Here is the full transcript of Rob Cridge’s talk titled “Thriving With Multiple Sclerosis” at TEDxKinjarling 2023 conference.
Listen to the audio version here:
TRANSCRIPT:
Imagine if you were diagnosed with a progressive condition for which there was no cure. I was diagnosed with multiple sclerosis and it’s the best thing that ever happened to me. My journey starts about 1995, it was a hot night and I was driving home from work at the Esplanade Hotel. I was a chef there. I couldn’t quite read the license plate of the car in front of me. So I covered one eye, seemed okay. Covered my other eye, hmm, very blurry. I’m only 27 years old.
The Diagnosis Journey
Maybe I need glasses. So I went to the optometrist, did some tests. The optometrist said, “Rob, yeah, it’s not really glasses related. You probably need to go to an eye specialist.”
Okay, so I went to an eye specialist, followed a red dot on a black background for a while. That was fine. And he said, “Well, Rob, you need to go to UWA and do some more tests.” So I went to UWA, did some more tests, came back to him and he said, “Rob, you have optic neuritis.” “What’s that?” “Well, that’s swelling of the optic nerve, okay? And I can’t really cure that. I think you need to see a specialist.”
And the specialist I’m going to refer you to, he specializes in cancer, but also neurological conditions. Cancer. Hmm. If I got a brain tumor, I’m thinking, “Oh, well, I go see this specialist.” He says to me, “Rob, we’re going to start with a lumbar punch.” If you’ve ever had a lumbar punch, it’s when they stick a spear-sized needle in your back. You’re in the crossed up position, tell you not to move and drain some spinal fluid. As if I was going to move for fear of being totally paralyzed.
After that, he got me in and he said, “Rob, we need to do some more tests. We’re going to send you for an MRI.” Now those who don’t know what an MRI is, magnetic resonance imaging scan, that will take some pictures of my brain. Okay, I’m a bit nervous.
He says, “Don’t worry, you can take a CD with some music with you. It will relax you. It’s quite a noisy machine.” So I go up to Perth, go see the technician for the MRI scan, hand him my CD and he says, “Oh, sorry, the CD player is broken.” I have a million dollar piece of equipment here and their CD player is broken. I’m now freaking out. December 12th, 1995, I’m sitting in the specialist’s office and he says to me, “Rob, you have multiple sclerosis or MS for short. There’s no cure.”
“It’s a progressive condition. All your muscles will probably deteriorate over the years. But look, you can go to MSWA. They’ll help you figure it out.” Okay, so I don’t have a brain tumor then. Pretty cool. So, a week later, my wife and I, we drive to Perth and go to the MS Society in Perth. Of all days, we arrive on the Christmas party.
Learning to Cope
There’s hundreds of people there, walking around with crutches and canes, some in wheelchairs. A guy greets us and he says, “Hey, welcome to the Christmas party.” I’m freaking out a bit now. He seems drunk. Hmm, don’t know. I need to pee. I really need to pee. So I go into the toilet, start doing my business in the urinal.
A guy wheels up next to me, rolls up his pant leg, pulls out a hose and relieves himself in the urinal. Oh my, this is serious. Is this the hand I’ve been dealt? I need to figure out how to play this hand as best I can.
So I come back home and I throw myself into the MS Outreach group as much as I can. I need to figure out and meet some members and ask them, “How do you cope with this illness?” I become president of the group quite quickly, probably because I’m the most mobile and youngest one in the group. I don’t know what to do. And then I think, “Hmm, I’ll be okay with this. I’ll be okay.” “If you can’t stand the heat, get out of the kitchen.” Started resonating in my head, I was a chef, but I needed to plan for the future.
How do I change my career? In 2000, the MS Society called me and said, “Rob, you’ve been a pretty positive guy in the group. We’d like you to carry the Olympic torch.” Okay, we have two spots. One of those spots is being taken by Betty Cuthbert. And those of you who know Betty Cuthbert, she won gold three times in the Olympics. And she’s going to be brawling with the torch in Sydney. And we want you to carry the WA.
I’m thinking, “Well, can I? I’m a Canadian. Am I allowed?” “It won’t be a problem. You can.” Here I am carrying the torch. Pretty cool. Inspirational.
Inspiring Others
I’d like you to meet Bosco. Bosco here is an MS Readathon mascot. MS Readathon, for those who don’t know, is children read books that raise money for people with MS. And I was going to all the schools in the Great Southern, all the time, teaching kids that this is a good thing.
And once again, the MS Society called me and they said, “Rob, we’re having a concert. Courtney Murphy is coming down.” And Courtney Murphy won third place in Australian Idol. “And he’s going to hold some concerts at the school.”
“And we’d certainly like you to present, but also dress up as him and dance with Courtney.” OK, that’ll be really cool. It was. I got to spend the day with Courtney because he’s from Albany. Spend the day with him. I got his autograph.
He met my kids. Fantastic.
That night, I had to take the suit home and then it would go to purse the next day. My wife says to me, “Rob, you got that suit here?” Thinking, “Yeah, I do.” “You want to go get dressed up in it?”
I’m thinking, “OK, this is a good time for me.” “No, Rob, I want you to go see the kids.” My kids were young then. I think they’re 23 and they’re 20 now. Any mascot that comes near them, they’re traumatized by. But these two events started me thinking, “I’ve been positive. And these are addictive things to have. They make me want to do them as much as I can.”
