Down with the Silver Lining + Jonathan's Message to Lyme Disease: You've Overstayed Your Welcome, So Please Don't Make Yourself At Home

Call me callous, but I’m a bit too cynical for the ‘silver lining’ Lyme disease and chronic illness stories. Whenever I encounter them I can’t help but daydream about the speed and alacrity with which I would trade in my personal ‘silver lining’ for a cloudless sky at some imaginary Chronic Illness Unemployment Office (“Yes, I gave it the old college try, but Lyme just wasn’t for me, you understand of course?”) If you have no idea what I’m talking about, just bear with me, it will become more relatable shortly... 

This is, Jonathan

Sometimes, actually, more than sometimes, the words that you need to hear are the complete opposite of what you had pictured only moments before, and in the case of Jonathan's story, this very much rings true. Without missing a beat, he jumps into the comical ups and downs that Lyme patients find themselves facing almost daily; swinging from one shockingly relatable sentence to the next, we find ourselves laughing alongside the uncomfortable while nodding in agreement with moments so similar to our own, we almost forget it's someone else's story we're reading. 

These are the moments in which we can find comfort in the unpredictable-ness of our future, knowing that differences aside, everyone fighting Lyme Disease, or any other chronic illness for that matter, must face unwelcome limitations and frustrating obstacles that sometimes require a lofty and unwelcome amount of time to get over, through, and eventually to the other side of. 

But we do, and thanks to people like Jonathan, we are reminded to not take our life for granted, knowing that how you choose to see, feel, and deal with all of this, is entirely up to you. You do what you need to do in order to move from one moment to the next. In order to live a life more than.

...I wanted to share my story because the Lyme community needs, for the first time in human history, more members of the XY-Chromosome community to express their frustrations and triumphs. If you need cheery, upbeat vibes, perhaps a light skimming (or a swift skipping) of this story is what the doctor ordered, but if you’ve found yourself craving just a scintilla of candor in your life, welcome aboard.

My Lyme disease meet-cute occurred abruptly one fine winter morning in December of 2013 (time sure flies when you’re coming undone). I’m one of those Lyme sufferers who can actually trace the onset of the illness back to a specific 12-hour window, though the jury remains out on what exactly triggered the unexpected microbial rout that greeted me at 7 a.m. The leading theory is that I was administered an unnecessary Gardasil vaccine (one less healthy male) too soon after contracting an acute Lyme infection, by a doctor who stated verbatim during the visit both “God works in mysterious ways” and “Boy do I need some new glasses”, but I digress. Perhaps if Lyme had so much as given me a call beforehand I could have at least tidied up a bit, but the Lyme was in my proverbial coconut, and I assure you, was mixing me up.

Even if Lyme ultimately wins this fight, I’m confident that my memory won’t surrender the recollection of my clumsy creaking out of bed like a rusty robot drying in a giant bowl of rice. I felt like I was inside of an invisible hazmat suit, a layer of separation disassociating me from my previously seamless and unappreciated connectivity with the outside world, and I never tire of searching for the perfect metaphor to convey this dehumanizing blow to those struggling to grasp the reality of the disease. This has been my life for the last four years, and I can’t stress enough how grateful I am that I haven’t been more destabilized than I currently have.

I think my mom has more fun with the optimistic facebook-post sharing aspect of chronic illness than I do, which is nice I guess, I was worried after all that she was getting too bored with Facebook as of late and I love introducing people to new hobbies. Maybe I can get her a bumper sticker that says “Proud mother of a Lyme honor roll patient”. Personally it’s taken years to own Lyme disease and bring it onto the payroll once and for all. I figure, it knows more about what’s going on in there than I do, who am I to be so exclusionary? Everyone needs a home, even spirochetes. Every time I cross paths with a Lyme-related article I experience an intense feeling of confliction, as if my acquiescent recognition has any real bearing on the reality of my affliction or my role within this community. So resignedly, I’ll concede that my silver lining is an augmented philosophical honesty, heightened appreciation of relationships, and a newfound compassion for the manifold nature of human suffering.

For all of its (if only Lyme were actually singular) virtues, Lyme disease certainly doesn’t appear to have any qualms about its variety of inconvenient impositions on my comfort. One of my personal favorite symptoms is my around-the-clock facial numbness – the one area of my body that wasn’t in any particularly urgent need of numbness – but I know, beggars can’t be choosers and I would hate to come off as petty. It isn’t all bad though, as the sensation curiously and proportionately accompanies the growth of a beard, and a swift morning shave can remedy the situation and harken me back to the hairless days of my pre-pubescent irresistibility. 

I hate to be this way, I do after all want to be fair to Lyme as we’ve become practically inseparable over the past few years. Also don’t think I’m not reasonable enough to acknowledge that no spirochete is perfect, but I’m afraid it’s just gone on too long and it’s time to throw down the gauntlet. It pains me to say this, but Lyme, you’ve overstayed your welcome, so please don’t make yourself at home. In app-store terminology, I am quite unlikely to recommend this ailment to a friend or colleague.

I’m tired of saying “If this gets any worse, I’m a goner”, and being simultaneously right and wrong. I’m tired of painstakingly measuring out doses of dissimulation before every social interaction. I’m tired of the ironic cruelty of life on this existential knife's-edge where if I try hard enough, I can attain the much coveted worst of both worlds, passing as “normal” while forfeiting much needed sympathy from others. And I’m growing tired of the essentialist innuendo lacing every well-intentioned outreach effort from friends and family that, if you aren’t gasping for breath in bed for 23 hours and 50 minutes every day, can you really say you’re in pain?

Interested in sharing your story?