“What is that which has one voice and yet becomes four-footed and two-footed and three-footed?”
This summer was challenging. In April I started relapsing, my fatigue becoming overwhelming and my walking getting markedly worse. I tried high-dose steroids to treat the relapse for the first time, but they didn’t make any difference to my symptoms and the withdrawal when I came off them was horrendous. Then the unusually hot summer wiped me out completely. A rise in body temperature causes significant worsening in symptoms for most people with MS, so the symptoms I was experiencing became even more intense. Until the first week of September, when it finally cooled down, I was pretty much a prisoner in my own home, physically and mentally exhausted, a stumbling, wobbling, slurring mess.
I stopped work in April, hoping that a couple of weeks rest would mean the relapse would abate, but I’ve only been able to start thinking about going back recently. Oh, and to add to that, because it’s evident that Tecfidera wasn’t working for me I’ve chosen to have Lemtrada instead. Before I can have it, though, my white blood cells need to recover to a normal level (they’ve been suppressed by Tecfidera), and so far they’ve remained low. So it’s been a strange summer, feeling pretty unwell and in a state of limbo, travelling every few weeks to King’s College Hospital for blood tests to check whether the Lemtrada treatment can go ahead, waiting hopefully for the results and then having my hopes dashed every time.
Because my walking has been so much worse, I’ve had to give in and start using a walking stick. So it was timely when one day this summer, my son came home from school and asked me ‘What creature has four legs in the morning, two legs at lunchtime and three legs in the evening?’ Apparently, his year one class had been brushing up on their Ancient Greek history, for this is the riddle of the Sphinx. The story goes that, the Sphinx guarded the entrance to the ancient city of Thebes, and asked the riddle of everyone who passed her, killing and devouring everyone that couldn’t answer it. Finally, Oedipus came up with the answer: Man, who crawls on all fours as a baby, walks on two legs as an adult, and then uses a stick in old age.
In the state of denial where I’ve been since I was diagnosed, using a stick was not going to be an option that I was ever going to entertain. For me, having a stick was the first tentative step onto a slippery slope, that would lead inevitably to being confined to a wheelchair – and that prospect is one I’ve just not allowed myself to imagine for a second. I was determined that I wouldn’t have to rely on aids to help me walk, that I’d do my neurophysiotherapy exercises, take my drugs and stay just as mobile as I am forever.
The thing is, I fall all the time, I’ve badly broken my little finger so it’s permanently deformed and may need surgery in the future, and every journey I take has to be meticulously planned so that I don’t have to walk further than my weak left leg allows me. As well as that, I worry that I look drunk when I’m stumbling down the street, and my ‘Please Offer Me a Seat’ badge is routinely ignored meaning I have to stand on public transport – painful and tiring. I had finally to accept that a stick was the only option to help me retain some independence and keep me safe. I dithered for some time, browsing the options on Amazon, and finally chose a collapsible stick with good reviews. I used it every time I walked outside over the summer, and it did help me to walk further and feel less scared of falling, but the greatest change I’ve noticed is in the way I’m perceived by other people. They notice me more, and I see sympathy in their eyes. They jump out of my way in the street, and I’m almost always offered a seat on the bus. Almost always, because evidently some people don’t believe that even if you are visibly disabled you deserve to sit down.
So I’m the Sphinx’s three-legged creature all of a sudden, and it’s been really difficult to accept this premature shift into the third age of Man. I’ve come to understand that I now have a visible and constant indicator of the ways in which I’m not the same as the majority of able-bodied people, and that comes with a host of unconscious assumptions about me. My stick is a visible prop that makes me abnormal in the eyes of other people. A constant and obvious sign of how my body has gone wrong. I’m grateful for sympathy, and for people offering me help, and at times I’ve felt close to tears at the kindness towards me of absolute strangers. But I can’t pretend I’m just like everyone else now, and that is so hard to take.