How’s my health?
I have been asked a bunch recently by friends I haven’t seen in a while:
‘How’s your health?’
The first few times someone asked me this question it felt very much like the question was innocuous but oddly specific, as though they’d asked ‘how’s your hair?’. Like my hair is fine, thanks… why?... is there something *wrong* with my hair? The question makes me weirdly self conscious. I start to check myself over, make sure everything is where I left it.
But the question is often asked with a sombre tone, the expectation clear that there is indeed something wrong with my health. The last time someone asked me, I brushed off the question with some confusion ‘oh uh… my health is good… thanks?’ but my conversational partner followed up in a way that revealed why people have been asking. She looked down at my form and said:
‘Well… there’s the wheelchair’
I honestly can’t believe that I hadn’t considered what now seems flabbergastingly obvious. The wheelchair is communicating something about my health to the people around me, people who care about me, and who, seeing it, are left with concerns. We’ve talked about ‘disabled time’ before, and to me I’ve been using a wheelchair for decades but of course in reality it has been only about 18 months in total. For many people who haven’t seen me recently the wheelchair will be entirely new, and the messages it communicates perhaps shocking to hear.
The question, then, is entirely understandable, communicating compassion and concern for my wellbeing and I appreciate it a great deal. I know I’m incredibly fortunate to have such wonderful people in my life.
But the question has also made me think quite hard about the answer.
‘How is my health?’
Honestly, my health is, in one sense, incredible. I’m as physically fit as I have ever been. Today I took my wheelchair, the Rocinante, to the most difficult hill I know, a hill we call ‘the widowmaker’. This hill is precisely three metres long. It’s tiny. But it is steep. Pushing up this little hill pushes my strength and my balance. The chair pulls into a wheelie with how steep I’m pushing, and so I have to bend my form far forward and as low as I can get, balancing the chair in a wheelie while pushing the rims to heave 100kg of weight uphill. Too little strength and I’ll start to roll backwards. Too much power and too little balance and I’ll tip. Today I was able to climb the widowmaker without hurting myself. I’m now frequently surprising myself with my feats of strength. I can pick up heavy objects, open jars, move refrigerators… you know… hero work.
But I also have an incurable neurodegenerative disease, MS. I have a constellation of lesions in my brain and spinal cord numerous enough to cause MRI machines to hand in their letters of resignation while I’m still being scanned. I’m immunosuppressed from the treatments, enough to widen the eyes of my neurologist more than once. I can’t walk far, I catheterise to pee, I take a bunch of medications to manage symptoms. In that sense my health is pretty terrible.
This is a huge juxtaposition, even something of a paradox. How can my health be both incredible and terrible simultaneously? This isn’t Schrodinger’s prognosis.
Maybe it is, though.
The question of my health is both about the current situation, how I feel in my body presently, and about what we can anticipate about the future. Presently, I feel amazing. I’m working out regularly in my chair. I feel accomplished. I feel strong. I’m not in any pain. I’m sleeping well, eating well. I have learned to live fully with the body that this disease has given me. I’m happy.
There is, however, no way to know about the future. I know that the MS will get worse, that the things I can do today, how I feel today, is no indication of the future. It was only a couple of years ago that I couldn’t sleep more than a few hours a night, only a few years ago that I was in nearly constant pain. So while I feel good right now we certainly can’t bank on that being the case in the future.
Of course, neither of these juxtaposed truths are reflected in the message communicated by my wheelchair. Media messaging invites us to see people who use wheelchairs as suffering, their lives are challenging, to live a life in a wheelchair is to live a marred life. When people see me in the wheelchair they assume, then, that my health must be pretty poor, that things are not good, that I’m in real trouble. I think that’s what invites the question. People are really worried about me. To be honest their concern really fills my heart.
So how is my health?
It’s everything at once. I’m a Human paradox. I’m in a wheelchair but I’m fit and strong. I have a neurological disease but I’m happy. My future is deeply uncertain but that keeps me located in the present.
It turns out the answer is much longer than the asker was perhaps prepared for. When I was last asked, all of these things flashed through my mind at once. But my thoughts settled on my experience of the present moment. I smiled.