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The monster under the bed

29 July 2015

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





Comments (6)

What a great oulook! It's great that you are prepared for the worst BUT HOPE FOR THE BEST! A positive mindset is a beautiful thing because our thoughts are the ones that can torment us the most.

Thanks Rachael! I won't pretend that I haven't had my pessimistic moments - it can be really hard not to be scared for the future at times, can't it? - but as time has gone on I have realised how badly it spoils the things I CAN do if I spend my time worrying about whether or not they will still be possible tomorrow. So I make a determined effort to enjoy each day for what it is and concentrate on only worrying about things that I can actually control, if I must worry. It's an approach that definitely helps me enjoy my life when I get it right!

Losing memory and/cognition scares me the most! I wouldn't like living with decreased mobility or lots of pain but the memory/cognition would be the worst!!! Hoping for the best but preparing for the worst... Thank you for sharing.

Hi Val - thank you for joining in the conversation. I'm glad I'm not the only one who finds significant cognitive impairment one of the scariest possibilities among the things MS can cause! I had the privilege of meeting the CEO of MS Research Australia when he gave a talk a few months ago. He indicated that loss of mobility was the most feared aspect of MS, and I told him during the comment / question time that I thought he was mistaken in this and that cognitive issues are the greatest fear for many of us. I think a few people were surprised by my comment. It's good to have it confirmed that I'm not the only person with MS who values the thinking part of my life particularly highly! But as we all know, we don't get to choose the nature of our next lesion, and we probably don't know until it happens how we will deal with the next challenge in life - so I will simply join you in hoping for the best for both of us!