An open letter to anyone struggling with a life threatening diagnosis

This post is the result of a personal request I got from the AHA to help a person who reached out on behalf of a younger person struggling with a diagnosis of a type of heart failure. It was written as a letter to that person in care of the person requesting help. I felt that the only way to encourage someone to face themselves was to tell them the story of the advice I had gotten from my aunt and then my two-year process of digesting my own diagnosis two years ago. Hopefully, this will find its way into the right people’s hands when they need it.

Hi,

The day after I got home from the hospital after my heart attack in 2015 I called my other mom. She’s my aunt who lives in a very small township who has challenged me since I was a teen to see things in a different light. I was a very stubborn kid who had it all figured out. Her husband, my uncle, has been fighting an aggressive form of cancer now for over ten years with the help of the new immune-therapy protocols. They’ve had many close calls and have become close to sheer panic on a dime over that period. She told me to look into the mirror every morning while I was brushing my teeth and tell myself “I had a heart attack.”

You see she knows me and my natural distance from anything emotional or things that challenge my ideas of the world around me and how I am the master of everything because, and I’ve actually used this phrase at work in Dallas, “there is no problem I can’t solve.” I actually believed that too. So when I was faced with a heavy dose of reality I needed the help of my aunt, my spouse, my friends and colleagues to get me through the mind shift I was faced with in adapting to a new way of thinking. One that was more accepting of my own failures as a man. As a husband. As a friend to so many. It was crushing but I made strides to get through it. This time not by my own force of will as I would view that in the past but with the help of all those around me.

After I went through my recovery, and then cardiac rehab program, I had to redefine things like how I exercised and ate. I was a born again lifter, after returning from a sedentary 6 years in Dallas, and before my heart attack. I could throw my body weight around on the bench press and lift heavy things with my legs. I was also in love with BBQ and fried foods. So I made slow steps toward learning how to love running. In fact, some of my early emotional hints that I was changing were times when I’d be out on the running trail. Training runs between 5 to 15 miles. Outdoors in the woods without a shirt in the Ohio humidity. Solitary, breathing hard with a heart rate over 160. Then I’d find a fresh stream of tears on my face and a frog in my throat. These huge waves of what I thought was sadness but later came to think of as gratitude that I was still here. That I could run in the rain. That I had a career and a family as part of my life. Like I said before I am not an emotional person so this felt like weakness to me or something must be wrong in my head so I hired a shrink.

The shrink walked me through the grief process. The anger, denial, bargaining to acceptance kind of stuff. For me, that’s going to be a lifelong endeavor because my old self is a son-of-a-bitch that does not easily let go. What I’ve learned is that’s OK. We don’t change overnight and life is not simple. It’s funny. With two years between me and my heart attack, and all this damn work in between, I still have moments that make me mad. Like I was rushing to a meeting one day. I have a LOT of meetings like sometimes 13 in a day. I’m walking in an outdoor courtyard by the arena downtown and I heard this Tim McGraw song “Live Like You Were Dying” playing on the radio speakers. And it was like on my run. It just unleashed this flood of tears. I had to veer off to a side street to collect myself because I related so hard to the lyrics. Life threatening diagnosis/experience, and for me… I climbed two mountains in Portland Oregon, one of them Mt Hood, three months after my heart attack. I nearly drowned in the Columbia river swimming with a buddy. I’ve run 5 half marathons and a ton of smaller races but including a 20-mile race. I’ve gone to couples counseling and have become a better husband. I switched careers to challenge myself to change my path.  I’ve also gotten my entire back tattooed and I’m headed to the rest of my upper body for total coverage on my arms and torso. I’ve always wanted to do these things and I figured now is the time to do it. Today is all we really have. So as cheesy as the McGraw song was, and I knew it, it was the theme of my past two years. It struck a nerve.

The other change I mentioned of two was to go vegetarian. Which sucked. Nobody told me I had to do it but I wanted to be aggressive, again old me, and do everything I could to stay alive in my eyes. The point is that I made the shift to running and vegetarianism and emotional work real slow. I didn’t dive into stuff because, as an experienced weightlifter, I was wary about people who “yo-yo” and do more harm to themselves than good.

In the end none of this is a guarantee. In my case there is no known cause for my diagnosis of cardiac artery disease. It just is and I had to accept it. And here’s the trick. While I had to accept it… I did not have to be defined by it either. I was alive and I had choices to make and I could. I had guides and support to get me to that point. I’m not sure I would have done as well as I have without that help. In fact, I would probably have tried to one up the disease and double down in the same forceful way I lived my life before the event. I was master of my universe after all.

We all have different conditions and circumstances. Like my uncle and his cancer or my aunt as my uncle’s wife and best friend. Which reminds me of another thing she told me on that phone call. She said that while I now have a chronic disease that could very easily kill me, that I would find that for what it took away from me, it would also leave me with gifts. I’d like to think that the feelings of that McGraw song are my gifts. All of the changes I’ve made. Choices and challenges. Yes, some failures too… but I’ve learned to start to forgive myself rather than beat the Hell out of my soul because of my own perceived weaknesses.

The gifts of my heart attack have included two years of life that have been radically different than all the decades before it. No, it’s not a picnic. Mine came with anxiety and depression. But I’ve also learned to cope with that. And still I’m doing remote hiking and camping now and sleeping under the stars for the first time in 40 years. That’s a pretty damn good gift when you are on your back looking at the night sky shining above you showing you just how small, and connected, we really are during our short experience in life.

No one is going to tell you what to do but I would, very humbly suggest, that you look at yourself in the mirror every morning when you brush your teeth for a month and tell yourself you have whatever condition you have by name. Start your journey slow and be good to yourself while letting others inside and share the strength.

Your ally,

Jeff

Posted in personal
One comment on “An open letter to anyone struggling with a life threatening diagnosis
  1. Bob Mangia says:

    Jeff
    Thanks for sharing this. I admire your openness revealing such personal things. Hope your words empower people to look at themselves and make changes.

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