Lyme & Validation

Dear friends,

Today I had the privilege of hanging out with an old roommate who now lives in another state. Towards the end of our journey together, we hopped on the MAX (Portland's light-rail train), and as we did so, I asked her if she needed to buy a ticket.

"What do you mean?" she asked.

"You have to buy a ticket to ride the train. Didn't you buy one on the way down here to meet me?"

"No, I thought all trains were free."

"You lived here for three years and never paid to ride the MAX? I can't believe you haven't encountered a fare inspector. They were even on my train earlier today."

Most everyone knows that if you don't have validated fare, you don't ride (or risk getting a ticket, I suppose). But what if the validation machine is out of order? Though a passenger may have the unvalidated ticket in her pocket, or even the correct change, no validation technically means she is committing an offense.

******

I am currently taking a grad school class called Research Methods, which is taking up more time and energy than I prefer. One reason for this is because the class is designed to help the student create and design a research study that could theoretically be used for one's dissertation, that is, if she chooses to continue on with her education. Since I am seriously considering getting my doctorate, I have felt significant pressure to find a dissertation topic...um, like yesterday.

I hope to go into more detail about my project when I complete my class, but for now I can tell you that the research study I have proposed is to evaluate the predicted and measurable outcomes if the community-based participatory research (CBPR) model is applied to the Lyme community in the Portland-Metro area. In other words, when citizens are invited into the process, design, and implementation of Lyme research, what would be the effect not only on the health, but also the social ties, of the community? For what should be obvious reasons, I am quite giddy about this topic and hope that if I do get the opportunity to put this study to the test, the results would be of great benefit to the Lyme community.

In my furious reading, I read a case study about youth participation in building youth-oriented public space, such as skateparks, in the United Kingdom. The author had few positive things to say about the way the government included the youth into the design and implementation process and summed up the case here:

The ideal, user-oriented notion of free access and expression in urban public space has been perverted into increasingly regulated managerial representations of the "appropriate" form of public space and public activity. This does not respond to the differences and unpredictability of the existing space; rather, it privileges consumer activity and either displaces or disperses anything or anyone that might threaten the "orderly flow of commerce" (Rogers, 2006, p. 121).

We like things black and white, obvious, fast. We like cars to travel in their own lane, we like computers to connect to the Internet in fractions of seconds, and we like our health to be repaired faster, cheaper, and, of course, by the best doctors. But what if there is no fast remedy? What if the treatments are expensive? What if there are few "best" doctors? This is all true of the nature of Lyme Disease. Furthermore, the ironic thing is that these questions are based on the assumption that we know what the problem is. (Again, this is true of Lyme Disease.) What if we don't know the source of the problem? Do we treat the symptoms? But what if the symptoms change from month to month?

We have created a culture that relies on predictability. We are a culture that forces people to fit onto forms or into check boxes. If you don't fit, then we can't do anything for you, we say. Sometimes we turn people away with a good luck and a smile - a gesture that only lessens the guilt of the person doing the rejecting. Still, other times we hear, you don't have Lyme Disease, get out of my office right now! (I wish I were making that up: several Lyme sufferers have told me they have heard those words come out of doctors' mouths.)

Like the government that forced the youth to congregate into a few areas in the city, the health care industry squeezes us into particular areas that are deemed politically correct, manageable, identifable. There are many reasons for this - money, limited knowledge, competing political interests, money again - but what I find most interesting is that public health is not on that list or anybody else's list. In fact, I have yet to hear anyone address the problem with the current health insurance debate, which is that the plan neglects the thing we should really be talking about: health care. I'm not knocking President Obama's plan - people need assistance to pay for their health care - but so what if everyone gets insurance? I have insurance and the care I receive is nowhere near an acceptable level.

The actual conversation we should be having is about working solutions that first benefit the public good, that is, you and me and our neighbors. I have a hard time believing, however, that conversation won't happen until we begin to love our neighbor: when we begin to see people as human, with weaknesses, with blind spots, and, most of all, with a deep need to be loved. Jesus Christ came as a life-giver. He came with compassion. And He came to redeem a ugly situation. He validates, He affirms, He loves.

******

A few weeks ago, after I sent a mass email to friends, family, and people with Lyme, one of these email recipients informed me that some people find the term "Lymies" (a word I had used once or twice in the email and a word that describes Lyme Disease sufferers) to be quite offensive. This was a real surprise to me, since I have used the term countless times here on this blog and in other forms of communication. While it would be a great boost to my ego if I had come up with a term that rolls off the tongue so easily, I first heard "Lymies" spoken by Bella (not her real name) and have seen the term used all over the Internet. Personally, I find that "Lymies" is more convenient to write than "people suffering from Lyme Disease."

According to my informant, the term "Lymies" has been used in a derogatory context particularly in Lyme's early days (i.e., 1970s and 1980s). My informant told me that the term tends to rankle older people obviously because that population were adults during that time. To satisfy my curiosity, I decided to do a few quick Internet searches on the derogatory nature of the term "Lymies," but I did not find anything to suggest people with Lyme Disease have been publicly offended it. I did, however, discover that the term was used derogatorily by Afrikaners towards British immigrants. Completely interjecting here, I wonder if Lyme sufferers find the term to be offensive due to the association.

No matter the reason, perhaps, then, the term "Lymie" shouldn't be used at all. So after careful consideration, I have decided to heed the advice of my informant not only because he is someone I trust, but also because I choose to respect the Lyme pioneers. These are people who have sat in countless doctor's offices and hospitals for decades just to find one doctor to believe and champion for them. These are people who have listened to handfuls of loved ones tell them they are lazy. And these are people who have lost most of their lives to the deterioriating effects of Lyme Disease. So from now on, I will chose to use the term, "Lyme Disease sufferer" or just "Lyme sufferer." Because I wish to honor and validate their experience.

******

Last week, Ruth asked me how I felt that the insurance companies hardly validate me.

I laughed. "I don't care if they accept me or not - I'm going to get better with or without them."

My worth is tied elsewhere.

A.

Rogers, P. (2006). Young People's Participation in the Renaissance of Public Space - A Case Study in Newcastle upon Tyne, UK. Children, Youth and Environments, 16(2), 105-126.