I worked a big convention a couple of weeks ago in San Diego - the American Society of Hematology (ASH). It’s an opportunity for me to connect with my customers, meet new people, hang out with my colleagues, and educate people on an ultra rare disease. I get to meet physicians, other people who work in my industry, and this time, was fortunate enough to sit down and talk to a patient (and leader of a patient group) with a rare blood disorder. He did not have the disease that I work with, but a different one. I don’t know what led him to sit down and talk to me. I wasn’t really supposed to be sitting, but my feet were hurting, so I briefly took a seat on a high stool. This man, I will call John, sat down at the table with me to enjoy his coffee. We struck up a conversation. I typically speak with physicians at the booth; this guy wasn’t a physician, but he was obviously well versed in medicine which became apparent as soon as he started talking. He was a smallish man, thin - a runner, I later found out.
I don’t know why people open up to me, but they do….I’ve been called the “people whisperer”. I've been working on a book (at least in my mind) about the stories people tell me on airplanes. I don't know why people open up to me, but I'm grateful for it because I learn a LOT. This man proceeded to introduce himself to me; we were the only two people at the small high top table. I quickly learned he was not a physician (although he spoke and looked like one); it turns out he’s an attorney (environmental) and has polycythemia vera which is a condition in the bone marrow where the body produces too many red blood cells (and often too many white blood cells and platelets as well). He explained the disease to me in detail, which, to most people, may not have been interesting, but I’m a geek like that and love to learn about the body and its craziness. I read so much about strange diseases that I often wonder to myself how any of us are alive. This disease is treated at least in the early stages by simply donating blood (phlebotomy); if you have too many red blood cells - you just get rid of them by physically taking them out of your body. The disease itself makes your blood thick and can make you more likely to have blood clots, a stroke, or a heart attack. It can also lead to other types of blood cancers over time. It's mostly manageable and treatable, but still a scary thing to face as a patient.
He explained all of this in great detail to me and said that while he looks healthy, which he did, he doesn’t always feel strong. He is a runner and said he knew something was up when he just had a very hard time even getting TO the runs let alone running them. His doctor was initially not at all concerned; someone not having the energy to complete a long run doesn’t seem abnormal to non runners. Those of us who have been running all of our lives know what that feels like; we know when something is “off” because we are in tune with our bodies in a different way. We, like this man, don’t always pay attention to those signals initially, but we KNOW. He eventually did show up at the doctor and after a few visits, was diagnosed.
He’s been managing the disease for quite some time; he told me he hasn’t had a real shower in a very long time because the water causes uncontrollable overwhelming itching all over the body - one of the biggest problems in quality of life with this form of cancer. I thought about how much I love to take a shower and how awful all of this must be for him. Just recently, he had a small stroke and wound up in the hospital, signaling that he needed to do something different. His physician had been wanting him to start on a new drug, a JAK2 inhibitor (this is the pathway in the body that is problematic in this patients). He had been reluctant; no one wants to expose oneself to potential side effects, etc. But this recent health crisis pushed him over the edge and he agreed. As of our discussion, he had been on the drug for one week. He thought he was feeling a bit better and no real side effects yet. The real test was to be the shower; would he be able to take one without the extreme itching? He was going to give it a few more days and try it.
I’ve condensed this story into a few paragraphs, but our conversation was probably at least thirty minutes at this point. The booth traffic was slow and there were lots of us there; I was enjoying learning more about this disease and I think it was good for him to talk to someone uninvolved. Patient advocacy has always interested me. I’ve learned through my years in this industry just how important it is to advocate for yourself; to do all the research you can to learn every last detail about your disease and potential therapies. Doctors are amazing, but they can’t possibly know everything about everything, and only the patient really knows exactly how he is feeling. This guy not only did his own research, but he also heads up a patient group. Patient groups are amazing and instrumental in making people feel not alone and in providing support to patients and families faced with health crises and the ensuing decision making that comes with these disorders.
Somehow after we finished discussing his polycythemia vera, we moved on to his law practice and his family, and he proceeded to share that his family came from Germany (I studied in Germany in college, so have an interest obviously). As I began to listen to him, I started doing the math in my head; he had told me at some point in the conversation that he was Jewish. I quickly realized that his family must have been in Germany in WWII, and sure enough he told me his grandmother was a Holocaust survivor and his grandfather had died in the Holocaust. I had the thought that I would not be having this discussion right now had his parents not made it out (as children they were transported out of the country in time to save their lives.) He said his grandmother talked about it, but not in great detail. The story of his grandfather was a sad one. At the end of the war, just before the concentration camps were liberated, the Germans made a last ditch effort to march the “workers” (aka concentration camp prisoners) to another country (I can’t remember which he told me) where Hitler planned to move these near death prisoners to start over in new camps. During this march, many of them died or were shot. His grandfather was one of these.
Sometime after the war, a pastor in this small town took it upon himself to properly bury and identify those who were killed in this death march. John’s family was notified that his grandfather had been identified. There had been some letters and other information passed down through other people that had pointed toward this as being the grandfather’s fate, but here was the proof that the family needed to really KNOW what had happened. This was a tragic story, a tragic family history. He took a deep breath at the end of his story and looked at me and said, “I don’t know what your political beliefs are, I don’t know what you feel about our current world situation….but I do know that Hitler was elected by the people. He was elected by the disenchanted, disenfranchised electorate; by the people who wanted a “change” from the status quo. I assured him we were of the same political leanings, and I haven’t stopped thinking about our conversation since.
I guess because of my time in Germany, I have always been drawn to learning more about this dark time in our world’s history. I still can’t wrap my head around how, in the 20th century, this could happen. I do know that people must learn from mistakes; that we must examine what the underlying cause of such hatred might be; that we explore “how did we get to that point” and “why did no one stop it”? In my mind, the underlying cause of all of it was the feeling of being “separate” and “different” and needing to label and undermine that which is different from us. We still do it; I see it (and probably do it) all the time - men and women, black and white, Muslim and Christian, poor and rich, Hillary and Trump supporters.
At the end of the day, we are all human beings. We all have a body and a mind and a soul (that, if we are lucky, are working and healthy). We all have red blood cells and white blood cells and platelets. We all have parents and children and friends. We all want the same thing; to love and to be loved. It all starts with us. As I think upon the story this man shared with me and I think upon my role in this world, I realize that we all, as individuals, have just one job and that is to NOT make ourselves separate. We need to realize that each of us plays a part; each of us has the ability to touch another life or even just to listen to another human being’s story. We are all in this together and it is our job to bridge the gaps and reach out to those who seem, on the surface, different from us.
I may not change global politics, but I am able to listen to someone else. I am able to listen with my heart and put away stereotypes and connect with another human being. I am able to reach out to someone of a different religion or race or sex and recognize that we are all part of the same whole, embracing our differences and knowing that it is this type of melting pot of humanity that is the foundation of our country. It is only through love and the acceptance of differences that we can all coexist and THRIVE. As I was thinking of how to end my little story, I distracted myself by scrolling through Facebook briefly. The very first thing that popped up was a holiday card that someone had posted. It is a cute picture of a husband and a wife and a baby and said in big red letters in all caps….. THIS CHRISTMAS SEASON WE WOULD LIKE TO REMIND EVERYONE THAT JESUS WAS A MIDDLE EASTERN REFUGEE. I am a hodgepodge of Irish and English and German and Kansan and female and have had no money and have had some money and have been married and divorced and work for the pharmaceutical industry but am liberal and was once conservative and I'm a mom and a friend and a proud United States of American citizen..... we are all many many many things, but mostly we are all human beings.
I think that says it all. We are all connected.