The Day the Earth Stood Still

I could not think of a better explanation of the events of the past few days...it's like I've been frozen in time, and it all began with one moment. It's funny how something can take you completely by surprise even if you were expecting it all along.

A few days ago I called my primary care physician to see if their office had received my children's Lyme tests that had been forwarded to them from Lab Corp. During the course of the wait I had gone back and forth over what fate I was rooting for. If the results were negative, I felt I would be happy but suspicious and skeptical; if they were positive I would be alarmed, devastated, and relieved. Given the sketchy symptoms of each of my little ones I hoped I didn't have to be skeptical. While in the midst of panic I will often try to control the situation by imagining every possible scenario that can play out (superstition convinces me this will ensure the best outcome somehow), and ultimately the one that never occurs to me is what unfolds before my eyes. I did not see in the proverbial cards that one child would test positive and two would not.

I was standing on my front porch when I received the call. Devastation did not even have a moment's breath to settle in before I was being chastised by the nurse for taking my child to a specialist. I wanted to reach through the phone and wring a neck or two. This from the office that refused to test my kids in the first place, hence the visiting of said specialist. And to add insult to injury: "The test shows she HAD Lyme disease, but she's over it now." Really, motherfucker?? WOW. These people are college educated and spent how long in medical school?

Yes, the lupus-esque butterfly rash, unexplained fevers since babyhood, monthly recurrence of strep throat, muscle aches and numbness definitely suggest she's "over it". Oh, and how about that whole SHE'S NEVER BEEN TREATED FOR IT thing?

In a rage, I peeled out of the driveway after insisting (against immense reluctancy on their part, once again) on picking up copies of the results in person. By the end of the 10 minute drive I had cried out most of my anger. I tore open the envelope holding the results in the parking lot so I could see them for myself. I have to say, they were impressive. My little E, only 7, positive on both the ELISA and Western Blot tests. I knew then that this is real. I have passed this horrid disease onto my child.

Little E had been waiting for those results too. Though we'd decided to delay telling her, she began to ask questions until I could only let her in on the truth. She simply cried. But then her face brightened, as only a child's can. She was like me now. And the worrying we'd both done from not knowing was finally over.

Of course a negative test does not mean my other two children are negative. And my husband has an appointment to be tested as well. So many uncertainties and I couldn't think straight. I could only focus on the swell of fear rising to a crescendo inside me.

At home I let my husband ponder the possibility of false positives and got to work googling the names of different tests. I asked my online lyme network friends about them. I buried myself in the details. And I forgot how hard it was to get someone to treat this disease, even though I'd just gone through it for myself. The deja vu was too little too late as I sifted through names of doctors and heard the receiver click in my ear again and again. We don't treat Lyme. We treat acute Lyme but don't have a license for children. There's a waiting list a year long. Ask your PCP. No one understands how hard it is to find one doctor to deal with Lyme until they have to look for themselves. No one realizes that this is the disease doctors don't want to diagnose, treat, or even have mentioned in their offices. Lead after promising lead became a dead end. And I felt so much more insulted than I had when searching for a doctor for myself. This is a seven year-old child, I told them. Have you no shame? How will you sleep tonight after turning her away? And yet they must have; the clicks and refusals continued until I just couldn't take another.

In desperation I twittered about my dilemma. Only others with Lyme know your devastation, your frustration, your fear that your child's fate lies in your hands. So many rallied to my side, and I could not have made it through that day without you all. It is because of your help that I have back up plans for my back up plans.

Then once again, a scenario occurred that I could have never imagined. Today I received a call from the local Health Department, requesting an interview about E's positive tests. They informed me that without the bullseye rash or Lyme-induced meningitis or encephalitis even two separate positive tests would not be reported as a case of Lyme for the county. Those reporting guidelines were coming from the CDC, further narrowed by the KDHE. I primly informed the lady caller that the guidelines needed adjusting, and bemoaned my situation to her, hoping I was one of a thousand who'd told her the same thing and that such repetition would create some kind of impact. Instead she promised to find out more information and get back to me. I hung up with a shrug, recognizing that old trickery - anything to get a preachy self-proclaimed activist off the phone. Then the oddest thing happened - she really did call back. A few hours later there was a message on my voicemail with a referral to a new Lyme clinic opening up in the Kansas City metro - by a doctor whose name I'd been given months ago. (I'd been told this doctor had left Kansas to pursue a license in another state, and apparently that state had been Missouri.) So I filled out an online application and if the website is true to its word, I will hear back about an appointment for E in 24 to 48 hours.

Since receiving the results of these tests, something has changed inside me. I am no longer pushing myself for myself to achieve the dream of being well. Within that, there was always the option of giving up. Now that I know I am fighting for my little girl as well, giving up is obsolete. There is no such thing. It doesn't exist. I have no doubt this will be a long, hard fight. But we're going to win. I think we're both up to it. I know I have to be. Rivulets of pain streak across my head, the words I write seem to make no sense, and my hands turn to claws as I type. I will not let this happen to my daughter. The CDC won't let her be a statistic. And for very different reasons, neither will I.