Monday, 30 June 2014

Saddling Up

People often comment on the way I approach my daily life with ALS. I hear words like inspirational, positive, upbeat and even courageous. I don't think I am any of these things. All I am doing is getting on with what life I have while I still have it. All I am doing is moving onwards, notwithstanding the barricades I face in doing so. This isn't a lot different from what everyone else does; I just have ALS to go with it.

I don't feel brave or strong most of the time. I am, by and large, faking it, making the most of what I have, feeling the fear and doing it anyways. I awake each morning fearful of the day, stiff and sore, tired and unwilling. It would be very easy for me to give up, to simply lie in bed and wait for someone to come and take care of me. I don't, simply because I cannot. It is not in my nature.

That great Hollywood icon of bravery and fearlessness, the actor John Wayne, once said "Courage is being scared to death... and saddling up anyway." This is what I do in the mornings, slowly and grudgingly. I saddle up, heading  out into the day, swaggering a bit, pretending to be John Wayne. In reality I am more like Peewee Herman, internally fearful of so many things.

This is not an easy gig; it takes a lot to keep going, to keep moving while parts of me stop working on an almost daily basis. It's hard to check in on my ALS groups online, groups where someone dies almost every day. It's tiring to do so much with weakening arms and dead legs, to eat more slowly and carefully, to watch where my hands are when picking something up, to continually push myself about in my wheelchair. Yet it is what I have, it is what I live with.

My son once said to me I should focus on what I have, not on what I have lost, that I should leave the past behind me; he was trying to tell me to focus on positive things. My internal response was to say, as I do when others say things like this to me, that it's an easy thing to say when you have lost nothing and have much. I have ALS; I am not going to focus on that. I am afraid; I am not going to focus on that. I look at it like an onion. My outer layers show the positive, outgoing person that is the basis of much of what is me. As you go deeper, there are other layers, more complex layers. Those lower layers don't come out often, usually only showing up when I am with people I trust.

Fear is one of them; I don't show my fear all that much. It does little good. Instead, I saddle up anyways. I do not lack for fear; I just do it anyways, I just keep going. It's just hard.

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