I was asked to give a talk to the people I work with to celebrate the International Day of Person’s with Disabilities. These are the notes that I wrote. I planned to read them out loud, but ended up just speaking from the heart. The response was lovely and I got asked some really thought provoking questions.
I did want to share the notes with all of you. I was asked to talk about not just the challenges I face, but how I work at overcoming those challenges.
So I live with two different disabilities. I was born with spastic cerebral palsy and eight years ago, I was diagnosed with relapse and remitting Multiple Sclerosis. Both of them affect my body in different ways.
The cerebral palsy means that at any given time, my body is in some kind of pain. My muscles will spasm and they will normally take a day or two to unclench and relax. It can sometimes take up to a week for those muscles to relax, but by that point more spasms will have taken place. For instance, my right leg spasmed sometime last week and the muscles have yet to relax which makes walking painful.
It causes difficulty with my walking and coordination and balance.
The multiple sclerosis is something else altogether.
I’ve had to re-learn how to walk, speak and type. When the MS first hit, I lost a lot of my motor functions and have had to reclaim them. I still have difficulty talking occasionally when my brain knows the words but the words don’t want to come out.
Like the cerebral palsy, the multiple sclerosis causes spasms, along with a whole list of different symptoms and challenges. The ones that I deal with on a regular basis are balance issues, brain fog, crushing fatigue, tremors, vision problems and blindness, bladder and bowel problems. I also have issues with memory. For example, I used to remember every book I’d ever read and every film I’d ever seen. Now that’s all gone.
I also have times when I randomly fall because my muscles give out when I’m walking. Thankfully, there has always been someone around when this happens and it doesn’t occur too often.
I was lost in the dark for a bit. I call it the dark forest. I live with depression, so dealing with the MS on top of the CP was made a lot more difficult because of that.
A few months after the MS hit, I knew that I had to change the way that I look at everything. I didn’t want to bemoan my life. I wanted to celebrate it in some way. I knew that this was an important choice to take control of my life.
I do a number of things to help me deal with living with Cerebral Palsy and Multiple Sclerosis. I work out three times a week and when I can, I try to swim three times a week and go for a walk up to three times a day. This helps keep my body active and also helps to loosen my muscles.
I also write a lot to keep my mind active. Having to focus on the plot of a story helps to give me focus and keep my mind clear. I’m always writing something or thinking of the next story or piece of writing. In the past two years of Covid, I’ve written five books.
I also paint. Whenever I get stuck on a story, or just when I feel the need, I paint. I do abstract work and I try to evoke the feelings that I’m going through that I sometimes have no words for. It helps to clear my mind and always releases feelings that I may be holding on to.
I meditate at least twice a day, once in the morning and once in the evenings. It helps me to find that centre of calm. When I have difficulty figuring out what to do in a situation I may find myself in, I usually meditate before I make a decision. That way my mind is clear and my decision is sound and not motivated by the wrong emotions.
I also read Tarot cards every morning and oracle cards every evening. It bookends my day and gives me a focus for the day when I read Tarot in the morning. In the evening, I find it helpful to reflect on what I’ve learned that day. This all helps with the positivity.
Ultimately, I’ve realized that positivity is a choice. I can spend a lot of my energy focusing on the negative things in my life, or I can try to find the joys that are in every day. Sometimes, I have to really look for them if I’m but there is always joy, even if it’s small.