Barbers: A Cut Above

Today I was walking about Newburyport, Massachusetts, an old seaport, now a lovely tourist town, following an exciting whale watching boat ride. As Doug and I strolled past the sidewalk shops, I noticed an old-fashioned barber pole, with the red and blue stripes.

“Ever wonder how the barber pole got its stripes?” I asked Doug. He had not.

Well, medical science was basically primitive in the Middle Ages. In fact, barbers sometimes performed surgery. After all, they had razors, right? A standard treatment for just about any ailment was “bloodletting,” where the doctors—or barbers—would drain someone’s blood. It was believed that blood sometimes contained bad “humors,” and a build-up of them needed to be released. You can see a decent portrayal of it in the wonderful 1995 Ang Lee movie “Sense and Sensibility.”

The barber pole developed as a symbol of bloodletting. During bloodletting, the patient would grasp a pole to make veins stand out. Then the barber-surgeon would cut into a vein, and blood would drip into a basin. Afterward, blood-soaked bandages would be hung outside as advertisement. Twirled by the wind, they would form a red and white spiral pattern that was later adopted for painted poles.

Eventually the bandages would be replaced by a wooden pole, with painted red and white stripes. Variations of the barber pole appeared in different countries, with some alternating a blue stripe with the red, like the one I saw today.

While the barber pole is recognized around the world, its days could be numbered. The William Marvy Company of St. Paul, Minnesota is the sole remaining manufacturer of barber poles in North America. To date, the William Marvy Company has produced over 82,000 poles, but only sells about 500 a year.

When you spy a barber’s pole, you are seeing an icon that dates to the Middle Ages, and now is quintessential Americana.

Still Advocating at 89!

Revenge is sweet at age 89, even if it is only the knowledge that you were right and the experts were wrong.

On Thursday I learned my 89-year-old mother, affectionately called “Gram” by all, was rushed to the ER by my brother when she complained of really not feeling well, during his daily visit with her.

For those of you who know my mom, she is an 89-year-old spitfire; a rebel with all kinds of causes; possessing a passionate desire to educate the entire world about everything she has ever read or learned; still raising her 18-year-old great-grandson; and… a fantastic advocate for her own medical care.

In other words, not someone to trifle with or be dismissive of.

She is generally in excellent health. Absolutely no joint problems, making me look like the infirm as I struggle through some back issues. Active, still driving and driving all the grandkids and great-grandkids around town, going to church almost every day and reading several books at once. And politics? Don’t get us started!

So for her to complain about a health problem was odd. She does have diabetes, which runs in the family on both sides. But that’s been manageable. The latest issue was a severe pain in her lower jaw, that often manifested when she climbed the cellar stairs. And she climbed the stairs slowly, too slowly for her liking, and she had to rest after climbing them. These are the same cellar stairs she has been climbing daily for 60 years.

I suggested going to a dentist to rule out an infection under the tooth. She did and there wasn’t.

She had been asking her primary health care (PCP) physician, who has been her doctor for years. The PCP didn’t think the jaw pain was a concern, or the short breath. She rather dismissed it. From time to time, my mother would ask her again about it. Once my mother said, Do you think it’s related to my heart?

The doctor winced and said, Who told you that?

Well, that was that. My mother, age 89, decided to put her formidable advocacy muscles to work. She fired her PCP and found another medical center. Got a second opinion. This new medical team went right to work with a clean slate of opinions. Two stress tests (one a nuclear one) later, and the team determined she had a blockage in her circumflex coronary artery. Friday, June 11, she had a procedure, with her awake the whole time, to place a stent, to open the artery.

All this because she trusted her instinct, knew her body (she did give birth to nine children, so there’s that), and perceived an issue of sorts with a surly doctor. After months of no answers, finding the right medical team gave her answers in two weeks. That’s advocacy in action!

During the procedure, her hand started to turn a dark blue (the catheter was inserted in her wrist area), and the team was apologetic and assured her it would clear quickly. She replied, I don’t care! You can cut my hand off! It’s worth it to know I was right!

I never once wondered where I got my advocacy muscles from!

The Sum of My Parts

June is being celebrated, not just for the beginning of the end of the pandemic, but also as Gay Pride Month, which President Bill Clinton declared as Gay & Lesbian Pride Month in 1999 and 2000. President Joe Biden declared June LGBTQ+ Pride Month in 2021. LA Kelley Communications was the first hemophilia organization to publish an article about having hemophilia and being gay. Please read this excellent article by Justin Levesque, published in February 2016, about what it is like to grow up gay while having hemophilia.

