On Cultural PTSD, Insularity, and Illness - HR Williams

In the first year of the new millennium, at twenty years old, I dropped out of college and for the first time in over ten years I felt relatively free from anxiety and obligation. I lived in a little attic apartment in Eugene, Oregon and worked at a call center conducting voter opinion polls and market research surveys. When I wasn’t at work I was usually on some sort of crazy adventure with my roommate, Jevon. I rode my bike and went to indie shows and stayed up late talking politics with my friends, and enjoyed being alive and young and mostly carefree. By my twenty-first birthday I started experiencing a wide range of debilitating physical ailments that turned my life on its side. Five months later I was incredibly lucky to be diagnosed, and thus able to be treated for, Wegener's granulomatosis, a rare autoimmune disease.

Autoimmune diseases occur when the immune system is in overdrive and starts attacking parts of its own body that it has mistakenly confused for foreign substances. At parties after a drink or two, I regrettably think it’s clever to explain “I have the opposite of AIDS.” I will likely be on medication (immunosuppressants, low doses of chemotherapy drugs) for the rest of my life to ensure my survival. Most of my adulthood and its early promise of freedom have been overshadowed by disease. The symptoms I've experienced include (but are not limited to) severe sinusitis, debilitating arthritis, anemia, inflammation in my lungs, painful skin nodules, new bone growth that closed off my sinuses, painful inflamed blood vessels in my eyes, and acute kidney failure. That's nothing to say of the side effects of the different medications I've been on, which have landed me in the ER more than once, like the time an urgent care doctor prescribed me a toxic combo which resulted in drug-induced hepatitis.

A couple years ago my disease was renamed Granulomatosis with Polyangiitis. All the doctors still seem to be calling it Wegener's and I still have trouble remembering the new name. The disease was renamed because it was originally named after Dr. Friedrich Wegener, a German pathologist, who first described the disease in two reports written and published during World War II.  Dr. Wegener was a Nazi who spent some of the war in an office situated right next to the Jewish ghetto in Lodz, Poland. There is speculation that he participated in experiments on concentration camp inmates.

My maternal great-grandfather, Jacob (Yakov in Yiddish) Seifter, was born in a Polish town called Oswiecim. In Yiddish he called it Oshpitzin. You are probably more familiar with the name the Germans gave it--Auschwitz. A few years ago I read an article about Wegener in The New York Times and forwarded the article on to a few friends and family. When my dad and I discussed it on the phone, he proclaimed earnestly, "Jews just can't get away from the Nazis." I repeat my father's reaction for a chuckle from my gentile friends, but his response reveals the embattled mentality of many Jews raised in the immediate aftermath of the Holocaust. And over time I have come to see my disease as a kind of Nazi attack on my existence.

My grandparents lost most of their aunts, uncles, and cousins in the Holocaust. My dad was born in May of 1945, two weeks after Theresienstadt became the final concentration camp to be liberated. My mom was born two years later. She remembers her grandfather, Jacob Seifter, as a stern, unhappy man. As a young child my mom had repeated nightmares that Nazis were chasing her and trying to kill her. It was only as an adult that she realized that the unhappy man she remembered from her childhood was continually getting the news of the awful fates of most of his immediate and extended family. Only months ago, my aunt showed me for the first time “A short survey about the Seifter family.” It was written by Jacob’s niece, in 1984, from her home in Tel Aviv. In her choppy English she commemorates the life and death of each member of the Seifter clan. Each of Jacob’s grandparents, parents, siblings, nieces and nephews are remembered. For each person we get a very rough sketch of where they lived, their profession, and a few wonderful descriptions that create a vivid picture of a vibrant family.  Each paragraph ends somberly with a tragic death. The survey ends with this statement:

“Because all male descendants of Chaim Leib Seifter --up to Jacob and Joseph [Joseph Seifter, Jacob’s only surviving nephew] -- were killed by the Nazis during the second world - war, the name S e i f t e r [It seems to me as if the space between each letter was not a typo but rather was intentional, perhaps to denote some gravity, as if each letter was a singular piece of a larger family.] died with them. This is the sad history of once a big and interesting family, which was exterminated under horrible circumstances.”

