Fast forward a good few years, I had met my beautiful, wonderful wife, we had had our first child, and we were working for, yes, the UK’s leading electrical retailer. Um, I was diagnosed at that point because my wife finally, she’s not only beautiful but she’s more astute and more sensible and more grown-up and cleverer and a girl, and so she persuaded me to go to the doctor, and I was sent to a urologist, which is a Down Below specialist, and a neurologist, which is a brain guru, and together they fairly quickly diagnosed me with multiple sclerosis, which is a condition that it’s an autoimmune condition, so it’s one of those diseases is where your own pesky immune system gets confused and attacks you, and in MS’s version of the attack, it attacks your central nervous system, which is in your brain and your spine.
So, in a sense, when my French specialist had said it is in your head, he had been right because it was the central nervous system and he had meant psychologically. Actually, this was any nerve coming off my central nervous system could impact me and give me a small grab bag of symptoms. It was a tough time, so I went to, I took a couple of weeks off work, um, to punch the wall, to cry, to grieve, to hug my wife, hug our young son, feel sorry for myself, drink heavily, whatever, because it’s a lifelong condition with no cure.
And unbeknownst to me, the team around huge bonus and a benefit and, in retrospect, actually a surprise if you hear far too many disabled people who haven’t had that experience. Now, the wider network of my colleagues, some people were great, but some people drifted away. Some people, because I wasn’t dancing on the table with a glass of champagne in my hand anymore, they didn’t feel welcoming anymore.
But more often than that, it wasn’t because they were evil, it was because they were uncomfortable with the uncomfortable. They were so scared of saying the wrong thing that they didn’t say anything and they drifted away, and I lost them as colleagues. Similar with some friends, they just disappeared from my life.
And around about the same time, another colleague on the same floor, he had a stillborn child, which I can’t imagine much worse than that. And to my shame, now, I’ve got the excuse that I was going through an MS diagnosis and grieving myself, but I didn’t go and talk to him, and I regret that for the rest of my life. I will feel that shame and guilt. Two years later, he had a healthy child, and I was happy to go up and talk to him and congratulate him. And that’s pretty poor behavior, but I’m afraid it happens, and it can happen in…
If you’re grieving, if you’re diagnosed with cancer, if you come out in sexual terms, if you become disabled, you will find that some people, because you’re not happy-clappy enjoying life, people will drift away. So, you know what the message is going to be at the end of here. But anyway, I’m just going to keep hammering this story home. A couple of, no, four or five years later, my MS, which is a progressive disease, had moved forward. I was, to my recollection, at the walking stick stage, but also the chronic, as in forever, fatigue stage. I wake up on 20% battery and go downhill from then on. And also, the cog fog stage.
Um, so, I have trouble finding words sometimes. I have short-term memory loss. I have messed up thinking. I can’t, for the life of me, look at graphs or anything like that that I used to produce. But now I can’t even understand a basic graph. Um, and I was starting to struggle at work. I was in a senior role, and I was called into my boss’s office, and I feared one of two… I knew it was coming. I feared one of two things: either I was going to be made chief photocopier, as in, um, they, they mark off, you go into the corner, out of sight, out of mind, we’re still employing you and we don’t have to give a buggery about you.
That didn’t happen. Or I could have received the… what I call the guilty check. Um, the, um, there, there, Mark, um, have a few grand, you need to retire, off you go to the sunset, thanks very much for your service, Sunny Jim, and we can forget about you. What actually happened, and I’m paraphrasing, but it’s roughly correct, my boss said to me, “Mark, we love you, we love what you do, but you’re starting to struggle. What can we do in role terms that will help you continue to thrive and prosper but will also help the business?” Now, social media was emerging as a thing. It wasn’t just about Farmville or finding your ex-girlfriend. It was, um, it was a real thing, and it was becoming a business tool.
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