Finding Myself

Last Sunday, I turned 54 years old. I know that it's not one of those MAJOR birthdays...not like turning 18 (when you can vote), or 21 (when you can legally buy a drink) or even 50 (that's half a century for lords sake!). Most people don't even really pay attention to turning 54, it's just one of those years that slips by unnoticed on the march towards the dreaded 60; the years in between are unceremoniously ignored. But for me, this year will be one of those years I remember for a long time.

Back in 1959, because of my congenital heart defects, my parents were told I wouldn't live past the age of 5. So when I turned 4 years old, they let Nana take me on a train trip from Los Angeles to Salt Lake City. They all wanted me to meet my relatives, believing this would likely be the first and last chance. It was a big trip back then for a 4 year old and one I still vividly remember...but that's a whole other blog.

I've never been one to like being told what I could or couldn't do. Even as a child, when my parents or my doctor said I "couldn't" do something, I would go ahead and do it anyway (just not in front of them!). So when I turned 50, after having undergone 2 heart surgeries and surgery to correct a brain aneurysm (who knew!), I congratulated myself on living 45 years longer than anyone thought I would. Not only 45 years longer, but stronger, fitter and healthier than the vast majority of my contemporaries. I had run a half marathon, ridden the "Hotter 'n Hell 100" - an epic 100 mile bike ride on the hottest day of August in Wichita Falls, Texas (maybe not the smartest plan, and definitely another blog) and made a career out of teaching people how to live longer, healthier and fitter lives. I talked the talk and walked the walk and was proud of it. I had beaten the odds. I was no longer a "heart patient" and was looking forward to reaching at least 100 years...I figured that since Nana lived to almost 98, I had a good shot at it (I may be a bit competitive)!

Just a short 11 months later however, a mere blip in the span of my life, I found myself lying in the cardiac intensive care unit, after having undergone my 3rd open heart surgery (I hadn't really seen that one coming), completely paralyzed on my left side after having sustained not one, but two strokes during the surgery. When the neurologist stood there and told me to move my foot, my leg, my arm, no amount of effort or force of will would make them move. I thought that my life as I knew it was over. But after 18 months and 2 more surgeries (yes - more surgeries - lots more blogs to write!), a pacemaker, medications and a very near death experience - I was doing okay. The paralysis had resolved and I had the use of my left side back. We picked ourselves up, dusted ourselves off and started all over again, by moving across country to the great northwest...Portland, Oregon.

As soon as we got settled in, we went for my first bike ride since my last heart surgery. I was so excited I could hardly stand it! We got our hybrid bikes all cleaned up and "urbanized" with fenders and panniers - we were ready to ride around the "bike friendliest city" in the country! That day, we only rode for about 8 miles, but it felt like 100 to me. The excuse I used and told myself was that my shoulders hurt too much to continue. Which was in fact true - I had 2 frozen shoulders as a bonus to all the surgeries I had endured the past 18 months and the pain still significantly limited my activities. But what I couldn't say, or admit even to myself, was that I was too tired, out of breath, and my heart was pounding so hard and fast that it felt like it would jump right out of my chest. One of the complications after surgery was inappropriate tachycardia, a condition where my heart rate increases inappropriately high with little effort. Once my heart rate reached 175, my pacemaker would override and drop it back to 75; of course then I'd get dizzy and have to stop and rest. I was put on a medication to keep my heart rate lower, but that caused profound fatigue. It did allow me to exercise, but with only very modest effort.

My fear that I couldn't voice was that I would never be able to ride like I used to. That I was "that patient" again. I desperately wanted that feeling of freedom and power when I'm on the bike - riding up hills, against the wind with the world rushing by. Prior to the recent surgeries, I used riding as a form of meditation. It gave me what I desired all my life - a sense that I had conquered my heart defects. I had won, and I was no longer "a patient". Instead, I was a cyclist. The song lyrics I used to sing (in my head) when riding up a long, hard hill was "You can bend but never break me 'cause it only serves to make me more determined to achieve my final goal. And I come back even stronger, not a novice any longer 'cause you've deepened the conviction in my soul. Oh, yes, I am wise, but it's wisdom born of pain. Yes, I've paid the price, but look how much I gained. If I have to I can face anything. I am strong, I am invincible, I am woman". Yes Helen Reddy was my mantra.

Silly I know, but when I was riding my bike on those long rides (and the long rides were my favorite), I felt like I had achieved my final goal - of NOT being a patient any longer. And on that summer day 18 months ago, when I had to turn back on my bike after only 8 miles, I realized not only was I still a patient, but I was weaker and sicker than I ever was before surgery. And that was the hardest pill I have ever had to swallow. So rather than admit defeat, I did other things to stay active. I walked to work most days (almost 3 miles), hiked on the weekends, and walked everywhere else in between. It wasn't as much as I wanted, but it was still more than most Americans.

We've lived here now 18 months, and I haven't ridden my bike again since. The medication that kept my heart rate slow still caused me to be tired all the time. So a few months ago, with my doctor's approval, I started weaning myself off it. It was a gamble - could I really get rid of the fatigue without letting my heart rate prevent me from doing any exercise? I figured it was worth a shot. The day before my birthday last week, we went looking at fitness centers for Sandi. She needed one close by to work where she could continue her training. Sandi surprised me for my birthday and added me on to her membership. The next day, on my birthday, we went for our first workout. They have a cycling studio for spin classes, but there was no class that day, so I went in and decided to see what I could do on my own. Sandi came in and rode with me for the first few minutes, then went on to her workout. I felt pretty good, and I was the only one in the studio, so I decided to try one of my old cycling workouts. Spin hard and fast, keeping my rpm around 85-90, then every 10 minutes come out of the saddle for a hill climb, but keeping my rpm around 60-65. As the minutes wore on, my climbs got harder, and I added sprints up to 125 rpm. At 45 minutes, I was doing my last climb. I was dripping with sweat, my thighs were screaming and I was grunting for air. But I suddenly realized, I was actually doing it...I didn't have to stop, I could gut through it and it actually felt good! Tears mixed with sweat as I cooled down, I just couldn't help it. I was all alone in that cycling studio, just me, the bike and my pacemaker that keeps me alive. I'm dependent on it, you see; I have no rhythm of my own anymore (although some would say I never really had rhythm!).

And it was then that I finally made peace with who I am. I am a congenital heart disease (CHD) patient, and I realize now that I will always be a CHD patient. I will live with congenital heart disease for the rest of my life. It's not a defect (which implies that it's fixable). It's a disease, with all the complications and future implications that a chronic disease entails; I finally get that after 54 years and way too many surgeries and complications. I'm grateful that I was born in an era where the technology and very expensive spare parts are available to keep me alive. But it will be up to me to keep myself healthy and well. After a lifetime of denial, and nondisclosure, I can honestly say I am proud to be a congenital heart disease patient. I survived and I am thriving. Do I still have limitations - absolutely. But I can move my arms and legs, I can walk and talk and ride a bike. And I'm alive and well, and getting fitter by the day (no small thanks to Sandi!). I can't do what I did when I was in my 40's, but I can do a lot more than most 54 year olds. And more importantly, I've finally made peace with and know who I am. And in the end...isn't that what we all strive for?