Pittsburg to Stewartstown Day 2 cont.
And then, of course, there was my body. Griffin wasn’t the only one with medical problems.
One summer morning, when I was 16, I was riding my bike on the roads of my town. A friend had told me about some local bike races and I had high hopes of signing up for a few. I had already gone about 20 miles into my workout and everything felt good. I was young, I was strong.
I started going down a steep hill – not holding back on my brakes. I wanted all the speed I could get. A car was coming up the hill.
I saw her.
The driver, an older woman, didn’t see me.
She turned into my path, not giving me enough time to stop or even correct my direction. We collided and my bike flipped. I went down and continued to slide, still holding onto the handlebars, along the paved road until friction finally stopped the crumpled mess that was me.
Police and fire were called. An ambulance came.
Because I had slid on the left side of my body, the majority of skin on that side has been scraped off by the pavement. Later, a doctor patiently dug bits of gravel out of my skin while I sat still from shock.
Somehow the young always manage to bounce back. My skin eventually healed, the scars faded, but my growing bones never really recovered from the accident’s impact.
My first operation was when I was 18. Since then I’ve had had a total of 22 orthopedic operations on my knees, pelvis, and shoulder all in an effort to correct what kept breaking down from growth and usage.
I had tissue and bone removed.
I had a bone transplant.
I had screws put in.
I had screws removed.
Because of altered stress down my leg, I broke my bones many times.
I also had my bones broken during surgery by the doctor.
In one operation they removed my knee cap.
When they removed my kneecap, my mother, after consulting with the doc, greeted me in the recovery room and asked me if I wanted a green or blue wheelchair. She wanted to help, I told her to go away.
Three times I was told that I’d never walk again without assistance.
Three times I proved them wrong.
Being 16 was many years ago and I no longer remember what it feels like to not have daily pain. I don’t recall what it’s like to not hobble around for the first few steps after waking up, to not rise from a chair without trying to suppress a grunt of pain, or to not feel lower back pain after standing for a long time.
But when you are in constant pain, you learn to live with constant pain. There is no other acceptable choice. So I continued.
A few years ago I started having a huge increase of pain in my legs. They ached, nerves constantly sent flashing jolts of pain, and the muscles no longer worked in unison. I never knew when my legs would give out, I could no longer trust them. I had to use my hands to crawl up stairs. My pain so severe that I constantly had to make choices like- if getting up off the couch and walking to the kitchen for a glass of water was worth the pain involved or did I really need to use the bathroom or could I hold it until later?
I stayed in the house, too unsure to maneuver in the outside world. Winter’s cold earned my scorn. I became a medical hostage. I began to question how I could continue to live with such a high level of pain. How could I live to be an old woman when it hurt, hurt, hurt so much to be alive?
Even though I had serious orthopedic problems for most of my life, I had never been a sickly person. Not anymore. I started having memory issues to the point where I had to keep a notebook on me at all times in order to remember what it was I needed to do. My writing suffered – who can write when you keep forgetting the words? Thoughts of early Alzheimer’s crossed my mind. I started going to my local doc for issues like tendinitis, muscle tremors, eye problems, rashes – basically, it became “one thing after another.”
“You’re getting older.”
“You’ve got food allergies.”
“You have a sluggish liver.”
“You’re under a lot of stress, have you tried meditation?”
“You should go to a rheumatologist.”
You should go to physical therapy.”
“You should go to a dermatologist.”
“You should go to a counselor.”
“Is there any M.S. in your family?”
Wait just a minute. Boy was I stupid. It finally clicked. I had heard all this before. I wondered if, like Griffin, I also had Lyme disease. I booked an appointment with Griffin’s Lyme doctor and then I made of list of absolutely every symptom I had complained about in the last year. The list spilled over onto a second page. I worried that the doc would think I was a hypochondriac.
At the appointment, I remember sitting in the doc’s office and telling him I’d be okay if they could just cut both of my legs off above my knees.
He remembers that statement for how medically violent it was.
I remember that statement because it was the absolute truth. I was a writer, I’d finally be okay sitting in a wheelchair (green please) if it meant I could be out of that level of pain and could continue my work.
After looking at my long list of symptoms and comparing it with our family’s (by then 4 more of my kids had tested positive for Lyme and were also being treated) the doc took a blood sample and started me on antibiotics.
“I think you’ve had Lyme for a long time,” he told me.
The blood test came back positive. Not only did I have Lyme disease but, like Griffin’s, it had tipped over into the chronic stage. It explained so very much.
I began my antibiotic treatment and in about 6 months, many of my symptoms either lessened or disappeared (even the Achilles tendinitis that I had been told was so severe I’d need surgery.) The pain level decreased to a manageable level (manageable enough that I was able to get off the monthly narcotics my local doc had prescribed) and I was able to leave the house and rejoin the human race.
I started talking about Lyme disease with every one I knew. I warned them. I listed symptoms. I begged them to send their clearly Lyme infected kids to an LLMD (Lyme Literate Medical Doctor.) I became that “Lyme lady.” I couldn’t understand how could it be that so many people clearly had the disease and yet so many doctors couldn’t even recognize, let alone treat it? People, lots of people were unnecessarily in abject misery because, like we had been, they were being treated for their symptoms and not for the cause of their illness. A large part of our border to border walk centered around Lyme awareness, not because we were supporting a specific cause, but because we knew that if it happened to us, who lived in New Hampshire, it could happen to others. We wanted people to know.
Chronic Lyme disease, even when treated, leaves behind permanent damage. Between the multiple surgeries and the additional Lyme damage to my joints and body I clearly have a damaged body. My days of continued walking without some sort of assistance (whether it is a cane, crutches, or artificial joints) are numbered. My left knee, the one that took the greatest impact during my bike crash all those years ago and the one without a kneecap, is slowly failing. Additional major surgery looms in my future.
Between the two of us, Griffin and I had medical problems that would have kept far saner people from even attempting our border to border walk. But that wasn’t how either of us rolled. Griffin is his mother’s son. Even if it meant we looked a little funny when we first got on the road in the morning, when we got up from sitting , or when our tired bodies started to list in the afternoons, even if it meant I sometimes had to use my trekking poles as crutches, we were going to do this.
While we didn’t know anything about tomorrow, what we did know was that today we could walk.
After our Pittsburg gazebo-lunch rest we were ready to continue on our way to Stewartstown. Ever forward.
(Here’s some information on why we took this trip.)
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Wendy Thomas writes about the lessons learned while raising children and chickens in New Hampshire. Contact her at [email protected]
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