That kind of trauma gets handed down through families and cultures for generations. I’m certainly not the only Jew to notice a cultural legacy of fear, paranoia, and anxiety. Trauma often manifests as physical illness. It’s no secret that psychological stress turns into physical stress and makes people sick. Is it possible that part of the inheritance of my family's trauma is my illness?

From what I can tell from the internet and real-life anecdotal experience, Ashkenazi Jews (Jews with European heritage) have a disproportionately high rate of autoimmune diseases.  I am 100% Ashkenazi Jew. I'm bad at science but I'm developing a hypothesis that insularity on top of cultural post-traumatic stress disorder accounts for why Jews are so sickly. It's been important for Jews to stay within our own gene pool because everybody else pretty much hated us and wanted to destroy us and our culture. Not just the Nazis, but basically everybody felt that way since, well, forever. We've been chased out of more countries than I have space to list. They say we are Christ killing vampires with horns, who drink the blood of gentile babies, caused the Black Death, and plotted the assassination of the Tsar. We are parasitic communists, and greedcapitalists who control the banks, government and media, and masterminded 9/11. So it has been important for us to stick together to keep ourselves and our culture alive. And amazingly we have survived, just like a really clever group of critters camping out in your attic and then escaping to our new digs when you call the exterminator!

While sticking to our kind has helped us make it through some hard times, I don't think it has made for a totally healthy gene pool. It makes people uncomfortable when I talk about this theory, but check this out: My mom has Hashimoto's Syndrome, an autoimmune disease. Her father had Myasthenia Gravis, another autoimmune disease. My dad's dad died from Kaposi's sarcoma, a skin cancer that is normally very rare, but is common among AIDS patients and elderly Jewish men. I'm not even going to get into all the mental illness in our family.

The medical repercussions of the small Jewish gene pool are so severe that it is standard practice for Jews to get genetic tests before marrying each other or before having kids together. Orthodox Jews have set up their own worldwide anonymous database where potential couples can enter their pin to find out if they and their match are an equation for fatal disease, and thus can call off a potential marriage early in the matchmaking process to avoid disappointment and heartbreak. This system is controversial within the Jewish community. Some see it as affirming eugenics and the idea that Jews are a repository of bad genes. I think the system is smart. It deals with the reality of how our history has made our bodies and it actively works to bring a little less suffering to a people who could use a break. My mom called me recently to tell my that my cousin, a young rabbi, and his new wife had genetic tests and found that he is a carrier for Cystic Fibrosis. Luckily his wife is not a carrier. It is unclear if he inherited the gene from my side of the family. The good news for me is that I'm probably infertile from all the chemo drugs and immunosuppressants I've been on over the last decade.  

A few years ago my treatment stopped working and the disease went into my kidneys for a second time. My doctors decided to switch me to Cytoxan, a drug I had been on ten years ago, a more serious chemotherapy drug that is only used when major organs are threatened. My dad was with me at the doctor’s office during that visit for the first time in close to ten years. At the time I had a girlfriend who would sometimes come with me to the doctor, but most of the time I go alone. Cytoxan can affect a person's fertility and my doctor said, “I don't know if you want kids but I can refer you to a reproductive specialist--”

"No." I said before she could finish what she was saying. Suddenly I found myself uncomfortable discussing the possibility of parenthood in the presence of my father. We had never discussed it before and there in the sterile office of my doctor who I had known for years but who still presented to me as a robot, and following stressful weeks of blood transfusions, kidney biopsies, and extreme physical duress, it didn’t feel appropriate or even important to discuss.  

