TOUCHED BY LYME: Making Lyme-Aid
Guest blogger Phyllis Mervine pays tribute to all the people “Touched by Lyme” who have used their knowledge and experience to lend a hand to others struggling on their Lyme journey. Phyllis is the founder and president of LymeDisease.org and the Editor-in-Chief of The Lyme Times.
Today as we celebrate our country’s birth and pay tribute to the courageous visionaries who founded it, I’d like to pay tribute to the people who are making a difference in the lives of people with Lyme disease in its broadest sense. These people – too many to name – have all been Touched by Lyme. They have it, their children have it, a friend or loved one has it. In some way they have used their experience and knowledge to make Lyme-Aid for countless others. Without them, where would we be?
Few of us who contracted Lyme just walked into our doctor’s office, got treatment, and recovered uneventfully. Blessings on those who did! Most of us didn’t know what we had, sometimes for years. We didn’t know, or couldn’t find, a doctor who knew enough even to recognize it, let alone treat it.
We all have other people in our lives who helped us along the way. I had a neighbor who saw me drag myself in to pottery class week after week. Week after week she would nag me to get a Lyme test. Finally I did, and it was positive. So she was my first helper along the way, and there were many others.
Today, as we approach the 25th anniversary of LymeDisease.org, I look back on our humble beginnings to a time when the Lyme world was just forming. There were a few support groups, a couple of new organizations, no internet. I can’t remember how we found each other! The Forschners had just started the Lyme Foundation, I started The Lyme Times and LymeDisease.org, and then Marc Gabriel started LymeNet. Finally we could find each other communicate. And we took off!
Since that time, groups of all sorts have multiplied. We have nonprofits, support groups, facebook pages, mailing lists, blogs. The variety is endless but we are united by a common theme. Each in his or her own way, is trying to help another person on their journey through Lyme. We all have different strategies, different approaches. Sometimes we disagree. But just as in all other great movements, it’s the combination of approaches that finally works. I liken it to “good cop, bad cop.” We need the science, we need the advocacy, we need the legislation, we need the demonstrations. We need the quiet diplomacy and the in-your-face confrontations. The styles may not suit each one of us, but we need them all.
To me, compared with the “old days,” signs are hopeful. We have a lot of solid science. We have ILADS. We have media coverage – not all of it good – but Hollywood says there is no such thing as bad press. Even bad stories give us the opportunity to talk back, to state our case. And we are talking back, in increasing numbers.
Let me end by thanking all of you who have been Touched by Lyme for reaching out, in whatever way you can, to help others. What would we do without you? Keep up the good work. Finally, hopefully, we may work ourselves out of a job.
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