I am going to see my neurologist (brain doctor ) on Wednesday 23rd October, regarding treatment for my condition. I am hoping to receive some very exciting news. But I can’t help but think that surely if it was important, and she had positive news, she would’ve moved the appointment forward? Everyday day counts, or at least everyday counts in my mind. I am six years too late for the most successful results of this treatment; so surely if it was good news my neurologist would want me starting ASAP, right?
It started three weeks ago, when the doctor in the UK, who specialises in my disease finally started moving forward, instead of chit chatting about possibilities. Sending a letter out to myself and my neurologist proposing what treatment he had in mind. Three weeks she knew of the idea for me to be given potential treatment.
I will be devastated if I have to hear no, that I won’t be allowed start treatment because the risks are too high. If the final answer is no, I will not give up without a fight. I have a few alternatives prepared for if the answer is no. It’s speaking out and giving the doctor my alternative suggestions which will be the challenge. Will I be able to manage to give my disapproval of the decision, keeping my feelings composed to suggest an alternative treatment? Which I have been waiting for, for seven years.
The thing with me is, I’m not able to speak when I get upset. I have been holding in too much pain, saying “everything is alright”, even when it’s not.
Not communicating how angry, sad, confused, mournful etc. that I am now in a wheelchair, at the age of 20 because some fucked up disease thought it’d be ‘fun’ to cause damage to my brain . After 12 years of regularity, 12 years of independence, followed by an extra 5 years of struggle to still be a regular kid. The pain has built up inside me and all just comes flooding out at the sign of upset.
I was talking to one of my college friends about this, who asked me “is your illness permanent?”; to which I replied, “hopefully not”, my main goal is not be dependent on a wheelchair for mobility. To no longer have to worry about the judgements and witness presumptions by others that, ‘because I need an aid to travel, I must be mentally incapable of communication’ . If that still means I have to use crutches while walking, so be it; anything is better than a wheelchair at this point.
This disease has been the cause of my pain; I don’t want it to cause me continuous suffering through fear of breaking down.