Don’t Tell My Achy, Breaky Heart
This is yet another piece cribbed from my Creative Writing homework. Figured it was worth posting as it was described as one of the best pieces I’ve ever submitted for the class, as well as the fact that it describes an incident in my life that I’ve discussed with all of maybe half a dozen people in the four and a half years since it happened.
“Shawn, I’m going to give you the name of a cardiologist in town, and I want you to see them as soon as humanly possible,” my doctor said with a seriousness I had never heard.
“Why?” I asked. “What does a cardiologist have anything to do with making sure I’ve fully recovered from pneumonia?”
“While I was examining you, I noticed you had a rather alarming number of symptoms for Marfan, and I want you to get this checked out so that if you do have it, we can start treatment before anything serious happens.”
“Symptoms? For what?”
“Marfan Syndrome.”
“…Ok.”
“It’s a genetic disorder involving your connective tissue, and you’ve got an alarming number of symptoms. Your long, skinny limbs and digits, your near-sightedness, your sunken chest, your family’s history of heart problems, the fact that you’re 6’2” and almost sixty pounds underweight; all of those are symptoms.”
“So what does all of this mean?”
“If this goes untreated, your aorta, the main artery out of your heart, could dilate and rupture and you could die.”
I didn’t know what to say to that. Honestly, what could a seventeen year old say to being told they could bleed to death at any minute?
My mother was taking this surprisingly well, and by that I mean she hadn’t broken into hysterics yet.
“Shawn, it is very important that you get this checked out within the next few days. When you go to the cardiologist, they’re going to do an echocardiogram, which will tell us if you have Marfan and if we’ll need to do anything. Can you do this?”
“Do I really have a choice?”
After leaving the office, I did a little research of my own on Marfan Syndrome. Apparently, besides a dilated and disintegrating aorta, I could look forward to a number of other complicated health problems with even more complicated names. Dural ecstasia, spontaneous pneumothorax, idiopathic obstructive lung disease, glaucoma, and detatched retinas were all possible outcomes of my having Marfan. Worse still, there is no known cure for Marfan Syndrome, and any complications that could result from it can only be treated as they arise.
On the plus side, the life expectancy of those with Marfan has increased dramatically in the past few decades, and supposedly Abraham Lincoln had Marfan. However, the thought that I might also get shot in the back at Ford’s Theatre on top of having my chest fill with air and having my eyes fall out wasn’t all that comforting.
Surprisingly, in the three days between my near-diagnosis and my appointment I never felt panicked, agitated, frightened, or scared. This wasn’t a case where a light cough leads some quack to believe you have the Ebola virus. Rather, I had no less than seven symptoms for Marfan.
No. The only thing I felt was numb.
I imagine people who are told they may have malignant, inoperable tumors must feel the way I did; having no idea whether or not you were perfectly healthy or that you were being handed a death sentence that you couldn’t do a damned thing about. Sure, you could go under the knife and maybe postpone the inevitable for a while, but in the end knowing that you will, barring any horrific accidents or extraneous circumstances, inevitably succumb to your affliction.
By the second day, I just found it easier to mentally turn myself off than grapple with the possibilities of what could become from being diagnosed positive.
The afternoon of my appointment happened to be on a school day, meaning I would get to leave significantly earlier than my peers, none of whom had the slightest idea that anything was wrong with me outside of the fact that I had recently had pneumonia. The fact that I would only have to spend five minutes in physics, a subjected I absolutely abhorred, did little to lift my spirits.
Walking into the cardiologists office, I was rather surprised by how strikingly different her office was to the standard hospital waiting room. Frankly, were it not for the medical files behind the front counter, I would’ve thought I’d have walked into an Ethan Allen showroom. The waiting area even had some soft-rock radio station quietly whispering sappy love songs in the background, which made me wonder if the staff felt the need to change the station when they played “Unbreak My Heart” by Toni Braxton.
Eventually I was led into a room towards the back of the office that, were it not for the hospital bed and mountains of monitors and medical equipment, would’ve made a nice guest bedroom. After removing my shirt a battery of electrodes and monitoring devices were attached to me, presumably to measure my breathing, heart rate, and blood pressure. I couldn’t explain, however, why turquoise glop that felt like liquid ice was being spread over my chest.
I didn’t have to wait long to find out what the goop on my chest was for though. The cardiologist entered the room and, after briefly introducing herself, brandished a wand that resembled an electric razor and began maneuvering it over the slime on my chest. Soon, a nearby monitor flickered on, displaying a sonogram of my heart.
Seeing your own heart beat isn’t nearly as exciting as you’d think it would be.
After several minutes of analyzing data and watching my heart keep time, the cardiologist put down the wand and looked me in the eye with a somber expression on her face.
“Shawn,” she asked, “why are you here?”
“Because my doctor detected multiple symptoms for Marfan Syndrome and wanted me to be examined.”
“Well, all of our tests showed you’re perfectly fine. Save for that your doctor saw the potential for something that would’ve gone unnoticed otherwise, you have no reason to be at this facility.”
In a matter of minutes, I was sitting in the car placing an order at the Sonic Drive-In across the street, knowing that I wasn’t about to spontaneously hemorrhage blood from a ruptured aorta, randomly leak spinal fluid, have my eyes fall out, or be shot in the back in the middle of the play.
No, the worst thing that would happen to me that day would be the brain freeze I’d get from the milkshake I had just ordered.
My son, also 17, has also been diagnosed with a connective tissue disease with muscle biopsy tests being done at the moment. He too has several features of marfans. He also has had several echocardiograms which have had minor pauses, but are considered to be normal. Until recently he did not have any pain, but developed a large number of twitches. For the last few months the pains he gets have increased, particularly in his chest, but still the echocardiograms show no sign of there being any problems. He is tomorrow having an MRI and MRA scans to check for dural ectasia or widening of the foraminae. I do not want to burst your balloon, but would seriously advise you push to have further tests done. I know Marfans can affect people differently, but there is a serious risk of heart and lung problems which may not manifest themselves on the echocardiogram, but which could cause sudden death. Good luck with your condition and I hope you are lucky and only have mild symptoms. Irene.