In the beginning.......
Almost everyone with MS has a diagnosis story. How someone finally turned to them and confirmed “you have multiple sclerosis”. I don’t. I have the memory of a bewildering first episode, of numerous tests, specialist appointments, and courses of IV steroids over several months of relentlessly appearing new symptoms. I remember vividly the relief I felt when I finally met the one who put it all together and gave me a prescription for a disease modifying drug. But no one ever actually named what was going on. When a patient comes with their own medical degree, apparently some things don’t need to be stated. But that’s a topic for another time – today I’d like to take you right back to the very start of my MS story.
Optic neuritis is weird. Others describe being suddenly blind or having searing eye pain and blurred vision. That’s not how it usually is for me. My first episode back in 2002 was bilateral. My eyes were fine (picking up perfect pictures) but the wiring behind them was inflamed, so the images took about half a second to reach my brain - creating problems that prompted an ophthalmologist to set up my first appointment with a neurologist. Getting there was an adventure!
I live close to good public transport, but the ten minute walk with three roads to cross became a near-impossible nightmare. Each time I looked down streets I could see cars – but were they parked or moving? Only time would tell. Terrified, I inched onto the asphalt, holding up a hand in a policeman’s “stop” gesture and somehow made it safely across. The triumph of reaching the station alive had barely sunk in when I confronted the invisible grey-on-grey ticket machine screen. Thank goodness for the stranger who did my shopping for me! The profoundly nauseating experience of suburbs whizzing past faster than I could see them necessitated closing my eyes on the train, but I made it – all the way into the city and out to my destination. Thankful that I’d left myself extra time, I negotiated the kilometre between the station and the hospital. As the sun beat down on me, my surroundings became progressively less distinct as heat sensitivity declared itself. But my shaking, blurry self did finally find the front entrance of the hospital and the “helpful” information desk lady who suggested “just follow the signs” to find the clinic.
I was very much in need of sympathy from the neurologist who finally listened to me complain that my eyesight was so bad I couldn’t even walk or use public transport safely. After all sorts of tests he confirmed that – if I took enough time to let each letter sink in – I could still correctly read the fourth bottom row on his chart. He patted me on the shoulder and reassured me kindly “Oh well. You’re perfectly legal to drive”.
The Unaffected One