Paralympians, Disability & Resilience

Joeita Gupta:
I'm Joeita Gupta and this is "The Pulse." Life is like swimming. Swimming teaches the value of working hard. All credit to my mom and dad who never let my visual impairment deter them. They signed up their six-year-old, often protesting daughter for lessons. I wish I could say I took to swimming like a duck to water, but my love for swimming came with repeated lessons and long hours of practice. As I got older, swimming taught me the value of setting goals. I never swam competitively, but someone once told me I could have. Swimming is easily adapted for many abilities. In the water, there are no barriers. Today, we discuss disability, sport, and resilience. It's time to put your finger on The Pulse.
Hello and welcome to the Pulse on AMI-audio. I'm Joeita Gupta, and I'm here from joining you from the accessible media studios, specifically in Studio five. It's nice to be with you today. We're talking to a world-class Paralympian, athlete, mom, social worker, and the author of a new book, "Resilience, My Will to Survive." Danielle Campo-McLeod is, of course, well known in many circles, both athletic and beyond, and is the recipient of several awards including being a member of the Order of Ontario. Danielle, hello and welcome to the program. Your book is a couple of months old. Congratulations on the book.

Danielle:
Oh, thank you so much, and thank you; it's so great to be here today.

Joeita Gupta:
Hey, I've heard a wild rumour that you are about to get an honorary doctorate. Is that true?

Danielle:
That is a correct rumour, absolutely. Yes, I was actually, when we launched Resurrections in November at the University of Windsor where I'm from Windsor, Ontario, they surprised me at that launch by announcing that I was receiving an honorary doctorate in June; so very excited.

Joeita Gupta:
That is very exciting. Hey, tell me a little bit about how the name of the book came around; "Resurrections." What's that all about?

Danielle:
So for me, I worked with a brilliant writer named Marty Beneteau, and together we collaborated this story, and I really wanted a title that really spoke to just never giving up, and sometimes being knocked down to our very, very core and having to use everything we've had to build ourselves back up. And so when the title "Resurrections" was presented, I absolutely loved it because it hit something on every part of who I am as a mom, as a swimmer, as overcoming many different medical challenges. This was the perfect title for me and it really, for me is a word that just instills hope that there's still more after our hard times.

Joeita Gupta:
Why did you feel that now was the right time to write a book relating your story?

Danielle:
I thought that it was the right time because I have three young children. There's five in total, so two are from my husband's previous marriage, and they're 17 and 15. And then our biological children are three, sorry, six, three, and one years old. And I wanted my kids to know our story. I wanted them to get to hear it in Mom's words, and to just give a thank-you back to the community and to our country. When I was really sick after my daughter's birth, our country and our community rallied behind me and helped me to continue that fight to get home. So it's my thank-you letter to say thank you for that support.

Joeita Gupta:
When you had your third child, you did get very sick. You were on a ventilator and spent a long time in hospital. You've had numerous medical challenges. What was it about that experience in particular that might have been different for you or made it particularly difficult for you?

Danielle:
So I was diagnosed with muscular dystrophy at the age of two. So I always had that label and that title of living with a disability. You went to doctor's appointments and you knew that. You were checking strong muscles and finding out what muscles were weaker or what organs were needing a little bit more support. But what made this different is I went in having two very previous healthy pregnancies and deliveries with no issues and I fully had no expectation that after giving birth to my daughter, I wouldn't remember anything. And the first thing I would remember was waking up on life support. And so this was so different because A, it came so unexpected, and B, it was really that battle of using every skillset, every tool that you've ever learned or developed to really bring me back to my goals of getting home to my family. And really that greatest fear of waking up and your body's not working is what I experienced and had to keep pushing hard to get those goals of going home.

Joeita Gupta:
What kind of an impact did this have on your husband and on your kids? I mean, it goes without saying that it was a difficult time, but in what way was this experience transformative for them?

Danielle:
Yeah, I am blessed with an incredible partner who was my rock through all of this. He was the medical expert when I needed him to be that. He was my greatest cheerleader. He was that shoulder to cry on when you were having those dark moments of, "What's going on" and the fear. And he really stayed strong in being right by my side, but also supporting our family. My little kids, obviously, they're very adaptable and resilient, but they didn't quite understand why mom left to have a baby and was gone for so long. And my older kids really had to deal with the fear of understanding everything and not knowing and really relinquishing that control of, we just had a lot of wait-and-see time.

