Writer's Note: An untold number of people in our communities are suffering terribly with Lyme disease. The following is a comment I felt compelled to write after reading Velvetpark's featured article on Sini Anderson's Lyme struggle. I want the queer community to see that supporting one key person with this illness, while an amazing and beautiful feat, does not let us off the hook. If we're to call ourselves a community, to own and enact what that means, we must face head-on the widespread devastation Lyme inflicts on so many, most of whom have no access to the social capital needed to raise such an extraordinary amount of medical funds. I thank Velvetpark's editors for encouraging me to publish my comment as a separate blog.
First and foremost, thank you for writing this article. And thank you to Sini for being brave enough to ask for help (I know how difficult that is) and to her community for coming through in such a miraculous way. Thanks also to both of you for raising awareness about the devastation Lyme can cause.
I have late-stage lyme, too. I've had it most of my life, was bedridden for about a year or more seven years ago. The disease nearly killed me. It's a miracle i'm alive at all, and I try to remember to be grateful to my body each and every day I wake up. My story is heartbreaking, as are the stories of so many with this disease. (If you'd like to read my story in full, please visit the following LINK.)
I have no family support, and no partner. I can barely afford rent and food, let alone treatment. I am at serious risk for homelessness in the near future if things don't change, and fast. I, too, started an Indiegogo site for myself. The difference? i've raised $2600 in about 1.5 months' time. Please don't get me wrong—I am so, so thankful for every single person who's donated and/or shared the link. Words can't express my gratitude, in fact. But the fact is I'm just some no-name queer woman fighting for her life. I'm not famous. I'm an artist, too—a poet, musician, visual artist—but I've been so sick for so long that there's been no hope of getting my work out there, and very little opportunity for developing that work in the first place.
Because no one knows my name, there is no way I could ever hope to raise even a fraction of what Sini's partner and friend raised for her. So as I watched the money pour into Sini's campaign, my heart both rejoiced and hurt in ways too complex to put to words. I am happy for Sini. She deserves every penny. But I deserve to live, too, and I am tired of the culture of fame that pervades every aspect of our lives, even within the most progressive of queer communities. In fact, my fundraiser has been extremely successful when compared to those of other non-famous folks with Lyme who've launched campaigns—I don't know a single one that has raised over $2000. The difference in the response to ordinary folks' medical fundraisers and the fundraisers of folks with any amount of cultural recognition is staggering. So many people are suffering. So many desperate and dying with this illness. Please don't let one successful campaign prevent you from seeing the rest of us.
Sini has given so much to the queer community and the world at large. I'm happy she's being supported through this awful disease. But the truth of it is this: the queer community (or any community at all; ours certainly isn't rare when it comes to this) doesn't rally in this way for folks who are not well-known within our community. I believe that everyone, regardless of how famous their name/work/art, deserves that same beautiful outpouring of support. We all give in the ways we're able. This illness robs lives, it forcibly isolates you from your community, and if you're sick for long enough it robs creativity and possibility as well.
For more information about my current situation, or if you'd like to donate or spread the word, please visit my Indiegogo site. And please keep an eye/ear out for folks you've never heard of who are battling this insidious disease. We tend not to have access to a large support network, and as such we need your help more than you know.
Thank you, from my heart, and blessings of health to all of you.