As a follow-up to my post about Dara’s experience with chemo I thought it might also be helpful, and provide some background for other posts around my care taking lessons learned, to talk about the process of her diagnosis and the surgery prior to chemo for her breast cancer. This is also another information dump sort of post—it’ll be interesting for someone who might be going through this process or having someone they know going through it to read a detailed experience.
I’ve been trying to find a way to talk about Lyme Disease and how it affects the queer community. I grew up a woodsy outdoorswoman going to Girl Scout Camp in Northern California with signs that warn of deer ticks carrying Lyme disease. I saw the signs that told us to do tick checks, as a camp counselor I’ve coordinated big groups of young people in looking for ticks and being aware of them. I know to seek medical attention if you see a bullseye rash, especially if you get a fever or aches following exposure to a tick bite. (The CDC has a guide to symptoms of tickborne illness, if you’re lucky enough to know you got bitten.)
I’ve heard that only 20% of folks with Lyme Disease had a tick bite that was identifiable. It’s a disease that sneaks up on you, is vastly underreported and very difficult to test for. (It’s estimated that the cases of Lyme Disease are actually 10 times higher than what is reported.) Because of these factors it is really difficult to get a diagnosis and appropriate treatment plan. Insurance companies and the US Government are both very unwilling to concede to the actual appropriate treatments for Lyme Disease, doctors lose their license for treating it effectively, paying out of pocket for treatments is wildly expensive… This is a very scary, very real and very deadly thing that is happening to more and more people.
Over the years I’ve known a few queers with Lyme Disease. I’ve connected with some about treatment as they’ve used a similar anti-inflammatory food plan as I have, or who have battled candida overgrowth like I did because of the mammoth amount of anti-biotics used to treat Lyme.
Photo of Leslie Feinberg from Advocate.com. Have you read Stone Butch Blues yet? You should.
Ever since Leslie Feinberg died from Lyme Disease, I’ve known we need to talk more about Lyme Disease in the queer community. I didn’t know how to have that conversation, so I just started to bone up and educate myself.
I watched the documentary Under Our Skin, free streaming on You Tube, which according to folks I know with Lyme, it is an accurate portrayal of what it’s like to seek treatment for Lyme Disease and it is shitty. It’s the kind of helpless I feel when I see really big world problems that need solutions. But I know what I do have control over and that’s learning more about it, asking questions and opening conversations.
Here’s the trailer for Under Our Skin:
I also watched the Punk Singer, the Kathleen Hanna documentary by Sini Anderson. Kathleen opens up about her Lyme Disease and how it affects her life. It’s a really powerful double feature. The Punk Singer is available on Netflix and to buy on iTunes. (It’s great in addition to the Lyme content to hear about the Riot Grrrl movement, see great interviews with queer heroes like Lynnee Breedlove.)
Here’s the trailer:
I may not know what to say about Lyme except, I’m here and I’m listening and reading about the disease and experiences of those with the disease. And I want more people to listen to folks with Lyme and hear them. And see them, and help them be part of the queer community even if they physically can’t be there.
Photo from Jessica’s Lyme Treatment Fund.
My friend Jessica Scarlett and her wife Nik are fundraising $9,000 for her Lyme treatment. Maybe you have a few extra bucks for a stranger or maybe you know them from somewhere on the internet, like both of their really awesome art and etsy stores. NikScarlett.com
Jessica’s vintage collections and sales are the coolest.
I met Jess when I was a baaaaby gay in Sacramento, CA in the late nineties and Nik when I moved to Philly. They are a really cool couple and battling a really shitty disease.
I’ve also followed Fran Varian’s battle with late-stage Lyme Disease for years, as she is an incredible writer and femme so many folks I know have adored for a long time. The thank you letter up on her Help Heal Fran website is a poignant article about living as a queer with a chronic, expensive illness.
Photo of Fran Varian from HelpHealFran.org
The below passage from that piece really hit me. I think a lot of Femmes participate in queer community from a place of giving–but it is so hard to be Femme and in a place of needing help sometimes. We have this notion about ourselves as Femme that we have to be resilient warriors doing it on our own.
Before I knew that I was sick I was proud to be an activist. I worked for social justice in the health care industry and I donated my time to teach kids about poetry. I read and I performed at fund raiser after fund raiser. I wrote and spoke extensively with the earnest hope of making a difference in someone else’s life. Before I became sick I held a deeply-rooted belief that it is noble to give of one’s self and shameful to require gifting, though I never would have said that out loud.
Now I think differently. And because my body does not frequently cooperate and allow me to physically accomplish all of the things I want to I have a lot more time to think. Before late stage Lyme became my daily reality I allowed the pride I felt in being helpful and in giving to define me. I thought it said something about me. Unlearning that vanity has been almost as difficult as learning how to live each day with a daunting, progressive illness.
Avril Lavigne was on the cover of People Magazine last week coming out about her retreat from the spotlight while she underwent extensive Lyme Disease treatment. It’s awesome when celebrities bring awareness to it. Wealthy folks obviously have a different experience with treatment because they have access to funds for treatment insurance doesn’t cover. But still, the more awareness people have about it and the more we talk about it the more we can turn the tide of these awful insurance companies and maybe move closer to single payer healthcare/government run medical coverage for everyone.
Do you have an awesome Lyme resource to share? An article you read and resonated? A documentary, video, blog? Leave the link in the comments!
(I had some cool ones on my facebook fan page, but I’m still locked out of Facebook pending giving them a government id to their satisfaction).