As I celebrate my 43rd year since being diagnosed with Multiple Sclerosis, this is a good time for me to reflect on the joys of life with a chronic disability. There are certainly challenges associated with being quadriplegic and on a ventilator. I am a long-term patient in my local hospital and require an accompanying nurse when I go out into the community. I get my meals via a tube to my stomach. As a result, there are many food experiences that I can no longer have.
However, I still get to enjoy an occasional glass of red wine – in small doses, via a sponge in my mouth. I have lots of company every day (hospital staff and frequent visitors) and – once or twice a month – I go out to events in the community. Most recently, to the ballet Romeo and Juliet for Valentine’s Day. And I have a girlfriend with whom I am planning an exciting future! Does life get much better than this?
There was a time when things didn’t look as good – I was living in a long-term care home and receiving low levels of daily care. My health was on a downward spiral and my future prospects looked bleak. I thought about the possibility of medical assistance in dying and whether it might make sense for me at some future time.
Then I had a major incident – I aspirated and was found unresponsive. I was rushed to my local hospital, where I slowly recovered. In ICU, with high levels of daily care (4 to 5 hours), I gained strength and was able to rebuild my life. One year later, I had returned to my online studies and completed my Masters’ degree.
Now, my days are very full. I am still an active student and researcher and I am working on a variety of projects aimed at sharing my experiences of disability. I have become much more engaged with life, even as my level of disability has increased.
Without my disability, I wouldn’t be doing all the things I do now. I wouldn’t be enjoying the daily interactions with family, friends, and caregivers that make my life so rich. I might never have discovered my life purpose – that I am here to share my experiences with others, and to support those around me, even as I get support from them. This has been the gift that disability gave me.
As my friend Gabrielle Thibault-Messier* said “You are either lucky enough to experience disability, or you die first.” I am very fortunate to have experienced the life-affirming power of disability. I hope that my adventures exploring the true meaning of disability continue for many more years!