I was honoured to write another article for the MS Trust this week. Here’s the link to see it on their website:
The first time I used a wheelchair was in an airport. We’d just landed in San Francisco and were greeted by a smartly dressed porter and an oversized ‘chair. I felt like a hobbit as I clambered onto the seat, which could easily have accommodated both myself and my husband. The relief of finally being off the plane was boosted by the joy of whizzing effortlessly along the vast walkways and past the long, winding queues at Passport Control, as if I were royalty. Ten years on from this first experience, and many borrowed and owned wheelchairs later, the novelty has worn off somewhat, but the overwhelming sense of relief has not.
My legs took the brunt of my MS right from the start, running soon became an impossibility and walking – an agonising nightmare. Being active was one of the most important things to me and remains my biggest loss. However, things did improve for a while after my diagnosis in 2010. I was treated to the wonder drug, Tysabri, which calmed my MS down enough to enable me to walk short distances, sometimes with a stick, sometimes without.
It had taken me a long time to even accept that I needed to use crutches. I didn’t want to look ‘disabled’, I didn’t want to be different, I just wanted to be ‘normal’. I was far happier to cling onto rails, fall against walls and crawl stubbornly along the floor than I was to concede that a walking aid would help. I must have looked anything but normal in those denial filled days!
Over the past couple of years my spinal cord has taken a bit of a battering and walking has once again become unbearable. One of my nurses gently nudged me towards my local Re-Enablement Centre and I was blown away by the care and support I received there. Within weeks I had my very own made-to-measure, swanky new wheelchair and the difference it has made to my life is phenomenal. Everywhere I go I have a seat! No more sitting on the floor in queues, no more desperate and fruitless searching for an empty bench and, most importantly, no more missing out on fun! I can spend longer with my children at the park, I can enjoy a full day out shopping, I can join in on family ‘walks’.
Why the heck didn’t I get one sooner?
Looking back, I’m not at all surprised by my own reluctance to embrace such things. Using any kind of mobility aid takes a lot of courage. For many, disability is still a taboo subject, and I think I was a tad bit embarrassed by my MS and more than a tad bit scared. Using a stick, or indeed a wheelchair or scooter, transforms this so-called invisible illness into something very visible, and I wasn’t ready for that.
Now that I have my very own wheelchair, I think nothing of it. I happily hop (unsteadily) in and out of it and share it with my 3 children, who love to have a ‘go’ in it. It has become a normal part of our lives and I wouldn’t be without it.
There are so many negative connotations associated with wheelchairs and scooters. I’m sure most MSers have worried about being ‘stuck’ in a wheelchair, or of being ‘wheelchair bound’, but as an official wheelchair user, I no longer see it like this. Using a wheelchair has not taken away my life. Rather, it has given me my life back.
2 thoughts on “Just Keep Wheeling …”
So glad you find your wheelchair so good! My scooter gives me freedom and I’ve got used to the visible sign of my disability. I would be so limited without it. Thanks once again for a great article!
Completely agree with everything you’ve said. I didn’t mind using the stick, I had some weird idea that it was romantic and tragic and mysterious. Crutches I hated, I thought people would think I was a drunk or junkie that had used too much and couldn’t walk properly – as walking was so erratic and there was no visible cast.
A wheelchair however, especially the electric one offers much more freedom. and the cats fight over who gets to sleep in it when I’m either in bed or on the sofa (they love the pressure cushion).
There are limits though, it may be the 21st Century but access to several shops, cafes, restaurants, tourist destinations is still extremely limited. I don’t expect unlimited options but I get so frustrated with places where access could be so easy with the addition of a small ramp and a bit of understanding. Ignorance and a “not my problem” attitude drives me to distraction!