Trying again, my doctor reassured: "I know there are all kinds of ways to make a baby these days--" Later I found out my doctor was pregnant and I would attribute this moment of uncharacteristic concern for me and my fertility to her own condition. But I have never wanted to birth a child and in that moment I was not interested in thinking or talking about being a parent by any means. I just wanted to figure out how to keep myself alive and then keep doing that every day. It seemed a difficult enough task on its own. Helping another person, a child at that, to do the same thing seemed impossible.

"No" I said again, ready to move on. In retrospect I don’t regret rushing through the conversation, and I don't really regret that my queerness combined with a decade of heavy pharmaceuticals has ensured that there will probably never be a mini-me running around, who with my luck and genes would likely have some life-threatening physical ailment and undoubtedly would be plagued with anxiety and bouts of depression.


"I recall many pleasant youthful memories when I remember the great love and respect with which my father would pronounce the word “Oshpitzin”, and he meant this with regard to the lively and many-faceted Jewish life that existed there, as well as the great influence that Oshpitzin had on other Jewish communities. There was something magical about the fact that the smaller towns around it, which could have possibly been independent in municipal terms, refused to become so, and they chose to remain a part of that cultural milieu in order to be able to say with pride that they were an integral part of that great Jewish municipality which was then called Oshpitzin County." --Yakov Seifter

The Passover seder is my favorite Jewish ritual. Every year during my childhood, we all gathered at my mom's cousin Shirley's house and I would get to see all my great aunts and uncles, who my ex-girlfriend pointed out were basically a bunch of grandmas and grandpas to me. I stuffed myself on matzah balls, brisket, veal, and candy fruit slices. I got to drink Manischewitz. I opened the door for Elijah and wondered if I could see his wine glass draining when I was far too old to believe that an invisible prophet was going door-to-door in the Jewish suburbs of Cleveland to drink wine.

My mom's family had been observing the seder together like this for our entire short history in this country. I often reflect on a picture of the family at the 1941 seder in Cleveland. My great-grandpa Jacob is in the center of the photo. Around him is the family, including my grandma, pregnant with my Aunt Carol, my grandpa two years fresh off the boat, and my great-aunts and uncles. In the photo they are all younger than I am now, the same old people with varicose veins and orthopedic shoes, who doted on me and covered me in wet kisses at the seder every year. They were the first of our family to be born in Cleveland, where we started our American history, where my mom and aunts, and my sister and I were born. Fifty years later, in 1991, when I was as young as Shirley in the photo, almost everybody from the photo was still at the seder. We read from the same Haggadah, said the same prayers, and ate the same food. There were differences but they feel minor. Like many Jews, Shirley and her husband moved to a 1960s ranch in the suburbs, most of the family had moved up in the class structure, and my generation had anglicized and Americanized names that my Hungarian-born grandpa didn’t pronounce quite right. My great-grandparents, who immigrated here and made us, were gone, and so was my grandma’s sister Susie, who died young from breast cancer, for which the Jewish gene pool contains its own special mutations.

Today the only people in the 1941 photo still alive and in Cleveland are Shirley, who is a young girl in the photo, and my grandma's youngest sister, Esther, a chubby teenager with bright lipstick. Esther lives in the same nursing home all of her sisters died in. The last time I saw her, my mom and I helped to move her up in her bed and I massaged her sore feet. She was so small and brittle I felt I might break her. Her body seemed to lack any muscle or fat and I could feel what seemed to be hollow bird bones just underneath her soft, thin skin. For years Esther has suffered from Parkinson's, another disease with a disproportionately high occurrence in Jews. Shirley was the only one of my mom’s generation to stay in Cleveland and she has been the one who has kept an eye on all of the aunts in their final years. It is harder for her to visit Esther these days as Shirley now has her own health problems.

