FREQUENTLY ASKED QUESTIONS

About Me, About CP & About Life

WHAT DO YOU DO IF YOU HAVE TO GO TO THE BATHROOM IN THE MIDDLE OF A MARATHON SWIM?

Believe it or not, this is one of the most common questions I get when speaking to groups about marathon swimming. So much so that I usually use it as an icebreaker at question time. The answer is a surprisingly simple one: you do what the fishes do. :)

Because your body is burning so much energy keeping you afloat and propelling you forward, it's very unlikely that you will have to do anything other than pee (which is actually a relief when it's the middle of the night and you're freezing cold - its a way for you to experience a few fleeting seconds of warmth! lol).

WHAT'S IT LIKE SWIMMING AT NIGHT?

Honestly, it's a little freaky at first, but the reality is that you are rarely ever 'alone' during a marathon swim - especially at night.

I practiced swimming in the dark with my coach before the marathon, so I was pretty used to it by 'go time'. To ensure the swimmer's safety, you start the swim with military-grade glow sticks tied to the back of your bathing suit - this way, even if the waters are rough and it's the middle of the night, your crew members can spot you in the water. You are also accompanied by two kayaks - one on either side - a sail boat out front (plotting the course), and a power boat behind. Plus, there are zodiacs (smaller dingy-like motorized boats) running interference with other boat traffic. The boats are filled with crew members who alternate shifts in the kayak. There is always fresh energy, noise, and life on the boats.

I selected my crew members strategically - friends and family who I knew could handle the physical exertion, but also the mental exertion and exhaustion. For 32 hours and 18 minutes (save a few here and there) they sang to me, cheered for me and prayed for me.

In the middle of the night, no matter how dark it was, they were a constant light and beacon of hope.

HOW DO YOU EAT DURING A SWIM?

For me, eating presents a bit of a bigger challenge than for most, because I don't kick when I swim. This means I would stop for 30-45 seconds every hour-and-a-half or so, and scarf down a granola bar or fruit cup and a sippy-cup full of water.

To keep myself afloat, I would turn my back to the waves, tread water with one hand, and eat with the other. The reality is, you have to be prepared to consume a lot of lake water - it just comes with the territory.

IS IT HARD TO SWIM WITHOUT USING YOUR LEGS?

Not for me! It's just the way I've always done it. For you, it might be very challenging - for me, it's what I'm used to.
Plus, you should see the size of my arms - who needs legs when you have tree trunks coming out of your shoulders? ;)

WHAT IS CEREBRAL PALSY? WILL IT GET WORSE?

1) According to Google, "Cerebral Palsy (CP) is a group of permanent movement disorders that appear in early childhood. Signs and symptoms vary among people and over time. Often, symptoms include poor coordination, stiff muscles, weak muscles, and tremors."

I have the kind of CP that makes my muscles tight. It mostly affects my legs and core, but is also present in my hands and arms. As a person with CP, I burn 2 or 3 times more energy doing everyday tasks (such as walking or climbing stairs) than a person without CP would. CP is usually present because the brain experienced some kind of physical injury or trauma (brain damage) during or shortly after birth. There are many types and severities of CP. Mine is middle-of-the-road in terms of severity, and I have worked very hard (through exercise, corrective surgeries and various modes of therapy) to increase my mobility and strengthen my muscles.

CP is also often accompanied by a learning disability (LD). In my case, I have a non-verbal learning disability (meaning it does not impact my verbal communication or language skills). My LD is math and spacial related. This basically means that thanks to CP, I have a documented reason for being atrocious at math, and that I am extremely thankful for the invention of the GPS. When we travel together, my friends like to joke that if I tell them to go a certain way, chances are they should head in the opposite direction.

2) No, it won't necessarily get 'worse' but, as with any muscle, if you don't use it, you loose it. That means I have to work hard to maintain the strength and flexibility my muscles have gained. That's why, even though I don't swim competitively anymore, I still go to the pool or the gym (sometimes both!) every weekday.

DOES IT HURT?

