Those who read yesterdays post probably noticed the spark that appeared just at the end and made an intelligent guess as to what I would be writing about today. I haven’t for a long time now actually thought that much about how I might actually manage on my own in the outside world. Clearly physically this isn’t possible but as I ended yesterday, I released that the physical problems were actually only half of it. To anyone reading, I expect that what I write gives the impression that I am still very much switched on and OK with the world, this is far from the truth. It’s hard to explain but although my mind may come up with the words and flow with ease when writing, if I was instead speaking them, well the result would be something completely different. The moment I introduce that next step of vocalizing, well it all turns in to a confused mess, not only do I stutter but in the middle of one word I will forget the next and everything stops. It isn’t unknown for me to find myself trying to describe what I want to say, as I can’t find the word. Just as bad I will talk and miss words out, stutter on the next and then unintentionally shut up, as I can say no more, there is nothing there at all and often I can’t even remember what I was talking about.
When this is between me and those who know me, well it really isn’t that important, it is just the way it is, now imagine as I am doing just what that would be like if I was out of the house and having to navigate my way round something as simple as going to town to buy some clothes. We are of course imagining that I have found the energy to actually get dressed and presentable for the outside world, and that I am now downstairs at my front door, not with my manual wheelchair but an electric one as I don’t have the strength to move my chair any longer. To me this is now a huge imagine, I just see it as an impossible mountain that I have no accepted is long gone. So back to being outside the house, from here it should be simple, well it should be, but I know the first problem will start in the taxi when I try to tell them where I want to go. My mind is actually failing me right now with the name of the shop on the street I can picture in my mind, well if it’s still there, but that is another problem. So when you don’t know where your going and you want a taxi to take your there, what do you do? OK I could have it all written down before I set out, but do you leave home with your destination on one piece of paper and of course clutching another to get you home again. I know without a second thought that I would be terrified by the crowd of the city, I was never really that great with them the last time I was there, but now I know I would find it a thousand times worse. Negotiating people who at their worst are plain rude, but I guess they are rude to everyone and then there are those who over help. These people often with have the best intentions, they talk for you, when you can’t find the words, some will then start listing everything that that shop sells which isn’t exactly helpful, especially when you actually wanted directions to another shop. That reminds me, directions, I have actually on two occasions come across those who grab the handles of the wheelchair and push you, without asking just because they decided you need help. All these people have the best intentions in the world, but can you imagine complete strangers taking over like that and leaving you totally out of control, simply because you want to go somewhere and buy something? Those that ignore you in general would be the same people who would ignore the able bodied as well, but when someone is stuck, caught by the curbstone leaving them chair and all in the road, to find even when asked that they still walk past, well I have no understanding of those people at all.
So OK I have written this with memories from my past without much of an increase to the problems I had then, in truth I know that even if I did make it past the first hurdle of getting to the city, I would still never manage the rest of it any longer. I have sort of skimmed through the surface problems but the biggest thing aren’t about others, it is my emotional management of every situation, the more horrors you run into the more you get wound up and it becomes distressing, there is nothing worse than bursting into tears for no reason anyone else understands, as actually you don’t really understand yourself. The damage I have to my brain means I don’t deal with many things logically, somehow they have moved into the emotional sphere, not being understood, or not being able to do what I want to do, have all become emotional issues, worse still the fear of it happening, well that can be the trigger alone.
When ever I went into town I always treated myself to one of two things, OK occasionally both. I used to love to get myself some sort of wonderful exotic cake and large mug of fresh black coffee. I would sit watching the world pass in a cafe where I could sit not outside, as I preferred the malls, but with in feet of those passing by. Just eating the cake or even drinking the coffee could very easily lead to me choking or worse really gagging, it is actually something I actually manage these days without anything in my mouth other than saliva, it just happens. Exactly the same problems which could occur on what my second treat was, to go to the pub for a pint of larger. Gagging and spluttering on nothing is again OK at home but outside some people panic thinking I again need help, when all I need is to be allowed to sort it myself. The final issue that I know could happen from the second I leave the house to the moment I get home and that is finding a toilet. There were very few outside of the shopping centers, but when you have incontinence they are never where you need them to be.
I have had many people say to me that surly if you lived in a ground floor flat or a bungalow, you would then be able to get out and about. Well the truth is above, and it’s a truth that makes getting out not just an issue of stairs, it is an issue of every single tiny thing that should be easy. With no energy believe it or not just sitting doing nothing drains you, so electric chair or not, it is a drain just being awake. I know there is no way that I could dress and get myself out, even with help I couldn’t manage it and if Adam was with me, well there would be little change the only place I would want to go, would be back home. There is nothing worse than being “taken out”, pushed in your chair with people ignoring you and only talking to the person with you. To the able bodied this is a life that I know is hard to understand, I didn’t until I found myself here. But I promise you loosing such a tiny thing as going out, is nothing, it’s nothing at all on the scale of just living. Yesterdays spark brought this post into reality, but it isn’t here as a “oh my life is terrible”, it is here as a “this is why, these are the reasons, that the outside world is gone”.