Day 3 – Stewartstown to Colebrook cont.
Once our bodies had had enough time to re-hydrate, our waitress came over to talk to us. There as a lull in afternoon business and besides, what good waitress worth her salt wouldn’t want to know about the two “nice backpack hikers” who were traveling through town?
I’m pretty sure that waitresses like writers, live to hear and tell stories.
Our waitress was middle-aged, wore comfortable shoes, and had a friendly, inquisitive face. Exactly the kind of person you don’t mind opening up to.
As Griffin and I leaned back in our chairs, bellies filled with salmon and chicken, we were feeling good. We told her about our walk. How we had started at the Canadian border in Pittsburg and how we hoped to finish at the Massachusetts border.
“But why?” she asked us. “Are you collecting for a cause?”
Griffin and I looked at each other. As selfish as it sounded, this walk was always meant to be a walk about us – to prove to ourselves that even with Lyme-damaged bodies, we could do it. Sure we had plans to talk about Lyme disease along the way, but it was never about collecting money for anything. It was about 2 people doing what we could and spreading the word about Lyme step-by-step along the way.
Modern sojourning proselytizers.
I started telling her about our family’s experience with Lyme disease, how 5 of my kids all had different symptoms, how Griffin had been the first and had had it for 7 years before it was even diagnosed. I told her at one time I had created a spread sheet with *all* of our family’s symptoms and then checked off who had what. Clear patterns began to emerge.
It was that spreadsheet that told me something bad and dark-shaped was attacking in our family.
The waitress told me how ticks were a part of living up in this area. Everyone spends time in the woods. She’d had many ticks over her lifetime. Her son who worked cutting down trees had to have several removed each week. “I’m worried about him.”
She continued. “Sometimes I think I have Lyme disease, but my doctor says it’s Fibromyalgia. He even talked about the fact that I might have M.S.”
This got my attention. While I had never been diagnosed with Fibromyalgia, at its worst, my regular doc had suggested that I “just might” have M.S.” She had M.S. and while I processed what she was saying, I looked over her shoulder to a photo of her and her dog on the top of a mountain. “You hike?” I asked her as she wrote out a script for pain medication.
I thought that there was a very good possibility that our waitress not only had Lyme disease, but that she had tipped into chronic Lyme disease. “Her immune system has been fighting something for a long time,” I thought.
“I even went to a specialist in Boston,” she said, glad to have someone listen to her medical injustices. “But he was worthless. He took some notes and then told me I had to learn how to relax. I never went back.”
Even if the doctor in Boston had been helpful, it would have taken this waitress a day off from work to drive the 6 hours to Boston. She would have also had to pay for gas, parking, and any co-pays. That’s a lot of money and time for someone who waitresses for a living. No wonder she was stuck with a “quasy-diagnosis.” She had absolutely no access to competent Lyme care. No one was there to help her.
“I’ll tell you what, I said, let’s play match the symptom. I’ll tell you what my symptoms were and you tell me if you have them.” She was game.
Shooting nerve pains – “oh something fierce up and down my legs.”
Joint pain – “Yup, I can’t even make it up that hill outside of town.”
Muscle twitching – “Boy does that drive me crazy at night.”
Foot cramps – “So strong they pull my foot up and back.”
Tender bottoms of feet especially in the morning – “I can’t walk for the first few steps.”
General weakness – “Can’t open jars anymore.”
Memory issues – “Can’t remember a thing.”
Rashes – “My doctor calls it eczema.”
With each matching symptom her eyes kept getting larger and larger. A moment of strength arises when you find out that not only are you not crazy, but that, more importantly, you are not alone.
I told her that when Lyme disease goes into the chronic stage, it seems to hit you hardest where you are the weakest. For example, one of my sons had terrible stomach pain, the kind of pain that would send you to the hospital I told her. It was horrible I told her, when he had an attack, he’d be out of school of the next two days, weak from the pain.
I took him to a specialist who told me to ignore him when he had the pain “He’s just looking for attention” and to not keep him home from school – “You’re teaching him to use his pain, he’s just going to have to learn how to deal with it.”
That son was the only one with that type of symptom. Once he was treated, that pain went away.
He’s not had it since.
“My son,” she quietly replied. “Just collapsed at work last week with stomach pain. At the hospital they ran a million tests but everything came back fine.”
When you talk about Lyme disease all the time (like I do) you run the risk of being the “Lyme Lady.”- the person who sees Lyme disease everywhere. When my kids get a cold at the beginning of the school year, I’m on high alert – is it really a cold or is it a re-occurrence of their Lyme?
Because I’ve finally learned that everything is not always Lyme, I’m very careful to not diagnose anyone with it, even though sometimes I have to bite my tongue.
Like I did in this case.
If I was a gambler I would have put all on my money Lyme disease as her and her son’s diagnosis.
But I can’t do that, I can only suggest. Unless people are ready to accept Lyme disease they aren’t going to – especially not when a doctor who hangs paper degrees on his wall says otherwise.
Instead, I told her about Debbie from the night before. How her sister had chronic Lyme disease and as a result had had to have her jaw rebuilt. I wanted our waitress to understand the seriousness of untreated Lyme disease and its consequences.
Our waitress reached up and rubbed her jaw. “No kidding,” she said. I’ve been having tooth and jaw pain for a long time and they can’t figure out a reason for it.”
I’ve said it before and I’ll say it again.
And again.
So very many people are suffering from a disease that if diagnosed and treated correctly early in the game wouldn’t have to suffer.
Even those who have long term infections can still benefit from proper treatment. Immensely.
Instead these people are shuttled from doctor to doctor, and prescribed medication after medication for their symptoms, while the cause is never identified.
Money that could be used for food, rent, even books and education is all funneled into the health system. The specialists get richer while the patients get poorer (and sicker.)
It’s going to take more than our two little voices on the road talking about this to make a change. It’s going to take the voices of all the people, all the mothers and fathers, and brothers and sisters of Lyme sick people raised as one to be heard.
Just like the Who’s in Seuss’ tiny village of Who-ville, we will all have to join our voices and cry “WE ARE HERE!!!, WE ARE HERE!!!” if we in the Lyme community want to be heard.
Granite staters
(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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