Dear Jimmy Kimmel,
The day before my 41st birthday I opened my Facebook page to see that my Aunt had tagged me in your video. I sat. I watched, and listened in awe, just one in a few million that did the same. I knew what was coming, and I know what is to come. I saw in your tears, the pain that both of my parents experienced when I was born. And I feel for everything your son has already endured, and what lies ahead for him. What an entrance into this amazing vast world we get to live in.
I was born in Syracuse, New York in May 1976 with a Ventral Septal Defect (VSD) a hole the size a quarter between the two chambers of my heart. This is nowhere as extreme as I think the case with your son. And at that time in medical history they didn’t operate right away. They had found out that the hole closes on its own as we grow.
I did have cardiac catheterisations at age 2, 6, and 13. I don’t remember the one at age 2, but the others I remember. They are stories onto themselves. I grew up in a lower middle class family in upstate New York. I have always considered myself lucky for having been born in New York. I do not know if it still is the case, but if a child is born with a medical defect their costs are covered beyond any insurance the parents have by the state until age 18. In addition, my father worked for the County, so we had excellent health benefits. It was comforting to know that I was not a financial burden to my family along with the emotional one.
I had yearly visits to the cardiologists, and I mostly lead a regular childhood of running around, falling, and getting back up. My only restriction was that I couldn’t lift weights, or do static exercise.
When I was 12, I contracted the flu, which became pneumonia, and a staph infection in my blood. I was really sick. For the two weeks I spent in the hospital echocardiograms were performed every day. During this time they found that my aortic valve was over-sized and weak. I think of it like a pulled muscle when exercising. But there is no physical therapy for this. I needed surgery. At age 14, I had open heart surgery. The surgeon repaired the valve and closed the hole. This too is a story onto itself. I was back home in about a week's time, and back to school shortly after. I wore my red scar proudly and have never tried to hide it.
My yearly visits to the cardiologist continued as I left home and pursued my passion and dreams to study Fashion at F.I.T. in New York City. I also studied abroad in Florence, Italy. Through school insurance I was lucky enough to be able to see top doctors at Columbia Presbyterian at little to cost to myself.
My senior year of college my heart check-up wasn’t so good. I needed surgery again. On my Christmas break, December 27, 1997, I underwent open heart surgery. This time they replaced the valve with a St. Jude’s valve, which means that now, and for the foreseeable future, I am on Coumadin, a blood thinner. I again felt lucky that I was able to have the surgery during school, and not worry about getting a job and then taking time off to heal. But I have to be honest, this stuff is heart-breaking in all senses of the words. I will always need time to heal all that has come, because there is no telling after this much medical intervention the amount of emotional pain and set-backs it creates. I again wore my scar proudly. Exactly one month after my surgery I started an internship with Koos van Den Akker, now deceased, and infamous for designing Bill Cosby’s sweaters for the Cosby show.
In 1998, age 21 I graduated Cum Laude from F.I.T. and having proved myself a valuable employee working for Koos, I was hired full-time and paid $275 a week. They also paid for my health insurance that I could purchase through the F.I.T. alumni association for about $635 for 3 months, if my memory serves me correctly. I could not have afforded on $275 per week alone, or on any starting salary.
My following career decisions have been made mostly out of the need to have health insurance. I was often trying to make a go of being a designer with my own brand, but between paying back my student loans and paying extra for doctor’s visits, blood work, medicine, it was really a struggle. But I continued, like I did in child hood, to run, and in more recent terms, to persist.
In 2003 I had years of good health behind me. I decided to sign up for the New York City Marathon and became the first woman to run a marathon with a mechanical aortic valve. There were two men who ran before me, while I never met them, it was comforting to swap stories about our pasts and running.
With a constant nagging in the back of my brain, knowing that I could do more in the design world, I decided to continue my education. I was accepted and enrolled into Pratt Institute’s Master of Industrial Design program in 2007. While setting up sculptures in a school gallery one day, I saw a professor, and I noticed that at the bottom of his V- neck a scar that peaked out that was exactly like mine. I cautiously approached him, and said I had a scar like his, and asked if it was for the same reason. In about thirty seconds we found out that we were within a year of age of each other, and both had 2 open-heart surgeries almost at the same times in our lives. And we shared the same doctor in New York. It is important and profound to know there are others like us in the world, and here, on a similar career path in life made all of the years, of everything, so much easier to process.
In 2010 I graduated from Pratt Institute and after eight months of couch surfing after graduate school, and just barely coasting on extended health insurance from Pratt, I landed what I considered to be a dream job working for one of the best luggage companies in the world in March of 2011.
Life has been bumpy, there is no doubt, but is also has been amazing, and as I have just turned 41, I hope that it is not even half over yet. You mentioned that your story has a happy ending; but I assure you it is far from over. I find more and more as life goes on that it is always beginning. As of one year ago this week I have started a completely new chapter that I could never have dreamed up.
I am living and working in Paris, France for one of the best brands in the world. Here in France I have true socialized health care. Even before I was “in” the system here, I needed a doctor so that I could get a prescription for my medicine and monthly blood tests. The first cardiologist I found through a friend and didn’t charge me. He didn’t charge me. He is one of the top doctor’s in Paris. As I am now a very stable and healthy individual, he sent me to another doctor for my yearly check-ups. This doctor did the basic check-ups, said to call him any time. He charged me 65 Euros. In today’s exchange that is $71.34. That’s it. No co-pay, no co-insurance. That was the total of my bill. My blood test that I was getting before my Carte Vitale (the French social security) was around 14 Euros, at cost. Now I do not pay for it at all. My medicine was just a little more than what I was paying in the states, with insurance, that too is no cost to me. On top of it am taking home the brand name Coumadin, not generic Warfarin, which is what I always got in the states.
I’ve lived here for ten months now and every time I visit a doctor’s office I am humbled at their simple and efficient offices. Often decorated with very little extra or new, but it is a place where they service people. There are not extra billing desks I have to go to after my visit, I pay directly to the doctor.
Today I write before I go for a run and yes, even lift weights. I do no shave many restrictions on my physical activity. Bungee-jumping, and sky-diving might be on my bucket list if I had been born with a different heart, but I'm OK to put other things on my list.
Thank you for bringing a voice to people who are born with a condition they had no control over. We didn’t cause it, nor can we cure ourselves alone. We are the children that it truly takes a village to raise, and as part of the United States, we are one of the biggest villages on the planet and there is no excuse not to take care of each other. If we are to continue to call ourselves a first world country we need to allow all of our citizens basic rights and proper access to health care. This would be the happy ending to a story, that I hope will continue for many more centuries like our allies over here in France have continued.
P.S. I saw you live in Brooklyn after Hurricane Sandy and have been a big fan ever since.