(cheesiest blog title ever.. don’t worry i groaned at it myself when i wrote it)
Here’s the thing. As most of you would know I am 28 years old, a writer, performer, community activist, youth advocate, feminist, sexual assault survivor and many other things too. There are so many markers for self definition they are most likely too numerous to list here.
But what a lot of you wouldn’t know is that I am losing my sight. I have selectively told people and then decided to go public on the internet. I decided to do this because I don’t consider disability to be a great source of stigma or shame and honestly, i owe it to the people around me to be upfront.
I have a benign optic nerve glioma. I have had it for the better part of almost two months and it is completely inoperable because of significant vision loss and associated risks. I have elected to go on a drug trial to shrink the tumour but there isn’t anything that can really save my sight. In the next 18-24 months I will be completely blind. Optic field tests put my right eye at 14/20 and my left at 16/20 and despite the efficacy of the trialled drug that is expected to fall by the end of the year.
The past few weeks have been a blur of neurosurgeons, oncologists, radiotherapists and people deciding what to do with my once again problematic body. I am significantly impaired by Atvistan, the trialled drug i’m on, with nausea vomiting and hair loss.
(about to shave the mop off as soon as this is written)
am i scared?
I keep an outward sense of optimism, a sense of being able to weather the storm, cope with anything that comes my way. But honestly, if someone were to say to me i’d wake up tomorrow and be completely sighted and without tumor growth, it’d make me more happy than any drug or surgery or therapy. I am wracked with feelings of uncertainty and having to sit back and recieve news, and treatment. Not being in control of my body frightens the hell out of me. It brings up old wounds that even though they have nothing to do with the physical process of blindness are related to the incredible sense of helplessness i feel most of the time and the sense of helplessness that i grew up with. I hate being told there is nothing we can do, because there always has to be something. Possibility is how I’ve chosen to live life, and to be told that possibility doesn’t apply here, that we are in territory that doesn’t deal with possible, is completely destroying.
However, I think what this has done has made me more mindful. I’ve begun to actually look at things, physically and emotionally. To take in my surroundings, because i know i will not be able to soon. We all have things that we see, both with eyes and with our hearts. I hope my eyes, when they fail, will be replaced by the vision of my heart. (sorry, turning on the cheese again, but i’m in that kinda mood) I am now starting to realize what a beautiful city I live in. I am lucky to have had 2 wonderful years of seeing it all. I hope as i start to be unable to see it it will still remain beautiful and I uncover that beauty in different ways.
in closing, i guess for you all now, the most important thing to remember is that I will change. But i still remain a person of integrity, dignity and value. That will never change.