Ms has taken it’s toll on me. Not necessarily all bad, but there are things that I can’t do now that I gave up too soon and conceded to MS.
The first thing is obvious, walking. I have two daughters and when the youngest, Laura, continually jumped out of her pushchair, I had nothing to grip on to, so I raised enough money through donations and a ceilidh held by a friend to buy my first wheelchair. It was red and I felt reflected my personality. I used this wheelchair when I was out and about although on reflection and now with huge hindsight I should have stayed on my feet.
In our old house I used to walk, sort of, holding on to available furniture, kitchen units and walls. This resulted in my DNA being all over said walls. Whilst I didn’t mind this as it kept me on my feet, it wasn’t so popular with Husband in a Hurry. When we moved to our existing house 25 years ago I started using a wheelchair indoors. Again, I should have looked into a frame or another walking aid to help me maintain an upright position. NB, this is my own fault and I should have fought with more determination to stave off MS. Anyone who knows me knows that I don’t give in easily, it’s called ‘bloody mindedness’.
When I moved here I tried to find a job that would suit me, something similar to the fantastic job I had back in Hedge End. I worked part-time, therapeutic reasons as a non teaching assistant in a secondary school, Wilden. I loved it there. Coming down to East Sussex I tried to find work and I went down many avenues. I don’t think I tried hard enough, because I didn’t know many people here, I had no connections that I could call upon and I didn’t push at the doors hard enough or bash them with my wheelchair enough. I did an access course to higher education hoping that I could fulfil my ambition to go to university. I got a place at Sussex University studying English Literature and Sociology. I only lasted half a term. I didn’t make enough fuss, I didn’t say: “I use a wheelchair you need to support me.” I didn’t go to student welfare and ask for help, I just gave up. I went to college to study for an A’Level in English Literature. I got an ‘N’ grade and I didn’t know what it meant but I’m guessing it wasn’t a pass. I started studying Counselling and I was good at that I did 3 years of a 4 year diploma but I gave up in the 4th year because I didn’t like psychodynamics. A group of us students went to a session in the tutor’s house and I asked a couple of the women to assist me to the toilet. I told them quite clearly not to lift me, just to help me shuffle across, but the following week I was verbally attacked because helping me had hurt their backs. I never went back. After lasting in a supermarket checkout for 3 hours, they told me that it was ‘too difficult’ to shoe horn me into the cashier’s seat, I gave up working.
When Husband in a Hurry retired he had to give up his company car. I’d like to say ‘we decided’ but I don’t think ‘we’ did. He drove when we were out together and I didn’t go anywhere on my own, so I stopped driving. I was getting into the car via a sliding board, however it became more difficult and we invested in a Milford person hoist, which manoeuvres me into the passenger seat. This requires bolts to be fitted into the car itself and ‘we’ only needed the mechanism on one side, not the drivers side. So I gave up driving, too. I told myself: “Well at least I won’t get the speeding fines, or any scrapes and dents, so it’ll be okay, won’t it?” But obviously, it’s not is it?
I’ve learned through all of this that it’s always worth fighting for what I need and want from the rest of my life. I must push those doors harder rattle my chains and bash those obstacles with my wheelchair. I can’t reverse any of these situations but watch out for your toes when I’m reversing in my chair, I’ve grown a thicker skin now!