Joeita Gupta:
And you also said that the book that you wrote was a thank-you letter or a love letter to the community in the aftermath of this experience. In what way did the community come together for you?

Danielle:
The community was incredible. All over they were lighting candles. All over the country, we were receiving messages of people lighting candles, and sending energy, and prayers, and just helping to know that we were supported as well as we were receiving messages from as far as France and South Africa and all over. My husband was getting social media messages just saying, "We're praying for her," or "We're sending that positive energy for her. We're here if you need anything." You can imagine how dark and scary it is when you go to just have a baby and this happens, and to know you had a community rallying behind you was incredible.

Joeita Gupta:
Yeah, no, absolutely. It makes a huge difference to not have to do these things alone or to feel that you're alone in an experience like this. Shifting gears a little bit, you mentioned earlier that you co-wrote the book with another person you have with Marty, who's a well-known journalist in Windsor. What was that experience of writing your story with someone else like?

Danielle:
It was an incredible experience. I'd like to tell you I have the skill set to sit down in front of a computer and write a novel, but I was quickly found out when I did that, that I do not have those. I could talk for hours and hours, but to sit in front of a computer, I was watching that cursor blink thinking, "Okay, this isn't my strength." And so surprisingly enough, one year ago today, Marty and I didn't even know each other, and actually got connected through the University of Windsor where I did a talk for the MBA program.
And then I just had that courage and trusted that courage to ask him and say, "Hey Marty, would you consider writing my book?" I knew of him in our community. He's very well respected. And he said, "You're going to have to let me think about that one. It's not something that I've done before." So we met for a coffee and if you didn't believe in fate, we definitely, this story proves that our paths were meant to cross. And it was just a very unique relationship, being able to build that friendship and just feel completely comfortable to share my story and watch as he took my story that was inside of me and was able to put it to words. It was just brilliant, the experience.

Joeita Gupta:
And also a great deal of trust between two people because you're telling your story, but it is something I would imagine you would want to remain in your voice. So how would you say you've accomplished that in the book? So you have somebody else writing your story, but you'd also probably want it to sound like you.

Danielle:
Absolutely. So it was really important for us, one of our main priorities, that the book stayed real and raw and in my voice. The forward is on the only part that is not in my voice. And so I think by really just getting to know each other, and talking, and Marty put in incredible hours of dedication and work to making sure that it stayed in my voice and that it was something that I would say even right down to the humour that's in there is right straight from, if it didn't come out of my mouth in our meetings, it is not in that book. So it was quite unique how he was able to. It is our biggest joke between the two of us, how a man in his '60s is able to channel a female in her '30s. And so we made it work, and we're just really, really proud of the end result.

Joeita Gupta:
Yeah, no, it's a great book. I've started reading it, and I wanted to actually finish it. And I almost pulled an all-nighter yesterday to finish it, but then I said, You know what? You're probably no good at this interview if you fall asleep on your keyboard." So I'm going to go back and finish it over the weekend, but tell me a little bit about what sort of feedback you've gotten about the book.

Danielle:
The feedback has been unbelievable and almost makes me speechless. The book is doing incredible, and I'm so thankful. Some of the most impactful feedback I've heard is just how so many people from so many different walks of life are able to get something out of it, and it really meets you where you're at, and you can connect with different parts of your own story. And to me, that was incredible and is so important because I really am no different than anyone else. And so being able to share the gift of my story and hear that it's inspiring people to get through their own struggles or to hear someone say to me, "I know somebody going through a really hard time, so I gave them a copy of your book." And then to find out that that has assisted in them moving forward in a positive way is a greater impact than I could have ever imagined. So I'm just really, really thankful.

Joeita Gupta:
But of course. Your journey begins in a lot of ways with swimming. And so how did you find swimming? I mentioned in the opening essay that my parents signed me up for lessons, and I didn't quite take to it right away. How did you get involved with swimming?