One year at the seder when I was a teenager, my mom’s cousin gave her a copy of a manuscript of my great-grandfather memoirs. At the time it bored me and I don't think I read beyond the first page. Years later, while googling my ancestors, I found excerpts from the memoirs in an online database of Yizkor books (memorial books for the Jewish communities annihilated during the Holocaust). My great-grandpa wrote his Oshpitzin memories from Cleveland, where he raised his children and where he died. He describes the Jews of Oshpitzin as "stalwart heroes when it came to defending themselves during times of pogroms, and always repaid their attackers, and then some." He fondly remembers a vibrant Jewish community of scholars and well-spoken, brave rabbis who saved their people from pogroms, hunger, and unjust imprisonment. I'm beginning to think of my pre-Wegener's body as the Oshpitzin of my great-grandpa's youth--an idealized memory of the past I cling to--a time before my organs were persecuted by an overzealous army of antibodies with delusional notions about a plague within the fatherland.

Autoimmune diseases are caused when the body mistakenly identifies normal tissues and substances as foreign matter and sends out antibodies to attack these supposed invaders.  The immune system is overactive and confused and is attacking parts of the body that are, in fact, supposed to be there. Wegener's manifests through inflamed and dying blood vessels that aim to destroy the organs to which they are supplying blood flow. The antibody attacking my body through the blood vessels in my kidneys, my upper and lower respiratory tract, my skin, my joints and my eyes is called Anti-neutrophil cytoplasmic antibody but it is commonly referred to as ANCA. A nice acronym like NAZI. Just as my people were seen as traitorous foreigners in their own lands, so too are my organs. My defective immune system is the Pope, Ferdinand and Isabel, Catherine the Great; it is Hitler. The ANCAs are Crusaders, the Cossacks, Gestapo agents. My kidneys are Captain Dreyfus, my lungs Anne Frank, my sinuses and eyes Tevya the milkman and Fievel the mouse. All these crazy meds I take, I suppose are our corn-fed American boys come to liberate my anemic organs and also wreak some undue havoc in their wake, having their way with maidens in the French countryside and grabbing any damn lady they please to plant a kiss on V-J Day.  

It's common practice among Jews to remind ourselves and our children of all the anti-semites from days past and current times, to remind ourselves and our children of all who tried to destroy us, but also those who stood by and did nothing because they were anti-semites too, to remind our children that we are never safe, eventually they always turn on us. Like I said, trauma sticks around in a culture for a long time. We are educated with tropes of fear and betrayal entwined in our history. When I was young I was always told that Roosevelt could have bombed the tracks to Auschwitz and stopped the extermination long before the Allies actually did, but as long as the Nazis were using their resources to kill the Jews they were spread too thin to kill too many of the allied troops on the battlefields. Sometimes I think of my blood vessels like the train tracks that lead to Auschwitz.

In his memoirs, my great-grandfather mourned for the death of Oshpitzin. He wrote: "This was the Oshpitzin, which I knew fifty years ago. Does any of us have a concept of how the city looks now? I shudder to think of it, and my powers of imagination are too meager to imagine what has happened to this Town of Condemnation, because since the day that the German Nebuzaraddon, Hitler, may his name be blotted out, conquered Poland, Oshpitzin was transformed into the largest concentration camp. There, the mass murderer erected gas-chambers and crematoria in which he, by all kinds of horrible deaths, destroyed one and half million Jews."  

In 1945 the Allies liberated Auschwitz and returned it to Poland. But my great-grandpa mourned for the vibrant Jewish community of his youth. He wrote: "So, I ask a question, it seems that the Poles have received back their Oswiecim. Will we Jews ever have such an Oshpitzin again…?" Cytoxan and steroids might give me back Oswiecim but I need to figure out how to bomb the tracks to Auschwitz and restore Oshpitzin. The Allies gave the city back to the Poles and the drugs keep me from dying, but what of my Oshpitzin, the young healthy body I once knew? If I could borrow the strength of the heroes from my grandpa's memoirs, maybe I could incite an uprising and liberate my own body.