It's More Than You Think

To say that ALS has changed me would be both trite and seemingly self-evident. Clearly it has changed me. What most people don't see, or seemingly understand, is that it has changed me in ways that are not merely physical. It has changed me in ways besides putting me into a wheelchair, stealing my muscles, ladening me with constant exhaustion.  In fact it is those evident changes which drive some of the not-so-evident changes.

For starters, I am a lot more sensitive to a certain group of comments or humour. For example, I don't really worry much about death or dying jokes, even ones focused on ALS and how impacts me. Everybody is going to die; most of these jokes could be applied to any number of people, and ultimately to all of us. On the other hand, comments about my need to "micro-manage", particularly with respect to processes in my kitchen, hit me very hard, be they true or not.

The reality is that I have lost a great deal thanks to ALS. One of the most distressing areas of loss for me is my ability in the kitchen. Not only am I less able to craft meals as I once was, I am also near completely unable to create new dishes, or experiment with new tastes and textures in food. This is plain and simply because I am physically unable to do the tasks or withstand the spices or flavours. I just can't do it. My reality has changed. So has my emotional response to that reality; remember, my body has changed, my mind is playing constant catch-up. Any commentary in this area is deeply unfunny to me, as it mocks a loss which is mine, and mine alone.

I have to decide, as do those who are in my kitchen, if people are there to do their own thing, prepare food on their own, or if they are there as substitutes for my hands and arms. If you are there to do something on your own, it had best not reflect something I like to make. It had best be a creation new to my kitchen, or at least new to me, such that my wants and needs don't apply. On the other hand, if you are in my kitchen making something in my stead, it means you are working as my hands and arms, doing my work for me because I can't do it.

That means doing it the way I want it done, so I can at least claim credit for being the creator. At a minimum, it might mean a cooperation; at worst there is no doubt that I will "micro-manage". It means chopping things the way I want them chopped, spicing things the way I want them spiced, serving things the way I want them served. If you want to call that micro-management, so be it. You clearly don't understand what is happening. If you threaten me with "if you don't like the way I do it, do it yourself", then you are just being unnecessarily cruel. The only reason I ask for help is because I can't do it, because ALS has ripped away this ability, once a core part of my daily life.

In this regard, my strength of personal self has changed. I feel deeply vulnerable in my disability, distastefully at the mercy of those who have lost nothing like what I have lost. Some say I just have to get used to it, yet they have never been in this place, where each day is a get-used-to-it kind of thing. They have never had their ability near violently ripped away. If you mock me, if you "tease" me, if you scold me, then you really don't understand what it is like to be here, to feel this kind of helplessness, to be at the mercy of ALS and change.

If you want to be kind to me, truly kind; if you want be be a friend to me, a true friend; if you want to be helpful to me, truly helpful; start by thinking about what it must be like to have been forced to change so profoundly, both in body and mind. Think about losing your physical ability, yet all the while your mind is functioning fully, demanding that your body perform, anxiety riddled because you can't, hating it constantly.

Each day, each and every day, I have a moment; a moment where I say to myself "why the hell do I bother". Each day, each and every day, I have a moment; a moment where I just want it all to stop, where death seems reasonable right now. I beg of you, please don't be the one who brings that into my day. This is the greatest cut of all, the most powerful betrayal, failing to understand how dramatically my feelings have changed along with my body. ALS is destroying more than my muscles.