I was diagnosed with Multiple Sclerosis this year, an auto-immune condition that scars the nervous system. It's a story of messages repeated, interrupted, lost, echoed, divided, shadowed. This message has been a year in the posting, well, two and half years. Let me quickly tell you how I joined the brotherhood and sisterhood of the janked neuron. Bear with me.
Summer 2011: A signal from my body that I couldn’t fully see: rippling, wobbling vision in one eye. Looking into my lens, the specialist saw only floaters. Summer 2012: Bzzt- - Crack crackle. Pins and needles and numbness in my feet, and then it crept up my legs, then up my torso, and then down my arms. My hands fizzed constantly and felt nothing. I couldn’t hold things, button a shirt, or tell if a towel was wet without pressing it to my face. I couldn’t type with any speed, or without a litter of mistakes. I wrote this: Afriad that i will never do these things properly again: type, write, hold, draw, feel, walk, cycle. afriad that this is the best it will evber be. nafriad that it will get worse. i am using spellcheck for the first time because i cannot trust my hands to type accurately. When i type, daggers of ice run from the key up my fingers. typing is the same as becoming frozen. Our second daughter was six weeks old before I could feel her skin.
A series of blood tests, referrals and delays sent me to a neurologist in December - I chose London hoping it would have the best neurologists and be better insulated from any future NHS cuts. The neurologist asked many questions and did many physical tests, and showed me a diagnostic diagram that exactly described me: a collar and cape from neck to shoulders and upper torso, and she sent me to the machines. I lay on a platform, my head fixed in a cage, and was slid into a MRI scanner. A huge hyper-technological object in an observed clean-room. Deafening sounds heard and felt of very heavy objects being moved very quickly. A glowing white torpedo tube. Machine arbor type, space time. Every atom in my body was magnetised, and I became a picture showing a cervical lesion, a thoracic one, and a pair in the brain. During the lumbar puncture, a nerve was plucked like a guitar string - electric shock. The neurologist: “These findings are in keeping with demyelination and the possibility of an underlying diagnosis of MS was explained”.
30 January 2013: the consultant says “This is relapsing remitting MS and I think we should start treatment as soon as possible”. Though was diagnosis was half-expected, my mind empties of questions, and I feel as if a bright light is shining on me from above, pressing me down. We ask some faltering questions, there are tears. The letter arrives weeks later: “multiple intracranial lesions [...] most suggestive of two sequential cervical cord relapses [...] hence meets the criteria for relapsing-remitting multiple sclerosis and is eligible for disease modifying treatment.”
Multiple Sclerosis is the immune system attacking itself. White blood cells cross the blood-brain barrier in strength, identify the brain and nervous system as a foreign body, and attack it. Nerve fibres are scarred (sclerosis) - stripped of myelin, a fatty sheath which insulates the fibre. Once demyelinated, nerves conduct neuro-electric messages slowly. Or partially, or unpredicatably, or not at all. If you're lucky, you have Relapsing Remitting MS: your body is attacked (relapse) and later recovers (remission). I am lucky.
I want to know everything. At a neurology research open day at a university, I watch a freshly donated human brain being lifted out of a bucket. We are just fatty jellyfish, neural blancmanges. I also want to know nothing - MS research news is a torrent that I can't keep up with.
Treatment options are a matrix of efficacy, risk and side effect, and convenience. I regularly inject a disease modifying drug which doesn’t prevent a relapse, but reduces its likelihood. It is delivered by a courier monthly and lives in the fridge. The drug alone costs about £7,000/year. I have excellent neurologists supported by excellent MS nurses. The NHS is carrying me a good quarter-century earlier than I'd have imagined. So grateful.
My family is a golden net that gathers and holds me up. Julie sews the net so I don't fall through it, she holds both ends safely. The girls are too young to know, but they radiate energy and love, which I feed on. We talk about careers, family, money, the future. The range of possible futures is wide: at one end infrequent relapse and a normal life, and at the other Secondary Progressive MS in perhaps decade and a gradual decline. Symptoms today are uncertain signals for the future: I can’t look ahead and see what my graph looks like.
I tire more easily now and must pace myself. I throw my knee back, locking it so that my leg feels more stable, making me limp with a seaman’s roll. My balance is often unsteady. I cannot run. Heat unmans me, so showers and soups are lukewarm. My vision sometimes bleaches out, or ripples and jumps with dazzle patterns. Symptoms come and go. MS is about reserves, timing and range. Measuring what's happening, what I can do. Chop work up into careful chunks and it goes just fine. The frequency and amplitude of injections, side effects, calendar appointments, fatigue and recovery time, blood tests and medical meetings, relapses, remissions, how far I can walk, the period before I tell the world. My body not doing what I want it to. A sense of dividing, or multiplying: I, you, are plural, a collection of many systems that all do their thing. Sometimes it takes a while for them to agree and co-ordinate, and sometime they refuse. Many activities have become more conscious and deliberate - come on, let's not fall over now, ok let's piss now. An organic negotiation that I can feel. Being, in between, OK/not OK, it's fine. MS calls for a stoic temperament. MS is chronic, like diabetes. There always with me. Fold it, interleave it into my life. Set a different course to the same destinations. Work goes on. Life continues. Find a way. Learn new ways. My lucky life. My beloved family. My beloved disease. Patient. Patience. We are multiple. I am multiple. Now you know.