9/11 means the day terror came home to roost doesn’t it? It does to me as well; but before those mind-blowing images appeared that day, I had a terrifying experience of my own – I woke up and my body no longer functioned properly.
That day was my own personal Ground Zero. My name is Kate. I am (still, just!) 39 years old. And I have Early Onset Parkinson’s Disease.
When I got up and looked in the mirror very early that morning I almost had a heart attack – the right side of my face was pulling down almost to my shoulder blade; was I stroking out? No – my father had suffered from a stroke a few years earlier and I knew they didn’t hurt; this pain was excruciating – and it didn’t seem to stop. Eventually, though, it wore off – so I dismissed it as a weird cramp and got on with things.
Except it came back. And I realized other strange things were going on. A tremor when I was still, or very stressed, or tired. My beautiful handwriting started to wobble and disappear off the page in a kind of snail trail. When I tried to hold onto a glass or plate – my brain thought ‘OK’, but my hand said ‘nuh uh’ – and another set of crockery was ruined. I had no stamina. So, the rounds of specialists began. And my life changed forever.
CT scans. MRIs. Lumbar punctures. EKGs. Blood tests. Being recorded before a panel of student neurologists who were ‘fascinated’ by my facial grimaces. I was not fascinated by their poking and prodding, and ended up running out of the room in tears. I was diagnosed with MS – and treated accordingly. All that happened was that I became intensely depressed and put on 20kgs. So – not MS. What next?
Well, ‘what next’ was my life fell apart. My ability as an excellent netballer and skier waned. I had to give up work – a very lucrative and rewarding career in change management and HR. I even had a slot on Sky Business and Radio National. But how can you do that when you feel like a freak? And have no energy? The answer is – you think you can’t. Reinvention and acceptance was a long way off.
I went through about 6 years of blather and disbelief until I was finally, miraculously sent to the most amazing man in the world – my beautiful Dr H in Melbourne. He took one look and said ‘you poor darling – we really need to help that face don’t we?’. Hysterical, snot-filled bawling from me. Empathy and tissues from him. Then – oh bliss! Botox – and the spasms stopped. They stopped. The other symptoms were still there – but the pain had gone. Life could start to be coped with.