Are your genes killing you?
Research hypothesis: Before I die, I seek the truth.
Why am I doing this? I never understood why my mother and daughter have behaved the way they have. I never understood why the family was so fractious and violent. I never understood why aunts, uncles, nieces and nephews died so young.
Let’s work backwards and then come back to the beginning.
Hospital visit – We arrived at 8am as requested, 5 August 2016. I went to theatre at 1pm and returned to the ward at 3.45pm with a sore head and stomach.
A shunt had been fitted for the anomaly: hydrocephalus (water on the brain). I’ve struggled with this since birth it seems. But being the ever stubborn woman I can be, like my mum, I ignored the debilitating headaches and the sometimes 3 days in bed in darkness, just like my mum, and just carried on.
2006: A seizure changed all this stubbornness. I just couldn’t bear the head aching when I lay down too. The feeling of swelling in my head. The tightening. There was no way of getting rid of it. This attack was different. I went from chills to fever. Shakes to resting. Hot to cold. I couldn’t get to the toilet alone. My body was listless except my big toe. I couldn’t speak. John was terrified. I was terrified.
We arrived at Blackpool Hospital and anomalies were found following the MRI scan on my head. I was transferred to Preston where they specialise in neuro conditions. I’ve been with them since and a consultant at Salford Royal sees me every six months and checks how the medication was doing its job.
The deterioration was evident: Using an aid to walk. Shuffling rather than walking. Falls, struggling with stairs, particularly coming down. Continence urgency. I had to be near a loo all the time. This all happened in a year. We tried to make sense of what was happening. I researched others with the condition and other conditions. I found one woman in Plymouth. I felt so alone. I bet she does too.
We opened a project called: Brainwaves. We recorded music tracks about symptoms. Meeting medics specialising in the conditions to support the analysis of the symptoms.
We agreed the stress of redundancy from teaching (thank you Mr Gove) and the financial pressures gaining speed because we were unable to get work; and then straight into running a business, was clearly daunting and very stressful. I had to train quickly on running a business correctly; human resources; policies and procedures; health and safety; insurance requirements; licencing and planning. The latter two John took on. The biggest hit amongst all this was finding out I’m ASC. Asperger/Autistic Syndrome Condition.
One diagnosis after another followed: Meniere’s/vertigo; sinus disease; cystic fibrosis gene causing chronic pancreatitis; asthma I had been managing since I was 21 but was likely caused by the CF gene: we need to investigate further with this one. But the revelation that I had male traits; PTSD and emotional incontinence meant my body had been taking the stress without me realising what I was doing to myself.
I saw my mum struggling with many of these. Particularly when she had to rest for days in the dark. Had vocal nightmares with real action being exposed when she woke the household. In the end, she was diagnosed with Alzheimer’s at 52. It was too late for her. She suffered with this disease until she died at 75. This was the final straw as they say.
I had to research to find out if I was next with Alzheimer’s. So the research and continued: Before I die, I must seek the truth. For my mum’s sake, mine and my daughters.
Memory assessments. Cognitive assessments with a neuropsychologist. The outcome, I couldn’t bear. But I’m going to have to face it and I will. I’ll share it with you when this journey begins. But to continue. I had to interview my family. Well, what family I had left.
My brother died last year. I didn’t get the chance to sit down and talk with him about the research. It was clear though he was ASC. And I also found out he had learning difficulties. He had a heart condition too. He lived like a hermit. He cried when he had a drink. He could only embrace the past. I for one didn’t want to revisit the time my father punched his lights out when he was 15. At the age of 9. I had no idea what was going on. And of course as an ASC. I understood less. I continued with the research by speaking to my sister.
When I made contact she told me she has been struggling with neurological disorders. She had the same weak left side; she had stroked several times. She too had falls as well as the balance problems. But she didn’t have Hydro.
My balance defect had been with me since 2006. It has gradually worsened since. My sister is undergoing an ASC assessment. She’s been checked for the CF gene. She doesn’t have it. She has a ‘head man’. It’s what she calls him. She also has Epilepsy. This is more likely for both of us because of the neurological disorders we live with.
I have managed to stitch together the genetic dysfunctions: my nephew died from water on the brain quite young. My first cousin had significant learning disabilities and severe Epilepsy. She also died young. My uncle has had brain surgery and it’s likely my auntie and uncle on my mum’s side committed suicide because their ASC drove them to it. Little was known about it then. But what I do know, is that anyone with ASC is likely to die 15 years younger than the A-typical. They are also more likely to suffer from loneliness, isolation, intimidation, ridicule. I currently run a project to support women with ASC.
