Spinal cord injury awareness month is still on my mind. My last post talked about the aspects of SCI that I struggle with the most: bladder and bowel control. But I was thinking about what awareness really means and how shining a spotlight on only the challenges can draw focus from the accomplishments and the awesome lives people with SCI are living – it can skew people’s perceptions. And while I think it is incredibly important for everyone to understand the struggles and barriers that someone with a spinal cord injury comes up against, it is equally important to understand that so many of us choose to face those challenges because we still want to live our lives – spinal cord injury and all. There is happiness, adventure and so many amazing things still possible and bringing awareness to SCI means showcasing that as well.
The realities and challenges of this injury aren’t small and I’m not trying to minimize the things we deal with. But the good things in my life are worth highlighting. So, what follows is going to ignore the barriers, the difficulties and the things I cannot do. I’m going to tell you about what I can do – what I love to do – and what the majority of my life is all about.
I write. I write all the time. I do it for clarity, healing and escape. I do it out of frustration, love, happiness and honesty. Sometimes I do it so I have an excuse for a quiet moment away from my children. Most importantly, I write because I love it and I am able.
I sing. I sing at home, in the car and – too often – absent-mindedly in public. I sing with my kids even when their song selection contains notes that are too high for me to reach and it comes out all screechy (Read: Let It Go). But my favourite time to sing is when I sit next to my littles in bed and they ask for their songs – the ones I’ve been singing since they were babies. Every time I sing one of those songs I am grateful for life.
I go to dance class, read, play games and stay up too late watching Netflix. I go for walks/rolls around the neighborhood and take my kids out for ice cream, to the beach and to the movie theatre. I volunteer in my children’s classrooms and go on field trips. I read them stories and we do crafts together (oh so many crafts).
I get my nails done, my hair done and go shopping for things I probably don’t need. I see my family. I meet my friends for coffee and go out for dinner. I go see live theatre and go to concerts. I celebrate birthdays, graduations and anniversaries. I go to the pumpkin patch in the fall and the Christmas light displays in the winter. I change the décor in my house seasonally.
I laugh at myself. A lot.
I go kayaking, paddle boarding, surfing and swimming. I wander through trails, forests and even corn mazes. And, as of August, I go camping.
I work out. (but maybe not as often as I should)
My husband and I go on date nights and spend the hours after the kids go to bed, together on the couch. We talk, laugh and make each other think. We make one another feel important.
I have sex.
I’m sure there is more, but just writing this list has made me thankful for the amazing life I still have. My life is not sad and neither are the lives of the hundreds of thousands of people living with a spinal cord injury. We are out there doing our thing. There are mothers, fathers, artists, doctors, entrepreneurs, dancers, actors, lawyers, athletes, teachers, writers, thrill seekers and more. We have passions, hobbies and jobs and we are constantly looking for different ways to pursue them so we may take control of our own happiness.
One of my hopes in bringing awareness to spinal cord injury is that people will want to help. Not help me personally, but help make the world an easier place for people with disabilities to thrive in. I hope I can show that I want to live a good life and to contribute to the world but also depict the struggles that I face in doing so. It is only once people are aware that they can take a second and third look when designing buildings and creating spaces for their communities. The more people that are aware, the more people there are to think about what they can do to make their businesses, products and communities work for everyone.
Most importantly, today, I want you to hear this. I am happy. I have love, family, friendship, creativity and adventure. And when things go sideways, I have wine and buttery popcorn. My life is not perfect and you can read all about the struggles of SCI in many of my blog posts. But I wanted to be sure I wasn’t leading you completely astray. Please don’t feel sorry for me; my life is good.