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Die Another Day
By Tom Demerly.

 

At 6:59 P.M, October 6th, 2008 I put a post on my favorite triathlon forum, Slowtwitch.com. It read:

“First Migraine Headache: OK, I'm impressed.
For every person whom I've ever doubted the severity of this- man, it is not good. I feel terrible. My head hurts like it never has and I am having trouble seeing. I tried riding my bike to go to the bank and get something to drink- horrible.
I hope I never have another. Horrible. On a scale of 1 to 10 this is a solid 8. Ouch.”

I did not know it then, but I was having a stroke. A birth defect allowed a blood clot to pass from one side of my heart to the other. It made its way to my brain. It shut down part of my vision and began to kill my brain.

I spent the following four days in the hospital while doctors figured out what was wrong with me. From their faces and comments (or lack of them) I was in deep trouble. They put me in a room at the end of the hall by myself. My friends dressed nice and came to see me. They brought me books. Short books. My wife moved into my room in the hospital and they let her stay. Bad sign.

I was scared.

After days of tests, trips to the CAT scan machine and unsavory theories about why I had a stroke they laid me on a table, rubbed an ultra-sound sensor on my chest and put me on an I.V. line. As we watched my heart beating on the television screen the nurse told the I.V. tech to shake the bag, aerating the fluid and sending bubbles into my heart. In theory the bubbles should stay on one side of my heart. If they didn’t, there was a problem.

The bubbles didn’t stay on one side of my heart. The entire inside of my heart went white with bubbles. The nurse said, “Stop the test. It’s positive”.

I had a birth defect I was never aware of, a Patent Foramen Ovale, or P.F.O. A P.F.O. is the failure of a small flap that closes the upper chambers of your heart. The flap is supposed to shut the moment you are born. It permanently grows shut isolating the arterial and venous chambers of your heart. In people with a P.F.O. the venous side leaks to the arterial side. If a clot passes through the leak and reaches your brain you have a stroke. That’s what happened to me.

In over 200 triathlons, the longest adventure races on the planet, visiting all seven continents and climbing the highest mountains on three continents along with being in military special operations this had never created a problem. This time it almost killed me. It simply didn’t make sense. As I explained this to doctors, one after another, they looked back at me with a blank expression and said very little.

Until I met Dr. Samir Dabbous.

Dr. Dabbous lost his father to heart disease when he was 13. There were no transplants, no surgeons available to him. Samir Dabbous dedicated himself to making sure that didn’t happen to anyone else and he grew up to became Dr. Dabbous.

To Dr. Dabbous it was a simple matter: There was a hole in my heart, he’d put a patch on it. I’d be fine. Problem solved.

A week later I lay on a table in Oakwood hospital, naked and cold, surrounded by television monitors. Dr. Dabbous came in the operating room wearing some kind of space suit. There was a large group of people in the room also dressed like astronauts. He said hello and I fell asleep. When I woke up there was a patch inside my heart. The thing looked like it was made out of plastic and staples. It seems to work fine. There is a little “tick” in the upper right hand corner of my visual field, an odd, blurry gray blob that I mostly don’t notice anymore and that I convince myself is becoming transparent. It sometimes takes months for a stroke patient to regain their vision completely. Most times they never do. I won’t know for awhile. In the mean time I can still see the sunset, the sunrise, airplanes, animals, the water, my wife… I lost a bit of short term memory from the stroke. When I got home from the hospital I quizzed myself incessantly: Did I remember how to identify airplanes? The scientific names of sharks? Authors’ names? Book passages? History? I tested myself. Despite the fact that I couldn’t remember how old I was (I’ve never paid much attention to that) I remembered a junkyard of facts I’ve somehow come to know from teachers, friends and childhood books. I was alive and everything worked. I wasn’t paralyzed. I wasn’t “locked in” my own body without the ability to move or speak. I had dodged a bullet. Somehow, God had let me off easy.

I’ve been afraid to mention I survived a stroke. I’m scared people will think less of me, that there is something wrong with me. If I don’t think about this whole thing perhaps it will fade into the past. I’ll forget about the part they installed inside my heart. It will heal into place and do its job. It will be just another thing that happened to me. Another thing I lived through. As I bang through a day of bike orders, writing web content, training for the upcoming triathlon season that is what it has become- just a memory, more distant with each day. Thankfully.

For better and for worse having a stroke and heart surgery is a part of who I am now. It’s an experience I own. Now I’m deciding what to do with the experience. Steven Covey wrote, “Between stimulus and response is our greatest freedom; choice.” The reality is that I had a heart defect and stroke and survived both, now I decide what to do with the outcome.

During my research on this new reality I discovered a group on Facebook.com called “Young Stroke Survivors”. People who suffered strokes recounted their stories of survival and coping with the affects. It was a sobering reality check. “I can move my right shoulder now”, “I can walk again after two years”, “I take every day a day at a time…” The stories were heart wrenching and terrifying. I had gotten off so easy…

My stroke left me with no serious side effects- the overwhelming exception. I was unbelievably lucky. Worldwide stroke is responsible for 4.4 million deaths per year according to the Stroke Statistics at http://www.theuniversityhospital.com/stroke/stats.htm. Only 10% of stroke victims recover “almost completely”. That is the category I’m in, and I’m at the top of that one. Someone dies from stroke in the U.S. every 3.3 minutes, the number 3 cause of death in the U.S. and is the leading cause of disability among adults.

