When I do something, I do it properly; work, charities, holidays and hobbies all get taken to the max. I never expected that this personality trait would carry through into living with multiple sclerosis — but here I am, multi-tasking disabilities.
One disabling condition is just too boring for me; I am really going for it with mobility problems, sight loss, memory issues, pain, exhaustion, depression and a whole lot more. It’s a good thing I have loads of experience with multi-tasking, but “average” people don’t seem able to understand that I might still want to make the most of my life.
Here are some of the questions I’ve been asked recently, and how I would have responded if I’d thought quick enough on my feet (wheels.)
1. Which disability is your “main issue?”
Well it depends what day it is, or what hour. It depends on what I’m doing and how I’m feeling emotionally, what else I’ve done recently and how many spoons of energy I have left. I can’t see and walk and talk at the same time; that usually sees me collapsed on the floor. But if I’m in my wheelchair, I can have a pretty decent conversation around town with friends, unless the sun is too bright or it’s too dark; then you’ll see me fall silent.
My main issue however is not the disabilities; it’s the fact that society isn’t accessible and doesn’t understand that disabled people are as entitled to full and active lives as anyone else.
2. Why do you want to go to a movie if you can’t see it?
I love going out with my friends and family. I like losing myself in another world at the movies. I like to join in “normal” activities and feel like I did before MS took a lot of them away. I enjoy listening to the actors and their conversations and getting involved in the plots. I love audio description on films; they bring the best of movies and books into one place. I have discovered a newfound joy in the music of movies; soundtracks are not appreciated enough.
But wait a minute, why shouldn’t I enjoy going to movies? It’s my life, and if I want to go I should be able to without anyone commenting or judging or questioning me. No one does that to “average” people.
3. Why do you go out in your wheelchair if you can’t see very well?
My sight is a tiny issue when getting around compared to the state of pavements, road crossings, public transportation and building accessibility. I have a tunnel of blurred sight and I’ve learned how to use it pretty well; I have no peripheral vision so that can be a challenge, but if everyone on the street took care where they were going, didn’t stare at their phones, and had compassion for wheelchair users, I could cope OK. I prefer to be with someone when I’m out, and don’t leave the house on my own very much — perhaps once a month — but sometimes needs must, and with the help of strangers I’ve come home safe and sound every time.
Why do I go out? Don’t you? I don’t have agoraphobia; I’m an extrovert and I live with depression, which is made much worse when I’m on my own for too long. That’s why I go out, because staying on my own puts my mental health at risk. Going out might be difficult and exhausting, but it makes me feel better in my own head.
4. When are you going to accept you might need to reduce your aspirations?
When I’m dead. I’m never going to stop aspiring, planning or trying to do things or go places. I’m always going to want to have fun and do exciting or challenging things. I’m a mum to an 11-year-old and I want to be the best mum I can be for as long as possible. I’m a wife, and it’s hard enough for my husband to pick up all the things I can’t do without having great experiences.
I’m no different than anyone else; I want to live my life. No matter how bad things get from a health perspective, I’ll be challenging myself, and no one is going to stop me because they don’t think I should.
Follow this journey on LLM Calling.
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