Last night, a friend posted a link on Facebook to a short documentary on Lyme Disease – I don’t always click on these things because I know myself – I am weirdly reactive and hyper-emotional on this subject, even though it’s been nearly a decade since I was cured. I lost 5 years of my life to this illness, as well as countless friends, dignity, confidence, one husband, one almost-husband (well, he was a porn addict, so I can’t really blame the Lyme, I guess) and a burgeoning business. I don’t want to talk about it – I could write here for hours, nay – days, years – about my life with Lyme disease but I don’t want to. It was awful and I just don’t fucking want to.
Last night, I did click on the link and had the predicted response. Tears, weird snarfling sobs, and a strong desire to shake my fist at the sky and scream. (I didn’t do that last part, OK? I swear.) It also got me so wound up that I spent the entire night in fits – for it seems that in the 13 years since I first became ill, nothing has changed. Not one goddamned thing. And now I really do want to scream. Which is awkward. And given that I don’t *actually* want to talk about it, all I can think to do is share here a letter I wrote to the New York Times in 2001 after they published a horrifying and dismissive article on the subject of Lyme. The New York Fucking Times, practically my hometown paper, was basically calling me crazy. It was like being hit in the head by Reggie Jackson (my forever hero) with his magic bat from 1978. It hurt that much.
Below is my editorial letter in its entirety, followed by a link to the original drivel – er, article. Their response was something like “good letter, too long.” Please forgive the writing – I was young, I was angry, and I was going through an Adverb Thing. I was also less than a year into my illness, with no idea what I was in for, or what would become of me. (By now, you kinda know what became of me. Yikes.)
June 13, 2001
To Whom it May Concern:
On September 30, 2000, what was to be my wedding day, I awoke in the emergency room of the Valley Hospital paralyzed on my right side from forehead to fingertip, with unspeakable pain in my back, neck, jaw and head, and a life-threatening fever of nearly 105 degrees. Not only did I suffer the devastating loss of my wedding and excruciating hours of painful and invasive tests, but was also made to endure the patronizing solicitations of friends and family who deep-down believed I was merely experiencing some acute pre-wedding jitters. This was not entirely unexpected in light of the fact that in the four days preceding my trip to the ER, I had visited two MDs, two chiropractors, and one acupuncturist in search of some relief from my ever-increasing pain – only to be told repeatedly that I was suffering from wedding-related stress. One such doctor (who had not made note of the fact that my fiance’ had to half-carry me from the car to his office because I could not walk on my own), even dared to suggest that I “relax, go shopping.” Not one, including my own beloved family practitioner, bothered to take my temperature, vital signs, or blood samples.
I was and remain horrified by their apathy, but after reading Ms. Kolata’s shameful and reckless article on Lyme Disease this morning, I at least understand it. For it was indeed Lyme Disease that robbed me of my wedding and very nearly took my life. Had I opted to attend my rehearsal dinner the night before instead of going to the emergency room, Lyme Disease would have killed me. That’s right, Ms. Kolata. Lyme Disease.
Ms. Kolata and Dr. Sigal condescendingly assert that Lyme Disease is not much more than a nuisance ailment – fodder for hypochondriacs and fuel for antibiotic junkies. They speak of “inflated public fear of Lyme Disease, which is widely perceived as a grave illness that is easy to catch.” Dr. Sigal even dares to declare that, although Lyme is of mild concern in the tick-infested Northeast, “The bigger epidemic is Lyme Anxiety.” I defy Dr. Sigal to convince me or any other person who has suffered from this illness that we shouldn’t worry. I notice that Ms. Kolata didn’t include one word of testimony from an actual Lyme patient on the topic of whether or not this disease is worry-worthy. Interesting.
IN my experience, people aren’t afraid enough of Lyme Disease. I can’t count the number of well-meaning but uneducated and/or misinformed inquiries I have fielded regarding my illness. “So, uh, Lyme’s Disease – how did you get that, from a mosquito?” and “So, what, are you like, tired a lot?” are common questions. My favorite, however, came from an otherwise well-educated New Jersey man: “Whoa. Can you get that from limes?” This guileless ignorance is hardly what I would classify as “inflated public fear.” For those who may be inclined to believe Ms. Kolata’s dismissive mockery of this illness, consider this:
I and many other Lyme patients suffer from drastic memory loss, cognitive dysfunction, trouble speaking and thinking, constant confusion, tremor, sudden-onset dyslexia, loss of balance, paralysis, chronic arthritis, vertigo, heart damage, Bell’s Palsy, and countless other symptoms ranging from inconvenient to unbearable. Add to that the abandonment of one’s family and friends, who regard our memory problems as “irresponsible,” our need for help and support “selfish,” and out “imaginary” fatigue as frankly tiresome. Articles like this one recklessly perpetuate these misconceptions with statements like, “Those symptoms are very common among the general public, leading Dr. Shapiro believe that there is some other cause.” There’s nothing more demoralizing than a trusted friend who dismisses one’s agonizing forgetfulness with statements like, “Well, I must have it then, too, ’cause I’m like that ALL the time (haha!)” To endure the journalistic equivalent from such a respected publication as the NY Times is simply infuriating.
In closing, I feel I must address what is perhaps the most heinous of all the public disservices contained in Ms. Kolata’s article. The blase’ Dr Shapiro (making the wildly strained assumption that everyone who is bitten by the microscopic deer tick is aware of it) suggests foregoing preventive treatment with antibiotics and instead, simply keeping an eye on the site where the tick fed, and “if they develop a rash within a few weeks, they can take a full course of antibiotics and they will be fine.” What Dr. Shapiro fails to mention – in addition to the fact that “a few weeks” may be far too late – and something your reporter neglected to unearth during her exhaustive research on the subject is this: current studies estimate that fewer than 30% of all those infected with Lyme will ever get the tell-tale bull’s-eye rash. I didn’t, and I very nearly died because of the denigrating attitudes both the public and the medical community continue to perpetuate about Lyme Disease.
But hey, don’t worry about it.
This is dangerous and irresponsible journalism. Shame on you, NY Times.
Marie K., Ridgewood NJ.
Here’s a link to the original shitpile, should you care to hate her with me: http://www.nytimes.com/2001/06/13/us/lyme-disease-is-hard-to-catch-and-easy-to-halt-study-finds.html
Thanks for reading, and please share with all the Lyme-ignorant assholes in your life.