By Carla Lee
I planned, after passing the decade mark with ME – myalgic encephalomyelitis – on writing an amazingly inspirational essay illustrating human resilience.
OK, so let’s toss that aspiration out the window. How about a post-decade deflated reflection?
My 10-year sickaversary date passed in November 2016. At the time, I was amidst a house crisis (for me, also a home office crisis) plus a work avalanche. The year went downhill from there, as did I.
Let me start with recent events. This late summer my husband and I had our first vacation since a family “vacation” in early 2007. Nix air travel with ME. I vowed never to fly again. This year, though, was our 25th wedding anniversary, and we were whining-kids-free. Moreover, the house problems had devolved to the point of mandatory master contractor intervention. The house would be unlivable anyway, might as well give my husband the precious gift of the memory of our trip to Europe.
Suffice it to say, by the time the Air France jumbo jet landed back at New York’s La Guardia airport, it might has well have landed on me. I was flattened. (By the way, here’s a little tip for travelers: don’t book a flight on an international jumbo from Paris to NY the day before opening of the United Nations Assembly.) OK, but I survived. And after 14 hours of security lines, extra security scrutiny (I had a water bottle), and various modes of transit, I would return to a restored, pristine, chaos-ridden house.
No, I wouldn’t. Turns out, the master contractor was not so master. Home was a dust-filled, toxic-laden landfill. A minefield. A war zone. It remained that way for 10 more days, during which the following occurred: one of my oldest friends died; I learned a dear colleague had died while I was away; my mother was hospitalized; my son, just beginning grad school, lost his apartment sublet; and the work calamity that had been percolating for over a year was exploding. In addition, my mouth and windpipe burned fiercely from all the unfinished contract work pollutants. Extreme sensitivity to chemicals and dust have plagued me since the onset of ME. The effects were so severe, even the outside of my throat was sore. After the house work mercilessly ended, I felt my neck as a hopeful check upon the abatement of symptoms. That’s when I noticed a lump. The kind of lump you do not normally feel, in a place it’s not supposed to be, and of a type web medical sites preface with the words “may be serious.”
Healthy people might regard the aforementioned litany of woes as bizarrely prioritized. Wouldn’t mortality-linked happenstances obviate the house and work-related nonsense?
Mind you, I appreciate the distinction between life’s harsh blows and its annoying hits. But the actual experience of life is a huge jumbled mush-mess. That is particularly the case for people with ME, and, I suspect, many chronic diseases. When you are afflicted with illness, you are afflicted. Your basic capacity to cope with what life hurls at you is compromised. Life is grueling, its terrain hazard-filled, and you navigate on stilts. No matter how well, or for how long you practice balancing, it’s the literal environmental vagaries – like weather and assaultive ambient home conditions – that knock you down.
The worst part is, when illness is chronic and invisible, you pretty much have to pretend to walk when you’re really staggering or splat on the ground. Society hasn’t come up with a good playbook for how to act when you’re continually compromised by poor, but neither obvious nor survival-imperiling, health. I certainly have not figured out how to convey the reality of existence as I now know it to friends and family without seeming melodramatic or becoming a pill.
So I muster up the joie de vivre and troop off to Europe. In truth, I had some absolutely fabulous cake there. Cherry strudel in Bavaria. Sacher-Torte in Vienna. And Karamella, an incomparable oozing gold caramel cake concoction, in Budapest.
As far as the lump goes, I’ll know more, presumably, after the specialist. That’s tomorrow. Meanwhile, I can ignore my desk with its blizzard of unattended papers. Today I took a long walk in the sun. Breezes through open windows disbursed the remnants of my house toxic dust cloud. I can handle anything again. If the lump’s benign, I’ll go on pretending. Or maybe I’ll finally figure out a way to not.
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About ME: Myalgic encephalomyelitis (ME) is a multisystem, multi-symptom illness, characterized by a certain patterns of symptom presentation, including “crashing” – a distinctive precipitous loss of stamina following sustained mental or physical exertion.http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full. A 2015 Institute of Medicine report proposed a new case definition and new name: SEID – for systemic exertion intolerance disease.https://www.ncbi.nlm.nih.gov/pubmed/25695122. The literature typically combines ME with chronic fatigue syndrome (CFS), but it is unknown whether the conditions represent distinct disorders or different illnesses within a spectrum which may additionally include Gulf War illness (GWI).