Jose This page is second of the set of Personal Perspectives by Type III Adults. (This was originally given as a talk at the JTSMA 2000 conference)

One of the many hurdles people, including myself, have to overcome when you have any type of SMA, is coming to terms with your diagnosis. With type 3 this sometimes doesn't happen until adulthood. And it seems the older you get the harder it is to accept. Even though you have known from quite an early age that there was something not quite right. At school you start to notice that you don't run as fast as other children, games that your mates play, like leapfrog, you just can't get the hang of. When you are waiting to be picked for teams in the games lessons, you know that you are going to be the last one to be chosen. Trying to compete at athletics in the senior school was just a joke. And as for swimming lessons, after a bad experience in the pool when I thought I was going to drown, I never went again. I must have been the only girl in the school that either had a period every week or verrucas. And if I wanted to be really sure I didn't go, I would have both. But you struggle on through your school years and then go on to work. This is a whole different game altogether, by this time you definitely know something is wrong, but if you had a doctor like mine you will most probably be told that there is nothing wrong and it is all in your mind. You try to hide your disability from workmates so you don't have to answer any awkward questions, questions that you haven't got the answers to. You become quite good at climbing stairs when no one is looking, because that is usually a dead give away. You adapt to your environment finding ways to do things that won't arouse suspicion. Going down the pub after work was like going for a jog, people walk so fast and you try to keep up, and by the time you get there you are puffed out, you go straight to the loo, have a sit down get your breath back so when you rejoin everyone you can actually speak. Another thing you try to hide is the tremor in your hands, this seems to get worse when you are nervous or angry, and you would love to have a pound every time someone asks you if you have got the d.t's. and if you would like a drink. In the end you want someone to say something because you get fed up with the pretence. And to be honest if people knew that there were certain things you couldn't do, life would be so much easier.

For me the turning point came when I met my husband Derek, he said that it was about time, as us Londoner's say, to get things sorted. I went along to our G.P. we had at the time, he took one look at me, said, well there is something wrong, I don't know what it is, but I know a man who does. From there I was sent to the national hospital in London, and after tests that involved a muscle biopsy and the dreaded E.M.G. at the age of 20 I was diagnosed as having SMA type III. In a way it was a relief to finally be told. I now knew after all those years of doubt, that there was something wrong, it wasn't all in my mind, but now I had to come to terms with it. You go through a whole range of emotions. The first one being why me? Well, why not. You get angry. You even go through a kind of denial, the doctors have got it wrong, even though for years you knew that this day would come. And for me personally, I had to overcome a lot of guilt, here I was with the same disease as my brother, but I was still walking and he had spent the last 20 years using a wheelchair. I felt guilty because over the years he'd had more attention than I had, he'd had more help, I was just left to get on with it and that had made me angry and resentful. These feelings go eventually, but not totally, they are always there at the back of your mind, rearing their ugly heads every now and then, but I like to keep them locked away so I can concentrate on more important things. It took me years before I told any one that wasn't close family, that I had SMA, I think what I needed was a kind of meeting like alcoholics anonymous, where I could stand up and say, my name is Jose Rogers and I am disabled.

What helped me to start speaking out and telling people that I had a disability was after I had children. The thing is, with mild type III SMA people don't realise that there is anything wrong, you don't use a wheelchair or carry a stick, and when you are standing still you look so called normal. It's only when you start to walk, that people might notice, as the doctors call it, a rolling gait. Or as I like to call it, my seductive wiggle. So because nobody realised there was anything wrong, I was always being asked to help out at school events. So in the end I had to explain why I couldn't go walking over Hengistbury Head, opr wander round some old castle with those lovely spiral staircases. But what I could do was to sit at the door and take entrance money for the summer and Christmas fetes. So once I started to speak out it became easier. When one of the Mums' outside school asked me why I had a disabled driver sticker on my car, I said because I am. And to my surprise and delight she just accepted it. No questions asked. In shops that don't have a lift and I want to get to another floor I will ask to use the service lift, I just tell them that I can't manage the stairs, they take one look at me and usually come up with their own ideas as to why. Most people think that it is because I have a bad back, but the best one was when a woman said to me "my friends got an artificial leg" that's nice I thought. People always seem to be curious about your disability. Sometimes you don't want to explain to total strangers what's wrong, and anyway you should be accepted for what you are. My brother, who uses a wheelchair, and I have decided that the next time he is asked why he uses a chair, we will either tell them it was because of a shark attack, or he was shot when he was on the Mafia hit list. This new found confidence didn't come over night. In fact when I had my stair lift installed, because it was visible from the front door, it was along time before I would open the door fully to let people see it. I saw it as another admission that I was disabled and that I needed help.