Square Circle Theatre’s Mcr Voices searches for ASC women to give them a voice. I have made it my life’s mission to help women like me. They need support and help in any way possible. Particularly with skills they may not have because they haven’t grown up with technology. SCT wants to help them get a job or join a group. Improve their lives. This is brief but important. It is part of the journey. Back to the last year of my life.
It has felt like it has moved forward ten years in one year. I became deaf with tinnitus and withdrew as much as possible from conversations, people I knew. The one thing I should never have done on this journey was be part of a thriving theatre. As wonderful as it is. It is a very unsuitable environment for Aspies (ASCs). Everything became stressful. I found myself training just to escape the environment and the people around me; except my husband. I became fractious and fearful of some people.
Fear has been the key that turns on my stress. The Post Traumatic Stress Disorder became more severe. I just thought I was mad. It took me 15 years to tell John about the hallucinations. They were disruptive. I would find a space or place to be alone to deal with the sickly sweat covering my body during and following the hallucinations. John insisted I see the doctor. ‘What if he sections me’ I said. I caved in.
I sat with my head down and explained the hallucinations I experienced. It was always a horrible death I experienced. Too gruesome to discuss. The doctor told me. You’re not mad, your hallucinations are the result of PTSD. A condition which manifests your fears into the hallucinations you’re experiencing. ‘How long have you been experiencing them’ he asked. ‘Since I was 18’ but they have been worse this last year. I’m now 58.
I started to see my mother’s life unfolding before my eyes. It was as if I had been possessed by the very hypothesis I was aiming to understand.
The research continues. It is in no way complete. Back to the hospital.
Four days after the operation, I was home with painkillers in hand that I was informed make you constipated. Great. The only thing I’ve ever found helpful for that is a couple of glasses of Guinness. Something I can no longer have with Chronic Pancreatitis.
The CP has to be monitored like my Asthma. I have to have a special diet. 4 grams a day or less fat is what I’m allowed. Fish is great but it’s as expensive as meat, which I can’t have either. Anyways, back to the return home from hospital.
A couple of days at home the scar tissue on my stomach began to swell. It was like a golf ball. Maybe a bit bigger.
Back to the hospital and on the emergency list. 30 hours later, dehydrated, bruised hands from failed needles to take blood or fit a cannula. That’s what happens when you’re dehydrated. I was also hungry. A drip to help hydrate me was fitted to the cannula they managed to fit to my left lower arm.
I hadn’t eaten much in the hospital the first time or when I was at home. Hallucinations started. A face on the window; it was a shadow made by the tree outside the frosted window. No blinds. Just me, the face and the tree. The face’s mouth started to move. It looked like the face of a dead man. The sounds of him munching on the flesh of my stomach started. I felt crazy. Tense. Troubled. Nobody had been to see me since the mid afternoon. No obs. No checking if I was in pain. Now it was coming up to 12.30am. Here I am in a side room with a zombie’s head for company. Suddenly I jolted. My brother had fallen from the sky and landed right on top of me. Smirking and looking at the Zombie head. I buzzed for the nurse in desperation. He came.
I asked: “When am I going for my operation?” He must have sensed I was distressed from my tone and breathing. “I’ll come back to you” he said. But he never did. It was the anaesthetist who came and asked me the same questions the one asked me at 2pm. I asked her. “Are you going to leave me for another 12 hours”? She looked tired and sympathetic.
“I understand your stress she said. The emergency list has been long. We were about to come for you when an appendix patient came in”.
I softened and realised there wasn’t only me to see too. But I don’t think I could stand experiencing that head chewing on my fat any longer!
I managed to doze. I heard a voice: “Come on then, Gina. Your turn.”
I woke at 2.45am. I now had seventeen clips not the nine I had just had removed by the nurse. I looked at the scar. No lump of fat for the head to chew on. I slept and woke mid-morning the next day. The head had gone.
As an emergency, I had little on me to change into. A kind face appeared at the door with an ST in one hand and funny looking pants on his head.
“I don’t need what’s in your hand but I do need what’s on your head”. We both smiled at each other. His face was warm and friendly. Not like the beast I met on the window the night before.
Trust me to be so ill when there’s little or no assistance from the measly government we have in power right now. Let’s hope Theresa May‘s ‘A Country that works for Everyone’ stands and has a heart to help women like me. I’m not alone, if I was, I know where I’d be, with Amy.