Thursday, December 17, 2009

Lyme Disease

Nearly five years ago I began to feel sick. Nothing specific, a general feeling of grave illness. I actually felt the presence of Death, my death. I was shaking with chills and sweating so profusely that streams of perspiration would drip down my spine as I stood in front of a class of SAT students in the summer of 2005. I began losing weight. I started wearing clothes I'd never been able to get into. My face was becoming angular. I could see my jaw and cheek bones. This was not all bad. Getting thin in our society is the right move. Thin is good; heavy is bad. Or so the commercials would have us believe.
I made plans. I decided to cut back on my teaching load and eventually retire early so that I might enjoy whatever time I had left. Cancer runs deep in my family and I have no illusions about escaping that sentence. When my weight loss became dangerous and my libido died my wife decided it was time to fight back. I'd been to my doctor a few times, but he missed the diagnosis by a mile. I never thought much of him or his skills so I neglected to mention that months ago I'd had a rash on my ankle--a nasty, irregular-shaped, blood-colored ovoid. Friends became concerned about my health and forced me to find a good doctor. You know how that goes--the really skilled practitioners are jammed with patients and their practices are closed. You can't get in. By a stroke of luck I had taught the son of one of Woodstock's most skilled doctors and was able to whine and plead my way in. At our first meeting my new doctor said, "Do you want to know what you have?". I was stunned. He said we'd need blood tests to confirm, but he was certain I had Lyme Disease. He was right. And the damage was already done.
Let me tell you about Lyme Disease. I know two people who have chronic Lyme similar to my case. One is a young woman with a husband and two young children. Her Lyme has attacked her heart. She lives in constant panic that her heart will stop or explode. She's been to Day Kimball's emergency room so often they know her by name. The other sufferer is a man in his 40's with a wife and children. His Lyme has activated a latent Multiple Sclerosis condition that is life threatening. After talking to these people and reading about the disease I have learned that, in some cases, Lyme Disease acts like a catalyst in your system. It kick-starts any genetic weaknesses. In my case I learned, at age 57, that I have a birth defect--Spina Bifida Occulta. My spinal column is not completely formed and my vertebrae and disks are open and at risk. So the Lyme has attacked my spine and nerves. My vertebrae are beginning to rub on each other, causing bone-spurs and nerve damage. I have lost over 2" in height as my spine collapses into itself. The pain is related to my skeleton and nervous system--mostly joint pain and a constant burning pain in my lower back and legs. For other people the Lyme attacks are focused on hearts or other genetically weak areas.
Lyme disease is not well understood. The test is remarkably inaccurate. Our medical community doesn't have a well-defined plan of action against this virulent disease. I've begun reading web sites devoted to Lyme Disease. Try it sometime. Ordinary people like me post their stories and they are terrifying. They all have one theme in common: if you don't treat Lyme immediately and properly you are facing a life sentence of pain.
Let's talk about chronic pain. Pain makes you selfish, tired, anxious and depressed. Presently, I'm fighting a wave of panic, anxiety and depression. Every morning I get out of bed looking forward to another day of constant pain and a night of anxiety. In my case there is little hope. I have no disks left in my spine. If I do normal things--cutting wood, lifting equipment, changing tires--I am in greater pain the next day.
The true struggle for me now is to keep going.
There's a line from Cormac McCarthy's novel "The Road" that fits here: a man's son asks him what's the bravest thing you've ever done, daddy. The father looks into his son's eyes and says, "Getting out of bed this morning".
Lyme Disease. Learn about it. Please.