Here is the full transcript of Mark Webb’s talk titled “Why Do Friends Drift Away In Hard Times?” at TEDxKingstonUponThames 2024 conference.
Listen to the audio version here:
TRANSCRIPT:
For those of you who are visually impaired, I’m a white, middle-aged bloke. I have a purple three-piece suit on, specially made for me, kind of matching purple hair. The least interesting thing about me is my wheelchair. Purple is the symbol of disability, by the way.
I’m not purple-rinse-ish, normally. Eighty-three percent of disabled people develop their disability, arrive at disability after they’ve been born, sometime later in life, and I’m one of those 83%. Now, thanks to, I think, I don’t know if it was nature or nurture, but a very positive attitude to life, but principally because of the amazing support of colleagues and friends and my family through life, I’ve had an amazing time, and I hope that I’ve got many more years of having bonkers adventures and brilliant times.
So, I could now easily give you a speech, a standard disabled speech, seize the day, you never know what’s around the corner, don’t pity me, all that monarchy. But actually, what I’m going to do, because I want you to have a takeaway, not pizza, but a takeaway from this speech, is I’m going to talk about the friends and colleagues who have helped me through life have just a wonderful time. So, that’s going to be, they haven’t drifted away, and I’ve talked about, I’m talking about not being a stranger.
You find when you’re disabled, and I’ll come on to it, people drift away. So, please don’t drift away. That’s going to be the message. So, my story starts in 1992. I was living in Esbly, a little village east of Paris, and I was walking down the high street, and I had just passed the mini market on the left, and all of a sudden, I was totally overwhelmed by pins and needles right down my left-hand side, so intense that actually in later life, I called them nails and needles. And they didn’t go away for three whole days, but given I was 23 and therefore immortal and a bloke, I totally ignored it, and as I said, it went away, and I got on with life.
Working at Disney
Now, I know it was 1992, and it’s kind of been given away in my little pre-empt, because history tells us that a theme park east of Paris also opened in 1992. Now, that’s me at the front there, holding Mickey Mouse’s hand, the boss, but behind me… Yeah, yeah. So, I had the most amazing job.
I was looking after A-list celebrities and major VIPs, and when you open a theme park, a Disney theme park, you get A-list celebrities. Now, Michael Jackson was a step up further. Now, I know that there’s a lot of people Now, I know he was engulfed in scandal later, but in the 90s, there were three questions I was guaranteed to be asked. One, is Bubbles the chimpanzee with him?
No. Two, does he sleep in an oxygen tent? No. Three, has he had plastic surgery? Bloody hell, yes. Now, there’s not many people who can genuinely claim that they’ve had Michael Jackson sing “It’s a Small World” in the back of the car to him, but I can genuinely claim that. I haven’t got it on tape, but that happened. He was in my car for three days.
I looked after Clint Eastwood, Kevin Costner, bonkers brilliant times. Fast forward two years, my second symptom popped up, bladder issues. This, I didn’t describe in my visual impairment description, but on my lap is where I wee. I wee out of my tummy into a bag.
But in 1994, I suddenly started developing bladder issues, which generally involved a rush to the loo. Sometimes I didn’t make it. And this being France in the 90s, they had a very strange relationship with urinating in public. And basically, I could wee anywhere. So I visited many a lamppost, a tree, a bush, a gate, a doorway, just anywhere. And again, I ignored it. And I assumed that I was in some kind of secret sect of men who occasionally had accidents and didn’t talk about it. And I got on with life.
Two years later, still at Disney, and my third symptom, erectile dysfunction, floppy willy. Now, love God that I was, or floozy at least that I was, funnily enough, I did finally go to the GP, the doctor. And he sent me to a specialist in Paris who promptly injected directly into my willy and induced a massive erection, so big that I confused it with my gear stick in my car. And drove home sort of one hour east of Paris.
And it stayed there. And it became agonising. And I had to race back into Paris, careful which gear stick I was touching, and have a cannula placed into my willy to take down the erection. And so the specialist said, “Mark, this is not a problem. You can see you can have an erection. It is just in your head. So just take these blue pills and you will be all right.” And so I got on with life, just needing a blue pill when I wanted to, you know, whatever.
So I didn’t put anything together. I assumed that every so often somebody wet themselves and I had to take the blue pill when I was feeling randy. Fast forward a good few years, I had met my beautiful, wonderful wife. We had had our first child.
Being Diagnosed with MS
And we were working for, yes, the UK’s leading electrical retailer. 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 is an autoimmune condition.
So it’s one of those diseases 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 but 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 smorgasbord of symptoms. It was a tough time. So I went to, I took a couple of weeks off work 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 me had all researched both MS, the disease, and also the psychological impact that I was likely to be facing.
And the upshot of that is that when I came back, not one of them drifted away. They were all up for conversations and jokes and carrying on and treating me as a human being. And that was a huge bonus and a benefit. And in retrospect, actually a surprise.
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 behaviour, but I’m afraid it happens. And it can happen 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 message is going to be at the end of here.
Continuing to Work with MS
But anyway, I’m just going to keep hammering this story home. Now, 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. So I have trouble finding words sometimes. I have a short term memory loss. I have a 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. 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, “There, there, 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 what I call the guilty check. “There, there, Mark, have a few grand. You need to retire. Off you go into the sunset. Thanks very much for your service, Sonny Jim. And we can forget about you.” What actually happened, and I’m paraphrasing, but roughly it’s 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 a real thing. And it was becoming a business tool. So we came up with the role of head of group social media for a company that employed 40,000 people.
It was a pretty hefty role. And we kind of invented flexible working before flexible working was a thing. So for the cost of the company, the cost of an iPad, 400 quid, I could continue to work and just work from home, tweet from bed when I was exhausted, but still benefit the company and still feel proud and involved. And it was just a wonderful, and again, something that just doesn’t happen to many disabled people.
It was an imaginative and creative thing for the company to do. Just human and not letting me drift away, not drifting away. So that’s me, me, me, me. But Richard E.
Supporting Others
Grant, a lovely actor. He’s brilliant on Instagram talking about social media. He’s a lover of life, adventure, travel, food, art, architecture and his family. He lost his wife about four years ago-ish to cancer. And he talks very openly about his grief. And I can remember, I think it was the Times wrote an article relatively recently, and the title was, “First I lost my wife, then I lost my friends.” And it felt to him as if his wife had been cancelled by the actions and and drifting away of his friends. So it’s a real thing.
And it hurts. It really hurts. So I’ve got one rule for our two boys, which is for any new parent or soon to be parent, this is a good rule to have. Be one of the good guys, because it kind of covers off bloody everything.
But in terms of this, if I hear of a school friend or colleague, college friend of theirs, having a tough time, I’m very insistent that they seek them out and they support them and they ask them questions and they try to keep urging them on and bring them out of whatever they’re suffering from, whatever struggle they’re having. So my message to you is, please think about colleagues and friends who you may have slightly avoided in the corridor, in social occasions, and don’t drift away. We love company. We’re human.
We love hugs. Please invite us for a coffee. Take us out for a glass of wine. Invite us round to social occasions. Talk to us at the water cooler. And if, look, maybe there’s going to be another TEDx talk that will teach you how to win the Nobel Peace Prize. This one isn’t going to win you the Nobel Peace Prize, but it’ll help some of you be better friends and colleagues to people who you might just have drifted away from. Thank you very much.