This is a tricky one, because everyone's experience with CP is vastly different. I'm 29 years old, and I can honestly say (based solely on my own experience) that I have not experienced much pain associated with my disability. That might be because my pain tolerance is relatively high, or because of the way that CP affects my body. It's probably a little of both.

Sometimes, because my muscles are tight, I experience involuntary cramping (like a charley horse). That hurts, but I'm pretty used to it.

My body doesn't handle cold well, and I can experience extreme muscle spasms if I get really, really cold.

My neck muscles are tight, so I get pretty frequent tension headaches.

I also loose my balance more frequently than most humans my age, and falling can be painful, but I've become pretty good at falling... you might say I've perfected the art of falling gracefully. lol.

Surgery also hurts, but sometimes you have to experience pain in order to appreciate the gain that follows.

I'll be interested to see how CP affects my body as I age. I know people experience aches and pains associated with aging, but I don't know a lot of older people who have CP (CP does not impact life-span, so far as I know, it's just more talked about when you are young - there are very few resources (doctors, specialists) who work with adults with CP). I found a really great doctor with expertise in CP in Ottawa, ON. If you or someone you know is looking for a CP specialist around the Ottawa area, email me!

DO YOU WISH YOU WERE ABLE-BODIED?

Again, great question, but hard to answer! My immediate answer is no; I am thankful that God made me just the way I am. I realize that my response is one one that reflects my privilege; I grew up in an incredibly supportive community that taught me (with near annoying zealousness) to believe in myself, to pursue big, hairy, audacious goals, and to never let anything - least of all my physical limitations - get in the way of my success.

I strive to be comfortable in my own skin, and I am confident that God gave me CP for a reason. I believe He wants me to be privy to a unique perspective, and to use my uniqueness to positively impact the lives of others.

Have I always felt this way? No, certainly not every minute of everyday. I strive to love my body as it is, but I don't get it right all the time.

In my late teens, I dated a boy who told me he loved me and wanted to marry me.

A few weeks later, he called me on the phone and told me he 'couldn't handle my disability'.

That was the end of our relationship, and the first time that I was forced to confront the idea that I wasn't good enough.

Why had God made me this way? What was the point? Would I ever feel like myself again? Would anyone ever want me?

It took me a number of years to recover from that blow to my self esteem. I don't like to admit it - I like to look like I have my stuff together - but I was devastated and confused. More than anything, I struggled with my identity - who was I meant to be?

If I wasn't good enough this way - if I wasn't good enough as me - how would I ever be good enough for anybody?

Thankfully, God is faithful, and my community is amazing. I slowly remembered who I was made to be (see Psalm 139), and I recognized the immaturity of a 20-year-old boy.

I'm still learning (and re-learning) how to embrace and celebrate my differences - especially through the eyes of those who don't know me - but I am getting there. I want to use my experience to help others, and champion for young people who struggle with insecurities and low self-esteem.

No one has the right to take your value away from you. You are radiant. A shining star. You are beautiful, valued & eternally loved. You deserve to feel like the masterpiece that you were created to be.

If you happened upon this site today and need someone to talk to, please reach out; my email is at the bottom of every page.

You are worth fighting for & you are not alone.

CAN I HELP YOU?

I will never turn away a well-intentioned helpful hand. Having said that, as a general rule, I recommend consulting with the individual you are trying to help. They know their situation best, and will likely be able to advise you whether or not your help is welcome.

***I am am only one human, with one set of experiences and expectations. I cannot speak for every person with a disability. Humans are as numerous and diverse as the sands of the sea, and our reactions may be just as varied.

I HAVE A QUESTION ABOUT (...) IS IT OK IF I ASK?

Just like I will never turn away a well-intentioned helping hand, neither will I turn away a curious soul who is looking to learn. As humans, one of the most powerful things we can offer one another is the opportunity to learn about our experiences of humanness.

If you have a well-intentioned question, please ask; I am glad to offer my perspective (see *** above). If for some reason I feel uncomfortable or ill-equipped to respond, I'll let you know and point you in the direction of someone else who may be able to help.

The unfamiliar is scary sometimes, friends. Let's dive into the deep end together and embrace learning and growing through the sharing of lived experiences.