Relapse, Relapse, Relapse, Profanity, Relapse

Relapse, Relapse, Relapse, Profanity, Relapse
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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!

Starward, and why not? (Photo by John Connor)

***

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.

‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.
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‘In 1982 John Connor was a stand up, sketch writer & journalist – crap at all three he decided whilst watching a man performing with a paper bag on his head that as nobody else was going to write about stand up he would’. ‘Comics’ Papermac 1990. In 2009 John Connor was diagnosed with MS. In 2017 John Connor still produces/directs his own live 27 year old resident topical comedy show at London’s Comedy Store – ‘The Cutting Edge’. He was also a leading UK Casting Director specialising in comedy – including one of the hippest shows ‘Black Books’ [double BAFTA winning Situation Comedy Award] & for at least a decade the biggest sitcom on British TV ‘My Family’. TV & MS was a step too far – and we know how hard any step can be. Luckily his satirical show was a built in part time job & with the election of Trump is now in the zeitgeist. John now writes “Fall Down Get Up Again” – an irreverent journey with MS.

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8 comments

    • ERIK OXY says:

      Thank you !!! I go thu the exact same thing. I was in my late teens thru late 20’s during the punk rock movement, in which, yes, it was all adrenaline, fun and anger. I played in a fairly known college band. In the 80’s. Then in the 90’s after I was diagnosed and really was just setting in along with lots of alcohol and such fuelled by anger at god politics,medicine, in general everything. That was then. Now i have calmed with my age , but the MS has not. Last several years I have thought about this. In those years of abusing my body, i felt sooo good, all the sex , the booze the fun, the work. Now i live a quiet life and I feel like shi_t. I feel like , maybe i was right the 1st time. I’m on pills that dont do anything, not even kill pain, and I take more pills now. Is this god or life’s cruel joke ? I’m sufe all of of with MS have asked that question….

      • John Connor says:

        Be glad u chose the mad times. Had a few of my own. ‘And he can see no reason. ‘Cause there are no reasons’. Boomtown Rats.
        K – out of context. We’re just inc complicated biological robots – some of us will just go wrong!
        Out x

        • Erik N OXY says:

          I loved the boomtown rats !!! And the mad parade was fun !!! I just want it to continue !!! Hey and i may have m.s. and i may not be as big as Jim ( Iggy) , well ok close,by about 1/4 no no no… but at any rate i can still stage dive , before corona,snd i dont drink corona, i am a Guinness man, or at least the last i checked. … no bobbits around for any who remember…..

    • Karen G. says:

      Thank you for not sugar coating your MS experiences and for telling it like it is. You have won many battles so far with your courage.
      Thanks for continuing to write, even when it must be very difficult for you. You encourage many by doing this.

  1. Quynh-Loan Luong says:

    John,
    What are you on now? Mayzent has been more helpful to me than Occreus and you can take it at home. Don’t let MS get you down. When I crawl on the floor, trying to get up, the beneficial side to the fall is it gives me a chance to clean the floor before getting up 😉 Tears help clean it better too.

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