Despite the fact that Adam is on holiday this week, I am going to be on my own today, he is going to visit his Mum. I know that it sounds terrible, but this to me, is one of the good things about being housebound. Don’t get me wrong, it’s not that I don’t want to see his mother, it’s the fact, that she lives in the middle of nowhere. To me, nothing is worse than being stuck on a bus for hours. I have never been a great traveller, I hate buses as much as I hate cars, you sit down and that’s it, your stuck. Condemned to sit there, over miles of boring countryside, that looks just like all the countryside you have ever seen before. Travel was never high on my list of things to do. For some reason, I have never fully understood, I actually used to enjoy being on a train or even a plane, the problem arose, when I reached my destination. All I wanted to do, was go home and that feeling didn’t change, even when I was somewhere I had chosen to go. I don’t know what started it, all I do know is, it was there within me, from childhood on. I would almost say, that I was born this way, as I can’t think of a single occasion or event that started it. No matter where, or how long I was due to stay there, be it hours or days, I just wanted to go home. I went off it even further, the day they said that you could no longer smoke on a bus, train, or plane. That for me was the final straw, I haven’t left Glasgow, for any reason, ever since.
I guess, we all have things like that, that are almost part of our DNA if you like. It doesn’t matter what we do, or what happens, we just can’t change them, nor can we find the real reason for them. Oddities, that have always held us apart from others, but feel totally natural to us. I know for a fact, that if I said “I hate going away on holiday”, others always looked at me as though I had fallen off a Christmas tree. It is one of the things that I have found totally wrong in this world, that we are made to feel like an alien, just for being ourselves. This example is a truly minor one, I could have chosen several that I personally have, but thanks, to Adam, this was the relevant one to today. That, though, doesn’t actually change the core element, it set me aside and made me feel odd, but only when others knew about it. In some ways, there is a clear parallel there with living with an invisible illness, it can be our secret, or we can tell others, but at what cost. It is for some, I know, a huge soul-searching time, do you tell everyone, anyone, or no one?
I didn’t have to think about it at all and that is the absolute truth, I didn’t question it, not even once. I had nothing to hide and nothing to be embarrassed about, I was quite simply ill and it wasn’t my fault. I didn’t just tell those who needed to know, I told those who I thought should know. When you are told that you have a totally unpredictable illness that is also progressive, it means that unless it is a fleeting relationship, people will notice something. You could argue, that it is no one else’s business other than yours, but surely it is less embarrassing, just to be honest. I went to work the day after I had my full diagnosis and didn’t just tell my direct boss, I told those I considered to be my friends and my staff. I also told all of them, that I didn’t want it to be a secret. I preferred that people knew that the reason I might be staggering down the call center or suddenly lying on the floor wasn’t that I was drunk, and if I did fall, that I would appreciate a hand back up again. As time went on, I also saw it as a great way of teaching those in the company about just what PRMS was and what it did. When a couple of years later I had to have the chemo treatment, Mitoxantrone, I sent a company-wide memo, asking people to stay away from me if they had a cold, due to my weakened immune system. Outside of that period, they all knew they could ask me anything at any time, I was quite happy to talk about it. There was one huge change within the entire company that I noted and documented, the sickness level fell. Firstly, it was me, that the call center staff had to speak to if they weren’t coming into work. It’s hard to call up someone who is clearly far iller, but still at work, and say your not going to be there that day. Secondly, that effect snowballed. Just having someone around who was not being beaten by illness, does make people think twice about just how ill or not, they really are.
Outside of work, I was just as free about talking about my health. Anyone, even total strangers, I had no problem saying what was wrong, if there was a need to. Once you are in a wheelchair, well that need diminishes as it is no longer invisible, but it is then, that I found more people asking. I suppose if you still look reasonably healthy, people do wonder why you are on wheels. There were many occasions, where I found people looking at me in a way that I could see the question in their eyes. I would always smile and tell them that it was OK they could ask, or if we were already talking, I would just bring it into our conversation so that they didn’t feel rude. To me, that is the way to deal with it. If we, the disabled, want understanding from the public, we have to be ready to give it. It is human nature to have questions, to have the need to know, we are inquisitive creatures, especially children. I have had several odd questions from them, one I remember clearly in a cafe when I had my nasal gastric tube. On that occasion, I even landed up taking my spare tube out of my bag. She wouldn’t believe how long it was, so I showed her how the two matched against each other and explained the missing piece was deep inside me. Her mother, well she had been doing what grown ups do, telling her daughter in a whisper, not to stare and not to ask loud questions. I just wish, her mother had felt that it was OK to question.
I can, though, fully understand why some people choose to say nothing, for as long as possible. Some will just feel that it is personal, that it is their business and no one else’s. I can see that, but what happens when they do suddenly slur their speech or can’t walk properly? How long will it be before they are forced into telling them anyway? Aren’t their colleges and friends going to feel bad, that they didn’t feel that they could share such a thing? Personal, to me, is fine when you are talking about things like finance, but any health condition that is bound to show itself at some point, can’t be personal forever. I do understand it, but I believe that it is littered with pitfalls and it’s only a matter of time before it’s out of their hands. I don’t know how it is in other countries, but if it is a case that they fear they might lose their job because of it, well that can’t happen in the UK. The law is quite clear, you can’t be sacked because of your health. The company has to make appropriate changes to your work and workstation so that you can carry on working in safety. That includes, regardless of cost, buying new desks and chairs, putting in ramps when required and a lot more than anyone thinks. It can cost the company thousands, but they have to do it, it’s the law and mine did.
What we tell people is up to us, but it is something, that needs thought. I was perfectly upfront with much of it, but yes, there were some things that I kept to a select few. Discussing the use of catheters, or the loss of libido, weren’t the sort of subjects I was going to bring up with the sales team, as they say, too much information, but the more general things, well I had and have nothing to hide. Some conditions clearly can be hidden if that is the person choice, but I would urge everyone to think carefully, there are pros and cons to either side of the argument. Our health can be isolating, to volenterally isolate ourselves futher, seems an odd thing to do. Even if my condition had held a social stigma to it, I like to think that my reaction would still have been the same. In fact, I think, that I might actually have been some what forceful about telling people what was wrong with me, as my duty to teach, would have been felt even stronger. To me, education is a wonderful thing, whether you are the student or the teacher.
Please read my blog from 2 years ago today – 22/10/2013 – It’s a day