Danielle:
So we have that in common. My parents, being diagnosed with muscular dystrophy at a young age, my parents really wanted to strengthen those good muscles. My neuromuscular disorder affects my lower extremities, so running, and jumping, and things like that were difficult. So as much as I pushed through and tried to be in hockey, and dance, and do everything my older brothers did, it wasn't my area of freedom. And like you said, it was barrier-free in the water, and so they actually put me in the water to start for physio.
And I instantly loved the water. It is a joke because neither one of my parents really liked swimming, and we joke that my mom we're pretty sure doesn't even get her face wet in the shower; that's how much she hates the water. So when I just took to it and loved being in the water, they quickly saw that this was going to be an environment where I was limitless, and I could set my goals and achieve those goals. And so swimming just progressed naturally where I was the same as doing the swimming lessons as kids my age. And then it was a coach that recognized my love for the water and had asked my parents, "Have you thought of competitive swimming?" And that's how my journey began.

Joeita Gupta:
Is it different once you are competing? Does it change your relationship to the sport?

Danielle:
For me, I only grew to love it more. I loved the adrenaline before the races. I loved that moment of diving in the water and the outcome is unknown and pushing your body to its absolute limits. For me, it was the best part of getting to be involved in the sport.

Joeita Gupta:
Is there something about swimming that might help you think differently about your disability? I guess the way that maybe it was a clumsily phrased question, but is there something about being a swimmer, setting those goals, working to achieve them that may have changed the way you look at yourself as a person with a disability?

Danielle:
Absolutely. I found that throughout life we always living with a disability, we meet that world of making it work for us or having to fit into those oddly-shaped accessible ways. And for me, being able to take those struggles and take those difficult moments and throw them in the pool and turn it into "Watch what I can do"... I was often having difficult times as a little kid I remember at recess with bullying and stuff. And then I could go pound that out in the water and be the same as everybody else in the water or just have the freedom to allow my body to move the way my mind wanted my body to move. And so I'm so grateful to the gifts that I received from being in swimming because it let me have a place where I could really be in control of my body, where oftentimes I found I had to adapt to my environment around me where when I was in the water, I was in control of that environment.

Joeita Gupta:
Do you think that we provide enough supports for Paralympians, especially swimmers who might want to represent their country internationally?

Danielle:
No, I definitely think we can always do, do more. I'm so grateful to the family and the sacrifices that my family made. We always talk in our family for the longest time we had no living room furniture because my parents had an empty room in the house, but we're paying for my swimming career. And so I really think it's that moment before you make Team Canada where you've got to get good enough to be on Team Canada. And I'm sure our Paralympic athletes could be supported even better when they are on Team Canada, but it's that up-and-coming. It's having the resources for those athletes that would be the next best swimmer for Team Canada but maybe can't get there because of barriers holding them back. We know living with a disability, we have added expenses and difficult things in that nature, so being able to really support those up-and-coming athletes I think is really important.

Joeita Gupta:
You also work as a social worker. Tell me about how you find that work and what jumps out at you in terms of the work that you do as a social worker and some of what you have accomplished as an athlete; I wonder if there's any sort of connection or parallel there?

Danielle:
For sure. I mean, as an athlete it was all about setting goals and achieving those goals. And as a social worker, I'm just so honoured that I get to walk alongside people's journeys when they are maybe struggling to identify their goals or to identify what brings them joy and to help walk alongside them so that they can identify that and define their own success. So for me, it was a natural fit to go into something like social work and bring my experiences as a swimmer, and as a mom, and as a woman, into my work as a social worker.

Joeita Gupta:
Oh, I meant to ask you, you said your parents aren't really big into swimming, but I'm assuming you've passed on the genes to your kids?

Danielle:
They love the water. I don't have any official competitive swimmers as of yet, but that's okay. I've learned hockey and soccer, so I'm adapting. But come summer, my kids are all in the pool all day long, so it is great for easy bedtimes. So right now that is happy enough for me.

Joeita Gupta:
That's great. Your book is self-published, and I wanted to ask you a bit about what that journey was like.

Danielle:
That journey was raising a toddler. That is how I like to... One minute everything's going great, and the next minute you're just trying to find a pair of socks. That is the best way that I could describe self-publishing. We were really excited to get to. It was a learning curve. Neither Marty and I had ever done anything like this before and it was like, thank again to my husband, and his amazing team, and friends that came on and helped us be able to do this. But yeah, it was really an adventure. When we finally hit that publish button for the first time, it was such a great accomplishment, and I was terrified all at the same time. I hope this is... We did it; and then constantly making sure you were backing up that file so you didn't lose the book.

