Thirty-one years ago my legs turned blue… I kid you not, one minute I was feeling fine and the next I had blue legs. Ever happened to you? I hope not. After a mad dash to a London hospital, countless tests, horrible MRI machines, EEG wires I was completely consumed with an overwhelming sense of fear.
In all honesty I don’t remember very much about it all which is probably a good thing but I do remember being diagnosed and at the time thinking it sounded quite exotic. Encephalitis or according to one Wikipedia description “an acute inflammation of the brain”.
Not quite so exotic after all me-thinks.
I was lucky to recover so quickly and without any life threatening after effects. But it has left me with, what I affectionately call, a wonky brain. Epilepsy: my super-charged electric brain.
Apparently I am in good company. From what I can make out (google .. so please forgive me if this is piffle) Lil Wayne (rap superstar), Dai Greene (Olympian), Danny Glover (actor), Jason Snelling (former Atlanta running back), Neil Young (singer), Mike Simmel (Harlem Wizzards), Prince (superstar), Chanda Gunn (US Olympic ice hockey team), Martin Kemp (singer, actor), Hugo Weaving (actor), Vladimir Lenin, Caligula all suffered. Retrospective diagnoses amongst others include Socrates, Julius Caesar and Napoleon 1 of France. Whilst suggested diagnoses include Ezekiel, Paul of Tarsus, Saint Birgitta and Saint Catherine of Genoa… so you see the company I keep is good… it has Olympic athletes in it!
Fellow bloggers, readers and friends.. if I’m completely straight with you living with a chronic condition ain’t a walk in the park. It has meant for the past 31 years I have had more brain MRI scans than I’d care to mention, had my head wired up to record the activity in said wonky brain and taken more pills than I could possibly count and been passed from neurologist to neurologist. At the beginning I had to lose my licence for two years and then re-apply every three years for a new licence. Initially I tried to hide my problem listening to someone who when I was diagnosed said “you must never tell anyone or you will be put into an institution”. Shame on them.
I am lucky because if I have a ‘fit’ you would never know. I don’t actually know what my sort of fits (it’s long and Latiny) are called but they come in the form of funny smells. When I have them I know that I just need to rest, avoid stress and sleep.
Seven months ago I lost my licence again for the first time in 29 years. It was a blow… I feel like I have lost a limb. I am completely dependent upon other people to drive me to see my Father who is in a home for the elderly 40 minutes away. I have also been unwell for the past few weeks to such a degree that they have given me additional meds to help me sleep and to be honest it feels like my brain has gone on a little holiday. My stress has completely gone and every night I am sleeping like a baby.
I have an amazing consultant to sees me at the drop of a hat if I am ill. I have direct contact with a specialist nurse if I am particularly unwell. I am blessed beyond belief to have that. For so many years I have resented my brain. But recently I had an epiphany… my brain is me. I am me. People love me for me. That includes a wonky brain… so in my books that makes having a wonky brain OK because I have a lot of wonderful friends and they can’t all be wrong can they?
Living with a chronic condition is tough but you can make it what you want. I will not let this define me. I am telling people what is wrong because at the end of the day people around me need to know. I am far more than one part of me that doesn’t work. Sure I may have periods of ill health but I truly thank God for how well I am. He knows my brain and loves it more than anything… and that makes it all ok with me.
Oh and on the upside recently when I was at a conference at Leeds Arena and when the lights were too much we got upgraded to rather a fancy box where I didn’t have to be affected by the lighting… we felt like superstars.
Let’s look hard folks – there’s always, always an upside! I’m embracing my wonky brain, taking care of it and just remaining thankful and positive for just how well I am. How loved I am and how unique my brain is and how it still works so well despite its tiny limitation.