Monday, 30 September 2013

What Will You Say Then

Once again I find myself dealing with people who have opinions on my condition without having to live through it, well meaning people who offer me advice and guidance on what to think and how to feel, as if I was unable to make those decisions for myself. This blog entry is a reminder; it is my body that is dying, not my brain. While this disease saps the energy from me, energy that is slow to recover, somewhere inside me the semi-rational, mostly intelligent person is still alive and still functioning.

Some say that I shouldn't blame "God" for my illness. Some say I am blaming "the world". Some say I should just recognize that this is a random event that means nothing and says nothing. What none of them get to feel is what it is like to sit in a room and have a doctor say that you have 36 months to live, that you have an illness with no treatment and no cure, that you will slowly waste away and die, that you will lose all of yourself along the way except for your mind. I, and other PALS, get this. We get that our body will die leaving an active and vibrant mind inside a dead husk, a shell unable to perform even the simplest task.

Some of you will feel this is directed at you, like I am pointing out something you did. It should be some comfort to you that a great many people will feel that way. You are not the only person engaged in this; it happens all the time. People feel they must say something, especially when I am going through difficulties. In truth there is nothing to say. In truth, the best thing anyone can do for a person with ALS is listen to them, and help them when they need it.

By the way, most ALS patients, not just me, are not good at asking for help. It is not because we are proud; it is because we forget our lost abilities. Our turn to limitation is, in most cases, swift enough that we can easily recall when we could grab that cup or make that dinner or walk that path. Most of us have only recently lost our ability, only recently come to limitation. Our psyche has not caught up.

If you want to be truly helpful to me, listen and seek to understand. If you want to be truly helpful to me, look at where I am and anticipate where I might be going, how I might be feeling, what I might be losing. Today I discovered that cutting my toe nails on my left foot is becoming almost impossible; it soon will be impossible. You say "Call home care; you knew this would happen." I say "Shit, I just did that last week. What the hell happened?" Then I keep trying, keep working to maintain what dignity I have remaining. One day I won't be able to wipe my own ass. What will you say then?


  1. Sorry Richard, on a couple of counts. One, I was one of those people, so, yes, sorry if I caused offence. But well ...
    You are making your illness a very public business, and so of course you invite comment and advice. You know full well that the typical male response to a shared problem is to offer advice and solutions. It's what you yourself do given someone else's problem. So ... sorry, but you're not going to change much of that. But we can learn to change the tone and nature of proffered advice.

    It's a constant shock to us too as you lose each of your abilities, especially for those of us who have known you for a long time. We are learning, always playing catch up, what you're dealing with, and how to communicate with you.

    I know you are well aware that some of us have had traumas and tragedies to deal with before, so are not completely unable to sympathize with one or another facet of your experience. Some have even had to deal with ALS with friends or family members previously. Of course we're going to share what we hope may ease your pain and suffering in any way we can, however slight. Might not do much good, but it's the human way.

    As we've discussed before, keep helping us learn.

  2. I'll cry and it won't be much help. Please let me know when you need me sweetheart.<3