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
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
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
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.