Before this happened I gave no thought to my vulnerability, no thought about what it would be like to be less durable. I was a triathlete. We don’t have strokes. I didn’t consider what it meant to be a “stroke victim”. For that matter, cancer survivors, heart disease patients and stroke victims probably never consider their response to a potentially deadly or disabling health problem before it occurs. It has happened to me and I am a survivor.

I’m incredibly lucky. Few people survive a stroke and heart surgery with little or no disability. I waited to write about this until after I was certain I had no disability- until I was sure I survived. Until I was sure I would live. Until I knew I was alive.

My standard for “survival” is high, opulent by most people’s standards. I wanted my life to be the same as it was before the stroke. I wanted to be able to train and race like I did before. When I read other stroke survivors’ aspirations to walk again, to use their arm again or to speak again I’m humbled- and terrified. My aspirations for recovery seemed absurdly high. I am absolutely thankful for the basic things, these privileges- the ability to think, see, walk, use both my arms and speak. I took them for granted before, I don’t anymore.

I lived. I survived a stroke and heart surgery.

My life has been a disjointed collection of weird survival episodes. This is simply the latest chapter. I have been inexorably lucky. I’m not a religious fellow in that I don’t go to church or pound the cover of a bible or the Koran but you better believe, after this blew over, I got on my knees…

Why did I fair so well with a stroke and heart surgery? I recently read a book about people who survive airplane crashes, ships sinking and other catastrophes. In the book is a test you can take to see if you are a “survivor”. I have my own ideas about what makes a survivor but this test addressed none of them. They didn’t ask if I knew how to start a fire in the woods, how to find food, how to build a shelter. It was an odd assortment of questions about people and life. I scored in the top 3%. The book is, The Survivors Club: The Secrets and Science that Could Save Your Life by Ben Sherwood.

Survival is partly about coping, mostly about luck, a little about preparation, a lot about people helping you. Years as an endurance athlete after being an obese child likely made my medical treatment simpler, the surgery easier. I was extremely fit when I had the stroke (it hit me after a training run) so I recovered quickly. Being in the military ingrained a response to try to live no matter what the cost. I had the best medical care in the world only a half mile from my home at Oakwood Hospital. My friends knew the symptoms of stroke even when I didn’t and they knew me well enough to force me to go to the hospital when I had symptoms. My wife stayed in the hospital with me and shuttled me to doctors’ appointments after the surgery. Even my cat slept on my chest after my heart surgery.

During one of the lowest points in the episode the ability to simply visit another place mentally helped me through it. About 2000 of my favorite athletes also joined me to help me through it. Or, more correctly, I joined them.

If you’ve ever had a CAT scan then you understand the true meaning of claustrophobia. Forget submarines, forget airplane bathrooms. A phone booth seems like a football stadium compared to the inside of a CAT scan machine. I had four CAT scans in two days. I didn’t make it through the first one. The machine is a gigantic tube they slide you into up to your knees. It hums and buzzes louder than is comfortable. I had to spend 45 minutes to an hour in the CAT scan tube each time, with a brief respite to inject various radioactive dies into me. When they slide you into the machine they give you a little panic button to press in case you freak out when you’re in there. I last about ten minutes on the first try. On the second try they drugged me. On the third try I was determined to make it on my own, with help…

I went into the CAT scan machine for the third time on Saturday, October 11 at about 12:04 P.M. in our time zone. Five time zones away in Kona, Hawaii, almost to the moment, the Ford Ironman World Triathlon Championship was starting. The cannon went off. The swimmers entered Kailua Bay and started swimming. The wheels under me on the CAT scan squeaked and I went into the tube and closed my eyes. Then I changed channels in my brain, flying roughly 4,000 mental miles to Kailua-Kona. I started the swim, walking into the bay at the back of the mass swim start, and started swimming… The water was clear and beautiful. Fish startled by the starting cannon darted away from the swelling mass of swimmers. A SCUBA diver pointed an underwater camera up at me. I couldn’t remember if I had started my stop watch but I told myself, “just keep swimming… don’t look up.” There was a loud whirring noise around me; it may have been a camera helicopter… Inside my head I kept swimming.

My wife and friends were all there, many of them racing too. I was determined to keep a straight line to the first turn boat. I lined up on a swimmer’s feet in front of me and kept my head down, reaching, rolling, stroking in the warm, buoyant salt water. Even in 40 feet of water I could clearly see the bottom as the first turnaround boat, a large catamaran, came into view underwater.

I did the Ironman World Championships in 1986, more than 23 years ago. I’ve probably seen one of the Kona race videos nearly every week since then. It was a familiar place, my friends were there.

After about 56 minutes, a new P.R. for me in the swim, they rolled me out of the C.A.T. scan tube. My wife was standing there. I told here my arms were tired.

After the entire drama was over, the heart surgery was done; I was back in the store. I was out running. I was in the pool training. It was over. I lived. Apparently I’ll die another day. And I’m very pleased to say I’ll see you at the races.


 

 

© Tom Demerly, Bikesport Inc.
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