Since the seizure in 2006, I’ve had one diagnosis after another.
After a recent operation; a much needed shunt for hydrocephalus, I needed an emergency operation during recovery for the previous operation.
In all honesty, it’s all been a bit too much. I decided to do some much needed research.
My nephew was born with Hydrocephalus: water on the brain. I believe he has died.
My niece I recall had no crease between the small of her back and her bottom. Her father died last year. I haven’t seen her since she was 6 months old. She’ll be in her late 30s now.
My mum had a huge bump on her back and I’ve recently learned my older sister has similar problems with her brain but doesn’t have hydrocephalus.
My uncle has had brain surgery. It’s impossible not to recognise a genetic connection. Are you painting the same picture as I?
It’s been a fractious family. Not seeing each other for years except at a funeral or wedding is the norm. Sad but true.
The one thing I haven’t found a connection to yet is the cystic fibrosis gene. My sister had tests and she doesn’t have one. It seems 1 in 4 siblings can get one or more. So I’m alone with that one.
The striking discovery to connect the genetic factor so far is Spina Biffida Occulta.
I’m also hoping Dr Jaleel Miyan of Manchester University managed to call on his team at Preston Hospital whilst I was there to take a sample of my CSF. Cranal Spinal Fluid. He believes the answer is in that.
We want to work with Jaleel on this subject. Because there are no pills involved in this condition, it’s difficult to raise interest from the drug companies to support his research for that reason. No pills, no profit.
Anyways, Spina Biffida literally means split spine. A clump of hair or cyst can be found in the area where the spine is affected. Strangely enough, I had one removed from the nape of my neck where my spine sits which I had to have removed some years ago. It hurt in the summer when it swelled. It gave me a headache. I still have the hole there.
The lump my mother had on her back was a cyst. It didn’t trouble her but it was annoying for her. It did sometimes ache in the summer. She was small in stature. Often complained of headaches. She had bronchitis every year but didn’t smoke. She was always considered cold and unfeeling; this was clearly an indication she too was ASD. Autistic/Asperger Syndrome Condition Was she the CF carrier?
The phrase I still remember her saying to me quietly was: ‘you’ll die a lonely old lady. You’re aloof’. I used to press her for love, a cuddle, anything to try and communicate with her as a daughter. Unknowing at the time, I was ASD too! This was late 60s and early 70s when little was known about this CONDITION! It’s in capitals because often people confuse it with ‘illness’, ‘disease’. Think of it as a different set of codes for those with ASD that read differently to those of the A-typical being.
Anyway, Now I know her more than I ever did. She’s been dead for some time now but I can relate to her. Now I’m coming up to 60 and trying to find answers so I can explain to my daughter and my grandson how these conditions may affect them or their children.
But it’s difficult when you don’t know where she lives. I know how she feels about me. You could say: ‘history repeating itself’. Maybe when I’m dead she’ll understand better. But of course, that’s too late. Living for each other and serving each other is for when you’re alive.
In conclusion, I have to find the answers if I am to understand the Mcr Voices women I currently serve and will continue to serve. Helping them to find a way out of situations similar to my own is my lifetime’s work. I also dearly want to see my grandson enjoy life with a healthy family as and when he cares to have one.
Square Circle Theatre