There’s a memory I have, from when I was about eight years old, riding in the backseat of my mother’s white ’91 Pontiac Grand Am. When “Goodbye Yellow Brick Road” came on the radio, I repeated an offensive and overtly homophobic joke about Elton John, the punch line lying far beyond my comprehension. Perhaps I had learned that making the joke was important, an unspoken rule. Perhaps I felt it necessary to mimic the way my father spoke while creating as much distance as possible between the unconscious truth about myself and Elton’s music, which blared from the radio.

In later years, my mother would have to travel her own rocky path to reconciling the latent reality that her son was gay. But to her credit, in that moment, she steadied the wheel, disapprovingly whipped her head to look at me, and simply said, “Baby, that doesn’t matter when the music is so beautiful.”

While my personal identity remained mostly dormant and unprocessed for several more years, there was never any escaping hemophilia, the medical identity that was genetically determined to be seen and heard. Born in 1986, I narrowly missed the direct impact of the HIV epidemic that swept the nation through the tainted blood supply. This was also a period in our community’s history that predated prophylaxis: treatment was given only in response to a bleed, and the punctuated relationship between a bleed and pain was intimate.

These were formative years between a time of medical crisis and the promise of prophy. It was a place where resilience became an innate part of who I am, and when I first realized an acute awareness and responsibility for my body. And it is a place where I can still find inspiration from all who came before me, and take comfort in the  forged path for all who follow.

I never officially came out as gay or, as I now self-identify, as queer. Through adolescence, I embraced my medical identity as a person with a bleeding disorder. I accepted that there was indeed

something different about me. My blood doesn’t clot, and striving to project that I was “normal” seemed utterly exhausting. Each summer, my classmates would drive to an overpass with a river underneath. I’d go along, but it felt easy to choose not to jump off the bridge, down the daunting 25 feet into the dark, shallow water. What was there to prove? Allowing my medical identity to be a part of who I am was the internal scrimmage in the process of organically becoming the sum of my

parts, intrinsically woven. There was no need for an “out of the closet” announcement or to explain all the missed days of school. I refused to live anything but my truth.

Of course, there have been obstacles along this journey of identity. But oddly enough, the most difficult hurdle to navigate so far has been within the hemophilia community itself. The lesbian-

gay-bisexual-transgender-queerplus (LGBTQ+, but more specifically, gay male) community and the hemophilia community have a deep and complicated historical entanglement that originated during their shared health crisis of the 1980s. At the time, both communities were just entering into

what seemed like a period of liberation. LGBTQ+ folks were experiencing a newfound visibility in society while the advent of factor concentrate gave people with hemophilia fewer trips to the emergency room and the “invisibility” of home infusion.

That golden age was short-lived, and these two groups of people, essentially strangers, became embroiled in the fight of their lives. Fueled by fear and biased media coverage, the only choice was for both groups to acknowledge the other in what would become a relationship that was publicly antagonistic yet quietly supportive.

Some of the public antagonism cut deeply: people with hemophilia were portrayed as innocent victims of the epidemic. In response, LGBTQ+ activists rejected their presumed guilt, and proclaimed “All People with AIDS Are Innocent.” National Hemophilia Foundation established a “gay blood ban” in 1983. Meanwhile, hemophilia families looked beyond their HTCs to seek information and resources from LGBTQ+ HIV/AIDS support groups, and hemophiliacs themselves became activists.

Michael Davidson writes, “Hemophiliacs, by association with a ‘gay-related’ disease, were subject to homophobia on the one hand and what one commentator has called ‘hemophobia’ on the other.”1 Ryan White, threatened and targeted himself, in many ways encapsulates this sentiment. Specifically, in the mainstream media, his image was in part responsible for desensitizing the stigma around HIV/AIDS, but it also—despite Ryan’s consistent rejection of the criticism of homosexuality—created distance between hemophilia and the LGBTQ+ community.

When it comes to being gay/queer and having hemophilia, it can sometimes feel like these two key parts of my identity are in conflict. This, in turn, never fails to take me by surprise, given how important each was to the other in my coming-of-age tale. And, as I would learn during community events, that conflict inside me was not unwarranted. In 2014, after moderating a rap session for LGBTQ+ people with bleeding disorders, I was questioned on the validity of holding such a session. Then I was asked, “Why are you trying to bring AIDS back into our community?” Even with the amazing progress toward equality we’ve seen in 2015, it’s clear there is still a wound to be healed among us.

Justin Levesque holds a BFA in photography from the University of Southern Maine, with a specialization in the critical analysis of images and their impact on social norms and community expectations. He lives in Portland, Maine, and runs his own design studio, Shop Geometry. Justin serves on the board of directors for Hemophilia Alliance of Maine and runs a group of programs called FOLX (folxfolx.org) that celebrate arts and creativity in the bleeding disorder community. For more information on the LGBTQ+ community, please visit

http://www.glaad.org/reference/lgb or thesafezoneproject.com.