Someone once told me of their sadness at the fact they now had to take a shopping list to the supermarket, otherwise they were guaranteed to forget something. I’ll be blunt; I didn’t know how to respond. My heart was filled with sorrow for this person, not because of their list requirement, but because of the narrative they were creating for themselves around it. I remember thinking something along the lines of; “Gosh, you’re really going to struggle as your MS progresses if this is upsetting for you”.
I understand it though, I really do. I understand the unpicking of every little thing your body does or doesn’t do; the microscopic examination of movement, of mental acuity, of speed, of sensation. It comes with the MS territory; but not only is it usually a draining waste of time, I’ve also come to realise that it is often based on complete fallacy.
I think that when you live with an illness like MS, your mental construct of a “normal”, “healthy” human body can become distorted and idealised. I think you start to forget that the human body, whether chronically ill or otherwise, is not infallible. I think you sometimes fail to remember that a normal part of the human condition involves minor memory lapses, stumbling, occasional clumsiness, the odd fall, a broken glass here or there, aches and pains, exhaustion. We beat ourselves up for our bodies’ failings when we need a day or two in bed, while forgetting that most people on the planet have days when they just. Cannot. Be. Arsed. Moving.
Of course MS is so much more than this, but my point is that when we start to pay attention to everything our body does and immediately attribute it to MS, we fail to allow any space, any leeway, for what could simply be part of living in our fallible Earth-suits. We do ourselves and our bodies a huge disservice, and make something that is already difficult, ten times harder. We stop taking things as they are in the present, and create a comparative narrative in our minds which projects far into a bleak future and reaches back into a misremembered past.
When we compare our MS-body to this false memory, or false notion of almost machine-like function, we will consistently be falling far short of personal expectation. We will consistently be grieving for a utopian ideal; an MS-free body that does not exist.
I don’t know many people who could go to the supermarket without a list and not arrive home to realise they’d forgotten something. Certainly no one who has anything else going on in their life.
I don’t compare myself to a pre-MS, or a what-if-I-didn’t-have-MS body, because I can neither remember nor care to spend my time attempting to imagine. I do, however, subconsciously weave myself a merry little story nonetheless.
The year is 2017 – eight years post-diagnosis, and I am probably not far off the fittest I have ever been. It’s a Saturday afternoon in June, or it could be July, and I’m on my way home after summitting Ben Ledi. Once home I grab a bite to eat, jump in the shower, and get ready for work. I’m working behind the bar of a golf club at this point in my personal history; long but usually quiet shifts. This particular Saturday, however, I’m working an event; a busy, physical, sweaty, on-my-feet-for-8-hours event. This day was a one-off, and I remember being proud of my accomplishment, telling people there that I’d summitted a mountain only hours earlier. (People who had no idea I have MS, and who were much less impressed than I’d anticipated). Anyway, despite this day being an exception to the rule, this is the day I remember. This is the day I mentally return to when I think about all that I was able to do. This is the day, the one day out of 365, that epitomises my body’s ability of 2017. This is the day I compare today’s body to, and while this day did happen, the narrative I’ve fabricated around it is not wholly representative of the full picture.
When I look back on that period of my life, of my health, I recall the hiking, the Munro-climbing, the summitting of Ben Nevis, the gym-going, the socialising, and the physical nature of the job I was doing. These are the things I want to remember, but there is a danger and a cruelty in the story that I tell myself; in the half-truths and the omissions I make. When I compare my body of today to the body of my highlights-reel, I will always fall so much further in my mind than I necessarily have done in reality.
When I look back on that period of my life, of my health, I don’t recall the multiple times I stood halfway up a hill in tears, or the many occasions we turned back because my legs were too heavy, or shaking too aggressively, or too painful to continue. I don’t remember all the days I spent in bed after finishing a late shift, or staying out with friends until the early hours.
So now when I compare my sometimes laboured strolls through the local park with the mountains of days of yore (days that will come again, you mark my stubborn words), and analyse how much weaker my hands are today than they might have been yesterday, all I am really doing is holding my body to a much higher standard than anyone I know who doesn’t have MS, relatively speaking. A brutal unfairness I’ve only recently realised I inflict upon myself. I either push my body to the very edges of it’s capabilities, which comes with consequences, or don’t push it enough at all – believing that because I am no longer as capable then I am no longer capable full stop. An approach which also has its consequences. I am striving to measure my function against a utopian version of the human body, of my human body, and I am failing day after day after day.
Yes I am less able than I once was, yes my MS is progressing – but maybe if I stop to take a breath, to pay attention to what my body can still do without picking it apart, I’ll realise that things aren’t quite so bad as I think they are, and I’ll start to simply live again.