As I mentioned in my last post, I have recently started Ocrelizumab infusions. After a year of lockdown, this has involved a couple of trips to the city for long days in hospital hooked to a drip and, face-to-face interaction with other living and breathing human beings outside of the family bubble.
I have noticed on these trips that the more powerful disease modifying therapies, such as Ocrelizumab and Alemtuzumab, seem to be offered to MSers as a first line of defence instead of the relatively ineffective ones – the beta interferons and copaxones (the ones I’ve been ticking over on for all these years). I‘m a little bit rueful that it took a relapse to rob me of some mobility and balance, before the possibility of changing medication presented itself. It’s no-one’s fault though, it’s just the changing medication landscape and the fact that the old meds did a pretty good job at keeping relapses and disability at bay for over a decade. I’ve just swapped my hand grenades for napalm, that’s all.
The consequence of this is that when I arrived at the front door of the neuro- ward, those waiting for their infusions seemed to be newly diagnosed youngsters – a term that, in my fiftieth year, I now bestow on anyone in their thirties. One of those waiting 30-somethings had instantly clocked my stick and sprang forward in his chair to offer it to me.
I was taken aback by this as this is the first time anyone has ever done this for me, and I tend to forget about the stick and what it might represent after a while. As a walking tripod I’m an expert wall-leaner, so I was more than happy to do some leaning and I politely declined the offer, but a door had opened; the gesture was a friendly supportive one, and it broke the ice nicely to talk about why we were both there. We made a connection.
I see the stick as an overwhelmingly positive thing anyway – a force for good – and when it comes to other MSers it’s a great way of connecting and breaking down barriers. When I decided to take the plunge and buy it, just over a year ago, I had been initially reluctant to be seen out and about with it, but it soon becomes second nature – almost an extension of yourself – and I even use it for walking to the end of the garden and back without a second thought. It’s not as cute and full of personality and intelligence as an assistance dog, perhaps, but it’s still an invaluable tool in my arsenal. I am mobility-enabled now and a whole new landscape to trample across has opened up in front of me.
The stick represents so much. An able-bodied person might assume a negative viewpoint, whether they mean to or not, seeing me as a victim (and I’ve had one or two tactless comments from people I know), whereas a newly diagnosed MSer might visualise themselves crossing this particular bridge at some point in the future.
I used to share a house with a philosophy graduate who once postulated there was no such thing as altruism – everyone has an agenda behind their actions whether they realise it or not, so I’m just going to project a bit and hazard a guess at his subconscious motives. I wonder if this offer of a seat to a bloke with a stick was to appease the mobility gods or maybe he was cementing his perceptions (in his newly-diagnosed way) of being part of the ‘MS family’. He may also have been understandably nervous about attending hospital for what is essentially a big deal and needed the connection for reassurance. If I’d wanted the sit-down, I would have accepted his offer, but I think it was good that I refused.
It was good because it conveyed the message, ‘even though I have a stick, I’m still OK. I’ve had all kinds of crap to deal with and I can still manage. I’m still strong. I’m still a cool dude in my WFMU T-shirt. I rock the stick. I’m still me. Watch how well I can lean on this wall.’ But more importantly, it also says: ‘You could be me. You will also be OK. You will manage too’.
As well as completing my first infusion, being offered a seat is also a major milestone on my MS journey – wow, two milestones in one day! I hate accepting assistance from anyone, even if it’s for something I wouldn’t be able to do in a month of Sundays, like I did when a couple of guys I knew shifted a washing machine for me recently. To do so reminds me of what I should have been able to achieve had I not been dealt the blow of this disease. Maybe I also beat myself up a bit for not being paralympian in my efforts to look after myself. It has to be a concept that I’m going to have to make peace with if I’m to do myself any favours growing into my fifties and beyond.
My mum always brought me up to offer my seat on the bus to anyone who needed it more than me. I thought I’d feel like an old man myself if I were ever to be offered a seat, particularly with a landmark birthday looming. In the end I actually felt a lot of acceptance: that of being accepted by other MSers on a level playing field – always a good thing; of me accepting the stick as an extension of myself with its positive vibes and its marvellous powers, but also, most importantly, me coming to terms with being offered and accepting help from others.