Lake Erie Swim for Crohn’s disease and ulcerative colitis – 1st Attempt.
Blackness. There is nothing but blackness. All around me – all I see: blackness. Then for a brief moment my right hand comes into view. Moving in methodical motion. It comes close to my face then disappears again. And then my left hand. Every direction: out, down, around, in-between – there is only blackness. I lift my head from the water. Stopping my forward motion. I look to my right to the only thing I can actually see – two glow sticks hung off the side of my friend’s kayak.
“Am I okay?” I ask into the darkness.
“You’re doing fine, Ryan. Just keep going.” My friend and coach, Eric, answers back.
I plunge my head back into the cold water and begin again the methodical motion of swimming. I try not to think about the cold. The relentless, all-around-me, unable-to-escape-from-it cold. Then a question flashes through my mind: “What the hell am I doing here?”
“Here” is Lake Erie. Shortly after midnight on Saturday, July 27th 2013 I left the shore of Longport, Ontario Canada and began swimming for Pennsylvania. In total a 24 mile trek lay before me. Our goal was to raise awareness and funds for Crohn’s disease and ulcerative colitis. They each fall under the umbrella of IBD (Inflammatory Bowel Diseases). Doctors and scientists don’t fully understand why these diseases occur but their main characteristic is inflammation of the digestive tract caused by a person’s immune system attacking itself. What is known of IBD is that there is no cure.
Before I pushed off from the shore of Canada my nerves were electrified, a jumbled mess of exposed wires crossing and uncrossing. It was the same four years prior when my journey with Crohn’s disease began. Honestly I wasn’t quite sure what to expect then and staring out into the blackness of Lake Erie I didn’t know what to expect now.
Hours before my coach and the captain of the boat we had rented had called. “What do you think about a night swim?” they asked me. You see the weather forecast for Saturday afternoon was nasty: thunderstorms and lightening. Under those conditions I would be pulled from the water; the swim cancelled. Sunday’s forecast wasn’t any better. But Friday night into Saturday morning – that was promising. So, we decided to go for it.
Hours later, bobbing along in the cold water, again the question pushes itself forward in my mind: “What the hell am I doing here?”
I look forward to the support boat. I can barely make it out in the distance. A lone light shines backwards from it onto the water. I’m looking for my son. I can’t see him though. Mostly because of the dark. Partly because without my glasses I can barely see anything. I had never planned on a night swim. I usually swim with prescription goggles but they are tinted and meant to be used during the day. I had to change to a clear pair of Swedish goggles and the dark coupled with the non-prescription is a double-whammy to my ability to see.
The light on the support boat lurches up and down. The 34 foot Trojan is encountering some steady waves.
I’m looking for my son because he is one of the reasons I am attempting to swim these 24 miles across Lake Erie. He doesn’t have Crohn’s. I am the one with Crohn’s. But if I am to believe the science – he has a 25% chance of carrying the genes. Genes that I could have passed on to him. Every day since my diagnosis, March of 2009, I have hoped and prayed that this is not the case.
I again put my head down and continue swimming. I pick up the pace. The cold keeps creeping into me, zero to my bones. I’m starting to get concerned.
“What are you doing, Ryan?”
“Swimming.”
“Why?”
Why?
I’m swimming for those who cannot. For those who are living on their couches. Stuck in their bathrooms. Chained to a hospital bed that they never wanted to be laying in. Tethered to an IV tree. I’m swimming for all my fellow IBDers. The ones I have met on Twitter and Facebook. The ones who have shown me I am not alone in this journey. This journey known as an auto-immune disease. A disease with no cure. A relentless beast that comes in and takes over our lives. Causes us to put so many things on hold. And just flat out takes other things away. Our happiness. Our identities. Diseases that require surgeries (which also don’t cure us). Sometimes multiple surgeries. Diseases that also bring with them fistulas, abscesses, constant fevers, night sweats, drug induced lupus, thrush, fatigue, anemia, blown veins, vitamin deficiencies, destroyed joints, extreme unhealthy weight loss. The list goes on.
