ask that people not resort to platitudes. The misery of another does not lighten mine. Don't tell me how I should be feeling or how I should respond; mine is mine. I ask that pity be avoided. Sympathy is good but not too much. Hugs are always welcome. Most of all, I just want to be treated as normally as possible with a bit of allowance for my limitations and condition, plus helping me with things on the top shelf of life.

  3. Plenty of hugs from mom my dear. Over and over.

  4. Hi Richard - it's Cary again...from Moncton, NB. I commented last night although in terms of your blog, it was months ago. I am officially hooked and just can't stop reading.

    I understand your comments and frustration here. My son (aged 6) has Cerebral Palsy and people say all sorts of odd things that drive me to insanity. Things exactly like you say above like "but you should focus on all that he CAN do"...and yes, most days that IS what I do...and other days...when he can't join other kids in his age, it's hard to stay positive.

    And I like your last comment...I also ask that people not resort to me, I think the comment that I hate the most is "God gives special children to special parents". What utter nonsense.

    1. Cary, you've covered a lot of ground in a short time. I saw the CP reference in your blog. It must be a real challenge for you some days. And you are right; those kinds of platitudes are thorough in their annoyingness, and in their laziness. People use platitudes so they don't have to actually think about what to say.