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Dear CMT… A personal letter to my neuromuscular disease

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Dear CMT…

When you first came into my life it was hard.  Those were the darkest and longest two years of my life.  I got up every morning and got on with the day to day but inside I was crying.  The words progressive, neurological, hereditary, they shook me to my core.  Questions spiralled around my mind; Why me? What would it mean for the future? For my little boy? Would I be able to have more children? Would it be fair to try?

In the beginning you stole my career.  I couldn’t manage to work.  I would dislocate as the bed covers lightly brushed across my knee, I couldn’t walk on grass without falling and having more dislocations, you made family days out impossible, you made life hard.  You put me through two surgeries in a very short space of time and I was told that I would be a wheelchair user by my mid 30’s.  Not solely your fault I know now that EDS had a part to play too but I didn’t know her name so you bore the brunt.  It was tough.  I kept smiling on the outside but I hated you.

I realised at this point that I needed to learn from you so that’s what I started to do.

We explored all of the options for expanding our family, we thought about adoption, considered an egg donor but preimplantation genetic diagnosis was the closest that we came to seriously considering a plan other than Mother Nature but who are you to make our choice.

Two years after I first learnt your name our second baby came into the world, naturally.  We were happy.  I was meant to be a mother and it felt good.  You weren’t done though we’re you?  Making me go through major surgery with a young baby and a toddler.  This time I never let it get me down, you weren’t going to beat me anymore, I was going to win the fight.

So I researched all about you, I called your bluff.  I took advice from the experts and I got stronger physically.  I fell in love with Pilates.  Learnt to to love Physiotherapy and slowly began to walk a little every day.

Strength for me wasn’t just a physical pursuit it also came from within.  As time passed you have taught me so much.  You have taught me perseverance and patience, when things are tough they will improve.  You have taught me think out of the box and find solutions when problems present themselves, the rewards can be so much more when you work harder for something.  You have taught me to value what is dear to me and treasure it with all of my heart.  And you have taught me not to judge others because you never know their story.  You have made me a better person.

You weren’t done with us though we’re you? You didn’t want to give us a break? When our daughter was born it was obvious that you were part of her too.  We were formally told after she had to endure painful Nerve Conduction Studies just before she was two.  This time I didn’t hate you but you made me sad.  So sad that I couldn’t speak for a week, so sad that the food just went round and round in my mouth till I finally swallowed it down.  Why her?

Then EDS formally came into the picture too, I didn’t grieve this time, you had taught me to cope.  Our beautiful, determined daughter had taught us joy, we paint our own rainbows, we are a unit, strong, together and we are armed.

We understand what we are dealing with so we can prepare for her future.  We won’t let  you catch her unawares in her 20’s.  We can fight your symptoms because we know the damage that you can do first hand.  She will be her strongest best self.

You have taught me to fight for that care for her, for all of us, to negotiate, to say thank you when people do their jobs well, to be assertive when they don’t, to learn the law, our rights.  We are empowered.  I thank you for that.

You have also taught me to give back.  I have been on a journey through diagnosis to the point where I am now and I survived.  I think that I am in a much better place physically and mentally than before I ever knew your name, you have triggered that change in me.  I proved the doctors wrong and I walk every day around the park with the dog, I don’t need a wheelchair (although our daughter does), I am stronger.

Like any relationship I have got to know you and that has been key to living well with you in my life.  I have taken from you what I can in order to manage the bits of you that I cannot change.  I’m sure that you will always try to test the boundaries but I am prepared for the future.

Bring it on.

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