And so I am swimming to raise awareness. The only thing is, I’m not swimming very well.
“Sluggish why am I so sluggish?”
An athlete knows his body. And I know that I am not on my game. I completed several open water trainings before attempting this swim. Several in Lake Erie and Lake Huron. Here’s the thing: early on there is always one wave that catches me off guard. I end up swallowing that wave. It takes about ten seconds of coughing and gagging to get over it and then I get on with the task at hand. One wave and then I adapt. One wave and soon after I slip into a Zen like state. Of course that is when I can actually see the waves coming at me. So far into this swim I have swallowed five waves. I can’t find my groove. There is a disturbance in the force. Dr. Evil has stolen my Mojo.
It’s around 5.7 miles into the swim and I realize I’m just not going to make it. At least not this time.
This hits me hard. Anger comes flooding in. All the training. All the anticipation.
As I swim the last 200 meters to the boat another thought flashes through my mind.
“You were doing this for yourself as well.”
Crohn’s has taken a lot from me. My colon for one. My strength. My weight. My muscles. That silly belief from my youth that I was immortal. A belief I carried with me into my 30’s.
Having your body break on you is a terrible thing. I spent two years shuffling between three rooms of my house: the bathroom, the living room, the bedroom. I missed out on weddings, long weekends, conversations. I lost friends. Saw a drastic change in the relationship with my son. My skin almost fused with my couch as if it were a new appendage.
Crohn’s has broken me twice, first my body and then my spirit. I was doing this swim because I had vowed “Never Again”. Never again would I allow Crohn’s to rule my emotions and my body as it had the first two years after my diagnosis.
I think about the early days after diagnosis – standing in my bathroom, looking into the mirror and hating who I saw staring back at me. The sick guy with a mess in his underwear because his fistula had discharged again, the third time that day. Just another thing I couldn’t control.
The guy who got up eight, nine, ten times a night to go to the bathroom.
The guy who was a 120 pound weakling when they told him he had to have his colon removed.
The guy who cried when the Stoma nurse came into his hospital room to educate him on just what a stoma and a pouch were.
The guy who cried even harder when she pulled out an innocent little Sharpie and began to draw the location for his stoma on his stomach.
The guy who cried even more as they wheeled him down to his ileostomy surgery. A 15 minute trek filled with fractured and frantic conversations with God.
The guy who broke down when the young man prepping him outside the OR asked “Who is here with you today?” as he could barely say his wife’s name, because he was thinking he would never see her again (and he hated thinking that).
The guy who for two years before that surgery could barely get off his couch. Who swallowed over 5,000 pills. Injected himself with poison. All in an attempt of getting back his health. Of returning to normal. All in vain.
As I climb onto the back of the boat I ask my friend Chris if he wants to go in. We had always planned that if I couldn’t complete the swim myself we would turn it into a relay for IBD. Chris was game and got ready. He made it another two miles before we had to pull him from the water. At that point we were encountering eight foot rolling waves coming directly at us. The captain was nervous as was I. I told him we were calling the swim.
Earlier that evening going over to Canada it took us just over an hour to go the twenty-four miles. We swam back toward Pennsylvania a total of eight miles. It took us over two hours to motor back the remaining sixteen miles to the marina. The wind and waves were relentless.
Even though my first attempt to swim Lake Erie was a failure I WILL be back. I have to wait until next summer as I need to build back up our funds for renting the boat (our greatest expense). I’ve told my wife that I have to accomplish this goal. Lake Erie is just like Crohn’s now – both are swirling about inside of me – both part of my DNA.
My name is Ryan Stevens… and I am a swimmer. Are you a swimmer too?
My blog: www.crohnsguy.com – information on how to donate for this cause can be found on the page: LAKE ERIE SWIM.
Information about Crohn’s disease and ulcerative colitis: www.ccfa.org
My Second Attempt to swim across Lake Erie = Summer of 2014