Dear friends,
The following is an email my friend sent to me after watching "Under Our Skin" at the Hollywood Theatre:
I loved "Under Our Skin." It was such an eye opener, and I think a friend of mine has it - he was diagnosed with Lou Gehrigs Disease (ALS). When I was watching it, seeing what those people went through, I keep thinking about when I met you, and how tired you were and how you told me you were paralyzed. I can't believe that doctors and insurance companies say it's not chronic. It enrages me. And that's understating it. I wonder when we will see a turn around? I was excited to see the breakthrough that doctor made - maybe now they will have to take it seriously.
So one thing that bothered me immensely: A couple of times I posted up on Facebook that I was going to see this documentary. I was mocked/made fun of, told it was gross, that they had to wash their hair. I could not believe the reaction my friends had to this. It struck home that no one really knows about this and it is everywhere. If they get it, they won't know what hit them or where to begin to look. And they could die because of it. Why is this disease not talked about? Wait. I know. Insurance companies. I am so offended that they would cover this up, that they would take away doctors licenses, that they would take away people's insurance. Now many people will get it and not know what they have for too long. It's scary.
For many reasons, I am intrigued by my friend's response. I am intrigued by her empathy, her frustration, and her search for the answer to the question, "Why?" People like my friend make me smile because they are an extra source of validation.
Similarly, I am intrigued by the responses of her friends. To be honest, I had read all her friend's comments on Facebook; I really wanted to respond to these people with something real clever like, "I would like to wipe my germs all over you" or "I didn't realize going to a movie was now so uncool." Fortunately, I kept my thoughts to myself.
Secretly, though, it is difficult to read or hear messages like this. I know that I am not detestable (far from it, actually), but the message still hurts. To read that people won't go to a movie because it's too gross is not only illogical, but also ignorant. I can't help think about how we have treated lepers, those with HIV/AIDS, the abused and neglected, the GLBT community, and the list goes on and on. We (including myself) are guilty for the way we treat people who are "different" from us. I say "different" because they may look different from us on the outside (i.e., different neighborhood, class, race, education, health), but on the inside, we are really quite similar.
Several years ago, I was doing an internship at a pro bono legal clinic in Chicago that represented people who needed an order of protection (also known as a restraining order). My job was to interview the applicants each morning, type out all of the paperwork, and do anything else to prepare the client for court in the afternoon. A good part of my job was to get the story (or stories) that compels the judge to grant our clients an order of protection. When women come to you saying their partner choked them, threatened to kill them, and kidnapped their children, this task becomes fairly easy to do.
Except when I receive resistance. One morning, I interviewed a woman in her 20s who had one child with her. She was seeking an order of protection against her romantic partner. This woman was also black. The interview seemed to be going well at first - she explained what events led her to seek an order of protection and gave me the name and the address of the defendant. But then when I began to ask her for more information, mostly to explain gaps in her story (who shares everything at first anyway?) or to answer questions on the paperwork, the woman became highly defensive. She refused to give me information and folded her arms. I tried to explain to her that the information was necessary to have a good case. She then lashed out:
"Who are you to tell me what happened? You wouldn't understand anyway."
I'm kind of embarrassed to say this (and I have never done this before or since in such a setting), but I straightened my back, looked at her straight in the eyes, and raised my voice, "Actually, I do understand! I was abused for seven years as a child and it was the most difficult thing I have ever experienced. Maybe I am here to help you because I understand what you are going through. Now please answer my questions."
The woman's eyes were big and her mouth agape. We soon finished the interview; later on, she received her order of protection.
I think the difference between my friend and her Facebook "friends" is empathy. When you know a person - like really know who that person is, know her story, know what makes her laugh, know what makes her hurt - it is way more difficult to ignore the imago dei, the image of God living in her.
But what's even more difficult is to ignore your own - the image of God living within you.
In response to all of those who have questions about Lyme Disease, about living with the illness, or anything else about me, my community, or experiences, I invite you to use the comment section to ask me questions. As a friend once said, people are given permission to be dumb. Thus, nothing is off limits. I will do my best to answer your questions here.
A.
3 comments:
Well...as promised, I'm here to post. I changed my original question from one to two, though. I was more curious than I thought :)
What are two things you hope to see in your lifetime?
Very well said. Having Lyme Disease forever changes the way you see things. And I think it helps to draw into one's life only the kind, empathetic, understanding, and compassionate people a person would want in their life along this journey. The people who live life with their hearts open, who "get it" even if it's not from having LD per se, but other traumatic experiences or life challenges, health challenges, etc. Instead of a bump-free, bubble gum life lacking in the life lessons of empathy, struggle, and compassion. Not that there's anything wrong with a bubble gum life, but I couldn't ever seem to relate well with those people either. Had too much of a speed bump life perhaps ;). I do not think I can go a day without living life through compassion and empathy now, and for that I am glad.
How many lymies does it take to screw in a light bulb?
Ahh, it brings joy to my heart to read your words, Athena! This is great encouragement. I urge you to keep sharing your life with those around you - they will be much better for it! Anna
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