I keep watching that performance by Susan Boyle (the link is in my previous post) and the tears keep coming. Why? And why here, a blog about chronic illness?
I think it's what the judge Amanda said. Everybody expected her to sound like she looked. She's almost 48 years old. Never been kissed. Not pretty. Sort of a weird sense of humor -- a bit bawdy swiveling her hips, I thought.
Everybody -- everybody -- thought it was a joke. Everybody expected her to sing like she looks. Before she had one note out of her mouth, everybody had judged her.
And then came that voice, and it's astounding how gorgeous and powerful it is. It's hard to match the person with the voice, and yet, there it is.
Still, what does this have to do with chronic illness? EVERYTHING!!!!
We are sick. We are exhausted. We don't take as good care of ourselves as we should. I don't remember the last time I went clothes shopping. I look like a fat middle-aged woman who can't move very well. And it's been so long since I've been kissed that it may as well have been never.
But I save lives. I inspire people. I know this must sound really egotistical, but it's also true. And you can, too.
Don't let this body fool you. Don't let your own body hold you back. You have an angelic voice within you waiting for a chance to soar. Write it. Speak it. Paint it. Be it. Do it. Let it out. Speak the words. Speak your heart. Sing it.
Our chronic illnesses can hold us back if we let them, just like being not so pretty from a small village in the UK, being overweight and alone, could have stopped Susan Boyle. And really, she didn't think about all those obstacles. She just thought this was her chance to shine and she took it. And boy oh boy did she shine.
We can do it. I know it.
I'm going through a tough time these days. You know I have c-diff, and the antibiotics are kicking my butt and I feel like a truck ran over me. But it's more than that.
There's a medical office in Texas that found me when one of their patients had trouble with an insurance issue. I resolved that issue, and whenever they had a patient with a need, they referred the patient to me. So when they referred Laura (pseudonym) to me, it was nothing remarkable. Her case was particularly complicated. And she had an "insurance consultant" also helping her. I spoke with the "insurance consultant" once. I said that we couldn't both contact the insurance company, so one of us would have to take the lead. She said I should.
For several weeks, I worked on the file. The insurance company kept asking for more information and I provided it. Finally, they had what they need and submitted it for decision.
And then I got an email from the client firing me. I asked why. I knew it would hurt the case because the insurer might feel under less pressure without a lawyer in the mix. The medical office spoke with the patient. It seems that the "insurance consultant" runs a "church" out of her house. She has maybe 10 members. And she had decided I was the devil. I'm not sure why; the only thing anybody ever raised with me was whether I was working for the patient or for the medical office. Since I have NEVER done a collection case for a medical office, I was pretty vehement in stating that of course I was working for the patient.
The patient then rehired me.
Then she fired me again.
All with no explanation. In the space of about 24 hours. Fired, rehired, and fired again. When the "insurance consultant" talked to the patient, I was fired. When the medical office talked to the patient, I was rehired. Clearly, this poor woman was being pulled apart by others.
I got a call from a lawyer who was going to take over the case -- or was thinking about doing so. I was very careful about what I said -- maybe he's part of this "church" too. But I told him what I'd done on the case. He said it sounded like I had done just right. He actually apologized for how I was treated. He volunteered that he thought the patient was under undue influence. Again, I was careful not to volunteer my own opinions. He said he hoped he could work around the problem because he was local and could meet with the patient face-to-face. I wished him well.
Then I got a call from the insurance company. The woman I'd been working with there got my letter saying I no longer was representing the patient. She was surprised and confused and told me that she thought we'd been working so well and I'd been doing such a good job. I told her I couldn't comment, but thanked her for her kind words.
Because this was a communication about the case, I sent the patient and her "insurance consultant" an email reciting the conversation with absolutely no editorializing. I felt obligated to report any communication about the case.
Well, the insurance consultant responded. Here's what she said about me. "Unprofessional." "I have suspected that you were an alcoholic or perhaps on drugs due to your off the wall times in working and the bi-polar behavior you have displayed." "Lunatic." I "yelled" "profanity." I am "disgusting."
This was last Friday. It hurt me terribly. As if all the good work I do could be wiped out by this woman who doesn't know me, who doesn't care whether keeping me on the case was best for this patient. With my gastroparesis, if I drank or did serious illegal drugs, I'd land in a hospital pretty quickly. It's true that I work strange hours -- sometimes starting as early as 4 am -- but that's because I'm committed to my work and my gut doesn't let me sleep, not because I have a psychiatric problem. And I had one conversation with this woman during which I did not yell or use profanity. Indeed, my notes indicate that it was a brief, non-adversarial conversation of relatively little significance.
Over the week-end, I talked myself down from the major upset. If roughly 6 people out of 3000 or so have been unhappy with my work, my advice, that's a pretty good batting average. But still, the whole thing has nagged at me because I know it would have been best for the patient for me to finish the case. I had developed a relationship with the insurance company. I had answered all of their questions. They were waiting for a decision from above, as were we. There was nothing left to do on the case.
Regardless of my rationalizations, somehow I felt that I failed the patient and, of course, failed Advocacy for Patients with Chronic Illness. If anybody -- even someone who's clearly making baseless allegations with no foundation in reality -- thinks I'm so horrible, then I must have done something wrong.
And then, Susan Boyle. Right when I needed her. She reminded me. What matters is what's in my heart, what I do with my voice. I can't let one challenged "insurance consultant" with whom I've spoken once make me cynical, like the audience who thought Susan Boyle was going to be a joke. And I can't let my "audience's" cynicism define me. If they get a good resolution to that case, it will be because of my good work -- nothing more and nothing less.
I can't fix everything, for sure. But I can be Susan Boyle. I can look tired and old and fat. I can be all those things, and sick, too. And I can still sing.
Susan Boyle touched the raw spot in me, the spot that feels misjudged and wrongly accused. She reminded me that the best response is to SING -- with all my heart.
So what does Susan Boyle have to do with chronic illness? She reminds us that we can shock the world with the beauty of our voices. We can kill cynicism with the power of our songs. Whether we're old or fat or sick or ugly, we can still SING.
Screw the "insurance consultant" church lady. She can't undo the good work I've done, nor can she stop me from doing good in the future -- as long as I don't give her the power to stop me from singing. Jennifer