A Quote by Kathleen Hanna
I saw a video on YouTube of a girl who had very similar reactions to late-stage Lyme disease as I did. And I thought it was crazy. And when I saw her basically have a seizure on camera that looked very much like my seizure I felt, "Oh my god. That's me." And so it was really important to me, and I said to Sini, 'We have to find some way to not just talk about Lyme disease, but to show it.
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Lyme disease is very debilitating. Being from the East Coast I know Lyme disease is quite common and may lay dormant and may produce flu-like symptoms, as well as neurological issues.
It's like you're wearing a really amazing dress and high heels and you've just gone to the hair salon and gotten a facial and you feel fabulous, and then someone says, You look really awful. You're thinking, Was I completely delusional? That's what having Lyme disease feels like. It was very lonely and for many years I just didn't talk about the way I felt because I assumed if there's nothing wrong on paper, maybe this is just the way a human is supposed to feel, and I'm just complaining about it.
I have chronic - well, I like to call it late-stage Lyme disease and not chronic, because I like to think someday I'll be all the way cured. It took me a really long time to get diagnosed, and I was misdiagnosed for a long, long time. I was very ill during the end of Le Tigre, which was kind of why that ended, amongst other things.
The Centers for Disease Control and Prevention has established highly specific criteria for the diagnosis of Lyme disease: an acknowledged tick bite, the appearance of a bull's-eye rash, and, for those who don't live in a region where Lyme is common, laboratory evidence of infection.
I have late-stage Lyme disease. I was misdiagnosed for many, many years and told I had lupus, MS, Crohn's disease, even degenerative arthritis. And finally in 2010, I got the correct diagnosis, because on the last Le Tigre tour, I was having several seizures a day and at times not being able to brush my own teeth.
Lyme disease has become a fast epidemic worldwide. I am determined to help find a cure and figure out a way to share knowledge with the millions of people struggling with this debilitating disease.
In 2013, after a challenging two years of long-term IV antibiotics and six weeks at a clinic in florida, I received the 'Star Light' award from the Lyme Research Alliance for my advocacy and strength to light the way of Lyme disease awareness.
A journalist in Toronto named Shannon Boodram saw my Facebook page and told me I was 'strikingly beautiful.' She shot a YouTube video of me, and it made a hit, grabbing thousands of views. She said the camera loved me and that I should be a model. I had never thought about modeling - it just hadn't seemed possible.
One of the patients that really stands out for me was a middle-aged woman who actually had HIV in the early days, and helping her kind of come to terms with that. She had rather late-stage illness, but just helping her, sort of cope with the challenges of the disease and the infections and all that, but also her social issues, like, coming out to her family about the illness, and a very religious family.
In his or her own way, everyone I saw before me looked happy. Whether they were really happy or just looked it, I couldn't tell. But they did look happy on this pleasant early afternoon in late September, and because of that I felt a kind of loneliness new to me, as if I were the only one here who was not truly part of the scene.
I had the idea of 'Live From Daryl's House' way before I contracted Lyme disease.
I would love to bring to light, besides just educating about Lyme in general, that it's a very complicated disease and it's very, very scary for the people who are dealing with it because your insides don't match your outsides. That can be very infuriating because people would say, "You look great." And you're like, I can't even carry on a conversation with you right now.
My grandmother took me to a play, and... there was a little girl on stage. And as soon as I saw her on stage, I thought, 'This is my job'... I was probably, like, 7 or 8. I was very young... It was 'Joseph and the Amazing Technicolor Dreamcoat'.
The Lyme disease had so severely affected my brain functioning that it was extremely hard for me to think, form sentences, and stay focused.
An easterly is the most disagreeable wind in Lyme Bay — Lyme Bay being that largest bite from the underside of England's outstretched southwestern leg — and a person of curiosity could at once have deduced several strong probabilities about the pair who began to walk down the quay at Lyme Regis, the small but ancient eponym of the inbite, one incisively sharp and blustery morning in the late March of 1867.
Lyme has brought me to my knees; this disease is a silent killer and does not have a face.
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