TOUCHED BY LYME: Feeling less “alone, despairing and hopeless”
LymeDisease.org sponsors an online support and discussion forum called “US National Lyme Disease Support Groups.” Once you’ve joined the main group, there are opportunities to join sub-groups, such as for individual states and the parents of children with Lyme.
(You may recall that we had a network of state-based Yahoo groups up until about a year ago, when we migrated the whole thing over to a new platform.)
It heartened me to read the following message in my “daily digest” from the group today, written by a member that I’ll call “B.”
Around Thanksgiving, as I was thinking about the things in my bucket list to be thankful for, I realized how thankful I am for this group. There is much to say about how it has changed my life, my outlook, my hope, my abilities to cope. Because of it, I feel less alone, abandoned, powerless, confused, despairing and hopeless.
Since there are so many to thank and so much to say about how this “ray of hope” has helped me, and it would be a long, long post, I decided to break it down.
Today I want to thank all of the creators and moderators of this forum. I am not very “techie,” so I have no idea how much work goes into setting all of this up, maintaining it, moderating it, or even how many people it actually takes, etc., etc.
But I do know that it takes people who are dedicated to doing whatever it takes to provide a lifeline for so many of us with Lyme.
It takes people who care enough to be generous with their time, skills and energy. It takes people who care enough to do tasks that receive little applause or recognition, those willing to work tirelessly “behind the scenes” to bring some light into this dark and sometimes hostile Lyme world.
I know that I am not alone in this overwhelming feeling of gratitude to all of you who keep this forum going, but I know that many are too ill or overwhelmed with just getting through the day to spend time at the computer expressing this. And I suspect you, whose names I do not know, understand that.
So, from all of us – voices silenced and ignored by others, hearts broken from being neglected, misunderstood, abandoned by families and society, eyes that often struggle just to read, minds that cope with confusion too overwhelming to allow clarity – about anything and bodies overwhelmed with pain that comes and goes – or comes and stays, sometimes just distracting us from life, and sometimes bringing us to our knees, we say “thank you.”
We hope the good Lord rains blessings, mercy, and joy on you and richly rewards you today, tomorrow, and every day for what you have given us. May you all have a peace-filled Christmas. ~B.
On behalf of the creators and moderators of the US National Lyme Group, I’d like to thank B for her kind words. Yes, it takes a village of people behind the scenes to make this opportunity available. And yes, we’re doing it to “bring some light into this dark and sometimes hostile Lyme world.” I’m glad some of that light has found its way to you, B.
I’d also like to thank the thousands of members who contribute to these online conversations. They are the heart and soul of this forum.
TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at firstname.lastname@example.org.