But sometimes no matter how much you try, you can't change your environment. Night clubs tend to be either up a flight of stairs or down some staircase that has been tiled, and if you haven't got your rubber soled boots on, these can be lethal. Toilets again are usually down a flight of stairs. But if you do manage to get past these obstacles the place is so packed you can't find a seat and you spend your whole evening pressed against a wall for fear of getting knocked over and not being able to get up again. Going to the pictures you might think is safe, but if you get there a bit late and the lights are out, you can't see where you are walking, you start off on the flat and then they put a slope in! it doesn't take much to fall over. Or you go to one of the big cinemas and you have to either go up or down stairs to get to your seat all without the aid of a hand rail, so you always make sure you are with someone who knows instinctively to lend you a hand. So a drink in the pub where I know it is well lit, on the flat and I can get a seat if my ideal night. That leads me on to another problem - chairs. When I have been invited round to someone's house for one of those women only Tupperware parties, I always like to get there early so I can get the pick of the seats. I usually pick the high hard dining room chair that makes your bum go numb but at least you can get up without making too much of a spectacle of yourself. When going to a new place there are a number of things you check out almost subconsciously, like, are there steps to the front door, if so how high are they, have they got a downstairs loo, if not, what are the stairs like and more importantly is there a banister? If there isn't one then the stairs are a no go, and then you have to watch what you drink.

I mentioned my children earlier, well that was another difficult time. After going for some genetic counseling, which I am afraid to say was pretty basic, my first child, Sarah, was born in 1984. the doctors really didn't have much of an idea how labour would go and whether I would have any difficulties. So it was a bit hit and miss really, but I don't think I had any more problems than other women might have, apart from being very tired after. While Sarah was a small baby I seemed to cope all right. To carry her up to bed I would place her in one arm and then haul myself up with the other hand using the banister. It was only when she started to get bigger and wriggle about that I had problems if Del was home then he would carry her up to bed, but if it was during the day she would either have to have a nap downstairs, or when she was big enough, crawl up the stairs with me behind her giving her some encouragement. This usually meant me pushing her gently on her bum. Not the ideal way to start your afternoon nap, but I didn't have much of a choice. When I became pregnant the second time, Sarah was only 14 months old, she was still a baby herself and of course wanted to be picked up all the time, which for me was very difficult. But you adapt and find a way around it, this usually meant looking for a chair to sit down on and then I could give her cuddle. Simple things like doing up her shoes involved looking for some where for Sarah to sit so she could lift her leg up for me to reach without bending over too much. Over the years we got this off to a fine art, when she asked for her shoes to be done up I would slap the front of my thigh where I wanted her to put her foot and she would assume the position. When my son Sam was born things got a little easier again, I think this was because I didn't have a great big bump sticking out the front getting in the way. If I was playing with the children on the floor and they needed to be picked up, first I would have to crawl to a chair to get myself up and then I would go back and pick them up. This is OK in the privacy of your own home but not the sort of thing you want to do in the middle of a mother and baby group. So I am afraid when the children were really small and wanted me to sit on the floor and play with them, I stayed away from those places. I went to a mother and toddler group once, but when I found out that all the toys were stored down in the basement and every week people took turns to go and get them out and put them back, I never went again. It was before my speaking out days. When I look back I wish I had said something but because I didn't, it stopped me from having another circle of friends. As the children got older and started to walk I had to make sure that when we were outside that they were safe. This meant putting reins on them, if I hadn't and they decided to run off there wasn't a lot I could do about it. But the older they got the more aware they seemed to be of what Mum could and couldn't do. Sarah soon sussed that if she had done something wrong and needed to get away quick, she would run upstairs to her bedroom knowing full well that by the time I got to her I would be so puffed out that I wouldn't have the strength to do anything about it. But now they also know when I need a hand. Sarah, after wearing me out walking round shops all day, will kindly drag me up the hill to the car. Sam, now 14, does all the manly stuff like opening screw top lids and opening cans that have got those ring pulls on them, I'd just like to say thank you to the manufacturers for that one!

At the moment I am feeling quite good, apart from sore knees where I fell over in the garden about a month ago. I'm getting too old for scabby knees. Wooden decking looks very nice but it hurts when you fall on it. Luckily Del was there to pick me up, as this has to be done in a special way. One of the worst things is falling over in public, people come over to help you, but you have to explain that by pulling you up with one hand will have no effect whatsoever. I am slowing down a bit though, I noticed this the other day when I was over taken by a little old lady when I was out shopping. I have just started evening classes to learn British sign language, I wanted to do something, but for me going back to work was a bit of a problem, obviously I am limited to what I can do physically and some would also say mentally. So I decided to get involved in something I know a bit about, and that is people with disabilities. Hopefully if I pass the exams in a year's time I will be able to and help out in local hospitals and schools. I still have my off days but then again doesn't everyone? But I only have to look around to realise I really haven't got a lot to moan about.

Well I hope I have given you a bit of an insight into my experiences as an adult with type III SMA I will be around all weekend if any one wants to have a chat.

Thank you for listening.

© JTSMA May 2001