[Note: This blog will sometimes contain more personally reflective articles. Feel free to not read. To fly over with your RSS reader. To avert thine digital eyes and wait for the other stuff. Otherwise, carry on.]
Today I will take a train.
This may seem a somewhat normal thing, trivial even. Certainly not a topic attached to significance for most of us. So perhaps I should probably start by way of an explanation…
Why does this post exist?
This post exists because I have a genetic condition. Over the course of my existence this condition, the results of a very tiny mutation of my DNA, has come to define me as much as I define myself. Some people move forward through rejection of their afflictions, “Look beyond this. This is not me,” but I have chosen to move forward by embracing it, “This is not the only me, but it is an important part of me.” This condition has shaped who I have become as much as anything else that my upbringing, my experiences and my curiosities have subjected me too.
This condition is called Muscular Dystophy. If you don’t know what Muscular Dystrophy is, it is essentially a genetic mutation which results in a lack of, or malformation of, a protein which is needed to maintain healthy muscle tissue.
For me this has been a slow process through which I have lost the ability to walk, and over a longer time am losing the ability to do more and more.
None of that is the point of this post. It is just the explanation for it’s existence. It is there simply to say that the train has never felt a straightforward choice for me. I came to terms with my condition a long time ago, battling my way past a heart full of fire and a head full of fear. I live a very happy existence 1 with a wonderful family around me.
“It feels sometimes an external thing, a purposeful thing that is being done to me rather than simply happening. I often find the universe pushes in directions I don’t always want to go. If I am to change this and choose my own path I must find a way to try and overcome this irationality.”
By way of explanation then, I am not a functional human being in the physical sense.
the Scene is Set, back to the point!
The point of this post is that I have been trying to grow recently. I have been making time within myself to accept that my limitations are a part of me and that they can be an asset rather than a deficit. I feared them before I think, I let myself get away with a somewhat weaker, perhaps slightly lazy, aspect which allowed others to help me, to carry me forward in the current, rather than to use it as a force to drive onward 2. This blog is one part of trying to grow, as is stepping out of my comfort zone and into a slightly bigger world…
“If I am to succeed, I must force myself to rethink how I operate in a world built for people that are not like me.”
So when I was recently asked to attend a meeting in Manchester 3, I found myself asking different questions 4 than I usually would. My usual routes here would be to look for family members to support me, to catch a lift in that direction and to catch one back, or even just to avoid altogether. Sometimes this makes sense and will continue to do so, but my new question, something i’d generally discount, was: “is this an opportunity to try the train again?”
A brief stop to remember.
Just so you can understand the mental alarms that rang in my head with this question, my previous experience with trains was way back in 1995ish. Travelling in a wheelchair in 1995 was, to put it mildly, ‘a total flippin nightmare 5.’ Things went wrong, carriages were awkward, tiny. Toilets were impossible. People forgot you were coming half the time. The only way it worked was to travel with somebody. The train just never made sense to me as an option.
Back to the floor
So a little later on, when it came up again as a discussion with my manager. I suggested the train. It seemed a good idea and I went with it. I would go on my own on a train and back again. I wasn’t sure what I expected the reaction would be, I imagined in my head concern perhaps some doubt in there, a little redirection maybe 6. However, on top form, he simply said ‘ok.’ 7.
Booking the tickets took me through a rather long and winding conversation, mainly me asking for every bit of information possible about boarding, wheelchair seating, dimensions of the toilet, whether the doors are automated 8.
Ok job done, train agreed, tickets booked, meeting confirmed. Easy.
Well no, not quite
A few days later I had another discussion over the phone. This had started to take a different path. It started sort of like this:
“Hi John, how are things”
“Ok, a bit nervous, anxious about taking the train you know. I keep thinking of all the things that can go wrong but that really that misses the point.”
And on it went. A little bit of anxiety had crept in, a little fear. The call continued with me identifying problems and issues, but ultimately remembering why I was doing this, finding grounding again again and moving on:
“I was thinking, thinking back to you know, what we discussed, earlier. In the team meeting, about the two scenarios. About, about operating on the worst case, when actually the reality case is probably not that bad. I keep thinking, well that really, what is the very worst thing that could happen? But then I think, back in reality, there really is no case, no, you know, situation that I wouldn’t be able to resolve on my own. I mean I have a phone, and there will be people everywhere.” 9
I suppose this is the real point of this story. If it is anything, It is this: a little voice lives in your head somewhere. It is a quiet one for some of us. It says, “go” when the louder voice says, “stop.” It says, “why not?” when the louder voice says, “oh no!”. That little voice is worth listening to once in a while and it is the voice I am trying to listen to more.
And don’t get me wrong. I don’t consider myself anything like knowledgeable on dealing with adversity, or fear, or caution. This is just what I learned and this blog exists to leak these things 10.
I wish I could, I wish I could, am I the only one who thinks I should?
Another obstacle overcome then. Another chance to ditch the idea skipped. Now I wish I could say that I spent last night sleeping soundly. I wish I could say that after deciding to live by the little voice and not the big one, the reality case and not the worst case, that I didn’t wake up this morning with a belly full of marbles. It would be a lie. A huge big lie.
It’s taken some serious attempt at willpower to drive me to this point. I’m surprised I made it this far to be completely honest. I am forcing myself over the edge, a little frightened of falling. Nobody said growing was going to be easy though.
Onward, upward, downward, skyward. Don’t look down please.
I still don’t know too. I still don’t know what will happen. Perhaps I will discover that my condition prevents this attempt at independence. Perhaps I will meet obstacles I hadn’t thought of. But I will challenge my assumption first and perhaps I might just find that the world is a little less intimidating than it sometimes seems.
“I think I have a solution. It is simple really. I will dare myself to step forward each time and challenge the world to stop me each time. This is how I will train myself to overcome.”
- Certainly much happier than some! ↩
- Practically, I accept that some of this must remain. There are just some things I cannot do. ↩
- Somewhat ironically, on asset based community development which considers assets before deficits ↩
- yet again! First an unconference, then a blog, then this. Whatever next? ↩
- It really was! ↩
- better solutions ↩
- Sometimes good management is not trying to manage at all ↩
- Panicked, clawing, me? Never… ↩
- I have a terrible habit of transcribing myself ↩
- Thanks to Phil Jewitt for the leaking terminology. It fits well! ↩
- And, for anyone who cares to know, it was absolutely fine! Like being 6 again! ↩
- and, for anyone who is all about the detail, the meeting was on ABCD and I met some really quite interesting people ↩