Maybe I should have called this one “Short and Sharp 2.”
Yes, I’ve had another relapse, following my last one in May. I can no longer clean my own tail, and the present regime is literally to “s**t the bed!”
I’m using a lot of exclamation points here, but I feel my life is now one big one! As the kids say, or maybe it’s the kids who’ve now had kids say, “WTF!”
How much of the above survives the remits of our editor bible for Multiple Sclerosis News Today I’m not sure, but I’m too angry to care. And anger is something I’ve always used — in fact it started my media career.
I’d been working for six months with adults with severe learning difficulties. I wanted to see if I had the vocation. In fact, it was the only job interview I passed in my life. From then on, I was to create my own work. A socialist advocate for the self-help of Thatcher’s new Britain. A weird dualism!
But I was tired. Not of the job, but of the relentlessness of it all. Whatever good we were doing during the day was expunged by the nurses going right back to smacking our charges as soon as they got back on the ward. Everyone was institutionalized.
I had no capacity left to do anything — I was numb, even more numb then I am now. As my wife, Jane, pointed out last night, “Who said life was ever going to be fair?” This is a truism I’ve quoted many times myself. It was a verbal slap to my face that stopped me from whining or blubbering, or both.
Back to the last time I physically used anger. It was still sort of righteous — I was in an Indian restaurant with friends, and a smallish guy at another table was being racist to the staff. Things like this still happen today, but it is by comparison a rarity. Back then, it was de rigueur.
Notice I said he was smallish. If he’d been built like a pro wrestler, I might’ve demurred. Or more likely, I wouldn’t be here now to write this tale.
So, I got into my one and only fight as an adult. He got a few licks in. However, although the age of kung fu had passed, I had amassed a more recent technique: World War II unarmed combat. My dad had been a top Royal Air Force Regiment instructor and had passed on a few things. The guy gave up fighting after I broke his nose. My point was made, and I saw no need to go further.
I resigned on the following Monday. I had no idea if I could survive as a writer, but it was time to put up or shut up. Now I have no idea if I can survive this acceleration of MS.
My last disease-modifying therapy, Ocrevus (ocrelizumab), was holding off but not stopping MS’s malevolence. My right arm was beginning to deteriorate badly.
I remember screaming when I was a yard from the ward to get my last Ocrevus infusion in December. My neurologist had stopped the procedure three days before because of the threat of brain cancer, which had only now hit the National Health Service’s system. My leukocytes were too low.
“I don’t care about brain cancer, I need this!” I shouted somewhat belatedly.
I might not have gotten brain cancer, and I might have gotten another six relatively pleasant months. But the MS eventually would have broken through anyway, and I might have brain cancer to boot.
So, by writing this my anger has dissipated.
Plus, I’ve been aided by my friend Nige, who sent through an Aussie whisky tipple he knows I like. Hey, it was on a special reduction!
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
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