But I haven’t talked to you about my symptoms. Everything seems to be going OK. First of all, one of my symptoms was walking. I couldn’t walk very well.
So I got a cane. But when you got a cane, nobody talks to you, right? I wanted people to talk to me. I wanted to tell my story. So I ditched the cane for a crutch. Everyone wanted to ask me, “What have you done to yourself?” And it gave me an opportunity to say to them, “Actually, it isn’t something I’ve done. I’ve got MS.”
“But it’s pretty cool and I’m happy with that.” And they would go, “Oh, that’s a strange response.” Again, affirmation for me that being positive works. I couldn’t see out my left eye very well. The spasms in my legs were so bad that over the years, they’ve cracked my toenail and had that removed recently. I’ve got numb spots all over my body. My scalp felt like it was burning at one point. All these are crossroads that you have to overcome to continue on your journey.
Future-Proofing Life
I thought, “I’m going to need to future-proof my life.” Lucky enough, I thought of my chef job a few years back and changed careers. I got to work from baking muffins to working with people with disabilities the next day. Fantastic.
We built our house wheelchair accessible, just in case I end up in a wheelchair. So these are all things future-proofing my life. And then I thought, “I should think about a career that I could do in a wheelchair,” because the career I was doing at that moment in time wouldn’t work for me. I got a phone call from Jamie Dunross. Those of you who know Jamie Dunross, he called me. He’s a sailor. He won gold in the 2000 Olympics. He’s in a wheelchair like me, but his arms don’t work very well.
And he actually holds the world record for circumnavigating Australia by himself in a sailboat. Pretty cool. And I get this call from this guy I don’t know. And he says, “Rob, I heard you’re pretty positive. And you can’t walk really well. You’ve never sailed. But I’d like to try and get to the Rio Olympics in 2016. Would you like to come?”
And I said, “Well, what do I need to do?” And he said, “Well, you need to be disabled enough.” “OK, how do I do that?” He said, “You just go for some tests over in Sydney.”
Sailing Adventures
I think I was more disabled with sailing than actually being physically disabled. I was on one crutch at that time. So I went on a journey across the world to Canada. As it would happen, the first world titles that I sailed in, only a nine-week training, were in Halifax, Nova Scotia, where I was born, but only lived for two weeks. 26 days on the water, two days off. That’s actually a bit of my world. We only finished ninth. No, 11th out of 18 teams.
But most of all, I’d already won. I saw people with no arms and legs steering boats. They blew through a straw, and the boat would go left. They sucked through the straw, and the boat would go right.
And I saw them enjoying themselves at parties you would have after sailing. Fantastic. That inspired me to be more. I changed careers. I studied for eight years to try and get into something I could do in a wheelchair. Connor was in year one at the time, and I thought, “That’s my son.” And I thought, “I’ll finish when he’s in year eight.” But I have a goal, and my goal is to be able to provide for my family and to still have a job that I can do.
Awards. I’ve won lots of awards along the way. I won Sportsman of the Year. Understandable, though, given my physique and natural athletic talent. I won MS Person of the Year. I won an award called the Pat Fox Memorial Award at UWA. And the Pat Fox Memorial Award is a positive contribution that somebody makes to study at the campus. I didn’t know I’d won that award until the dean announced it.
I’d won it. And he said, “Can you make a speech?” I said, “OK.” I got on stage and said, “Well, actually, my psychology class was 19 women and me.”
“That’s a pretty positive environment. Thank you for awarding me for it.” I think I’ve made the most out of the hand I’ve been dealt. I’ve never grumped or grived or complained about where I’m at.
I’ve just thought of these crossroads are hurdles to overcome, ways to think of doing something I used to do, but in a different way. I never would have imagined that I’d be doing all this stuff. And one of the good things is that I never would have stalled if I didn’t have MS. And now my son, he teaches people with disabilities to sail at Royal Perth.
He wouldn’t have done that if I didn’t have MS. And it’s pretty cool when your mom calls you. She’s in Perth, and calls you from Charles Gardner Hospital at some corridor there. And she says, “Rob, I’m standing in front of a six-foot cardboard cutout of you riding a bike.”
That’s pretty cool. Two years later, she calls me from Jindalup Mall, says my mom loves to shop. And she says, “Rob, I’m standing in front of a billboard of you promoting something.” Fantastic.
Conclusion
What I want you to take home from my talk today is play the hand you’re dealt as best you can. Surround yourself with positive people. And don’t sweat the small stuff. And the small stuff I mean is my mobile phone is not working. The internet is slow. My car won’t start today. When you get diagnosed with MS, nothing really else matters. If someone gives you a diagnosis of cancer, does anything else really matter to you?
I’m at two crossroads in my life right now. I just started getting a carer in. Every morning, 5 o’clock to 7.30, a carer comes in, helps me get in the shower. I’m losing some independence to keep my independence.
The other crossroads that I’m at is I now have to learn how to self-catheterize. And that reminds me of the gentleman 28 years ago. I’ve started to become him. So this is pretty long. No time like the present. So those of you in the front row, if you reach under your seats, you’ll find a rain jacket. So I’m just about to kick this off. But actually, I can never imagine a life without MS.