Holly, who works as a school advocate at Back Up, has an incomplete spinal cord injury. She wants to share her experience of the impact and symptoms (and often hidden ones) that often come along with having an incomplete injury.
I had my accident in March 2014, after a rather tumultuous year dealing with my mental health, and I can’t say the two weren’t linked. I’d developed a vocal disorder and spent three months completely mute with a not very good prognosis as a result. So, needless to say, that I had already been introduced to the world of disability, especially hidden disability, before I’d even broken my neck.
It was evident from early on that I would regain my ability to walk (as I have central cord compression, which mainly effects the torso and arms), and I just assumed that everything would be back to ‘normal’ when it happened. But, of course, everyone is different and has their own unique take on SCI, with a combination of symptoms that can stay or go, so I was in for a surprise. I can only tell you about me, but I hope it sheds some light on what the reality can be, beneath a seemingly ‘normal’ exterior.
1. Fluctuating nature of it
So for example, last Saturday, I wasn't able to write in the morning, but then later was able to because my hand muscles had become a bit more coordinated. When this comes to mobility or maintaining posture, it's hit and miss. Many people can't get their heads around this. I spend some mornings floundering around in bed trying to get my muscles coordinated enough to stand up, and others, I jump up and do a 3 hour hike through the countryside.
2. Survivor Guilt (walker guilt)
This is a pretty big deal, especially for those who go through rehab and find themselves moving past their peers. It was excruciating to start walking around the ward, but I knew I had to. I’m told that the feelings of guilt and ‘why me?’ can take years to go, so I am working on that.
Some of those who can walk, or are very incomplete, suffer from fatigue, which is debilitating itself. For me, it took on the nature of Chronic Fatigue Syndrome
, which means that participating in sport, socialising and working was nearly impossible. Even engaging in conversation, or watching a programme I had not seen before, exhausted me to the point of tears. It's a whole life management system itself. Luckily, it's subsiding and I’m now able to plan my day, week and life with more certainty. I’m hoping to participate in one of Back Up’s multi activity courses
, now I can keep up with the pace.
4. The hidden nature of it
'You look normal'... You look less disabled now’. I heard these two sentences before lunch today and they are becoming more common as my rehab progresses. It is a bit shocking each time and comes from a range of people, especially from friends who are in wheelchairs themselves. It is a strange thing having a hidden disability. I can go incognito and people don’t necessarily need to know until it crops up, but it does highlight how much our society assumes all disability is visible. Many of my friends who have ME (Myalgic Encephalomyelitis
, also known as chronic fatigue syndrome) say they wear tubi grips so people take them seriously. They worry that people think they are making it up a lot of the time because there are no visual clues, so they hide it and carry on until they suffer physically. I also wore my neck brace in crowded areas to begin with when I didn’t need to. But, after suffering so much from not being vocal enough about my mental health, I don’t shy away from making my position perfectly clear now. I think I’m almost a little too vocal now, but it does mean that I’m not adapting myself to suit other people’s preconceptions of what disability is.
5. 'You're walking, so you are completely alright now then'
My family and I get this all the time. It seems that SCI has been sold as a condition which just means you can't move your limbs. The very nature of the word 'tetraplegia' doesn't help as it just means 'four limbs' and every picture, story or symbol relating to it, involves a wheelchair. People ask after me, and when they hear that I can walk, just say ‘oh great’ and carry on to something else. I don’t blame them, because they have no idea about all the ‘other stuff’ that goes with a cervical injury, like nerve pain, spasms, tone and bladder and bowel issues, which I still have.
Holly has also created a spoken word piece called ‘Walking Contradiction’ which you can watch here.