Anyone who has grown up with male siblings, I have two brothers, knows that any phrase starting with, “Hold this…”, doesn’t usually end well. It is up there with the truism that most teenage boy’s trips to A+E are usually prefaced with a yell of, “Hey everyone, watch this.”
Getting diagnosed with MS felt just like being passed an unidentified but definitely suspicious device by someone far more trustworthy than my brother. Based on that trust I took it, unquestioningly. Bad idea. Greeks bearing gifts and all that… You gave it a metaphorical shake, heard ticking, saw the faces of the others around you and realised that this was not a good thing. No one was sure what was going to happen, but you were certain from the looks that nothing good was going to come of it. It was more a question of If rather than When it was going to explode.
This is a Multiple Sclerosis diagnosis. There are no backsies. This unexploded brain bomb is yours for life and at no point can you hand back this uninvited contribution to your self. From that moment on you are no longer just You but You and MS, and what happens from that moment onwards is that as well as dealing with life you are now committed to trying to manage this unpredictable addition of an unexploded brain bomb. Oh, and by the way, just en passant, it is rare that other people can even see this new addition to You. Your new ‘forever’ ticking bomb.
I cannot emphasise enough that an MS diagnosis is made so much worse by thes unpredictability and it is the real mental grinder for me. I have had MS for 27 years now and not a day goes by without me wondering, several times a day, if this is the Last Good Day. You know it is ticking. You know it is going to go off. You know it won’t kill you. And You know it will just make your life immeasurably worse.
Good Day, by the way, is a relative term. With MS you start to judge yourself against what you know can happen when the bomb decides to go off in your brain. Over time the things that you considered to be a normal state of affairs are just concepts in the rearview mirror. For example, deterioration of certain eyesight and balance functions mean I can no longer safely cycle, ski, ride motorbikes, play squash, or shoot. It is small but it is enough to stop me. I try not to hate the MS and I try not to dwell on my many losses but I can never forget that they are the fault of my MS.
No one sees me not doing those things. They see me walking a lot and think to themselves that I must be fine. I know it is displacement to walk a lot and I am fortunate to be able to do that (with poles, obvs). I love walking but I only got into it when I lost the ability to do the things that were my passions. The cheery optimist in me tries to focus on the benefits but the nihilistic realist in me can never forget what brought on this state of affairs.
Nihilistic I may be but I decline to get annoyed that people don’t take into account my hidden illness. The clue is in the word hidden. The vast majority of folks don’t want to hurt, offend, upset, or discriminate and the vast majority of healthy people are made a little bit uncomfortable, as at some level they are forced, even for a moment, to consider their own health and ability. To get and remain annoyed with perceived insensitivities entails working up some venomous thoughts and retaining them, and that injures me far more than anyone else.
Call me selfish but I am increasingly in life for the mental health of No.1. It is harsh, I don’t like it but I need to ensure that I don’t upset this increasingly, and usually hidden, delicate balance. For this damn bomb could go off at any time.