Nessie's interview
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How did all start?
I was a school swimming champion and I kept getting ear infections. At 16 I had my first operation my ear.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed with cholesteatoma in 1998 when I finished university - I was 27
For what medical specialties have you been treated? What has been the most useful specialty for your?
Medical speciality? What's that? Ha! You are kidding, right?
What has been the most useful thing for you so far?
Realising that I am all alone on my cholesteatoma journey. Noone else cares, just you. Get on with it.
What have been your biggest difficulties?
The constant infections and temperatures - I wish it would stop!
How has your social and family environment reacted? Have your social or family relationships changed?
I've lost contact with pretty much everyone I ever knew - my family, friends... they get tired of you being sick and tired all the time.
What things have you stopped doing?
I struggle to drive. I am exhausted all the time and have to ration my time. I can't sleep at night. I used to volunteer for my local museum doing historical lectures - I used to do Living History for a reenactment society. I used to go camping, walking, riding, sailing, doing archery, target shooting, travelling abroad (flying is a no no with cholesteatoma and oh the sea sickness if you go by ship!); I used to write. I was a political campaigner, psychology lecturer. I could have been a University lecturer but I had to turn that down.
What do you think about the future?
What future? Im just waiting til 2022 and the next election only to be told that some Gammon idiots who are xenophobic over-75s who think that anyone younger than them who is ill is "faking it" have decided my future for me because "I don't look sick enough".
So far, which years have been the best years in your life? What have you done during them?
Looking back - Ive had a crap life. I'd like to say it was starting my charitable company and helping all the people I helped but that shut and left me and those people worse off than before. I'd like to say it was my campaigning to get the Autism Act in 2009 but this Government just ignored it - all those years. All that effort. Wasted. Getting my degree? Nope - I can't say that either as it just left me in a shed load of debt and unemployable. My marriage? I was widowed twice. My son? Yeah let's go with that, bless his cotton socks. What were the best years of my life? Ah... I hope they are still to come. Glass half-full and all that.
What would you like to do if you didn’t have your condition?
I would probably be a politician - if not, almost certainly working in third sector industries helping people - probably abroad (but with a cholesteatoma you can't fly) - helping to deliver psychological support to those who need it most. I would probably be married or at least in a relationship. I'd like to be able to go out and drink with the "girls" after work on a Friday night and have fun, like normal people do, certainly. If I could drink, or work, or knew anyone to go out with!
If you had to describe your life in a sentence, what would it be?
I was born; it was crap, crappy teens, got married too young, crappy marriage then divorce, did a degree; started a business and then it all went to crap when my second husband died and my son was diagnosed with autism. 30 years of crap since. With a cherry on top called cholesteatoma and polymyalgia rheumatica. Yay!
Finally, what advice would you give to a person in a similar situation?
Life is crap. But you are greater than the sum of your illness. Embrace joy when you can - it won't be often, but when you can it is truly beautiful. Remember, its a disability not a can't-ability. It just takes you a little longer is all. Oh, and ((hugs)) from me to you.
