I am re-posting (by request) her letter to her supporters in her fight against Lyme Disease, for which she has no health insurance. You might remember Fran from my post some time ago about the book "Without A Net," an anthology by and about working class women. The letter below makes a very important point that I think applies to most women--the ease of giving vs. the shame around asking for help. It's an issue that I confront myself and anyone of us will if we are seriously ill or in need. Given these difficult economic times, we should be reaching out to each other and asking for help or offering it, or pooling our resources as needed.
Here is her letter:
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.
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