Joeita Gupta:
I think we've all been burned by that. You mentioned in our conversation earlier that the book was meant to be from you to your kids, to be able to tell our story you said in your own voice and in your own words. As a mom, knowing that your kids were going to read that book someday were there things you hesitated putting in there?

Danielle:
I thought about it, and then I thought about we're all embarrassed by our parents at some point, so why not just have it in writing? No, I really am truthful when I say it's real. It's raw and I'm just really... I had a lot of courage and shared. And I'm sure as they get older I'll get to hear from them what parts they don't like. My teenagers are... There are pictures in the book and so the teenagers are always like, "I can't believe you put that picture in." But yeah, in the end, I really didn't hold back. I really just let my story be told and allowed whatever. Whatever feedback comes from my kids, I will deal with at the time.

Joeita Gupta:
Well, the best way to hear your story is, of course, to have a bit of a listen. Now, you've got an excerpt you'd like to read for us. So why don't you go ahead and set it up for us and read a bit from your book?

Danielle:
For sure. I would love to read the forward to you because this is one of the very first things that Marty shared with me. And this was after reading this, I knew that I had picked the right person to help share my story. So this is the only part of the book that isn't in my voice, but I'd love to share it.
So it says, "For every hour of her infant daughter's life, Danielle Campo McLeod has spent, by her estimation, 30 minutes in a hospital bed, surgical suite, rehab facility, specialist's office, waiting room, or ambulance, often with her life hanging in the balance, week after week in survival mode, unable to be Morgan's mom. The Canadian Paralympic gold medalist and world record holder has run the gamut of miraculous recoveries, followed by devastating setbacks, reunions with her husbands and kids, followed by gut-wrenching goodbyes, bags packed for the emergency room; first name basis with the nursing staff, a human pin cushion of IVs, blood samples, drains, and antibiotics; 21 days in a hospital bed after complications from a post-delivery bowel surgery, three surgeries in three weeks, septic shock, five days in an induced coma, more surgeries, more setbacks, and more tears when the doctor said, "We're so sorry, but we're losing, Danielle. You need to say your goodbyes."
While the threat of medical calamity hangs over Danielle, her husband Denny, and their household, it has met its match in Danielle's steely determination to survive. She will witness Morgan's first steps. She will teach her kids to swim. She will well up with pride when they take their Roman Catholic sacraments. She will cheerlead when they graduate college. She will watch Denny walk Morgan down the aisle and party like a rockstar at the reception.

Joeita Gupta:
That's beautiful.

Danielle:
Thank you.

Joeita Gupta:
It's really expresses who you are, and I can see how you weren't just incredible, but wonderful friends to each other.

Danielle:
Absolutely. We have-

Joeita Gupta:
The warmth and the-

Danielle:
Yeah, absolutely. We've developed quite a wonderful friendship through all of this. So what better gift could you ask out of that?

Joeita Gupta:
It's a beautiful book and a gift to readers everywhere. Where can we get a copy?

Danielle:
Absolutely. So we're very excited. You can get a copy on Amazon. So Resurrections is available on Amazon. You can also go to my website, which is DanielleCampo.com and purchase a copy there. If you're in the Windsor area, there are many local bookstores, River Bookshop in Amherstburg, Biblioasis, and also both Indigos in Windsor and Tecumseh are carrying the book.

Joeita Gupta:
Danielle, it was so great to talk to you. Thank you very much for sharing your story. Your candour, your humour is deeply appreciated, and I hope you will someday write another book.

Danielle:
Well, thank you, and hopefully, if Marty agrees, we'll be on to round two. Thank you so much.

Joeita Gupta:
Danielle Campo is the author of Resurrections, My Will To Survive, which you can, of course, pick up on Amazon, DanielleCampo.com, or at a local bookstore in Windsor, in or around Windsor if that's your cup of tea. And of course, it's always good to read a book and curl up with a good cup of tea, especially as the winter months are dragging on a bit. So this is definitely one to read or to gift to somebody in your life who is a reader.
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