The Invisible Injury
The theme for International Day for People with Disabilities 2020 is ‘Not all Disabilities are Visible’ which focuses on spreading awareness and understanding of disabilities that are not immediately apparent.
In this article from our magazine Forward, Ruth Earley, co-founder of the popular This is Spinal Crap podcast, talks about being what she terms a ‘wonky walker’ and the no-man’s land she inhabits as a result.
THE INVISIBLE INJURY
In April 2018, I woke up one Monday morning with an SCI. It was one of those freak things, an acute case of Cauda Equina Syndrome that became really dramatic, really fast. In the early days of emergency surgeries and heart- breaking prognoses, I just had a sense of everything spiralling out of control. I was paralysed at T11. I was told it was unlikely I’d walk again. In one day, I lost the use of my legs, my job, my home, all of my personal bodily functions and a whole lot of hope.
Fast forward two years and the world I inhabit is an entirely different place. I’m now entrenched in the eye-opening world of disability and learning to live life very differently from before. It turns out that I did walk again, albeit aided. But every time I stand up, I am filled with an immense sense of gratitude. My time in rehab at the London Spinal Cord Injury Centre started me on the journey from wheelchair to walking frame, then crutches to stick.
Through numerous hospitalisations during those two years I learned to become stronger, to push myself harder and to improve my mobility. I am now what I call a ‘wonky walker’.
But mobility is just one aspect of SCI. And it comes at a price. The first day that I walked in parallel bars at the Spinal Unit, a fellow patient told me that I didn’t have a ‘real’ SCI. I’ve heard versions of this same sentiment a hundred times since. Being on your feet is a small miracle, but it makes you invisible. It places you in a kind of limbo where people assume that you’re ‘better now’.
I’m not ‘better now’. In fact, there’s a whole host of difficulties that are specific to people with SCIs who can walk. Which is why many choose to use a wheelchair – as I do from time to time. Being on my feet for any length of time is exhausting. I’ve had periods where I’ve had days of bed rest following a seemingly gentle walk. I regularly suffer severe bouts of neuropathic pain that make me want to scream and cry and throw heavy objects through windows. I struggle with bladder and bowel just the same as someone in a chair and, as for mood, well … that’s been a whole rollercoaster in itself.
Worst of all, the difficulty with walking that ails me the most is guilt. The knowledge that I’m on my feet when so many of my fellow SCI warriors may never be makes me want to keep silent about my injury. I feel ‘not disabled enough’. And among my able-bodied friends and family, I feel ‘not able enough’. It’s a no- man’s-land. It makes you useless and isolated.
Saying that, I haven’t kept silent about my injury. In April 2019, I attended Wheelpower’s Inter Spinal Unit Games where our little team of six former patients at the London Spinal Cord Injury Centre became friends. Shortly afterwards, we started the podcast ‘This is Spinal Crap’. It’s a podcast about living well with SCI – any SCI. We don’t discriminate.Starting the podcast has been the single most positive thing I could have done for my mental wellbeing and recovery. Through discussions we’ve had as a team and with the guests who’ve come on the show, I’ve learned so much about the entire SCI spectrum. We’ve shared highs and lows, observations and opinions. For me, meeting other walkers and learning that it’s OK to be back on my feet was just the injection I needed to chip away at that huge cloud of guilt that surrounded me.
My two year ‘injurversary’ came and went without much fanfare. It wasn’t the dead end I had built it up to be. In the early days you are told all the time that in two years’ time you’ll plateau, that you’ll have made the recovery you’re going to make. I don’t believe a word of it. I’ll continue to do the work that has helped me come this far. I’ll continue to stand up for those of us who the world sees as ‘not disabled enough’ and I’ll continue to give a voice to people living with SCI.
“Starting the podcast has been the single most positive thing I could have done for my mental wellbeing and recovery.”
To listen to ‘This is Spinal Crap’, visit www.thisisspinalcrap.com