When I look back at those pictures from the summer of 1999, it’s shocking to see how sick I was back then. For years, I couldn’t even glance at them. They were a constant reminder, a terrifying wake-up call to how sick I once was and how easily it could happen again. Worse yet, they showed the fallibility of the medical profession. To think that someone purposely did that, despite knowing my allergies is the worse part of those pictures. We take pictures to never forget, to have a physical memory of the past. No matter how hard I try to remove that summer from my mind, those pictures are a constant reminder that I can’t.You might be asking why my family decided to take those pictures in the first place. What could we honestly gain from a roll of film of me looking like Violet Beauregarde? First, we needed to document what would happen if someone ever gave me penicillin, cipro, or clindamycin again. But I think more importantly for us, we needed proof of what the hospital did to me. We put such trust into our health care providers, expecting them to always do the best they can for us. But the picture above clearly highlights that trust isn’t enough, you need proof. And, unfortunately for me, Beth Israel North completely broke that trust with their care.
We probably could have sued the doctors, the hospital, and anyone else who took care of me during my stay. I mean, I remember a nurse who was taking care of me once told my family to get me the hell out of there. And this is America, so you can sue for anything. But for us, these pictures aren’t about retribution (well, for my parents it still kind of is). For us, it’s about remembering what someone or some place can do to break your trust in them. And besides, Beth Israel North got what they had coming to them. A few years later, the hospital was closed and bought by a developer who is making it into condos.
Switching hospitals to Columbia Presbyterian and finding a great doctor is a story in itself. My parents very close friends have a brother who works at Columbia. He heard about my situation over the weekend and was planning on talking with my future doctor about switching hospitals on Monday. But even before the workweek started, he miraculously saw him at a Jewish bookstore. The brother mentioned my case and my doctor told him to get me immediately out of there. That week, the papers were put in order, the documents were signed, and the ambulance came to switch me to Columbia.
It’s important to know that the Jewish community is a very small world. Word gets passed around very easily sometimes for good and a lot of the times for bad. So it’s no surprise that my story went from my parents, to their friends, to their relatives, and so forth. In my community, we can bang that out in like 20 minutes. What is so miraculous about my story, though, is that my doctor isn’t even religious, let alone part of this gossipy world. The odds of him spending his Sunday at a Jewish bookstore are so low that its silly to even think about. Behind our backs, unknown to my family and I was this amazing string of coincidences that ultimately led to me getting better.
A picture is worth a thousand words and honestly, I’m on my way to surpassing that number shortly. This topic feels like its been bottled up inside me for the last 10 years, waiting to find the page whenever I was ready to get there. These pictures have reawakened my memories of that summer and I will post the rest of the experience either later today or tomorrow.
2 comments:
Hi,
You look so much like my son in this picture. He is 14 and has had PSC/UC since the age of 2. Soo 12 years so far. We just were at Morgan Stanley Children's in New York with Dr. Steven Lobritto. Wesley is almost 5'3" 88 pounds. How tall are you, if you don't mind ? We are worried about his growth,,,he seems stuck. I already have Cipro allergy on his chart,,,same with Flagyl !
Hi Armana,
I'm so sorry to hear about your son. Dr. Lobritto was my GI at Columbia for many years and is a great doctor. I am around 5 foot 5 inches but unfortunately have not grown in around 10 years. When I've spoken to my doctors about it, they believed that it had more to do with taking steroids (prednisone) during puberty than PSC. I hope this helps. And please email me with any more questions.
Post a Comment