This fall was the 10th anniversary of my heart murmur. I should clarify. This fall was the 10th anniversary of a doctor finally noticing a heart murmur. It was actually the 22nd anniversary of the heart murmur as a whole. 

For some reason, I have been thinking about this a lot lately. I had a rough 2021 and maybe that makes me think about when this medical journey started for me. Or, maybe it’s common to remember the anniversary of a diagnosis.

I keep thinking about how there was a time when I had no idea that a person could go through what I have. This might seem silly to you because, if you are reading this, chances are you have been through similar medical situations yourself. But at 12-years-old, I sat in the waiting room thinking the doctor’s office is where you go for them to smile at you and say that you are the picture of health all while assuring your mother that she’s doing everything right. Frankly, I think my whole family believed that too. I never worried about going to the doctor because I knew exactly what would happen and what would be said. Even when I was sick, I knew there would be an antibiotic or OTC meds that would fix me right up. But that afternoon, things were different. I presented with a heart murmur that had never been noticed and suddenly I faced the unknown.

After extensive imaging and several cardiology appointments, it was decided that I was “marfanoid” and should be seen by specialists in a bigger city. My parents and I drove to a research hospital where I was poked, proded, and studied for 2 whole days. The conclusion was that while I did not have the genetic markers of Marfans, there was clearly something wrong that should be followed by specialists closely. It took 8 more years before they realized it was Loeys-Dietz Syndrome. 

I think a lot about the grief that I feel even after 10 years. Grief for the life that I thought I would live. I grieve for a relationship with my parents not affected by medical emergencies and uncertainty. I grieve for the adventures that I assumed I would be physically ready for in my 20s. I grieve for the time that I have lost to doctors, labs, imaging, pharmacists, pain, and fatigue. And then, I feel guilt. I feel indescribably guilty that the wonderful, happy and privileged aspects of my life do not negate the grief. I have gotten to do some incredible things in my life. I have people in my life that love and support me. I have access to the things that I need. But this fall, I sat in my car experiencing one of multiple lung collapses this year with the knowledge that the ER and all my doctors would not be able to do anything for me. And it was hard. It was hard not to feel cheated of a life in a healthy 22-year-old body. 

I almost didn’t post this, like I have with most of my writing. But, I think that it is important. I’ve learned in the last year that processing a chronic illness is cyclic. You might be devastated at first by the shocking news. Or, as I was, you might be relieved that the years of advocacy and reaching out for help paid off with a name for the problem. And as time moves on, you learn how to manage your condition, making it easier to feel empowered by the diagnosis. Then, when a new symptom reveals progression of the disease, you have to start over again. It can be frustrating because you knew AND accepted that this was what would happen, yet it still bothers you. That “someday” turned into today. Today you are living with the symptoms and it is affecting the current reality, not some far off future. The thing is, you’ve got to remember the cyclic part of things. It is important to realize that you will swing back to a place where you understand all the symptoms, how to manage them the best you can, and how to carry on with them in the background of your daily life. And there you will stand, ready to walk over a mountain or through a valley, whichever should come first. 

“There’s always failure. And there’s always disappointment. And there’s always loss. But the secret is learning from the loss, and realizing that none of those holes are vacuums.”

– Michael J. Fox

I these are the words with which I will celebrate this anniversary.