Wednesday, October 24, 2018

I Don't Like to Think About Lyme Disease

September and October are always rough months. Now that it's been a couple of weeks of more-than-usual exhaustion and aches, I have to assume that I'm having some kind of flare-up of Whatever-the-Heck. This is something different (with a different pattern of symptoms) from the Major Depression and/or OCD that I have struggled with periodically since I was ten years old.

I would like to consider my long, tortuous battle with Lyme Disease as something "in the past." I don't like to talk about it or even think about it these days. Lyme Disease comes from a bacterial infection that can be transmitted by the parasitical "bite" of certain kinds of ticks. Without prompt and proper treatment, it can develop into a serious, persistent illness. (Actually I recently wrote a longer description, including links for further information, in a post about Avril Lavigne's new song, "Head Above Water," inspired by her own experience with Lyme Disease. See HERE.)

I first recall having a series of the classic early Lyme symptoms (which don't always occur) in 1988, though I didn't know the meaning of them at the time, nor did my doctor. People in Virginia had hardly even heard about Lyme back then. The infection was unresolved and quite possibly boosted by subsequent tick bites in the years leading up to more widespread health deterioration and finally diagnosis in 2004 and subsequent treatment. 16 years is a very, very long time to go without any treatment. I would hope that something like this would never happen today.

Still, we did treat it intensively for a couple of years. We threw everything at it, conventional medicine, experimental stuff, dietary stuff, you name it. I saw all the doctors and did all the things and spent all the money over a decade ago. We beat Lyme Disease. Didn't we?

Well, kind of.... I have adjusted my lifestyle and continued with a basic protocol that has been helpful to me (in dealing with my own issues in the context of my own larger health needs). As a result, I'm managing this thing and keeping it in remission... mostly, kind of.

Periodically, "it" comes around with something of its old vigor and pokes me. It takes a few weeks to get things back to mostly-under-control, and then we go on. It's just as well that it's not more than this. I have enough other problems to deal with.

When I speak or write about my health, I usually emphasize my lifelong problems with mental illness, because they are (in some sense) deeper and more difficult for me, and because I have been able to articulate these experiences in ways that others can relate to; I have been something of a voice for others who can't speak for themselves. Mental health advocacy is very necessary, as is any encouragement I can give to people who are suffering. I'm not always up to it, but I do my best.

It's ironic. For me, at least, mental illness—with all its lingering stigma—is easier to talk about than Lyme Disease.

A lot of folks are spooked by Lyme. They have heard stories about people being crippled or even dying, about how awful a disease this is (and it can be, or become such, especially when it's long neglected). Some of my old students, colleagues, and friends remember seeing me in pretty bad shape. They were scared for me, and maybe sometimes a bit scared of me. A sick person is a reminder of how vulnerable we all are as human beings, and that's a scary thing.

But then there are periods of time when a person with Lyme Disease "looks fine," and folks think, "Why are they always complaining about being sick?" Just because you don't see their sufferings, however, doesn't mean they aren't sick. And Lyme is shape-shifting, unpredictable, variable, chaotic, and so often invisible to others. No wonder it's hard to talk about. The whole business is so complicated.

It's also controversial in the world of medicine and healthcare. There are controversies about diagnostics and treatment and complimentary therapies. And Lyme doesn't help by being so elusive and perplexing.

I have some post-traumatic stress from the so-called "Lyme Wars," frankly. Many people have been earnestly examining the vast unknown realms of this freaky, tick-borne multi-pathogenic disease that is spreading all over the world and often doesn't "follow the rules" in terms of who gets it, how badly they get it, or how much they can be "cured" of it. The medical experts and health researchers have developed different theories, and they have often ended up fighting with one another like dogs fighting over a bone.

People suffering from Lyme end up being the bone. It's no fun being the bone. In fact, it can be quite traumatic. I have found all of this very hard to handle.

The general situation of things may be improving, however. There are continued advances in more sophisticated scientific research. Meanwhile, the disease continues to spread, and the more it impacts people, the more urgent and insistent becomes the call to move things forward. Not everyone who crosses paths with Lyme Disease has the kind of wider profile of psychiatric illness that I do. Quite the contrary. Lyme strikes physically, mentally, and emotionally healthy people all the time; it causes sudden and strange collapse and debilitating illness for people who are normally strong and full of energy.

These people generally can't be bullied into self doubt or put off by being told that it's "all in their heads." They can't be plausibly accused of trying to find excuses to shirk their responsibilities. They are not even looking for sympathy. They have been inexplicably knocked off their feet and pounded in their heads and many other places all over their bodies. They want to get better.

I do still have the-part-of-my-brain-that-works and I had a good amount of physical energy before I got sick. After all, I didn't get Lyme Disease by sitting in the library. I got it hiking off trails through the woods in the Blue Ridge mountains and following deer paths along the river looking for good fishing spots in my beloved, beautiful, tick-infested Shenandoah Valley. So I can sympathize with how people accustomed to vigorous physical good health and a high-energy lifestyle feel about being pained, drained, and wiped out by this bizarre sucky disease.

They are taking the lead in advocacy. They include parents of once healthy but now afflicted children, as well as successful adults in many fields who have gotten sick themselves or taken care of loved ones who are sick—athletes, business and professional people, entertainers, artists, musicians, including some internationally famous celebrities. I'm very grateful for these people.

I can do my small part, within limits that I have found can become an occasion to focus on a few worthwhile activities, and to discover new forms of constructive creativity. I have very little advice to offer (other than directing people to resources such as the Global Lyme Alliance). I want to support people, listen to their stories, empathize, and encourage them as best as I can.

For the present, I had better be sure to get the necessary rest, hoping that the present episode will be resolved according to the usual pattern for me. Of course, there has been nothing "usual" about this year of ongoing stress and sorrow. If things get worse or new problems develop, I'll have to face them. But I am determined to resist the temptation to be fatalistic and cynical.

I won't give up.