How do you blaze new trails when you do not have the energy to light a fire? Maybe I need to add another doctor to my team?
Last summer I went to a pool party where I caught up with a number of my former colleagues from the workplace. It had been a few years since I had talked to most of these women. One of them asked me what exciting things I had been doing since retirement, since I always had the reputation of being a trail blazer (unbeknownst to me).
This was a historic moment. I think it was the first time I was ever at a loss for words! I am usually quite chatty. But I really did not know what to say. I had not been doing anything to further my career that was exciting or fulfilling. In fact, I was doing nothing to further my career. I was just trying to live as normal a life as possible. What is exciting, pioneering, or even radical about that?
I could not even think of something original or witty to say, as the question caught me off guard. So I just babbled the truth. I said something like well, I actually have been under treatment for heart failure for a few years. I had to have a number of tests to determine how advanced my heart failure was. I avoided having to get a heart transplant, but had to receive treatment for heart failure. I really had not done anything career-oriented, or ground-breaking, since I retired.
I felt bad. Not because I babbled or had created an awkward moment for the two or us. I felt bad because I once again concluded that I had let everyone down, especially myself. I should be doing more things, branching off into new endeavors, taking on the challenge of leading the mentoring of the new generation of leaders. Instead, I was in a pool relating my lack of success (also known in my mind as failure) to my peers. As I had this conversation, I thought that it wasn’t bad enough that my heart had failed. But my spirit, the thing that always came to the rescue when I was feeling down, seemed at the moment to be on life support as well.
And then it came to me. I had a primary care doctor, a cardiologist, an advanced heart failure doctor, a gynecologist, and a therapist to help address my anxiety. But I was missing the doctor who had become critical to every successful effort inside the Washington DC Beltway in recent years. I needed a spin doctor!
I needed someone who could take my facts, discount the negative, accentuate the positive, and spin my life since retirement into a major success story. If done right, my story could become not just the tale of a trail blazer but the account of a persistent fighter who just won’t give up and is finding new ways to be relevant.
The Collins English Dictionary says: "In politics, a spin doctor is someone who is skilled in public relations and who advises political parties on how to present their policies and actions." I’m not in politics, but knowing how to present my actions will be the key to whether this chapter of my life looks like a shambles or like a great victory. How many Type A’s do you know who would settle for living a life that resembles a shambles???
So the first thing I can spin is that it takes great determination to live as normal a life as possible when you have heart failure. After all, the organ that is responsible for delivering blood to every vital organ of your body is letting you down. What if it just stops beating at all one day? Sometimes that thought is enough to make me want to stay in bed for the entire day in a misguided effort to prolong my life expectancy.
But I cannot let thoughts like this take control of my life, or I will be depressed and I will be defeating my own recovery. So I look at each thing I do with a crummy heart like it is the greatest achievement in the world. Every time I am able to take one or more flights of steps– even it if is at a slow pace, it is one more time that I am beating the worst possible hand that heart failure has dealt to me.
While being a warrior and building up your physical defenses is a great thing, I feel the absolute best thing I can do is to tell the story. That takes guts. Why? Because how many times have I admitted that I had a relapse, or that I was frightened, or that I felt that everyone was moving forward and I was stuck with this burden? It isn’t easy to admit that life has some down moments that sometimes can get the best of you.
But once it is out there in writing, I feel compelled to rise above whatever is bothering me.
It isn’t easy to get the upper hand. But I learned that if you celebrate even the smallest achievements, then you have found a positive nugget that will start to feed you tired spirit. Some mornings I am so tired, and I have to stop and take a quick break during my exercise routine. But I no longer look at that as – gosh, I am not exercising as much as I did yesterday. Instead, I take the position that the fact that I am doing any amount of exercise when I was not feeling 100% is like a miracle. I also know that if I keep a positive nature, then I’ll be in a good mindset to meet some of my goals during the rest of the day, and will feel more powerful in my exercise routine the next day.
Each day I can hop on the elliptical or the treadmill, or do yoga, or take a long walk with lots of hills and steps, that day becomes a time when I can wave my victory flag over a daunting chronic condition. Often time, I can all of these different modes of exercise in one day, and that is when I really feel like a heart warrior.
It is these moments when I feel like Xena the Warrior. If you were around in the 90’s, this was an hour long program about an ancient warrior whose mission was to be redeemed for her sin filled past by using her powerful fighting ability to help those who could not defend themselves. The actual name of the show was Xena Warrior Princess.
I never liked the “Princess” part of the title. Princess brings to mind images of a Disney character in a ball gown, with birds floating around with banners and chirping melodically. This was not Xena – the woman could kick serious butt. I always thought it should have been something like Xena Warrior Amazon, or Xena Warrior Goddess! Whatever the title, I want to be just like Xena – a resilient heart warrior who isn’t afraid to take on whatever problems heart failure can bring, and who helps other vulnerable patients learn to manage this condition.
There is also another word I like that explains my new role. Merriam Webster says that a trail blazer is one that blazes a trail to guide others, a pathfinder. Though I have always like the term trail blazer because it signified to me that someone with a fiery spirit was taking the world by storm, I now think maybe that is a bit too strident for me. After all, blazes can sometimes turn into raging infernos, destroying everything in their way. I don’t want to destroy – I want to guide and nurture.
So I like the term pathfinder. I found myself picked up by the hand of God and dropped into the country of heart failure without a road map. But somehow, I plodded through the brush, admittedly stumbling a few times. But I picked myself up and eventually found a path that is leading me to a pretty good place. And if I can help others who have been dropped into this same foreign territory find their own way, than that is a wonderful thing.
So now I can tell friends at pool parties that I am a pathfinder, imparting guidance and direction to those who may have lost their way as they deal with the challenges of chronic conditions.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.