….A diagnosis! The ENT letter arrived, and now I can share with you, my Dear Public, what was found (or not, as the case may be) in my ear! I have Superior Semicircular Ear Canal Dehiscence! The Amalgam of 5 Percents* rolls on! This means I have a bit of bone missing in my head, a bit that covers, protects and allows to function, my Superior Semicircular Canal. There’s not much treatment – a rarely successful operation. But I have the letter, and proof. Anyone with an invisible Disability, with Chronic Illness, will understand the power of this letter and why this post is happy in tone, even though it condemns me to a life of not hearing properly, getting dizzy and generally perceiving the world askew.
Information on SSCD (exciting new acronym!): http://vestibular.org/superior-canal-dehiscence-scd
I want to make it clear, I am not happy at having this. I don’t enjoy collecting things that are wrong with me – I really don’t. It affects me 24/7. I’m just glad to get my letter, because the letter will go toward the ESA and at the moment that is important to me. I’ve just spent 2 days sleeping on the kitchen floor because the heat of the day has stopped my body from functioning. Yesterday I had the shakes so badly in my arms, neck and legs that I could not write. It’s not a joyful situation. But having a label, at the moment, is. When next in a Pit of Despond, I will cry about this and want to be ‘whole’, ‘normal’ and not ‘broken’. I will be glad my Mum is not around to see me, but be despairing of her lack, for she can’t comfort me and tell me I’m still a valuable sack of meat.
*When I was about 22 one of the many Medical Specialists I saw, a kind ENT man in Harley St. told me I was ‘An Amalgam of 5 Percents’ because I had so many conditions that ‘only affect 5% of the population’. Interesting developments in medical science have changed that – more people have been diagnosed with the Genetic problems (EDS) I have, the spinal problems (Scoliosis) and the earlier hearing problems (Tinnitus) – so now it would be ‘Amalgam of 10-15 Percents’ IF I had not just gained SSCD, which affects 0.1% of the population, booom, down go the stats.
Joshua Reynolds: ‘Self Portrait as a Deaf Man’ c.1775. Oil on Canvas – Tate Britain. Copyright Tate Britain.