Happy New Year, friends! Lol
Obviously I know we are well into 2023 and it’s too late to be wishing you all a HNY, but I would really like a do-over for the year.
Even though it’s the end of February, I have yet to fall into a productive rhythm. Everything feels a little off and it’s like I’m playing a game of whac-a-mole with my to-do list. Every time I knock one thing down, two more tasks pop right back up.
Life right now is one big juggling act and I think it’s safe to say a lot of you can relate to a hectic schedule with a million things to do. However, having a disability adds an extra layer to the juggling performance. In fact, I think life with SMA best resembles the incomparable skywalk tightrope act.
Now, I realize the concept of a power wheelchair user on a tightrope is as surreal as one of Dalí’s paintings, but it actually connects to so many themes of a disabled person’s lived experience.
Tightrope walkers perform at astonishing heights, using a tremendous amount of skill and determination to become a master acrobat. From the very first step on the tightrope, there can never be a question about the success of the passage, for the stakes are too high to fail. There can be no turning back and there is no giving up.
Having a disability like SMA makes life feel precarious at best and frightening at worst. Thus, I’ve had to develop a certain comfort level with making a home in the heights of uncertainty. I wish I could say I’ve mastered this balancing act 100% of the time, but it takes a lot of mental strength to be comfortable in my own skin even though my body is sometimes in extreme pain and discomfort.
Yes, I have a wonderful support system but being disabled is ultimately a solo journey. I am responsible for achieving balance in my life because without it, I would plummet to the depths with no way to recover. With minimal margin for error, I desperately rely on a balance pole of coping mechanisms to get through each day. While these strategies aren’t even altogether healthy, I know it’s impossible to go through this journey freehand.
If I sway too far to the left, I will be swallowed by despair; too far to the right and I will let resentment of other people’s lives distract me from my journey. No. I have to keep my eyes focused down the centre of my own life.
However, this intense focus means living in a heightened state of adrenaline and cortisol that produces a frayed sense of reality. I can never let my guard down and I’m always waiting for the other shoe to drop.
Living atop the skyscrapers means always being prepared for the worst case scenario. While I realize there is a wide spectrum of disabilities and chronic illnesses, I would guess my fellow spoonies can relate to aspects of what I am describing. Whether it’s what society expects of us or what our life circumstances demands of us, we are probably all familiar with the pressures of having a disability:
Attend a never-ending barrage of medical appointments, tests, and treatments
Manage the high turnover of caregivers
Attempt to have a career despite intense fatigue and illness
Find affordable, accessible housing, which would be nice if it actually existed
Be every kind of advocate
Manage mental health issues because well, who wouldn’t be anxious with all this going on?
Besides the fact that this list is ridiculously overwhelming, what makes these pressures all the more difficult is to achieve everything with a can-do smile. Like a skywalk acrobat, I am acutely aware of what is at stake and what I am supposed to balance, and all without breaking a sweat. Not wanting to seem weak or in need of sympathy from non-disabled people, disabled people have to sometimes put on an act that we have it all under control. We got this.
We got this even when we experience the oppressive gravitational down force of systemic ableism.
We got this even when we are encounter the equally destabilizing updraft of expectations of what our lives should look like.
We got this even when we are met with nasty and unpredictable crosswinds of expensive medical equipment breaking down, illness flare ups, and hospital admissions.
We got this even when we feel as though we can’t go on.
As I reach the midway point of my life on the tightrope, I am hyper aware of the tunnel-vision and perseverance it takes to do something that defies all logic. It’s high stakes on a high-wire, with skyscrapers of obstacles soaring to the sky; skyscrapers specifically designed to make us feel small.
And yet, disabled people make it work. We are the ultimate tightrope performers, doing the seemingly impossible every day as we navigate the trek of life.
- Crissi xo