I spend a lot of my time encouraging my loved ones and others to take their health and their symptoms seriously. Sadly, I have a really hard time taking my own advice. Two weeks ago I started experiencing a lot of disruptive GI symptoms that I attributed to increased stress. By this weekend those symptoms hadn't stopped, and I still didn't really do anything about it. I resolved to continue ignoring it so I could attend a conference in Philadelphia that I had bought a ticket to and booked accommodations for at a time when I was feeling much better than I have been for the last few weeks.
As it turns out, and I already knew this, my body really isn't a fan of travel--or any disruption to my routine, for that matter. My steady diet of bread products, soup, and Gatorade did little to help manage these ongoing symptoms--although my aggressive attempts to stay hydrated have, at the very least, kept me out of the ER. By the time I got to the conference on Monday morning, I was feeling extra dehydrated, weak, and exhausted; but I spend so much of my regular, living in my body time feeling dehydrated, weak, and exhausted, I somehow forget just how dehydrated, weak, and exhausted it's possible to get. Halfway through the first day, I was feeling like the walking dead, which was appropriate given the conference I was at was Death Salon: Mütter Museum.
I'm outing myself here as a real weirdo. I know how weird it sounds that I went to a conference about death, but it was an opportunity I just couldn't pass up. This was the fifth event of its kind, with Death Salons having been hosted in Los Angeles, San Francisco, and London. This Death Salon was held at the Mütter Museum of the College of Physicians of Philadelphia, which is one of my favorite places in Philadelphia, and possibly, the world. The Mütter Museum is home to an incredible collection of medical history, specimens, models, and old timey medical instruments. One of the Death Salon organizers described the Mütter as the "Happiest Place on Earth," and I am inclined to agree. Most people I know would be very grossed out by the majority of the collection, but medical oddities really make my heart sing. I am, after all, one of them myself.
I have always been fascinated by death. It's one of the very few things that every single human who has ever and will ever live will experience--and yet, we all wander around pretending it's not going to happen. Death is such a huge part of life that simply ignoring its existence, to me, is bananas. I spent a lot of time as an undergraduate studying representations of death and its associated imagery in art and media. I continue to be very interested in end of life issues and cultural attitudes about death, so how could I not attend Death Salon: Mütter Museum? I knew if I passed up this opportunity I'd regret it forever, and despite feeling like a post-autopsy corpse for the two days the conference went on, I am so glad I attended.
Death Salons are hosted by an organization called The Order of the Good Death, "a group of funeral industry professionals, academics, and artists exploring ways to prepare a death phobic culture for their inevitable mortality." So basically, these are my people. There were talks on the difference between the work of forensic pathologists on TV vs. what their work is like IRL, Egyptian mummy conservation, contemporary mummy traditions of cultures in Asia and South America, the now-famous Death Class at Kean University that has a three year waiting list, the bodies of Incorrupt Saints, preserving trans identity after death, and panels like Ask a Mortician Live, Death Spaces, and one on anthropodermic bibliopegy and the Mütter's collection of books bound in human skin--the world's largest verified collection of such pieces. All very relevant to my interests.
The talk that really touched me the most was Sarah Troop's presentation called Los Angelitos: The Rituals and Art of Child Death in Mexico. She discussed how drastically different child death is dealt with in Mexico, and finding comfort in these cultural traditions after experiencing the loss of her own pregnancy two years ago. I cried through the whole thing, and then straight through the next talk. I was crying because pregnancy and infant loss is sad, but mostly, I was crying because I was angry. My anger stems from the fact that here in the United States the only cultural traditions we have for dealing with this kind of loss is silence. These situations are often described as "unspeakable tragedies" because we have no language or context to talk about them. The fact that women have to go through this kind of loss alone, and in silence, makes me so angry I'm crying about it again as I write this now.
Sarah mentioned both in her talk, and in the interview she did for The Longest Shortest Time's episode on how to talk to kids about death, that she was really hesitant to talk publicly about her own experience. She was hesitant because her early experiences of trying to talk about it openly--even within the death community--were so negative. I am so very grateful to Sarah for having the courage to speak out on this issue, and for making herself so vulnerable by sharing her own story. The long line of women waiting to talk to her after her presentation indicated to me just how important this talk was.
I was feeling so sick during the first day of Death Salon, I almost packed up and went home that night. If I had, I would have missed Sarah's talk and the rest of the second day's presentations that I enjoyed so, so much. On Tuesday, I was even interviewed by a reporter from WHYY's (Philly's public radio station and home of Terry Gross) The Pulse, a show about health, science, and innovation. We talked about my long diagnostic process and living with obscure diagnoses. I was very tired, and possibly incoherent, so I'm not sure if they'll use the tape, but it was very cool to be interviewed by someone from the station that got me hooked on public radio.
While I feel like a real jerk for ignoring my body, I am so glad I went to Death Salon: Mütter Museum, and so glad I didn't leave early (although I did have to skip the evening activities on both days). Death Salon was a fascinating and fun exploration of one of my favorite topics, and totally worth the physical consequences I'm experiencing now. I'm happy to be back home, encased in my shrine of pillows and Gatorade bottles. I even finally went to the doctor, although my blood pressure was so low they couldn't get a reading from multiple attempts on multiple machines. She called this morning to tell me, based on my blood work, it looks like I've actually been dealing with a virus, and not "just stress." So file this one as another case of not taking myself seriously and letting myself be sick. Maybe next time I'll get it right.
I've already written about October being Dysautonomia Awareness Month, and you probably already know that it's Breast Cancer Awareness Month too, but did you know that October 15th is Pregnancy & Infant Loss Awareness Day?
You can check out October15th.com for more information and resources regarding pregnancy and infant loss, an issue that affects 1 in 4 women, and isn't talked about anywhere near enough.