2nd January 2008
I’ve concluded that I got lucky. Some folks don’t like it when I say that for some reason. They seem to think it’s because I’ve been so strong all my life, that I’m a survivor and they don’t seem to believe that luck had anything to do with it. From my point of view I could say that I’ve been unlucky.
I haven’t written anything for the past weeks and the reason has little to do with recent Christmas and New Year celebrations. Actually, that’s not true. I have written a couple of things. I just haven’t put them up anywhere. I didn’t even save them.
I had two trips into hospital, lasting several days each, at the beginning of December for a problem that I’ve been trying to get proper help with for many years. Had I got the help I always knew that I needed when I asked for it I wouldn’t have spent that time in hospital at all. I’ve spent quite a bit of time thinking about that in the past weeks. Co-incidentally, it was the same hospital that I had tried to get help from years ago. The same hospital where I was told to “go home and take a laxative”.
This time … at least two of the doctors who saw me were very surprised to learn that I didn’t have a brain shunt. There was another little incident too but it eludes me at this point. This is because, in spite of “no morphine” being written on my chart and even highlighted, they gave me morphine for the pain on the second trip in and it’s messed with my memory. Matthew tells me that I rang him on three separate occasions to ask what I was doing in the hospital. So things have gotten a little mixed up in my head.
Either way, I do remember these two doctors being surprised I didn’t have a shunt and at some point I did remember what the other things were. It’s these incidents though that gave me pause for thought. The doctors surprise at my condition especially. It’s made me wonder who and how many doctors have believed me over the years … oh and there’s another little thing too. The GP I was seeing. When I rang to tell him, after the first trip to hospital, what had been going on he told me that the “cause was yet to be determined”. This annoyed me because the cause was determined at my birth and because of the manner in which he had spoken to me the last time I saw him, which was not bad but had, in fact, impressed me.
One week he had sat there, looking all important, and said to me when I asked him about my chronic constipation that those with Spina Bifida were known for having weak bowel muscles basically. I had thought “wow, at last, someone who knew what they were talking about”. I thought I’d finally found a doctor who could help me. Then, about a week later he says the cause is “yet to be determined”. It was a good point. The cause could have been something else altogether but, on the other hand, the nerve damage to my bowel was diagnosed at birth and it has always been a problem for me which is why I was trying to get help in the first place.
Excuse the haphazard manner of this entry please. I’m trying to remember things. Anyway, I had this GP and I had these two doctors in the hospital. As I said, it got me thinking and what I’m thinking is that doctors don’t believe me when I tell them that I have Myelomeningocele. If this is true then it’s the crux of the problems I have with doctors.
It’s safe to say that I have an attitude towards doctors. Overall, I don’t like them. The reason I don’t like them though often has to do with their own attitude towards me. I try to explain that I don’t quite fit into the box but I don’t think they get it. For the most part, I’m just like everyone else is but there’s a part that isn’t quite like everyone else. That’s the part I have the trouble with and thanks to the two doctors at the hospital I found the word I was looking for … expectations. I think that I have so much trouble because I don’t live up to doctors expectations of someone with Myelomeningocele. The two most obvious being that I walk unaided and I don’t have a brain shunt.
I think I’m as close to normal as someone with Myelomeningocele is ever going to get. I live a very independent life. To look at me, you wouldn’t have a clue that I had any problems at all. No-one can see Percy. No-one ever notices the slight difference in the way I walk – my left foot tends to kick inwards slightly when I’m walking (shoes make a difference) and I doubt anyone would notice my left buttock is three centimetres larger than my right. They just see me. Just like everyone else.
So the best I can figure is that I just don’t match up to doctors expectations of someone with Spina Bifida Myelomeningocele. Who knows, maybe they think I’m confused and don’t know what I’ve got? I’m often treated as though I don’t know anything about Spina Bifida. It’s true I’m certainly no expert on the subject but wouldn’t you think that I’d learnt a thing or two from living with it? Wouldn’t you think that after 40 years I’d know what my own condition was? Unless they’re planning on specialising in it, most doctors don’t really know that much about it.
My problems are small compared to most with Myelomengocele but they are still things that I have to take care of. If I could get the help. I met a nurse at the hospital who used to work with Spina Bifida children and he told me that after the age of 17 you’re pretty much on your own.
