My Very Dear (and Hella Pretty) Lyme Fighting Army:
Unbelievably, this thank you letter is close to five months in the making. I’d like to say that time moves quickly when you have Lyme Disease, but it doesn‘t. Time rolls together when you are chronically ill, long stretches of it with little to delineate a day in January from a day in late March, except for a bit more sun.
I had set out all of those months ago to thank you. I thank you multiple times each day but I wanted to offer a thank you that you could see, a proper thank you that you could hold onto and come back to; even point the misanthropes in your life toward as evidence that there is good in the world, and that it originates in you.
Recently a 27 year-old man in Maryville, Illinois walked into a Baptist Church and shot its Pastor to death. The man, Terry J. Sedlacek, has a very severe case of late stage, neurological, Lyme Disease. He did not start out a shoot ‘em up kind of guy, but once those bacteria screw themselves into your brain and get the opportunity to hang out for a while everything about you changes.
It is well documented that he did not receive the care he needed. Very few of us are actually receiving all of the care we need. But in the absence of an adequate or sympathetic health care system the support and belief of one’s community makes an entire world of difference.
I wish you could see yourselves from here. You are many beautiful colors, all sizes, most socio-economic groups, many different genders, and many different sexualities. You run the gamut from the healthiest to the strongest crips and survivors I’ll ever lay my grateful eyes upon. You live all over the country, and in Canada and in Europe. You have various, and sometimes opposing beliefs. Some of you are religious personnel and some of you are not so holy. I’ve known you for most of my life and there are those among you I’ve never met – and still you are my family. You are smart and funny and kind and compassionate and you hold me up – you have held me up for over a year now. On my very worst days when I am certain I absolutely can not endure another minute of this I imagine your faces, and I hold on.
Some of you have donated generous amounts of money to my recovery. Some of you donate every week or every other week. Some of you, with almost nothing of your own to spare, send me $5 or $10. You send me care packages, femmes always send me make up because that is armor and they know it. You send me letters and e-mails and cards. Sometimes you pray for me, sometimes you light candles, sometimes you just close your eyes and think, simply, for my health. And, all of it – all of it – floors me. I cannot wrap my rapidly deteriorating brain around it.
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.
Audre Lorde wrote:
When I speak of change, I do not mean a simple switch of positions or a temporary lessening of tensions, nor the ability to smile or feel good. I am speaking of a basic and radical alteration in all those assumptions underlining our lives.
I believe that is an extremely elegant way of saying: Physician, heal thyself. It is arrogant and condescending to offer a hand you would not take. It is arrogant and condescending to assume that others should take that hand simply because you are offering it to them. And it lacks all common sense to believe that other people are infinitely more worthy of saving than you are. That knowledge is probably the biggest gift you have given to me and for that you have my unfolding gratitude.
I am still an activist. I am still driven by the desire to create conversation and ignite sparks wherever and however I can, but I understand now that I am part of an amazing community of my own creation and that community gives and takes as needed. It is not shameful to need help and it is not heroic to offer help – it is simply, and profoundly, what we do to take care of each other.
The infection is entrenched in my heart, my brain, my entire central nervous system to be accurate, and my musculoskeletal system. It is everywhere and it has had 14 years to grow cozy. At this time there are very few Lyme literate doctors who are willing to accept insurance (I am uninsured, but this is why Medicaid is not going to be super helpful to me.) That is because the insurance industry and their cronies have obscenely and unfairly prosecuted the very few medical professionals who have been willing to tackle and treat late stage Lyme. They have gone after their licenses and they have bankrupted them.
I have chosen the path of Integrative Medicine because the Integrative doctors have been on the front lines of treating the disease for years now. They understand it, they can comprehensibly evaluate your entire body (versus one organ or bodily system,) and they have the best treatments from all corners of medicine at their disposal. I have also chosen Integrative Medicine because it’s the only path I can afford. If I had to visit a cardiologist, a neurologist, a pain specialist, a primary care provider and so on…. if I had to pay for all of their time and all of their tests out of pocket I wouldn’t be able to proceed at all. Integrative Medicine makes sense to me, and it’s also kind of like “Saving Your Life On A Dime.”
Some people have estimated the cost of treating Late Stage Lyme Disease to be around $75,000-$100,000. My monthly medical costs average between $400-$1500+ depending on whether I am actively receiving treatment or not. Because of the incredibly advanced stage of my disease it is likely that I will need to treat it as aggressively as I can afford for the next eighteen months to two years, at least.
I understand all too well that this is a difficult economic time for everyone. I also understand that far too many queer, working-class women and artists die from preventable causes. I am no longer asking for donations so much as investments. I can not repay your financial gifts. But I can, and I will, repay the gifts of love and support and belief you have given, and continue to give me. I can, and I will, project your love for the rest of my life. And when I give back, which I am currently doing and will continue to do every day, I will do so in your name.
I don’t just need your money. I continue to need your love and your prayers and your good thoughts. I continue to need your inspiration on my hardest days. I need you to donate money and time to any cause or person that moves you knowing that your generosity will be returned to you abundantly.
I will take any opportunity offered to me to educate people about this disease and about the critical need for a viable Universal Health Care program in the United States, as long as my body allows. If you have, or know of any such venues, and you are willing to open them to me I will be in your debt.
And finally, I need your help in getting this information out there. If you are willing to forward and re-post this letter you will not only increase my chances of getting some semblance of health back into my life, you will increase the chances that someone you know who is suffering blindly from this disease, which is on the brink of epidemic, might finally find his or her way to help.
Thank you for helping me stay here and stay sane. Thank you for teaching me humility and compassion. Thank you so much for illuminating the way.