The monster under the bed

What’s the thing you’re most scared MS will do to you?

Children ask the most amazing questions!  That one came from a boy of about six who was sitting up the back when I went to the local primary school to tell the children about the MS Readathon.  I had just finished explaining to them that every case of MS is different, and almost any symptom can occur from MS, due to the amazing complexity of the nervous system.  I’d told them about my eyesight problems, about friends who can no longer walk, about finding stairs tricky when my balance is off, and about the intractable pain that some people live with.  I’d tried to balance the scary stuff with stories of how quickly flares usually improve for me if I go to the hospital and get IV steroids, how they could help by contributing and raising money for the cause, and how comforting I find having my cat sleep on my bed beside me if I’m not well.  Then I told them they could ask anything they liked and I’d do my best to give them honest answers.

The very first hand that went up came from the boy who wanted to know “What’s the thing you’re most scared MS will do to you?”

I’d promised them honesty, so I thought for a moment about what really is the worst thing that could happen to me if I had a bad flare tomorrow.  Could I maintain my independence if I were blind, or unable to walk, or if every waking moment were filled with pain?  All very confronting things to consider!  But – perhaps because I haven’t experienced any of those realities – those are not my greatest fears.  So I told him, truthfully “I think the scariest thing for me would be if MS took away my memory and ability to think clearly.  Life would be hard if it made me blind, or stopped me from walking, but I think I could learn to live with those things if I had to.  But if I couldn’t think properly and remember things, I might not be able to stay living in my house and I certainly couldn’t be a doctor any more.”

It’s an interesting question whether I’d really find significant cognitive impairment harder to deal with than a major disability of another sort. Probably some of you can provide a far more experienced perspective on which “MS hurdles” are actually the hardest ones to jump over!  For me, the critical things is that I don’t get to choose what will happen next with my MS, so worrying about the possibilities is simply not a productive use of my time or energy.  I aim to focus on things that are within my control. So I try to lead a healthy lifestyle, take my prescribed treatments reliably, and do my best not to tarnish today with fears that may never be realised.  The idea of “hope for the best, but prepare for the worst” is one I like.  So I have a Medical Power of Attorney in place, just in case I ever can’t make my own decisions.  And I’ve set up my home so it won’t need too much modification if my mobility declines. But for now, I live each day as well as I am able and I try hard not to let the inevitable moments of fear intrude for one second longer than I can help.

When I was first trying to get my head around the fact I have MS, there’s no question I was scared about what was going to happen to my mobility.  A big part of this fear, no doubt, was that a neurologist told me I showed every sign of being someone who was likely to have problems in this area early, as I mentioned in an earlier post. But today this is no longer something I worry so much about.  Partly because I’ve had years and years without major mobility issues being the sort of problem I get, and partly because I now believe I could probably learn to live OK with impaired mobility. I hope I could, anyway. I wouldn’t enjoy having to deal with this, but I have enough friends who use canes or walkers or wheels to know that it is possible to have a life without being able to walk unaided. When MS was a new thing in my life, mobility issues were a bit of a “monster under the bed”.  These days, thanks to the example of many extraordinary friends who have dealt graciously with mobility challenges, it’s as if someone has shone a torch under my bed and told me to come up with something else to worry about!  I don’t know if I will be as gracious or as determined if a walking aid or a set of wheels is in my future – but I’ll always have the inspiration of others who have been there and enjoyed meaningful lives.

The Unaffected One

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