Wednesday, 28 June 2017

I Hate The Frustration

There are some things about travel and exploration which go beyond a normal level of wheelchair frustration. I mean, it's easy to get frustrated about buildings without wheelchair access or people who park in wheelchair spots. It's understandable that I might get upset about not being able to walk up to a museum or stand on the spot where so-and-so stood. The losses of ALS and life with the wheelchair are inherently frustrating.

Then there are the things which really upset me, things about which I can do absolutely nothing, nor ask anyone else to do anything to help me with them. These things, the naturally occurring impediments to life in a wheelchair, the things which are lost to me increasingly because of progressive weakness, these things, large and small, can be really upsetting, depressing.

Yesterday David and I went to The Giant's Causeway. I felt fortunate that there was a bus to take me down to the seaside stones. I felt fortunate that I was able to see, and get next to them. At the same time, I saw David climb the rock pile, realizing that I could not do the same, nor could any mechanical device allow me to experience that climb. It's just never going to happen.

Today we drove down the Coastal Causeway Route from Portrush to Belfast. Along the way we stopped at Carrick-a-rede, where a rope bridge is strung from the coast to a small island, a hundred feet up from the rocks below. There is no way I can get to that bridge, not ever in a wheelchair. Yes, massive changes could be made to make it possible, even a lift of some sort. But that would destroy the whole of the experience in so many ways. It's the walking, the climbing, experience the heights and sway of the rope bridge. It's something just not reasonably possible in a wheelchair.

I got the same feeling when David walked up Torr's Head, a bit further down the road. Yes, a lift system or some sort of funicular could make the top wheelchair accessible. But once again it would destroy the natural environment in such a way as to make the changes worse than the limitations. Once again I felt the frustration of my limitations, limitations brought on by ALS.

Each day I get weaker. Each day there is less and less I can do, notwithstanding wheelchair access which is, or should be, in so many places. These days I need someone to push me most places. These days I have to rest after even the slightest exertion. These days I cannot experience life as those around me do. And this gets pretty old after a while.

It's frustrating, especially when I remember what I once was able to do. I hate the losses. I hate the limitations. Even within the best of times and experiences, they are there, reminding me of what is happening to me, reminding me that my time and energy are limited, both today, and in the future.

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