Two Years with a Spinal Cord Injury: What I’ve Lost and What I’ve Learned

March 10, 2018 marks two years of life with a spinal cord injury. Two years that have passed in that familiar fashion where days are long but months and years are short. I know many people who say that one day I will lose track of the years, but I know myself better than that. I find dates orienting and acknowledging the time that has passed, grounding. When I think back to how I felt this time last year, at one year post injury, it amazes me how much my perspective has shifted. I now find myself more comfortable and confident in this body that – for so long – felt strange and unfamiliar. And a wheelchair that once felt foreign now feels like an extension of myself. While two years in the grand scheme of a lifetime is relatively short, those years can hold within them potential to be significant. With all of the changes that I have experienced, I would be amiss to say that these two years haven’t left a lasting mark.

No, these two years – for me – have most definitely been significant. They will not become years that I skim over when I recall the events of my life. This will forever be the period in my life that set the framework for how I would pursue the rest of my journey on this earth. It is a time that has been riddled with new experiences and constant challenges. But what is any challenge in life, if not an opportunity to rise above circumstance and prove to yourself that you are worth surviving for? You are worth thriving for.

This phase of my life has felt like a constant tug-of-war between failure and triumph. Throughout, there have been two main themes encompassing my thoughts: loss and learning. Both have been prevalent on this road to recovery and a lot of times they go hand-in-hand. The loss can still feel vast and overwhelming. But it forces you to look outwards and discover things about yourself and the world that you never knew before. In saying that, I want to share a few pieces of my puzzle. I want to share with you the losses I still feel, but also some of the lessons that help carry me through.

The Losses

They aren’t for sugar-coating. With spinal cord injury comes loss both obvious and invisible; physical and emotional. What is the obvious loss for me? My legs. What is invisible? Everything else.

I have lost the use of my legs. I cannot walk. I cannot run. I cannot crawl around on the floor with my children or piggy back them to their beds at night. I will never again run into an ocean or a lake and I will forever feel a little flip in my stomach every time I see a staircase and wonder if there is an elevator or a ramp. It has been two years since I stood freely on my own two legs.

I have lost all sexual sensation below my waist. It’s gone and I miss it. Sex is still very much a part of my life but it has changed in ways that I could never have imagined. If losing my virginity at 16 years old was good for anything, it was for the fact that I got a few extra years to experience sex as it was before. It has been two years since my sex life became something different.

I have lost innate control of my bladder and bowels. They are now controlled with Botox, suppositories, schedules and a lot of faith. It has been two years since I used a bathroom because I actually knew I needed one and not because of a schedule.

I have lost time and spontaneity. Disability robs you of time and the ability to get-up-and-go on a moment’s notice. Completing almost any task takes longer now than it used to. Going out anywhere takes more planning and preparation. It has been two years of lost time. It has been two years since I have felt able to be spontaneous.

I have lost experiences. This one is the hardest of all and one I could go on about for longer than I care to admit. So much of these centre around my children. Lost moments of play. Lost experiences wading in the river or exploring the untouched paths in the forest. How many nights have I missed snuggling in their beds with them because those beds are too difficult for me to get onto and manoeuver myself around? How many more lay ahead? I wish for my body back most often in moments where I feel like I’m missing out with my children. It has been two years since I could join in whenever I felt like I wanted to.

The loss. It’s always there, hanging in the air like a stubborn cloud. Sometimes it is faint and wispy and the light can shine through without issue. Other times it’s dark and menacing and it blocks out any signs of a brighter day. Most of the time it’s somewhere in the middle, partially blocking the light but also bending it and forcing you to see it differently. Like in a sunset, the clouds can actually bring a beauty to it that you may never have expected.

 The Lessons

I have learned that laughter and tears both have their place, but humour will push you forward and take you further. Having a sense of humour allows you to own the absurdity of the experience instead of falling victim to it. Laughter sits at the threshold of a second attempt while tears usually signal momentary defeat. There is purpose and release in both but I don’t know how one forges ahead without a sense of humour.

I have learned that progress doesn’t ever have to stop. My body may not heal. The signals from my brain may still be hitting the same dead end they first came up against two years ago, but I can still persist. I can do things to improve the half of my body that still functions. I can continue to try new things and make strides in my abilities. There is no reason to ever give up on myself and what I can accomplish.

I have learned that accepting a situation doesn’t mean you have to like it. Moving forward with this mind-set is liberating. As though you untie yourself from having some sort of power to change what is impossible to change. And it allows you to find happiness in everything you still have, while continuing to give yourself permission to say that the situation sucks. That it is part of my reality and I may not like it, but I’m going to have to go with it in order to take on the rest of my life. I can now accept that all of those losses I talked about above are real and true in my life in this moment. I can feel them and acknowledge their presence as a reality instead of denying them because I don’t want them to be true. Being honest with myself may initially feel like a harsh spotlight but it reveals perspective and realism in my goals.

I never thought I would have so much to learn at this point in my life. From self-care to wheelchair life to caring for my children in this capacity. Although I think the biggest lesson is that life stops for nothing. You either keep moving with it or you get left behind. This life is all about what you make of it and who you surround yourself with. I’ve learned that I’m capable of handling things that I never thought possible. I’m two years in, and still making self-discoveries as I go.

Two years. I can close my eyes and feel like I’m back to the day it happened. I only have to look to my children to see that the time really has passed us by. Two years in the life of a child makes such a difference. In some ways, the last two years have been a childhood of sorts for me. The early years of my injury consisting of more change than I can keep track of. A sense of coming into my own amidst heightened emotions and then figuring out where I fit in this world. I have much more peace going into my third year than I did going into my second. I can say with some confidence that this is starting to feel like me and that I think – just maybe – I’m starting to get the hang of it.