To my fifteen-year-old self

Part of the 'Letters to my Former Self' Series

Trigger warning: discussion of death

It is September the thirtieth, 2013. You had a lumbar puncture last week which took the doctors five attempts, with no anaesthetic, and you’re in so much pain that you’re not even sure how you’re going to make the journey to the Birmingham Children’s to hear your diagnosis. But you will.

Last week you were an inpatient in the hospital for the first time. You went from being this normal, healthy teenager, to not being able to walk, more or less overnight. You were having conversations which no teenager, in my opinion, should have to have. You’re telling your mother what you want to happen if you have cancer, or if you have Motor Neurone Disease. You’re mentally planning the goodbyes you are going to say to your friends, just in case.

One of the doctors told you that you’re not dying, whilst they put a cannula in your hand and run this medication into you, without telling you what it is or what it is for. You are scared and confused. I think this is a fairly natural response. Good news, though! Whatever this mystery illness is, it’s not going to kill you. And you’re on your way to find out your fate now.

You will grow to love your paediatric neurologist. Even though she seemed cold at first. Even though she didn’t tell you your diagnosis; she told your parents - who already knew, as they had been told whilst you were in hospital last week. This will never seem fair to you, because it’s your life and your disease, right? One thing you will learn, though, is that anger rarely gets you very far.

Your relationship with your family will never be quite the same again. You are all grieving in your own way. You are wondering if you are ever going to be able to have a family of your own one day. Would that be selfish of you? Will you be physically able to? When will you never be able to walk again? Will a man even want to be with you and have a family with you, when there is so much uncertainty in your future?

I don’t have all the answers, darling girl, but I do know this. Nearly seven years to the day later, I am still on my feet. You made it through school, you struggled through Sixth Form, you left home, and now you are in your final year of university. You’re also working part time. You’re doing OK.

You will learn quite how capable humans around you are at being kind. You will complain about your bad luck, but you will eventually roll your sleeves up and get on with it, because one thing you never lost is your work ethic. You haven’t learned to love yourself yet, but you can hold your head up and say that you dealt with your diagnosis fairly well, despite it coming seemingly out of the blue, and at a younger age than anyone could have expected.

Sometimes your determination will get the better of you, and you will push yourself too hard before you learn to pace yourself. Spoon Theory will be your friend. Eventually you’ll get to grips with your limits, and learn to respect them. Whether everyone else will or not is out of your control. The best thing you can do is communicate your needs and capabilities.

Perhaps in another seven years, I will be able to tell you that I love you. But for now, happy seven year MS-versary.

With love,

Your 22-year-old self