A Lyme Disease Journal

I have to admit … there is a reason I don’t post as often: my motivation for posting on this blog for many years was the need to tell my story, reflect on my experiences, and (hopefully) help others in the process. As I’ve gotten better, the urge to post has gone down (aside from the obvious continual relapses, worries about my kids, my dog, and so on), and I think it’s likely to stay that way until I begin to find a new role, and a new reason to share.  Right now, that reason is raising awareness in my local community and more broadly.

In recent weeks, I’ve had the unusual experience of working closely with a reporter to tell both my own story and that of my research. The results can be found in two articles ([about my research] and [about me]). The goal was to spread the word to folks in Pittsburgh that Lyme is here and spreading, and to watch out for ticks.

I’ve never done something like this before, told my story in such a public forum, and given someone else control over the words used, the supporting (or debunking materials), the photos, every aspect of how I was presented. Despite that, having written a blog gave me a feeling of familiarity. Little did I know how different it would be: The readers of this article, the folks who have contacted me, include almost everyone I know in my personal life, many of whom I have never spoken to about my Lyme disease. 

I was lucky — the situation was “newsworthy” I think because of the combination of research and local interest. The reporter I worked with was friendly and interested and  willing to work really hard to present a balanced viewpoint. The photographer was skilled and willing to capture me as I am. The resulting article, although not my own words, achieved the goal of educating and raising awareness very well, and comments from friends and strangers have been ongoing since the publication last week. Thank you to those who helped make it happen! It was a success, yet still difficult to do and not something I look forward to doing again soon (I am not a spotlight sort).

Surprisingly, the experience has pushed me further into the realm of activism as well — as my local network of contacts grows, I find myself more and more in the role of educator, mailing list runner , people connector. And now I find I have the connections to help even with the legislation I’ve mentioned on and off over the years (here’s an old post on it and another for historical connections, but be aware that the bill number has now changed to Senate Bill 210 [fulltext], [things you can do to support it]).

So I just went through and gathered up all the Pittsburgh contacts I could find and sent them all an email about the bill. And here I am writing about it on the blog for a third time. The legislation requires that:

1. physicians get more education about multiple ways of treating lyme
2. patients are given the right to informed choice about treatment options
3. insurance will be required to reimburse the treatment patients choose
4. govt agencies will be required to provide unbiased info about lyme

You can help anyway you want, whether you have lyme or not. Details  here about a rally in Harrisburg in May, sending a letter, signing a petition, or contacting your senator (especially if he is State Senator Brewster :).

I think that it’s hard to even imagine getting involved in this sort of stuff when you’re truly exhausted by the simple act of walking down the block or lifting a finger, hard to squeeze one more email or phone call out when your head is pounding and you can’t remember your last name, difficult to prioritize anything but the doctor when your child is sick and your finances are running down … if you do, you deserve our applause, and support. I certainly didn’t get much more than the minimum essentials done then.

But for those of us who have gotten to the point when we can look beyond the next 5 minutes or day, it’s easy to move on, walk away. It’s an exciting moment when we realize for the first time we’ve referred to lyme in the past tense! It’s a joyful experience to go back to living again.

Getting involved requires thinking about Lyme, remembering the bad times aloud, taking time for it that we just got back for living in. Not what I thought I wanted when I got better. So I find myself asking: Why am I doing this?

Here’s my best attempt at an answer. First, although my parents never tried to tell me what I should be when I grew up, they did remind me often what’s worth doing: Making the world a better place is the one thing I knew mattered growing up in their care. Next, and undeniably: Lyme still exists. It haunts us, occasionally to rises back to the surface, makes us think twice about a wooded path or open field. Just as important, it threatens the people around us, people who don’t have to live through what we did if we can educate doctors and patients and spread the word.

So that’s my reason to take action. What’s yours?