Basic Stuff

  • Name: Allyn Archer
  • Country: United States
  • State: Georgia
  • City: Atlanta
  • Gender: Female
  • Education: Ph.D Degree
  • Primary Illness: Chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS)
  • Diagnosis:
    • Chronic Fatigue Syndrome (ME/CFS)
    • Postural Orthostatic Tachcycardia Syndrome (POTS)
    • Migraine
  • Year Illness Began: 2003

Functioning Interrupted

Former Level of Functionality: 100
(No symptoms at rest; no symptoms with exercise; normal overall activity level; able to work full-time without difficulty.)
Current Level of Functionality: 10
(Severe symptoms at rest; bedridden the majority of the time. No travel outside of the house. Marked cognitive symptoms preventing concentration.)

Work Interrupted

  • Former Occupation: Architect, Professor of Architecture
  • Job Responsibilities at Former Occupation:

    Full professor with tenure, head of graduate program in architecture
    Taught graduate architectural design studios and seminars
    Robust publishing record (two books, several dozen essays)
    Frequent travel as guest lecturer, conference keynote speaker, juror for design reviews

  • Years of Work Lost: 16
  • Current Work Status: On disability

Income Interrupted

  • Yearly Income Before Becoming Ill:

    $130,000

  • Yearly Income From Disability:

    $18,000

  • Minimum Current Annual Income Loss:

    $193,479

  • Total Projected Economic Losses For Years Not Worked:

    $2,768,291

Other Interruptions

Certified Disabled: Yes

Finances:
  • A member of my family stopped or reduced their time at work to become a caregiver
  • My parents or other family members have provided financial support
Work:
  • I reduced my work hours
  • I left my job or retired early
Housing:
  • I lost my house or had to move to a smaller dwelling

Most Impactful Loss

The loss of my career was devastating, but the worst and and, by far, most painful loss was the ability to attend my daughter's wedding. I spent the day - guess where - quietly cursing Stephen Straus, the CDC, the NIH, Francis Collins, and Elaine Showalter. (OK, maybe not so very quietly.)

My Story

In some ways, my life has resembled a work of fiction. Descended from seven generations of East Tennessee hillbillies - who proudly fought for the Union during the Civil War, and, to this day, hold liberal views - I was fortunate to receive a private, New England education, which led to a professional architecture degree and a Ph.D. in Architecture History and Theory, which in turn led to an undreamt-of academic career.

(A bit of context: I still sound like a cross between Dolly Parton and Marjorie Taylor Greene.)

By the time ME came along to direct an attenuated, yet screeching, halt to that career, I had been offered teaching positions at five Ivies; had held three prestigious fellowships and two distinguished visiting professorships; and was regularly traveling to speak and/or to serve on design juries the world over - regretfully declining many invitations; and half-enjoyed/half-abhorred executive editors regularly calling to request publication of the next morsel of writing. Working life was - as the younguns say - A Lot.

At the same time, I was married to a university administrator, with three children (his, hers, and ours), and chose to be the trailing spouse. This meant that I lived on airplanes and in hotels in two-thirds of the world's time zones, always rushing back to be Mom: attending swim meets and dance performances; adjudicating two-day-old disagreements; catching up on the local departmental woes and triumphs; changing the linens; and finding a few minutes a day for the mental health blessing of grubbing in the garden. There was hardly a plant's botanical name I didn't know. (Today, I couldn't tell you three.)

...

In early February of 2003, despite October's flu shot, I contracted The Flu From Hell. The next two months were a haze of misery and Enya. I recall hazy images of bright peach explosions in the sky: the mid-April bombing of Baghdad, on our little bedroom tv. By the end of June, I was still a bed pancake.

By late August, I was out of bed, but Not. The. Same. (Y'all know the deal.)
Over the following few years, I tried working part-time, working from home, working in bed, and - finally - not working. Eventually, good ol' ME (I cannot bring myself to call it "ME/cfs") took me down. Since mid-2007, I've been 99% bedridden (meaning, I can still drag my carcass to the bathroom (a triumph!) - though taking an actual bath in an actual tub is a prospect of Everestian proportions).

And now, the favorite activity of my lifetime - reading - challenges me: I have poor retention, and can never remember which of the two presenting pages I've just read. Also challenging are over-two-minute phone calls with old friends, which I have to spread out over the month, allowing sufficient recovery time from lying on my back, TALKING. (Furthermore, I'm now approaching Hour Three of writing what, thirty years ago, would have taken about five minutes.)

In 2009, my husband - an exalted, blue-eyed saint who cheerfully carries every ounce of our domestic weight - moved us to a cabin by a trout stream in a Southern Appalachian National Forest, thinking the deep well water and clean air might be healing. The move also put us within easy driving distance of Paul Cheney's office in Asheville, NC., and I saw and spoke by phone with Dr. Cheney, regularly, until he passed away.

[That man fought a knock-down, drag-out fight for ME patients, and I will always be grateful to him for his erudite, but unfailingly friendly and kind ministrations. And yes, he was ungodly expensive and didn't take insurance, making access to him prohibitive to most and forcing many of us to go into hock in order to get in the door. (Insert frown emojis.)]

Twenty-one ME years and fifteen All-Bed years later (a period of time both perceptually near-infinite, when a day can pass like frozen molasses, and shockingly short: whoops, that darned sun is already disappearing behind the oaks and hemlocks - again!), we're still here in our cozy, book-lined cabin. And, while I've LOVED the sounds of leaves rustled by mountain breezes; and of eerie critters howling in the dark; of happy - then hungry and territorial - wildlife at their day-jobs; and of the flowing water and its morning reflections faerie-dancing on the ceiling above My Mattress-Valley Home (generously shared by dog and cat, sorely in need of clean linens, and - below - housing a Midtown Manhattan's congestion of boxes, hair-entangled** cat toys, and dust Godzillas) ... I'm still here, flat as a fritter.

And still plotting all the things I will do when, one of these mornings, I shall awaken, completely well and poised to frolic in the forest with the does and fawns and possums - and hopefully not the cougars, wild boars, and copperheads. (On the fence about bears.)

------

** The Eternal Problem of Hair... Uncut for an eon, mine - when loose - tickles my pelvic bones, but customarily hangs in a careless braid or fat, scrappy knot. Because POTS decrees that I can't sit in a chair long enough to have it cut. Sound familiar?

My husband, caretaker, and forever-true-love is bald. I've begun to see the appeal.



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