Back in the heady days of my early diagnosis I was reluctant to admit that there was anything wrong with me, or rather, anything different about me. I was paranoid that people would use my diagnosis as gossip, as something exciting and juicy to be shared and talked about and so I asked those close to me not to tell anyone outside of my family and friendship circles. There came a point, however, when it became impossible to hide it. As I limped and bumped and crashed my way along the corridors at work, I would get quizzical looks and the occasional smirk from colleagues who I knew well-ish, but not well enough to disclose my newfound suffering to.
When I caved in to using a crutch, around 3 months after d-day, I would walk with my head down to avoid any painful questions from people I passed. You see, when you are new to using a crutch or a wheelchair you are convinced that everyone’s attention is focused on you in much the same way that a pregnant woman might feel as though her bump has been clocked by every passer-by or a newly engaged person might assume that the sparkly new rock on their finger has caught everyone’s attention.
The fact that I was using, and still use, a crutch rather than a walking stick, speaks volumes about my longing to appear ‘normal’. A crutch, especially when used by a young person, connotes injury, mishap and temporary debilitation. The trouble with this is that people assume that it is safe to ask you about it; there is, in their mind, no risk of offending you or, indeed, of offending themselves. Long-term disability is still taboo, temporary injury is not. Naturally, people like to offer positivity and solutions, and when there are none to be found it stumps them and they invariably, and unknowingly, say the wrong thing.
After 11 years of living with this beast of a condition I am at ease with discussing my MS with anyone who wishes to discuss it. I can be frank about it. I can be candid. I can laugh. I’ve become accustomed to seeing strangers squirm when they ask me what I’ve done to my leg and I respond, “Oh, nothing – I’ve got MS”. I’m used to people staring at my wheelchair and wondering what’s wrong with me but being too scared, or too polite, to ask. And I’m used to friends desperately searching for the right words and the right tone whenever the topic of progression comes up. It doesn’t affect me in the way that it used to. I understand people’s need to say something positive. I’m guilty of it myself. But everyone means well. Everyone always means well.
It’s quite satisfying for me to think back on the many occasions when someone has asked me what is wrong with my leg and to see how far I’ve come. I no longer dread these conversations, I even enjoy them, it’s always amusing to see the look of horror on someone’s face when they realise that I haven’t fallen off a cliff and broken my leg, but that I actually have an incurable debilitating disease.
Strangers have approached me in lifts, in queues, at the checkout, at the playground, in an airport, in the hospital, on the school run and, most recently, in the soft play area of the dinosaur park. As I was innocently sitting and watching my child play, I could sense a man staring at me. It freaked me out at first but when he finally found the courage to speak it dawned on me that this was another kind stranger worrying about my injured leg. It transpired that his dad has MS and, sadly, is in a very bad way. This poor guy bumbled his way through the conversation making things worse, to his mind, with every word that he spoke. I lost count of how many times he said ‘sorry’ – he had nothing reassuring or positive to say and I could see that he was so desperate to offer some hope to me. I laughed it off and hopefully made him feel better as we parted ways with a polite, if awkward, cheerio.
It’s fascinating to observe the different ways in which different people react to disability. Being someone who swings between using a wheelchair, using a crutch or, if the conditions allow, using nothing, I can confidently say that people treat a person with a visible disability differently. When I’m in my wheelchair sea’s part for me – people insist that I skip ahead of them in queues, they keep greater eye contact than is necessary (or comfortable), and they do everything in their power to let me know that I am special. Using a crutch doesn’t elicit the same levels of care, after all, it is assumed that I’ve simply twisted my ankle or some such nonsense. And when I use nothing, I am treated as wonderfully or as poorly as any other normal person.
Huh, it does make you think.