There is "no difference among men, in intelligence or race, so profound as between the sick and the well" (F. Scott Fitzgerald, The Great Gatsby).I was born with far more advantages in life than so many others on the planet. From parents who loved me and were committed to giving me the best possible childhood and who made enough money so that I never worried about having food in my mouth or a roof over my head, to the happy accident of being raised on the outskirts of Washington, DC, one of the most powerful cities in the world with a myriad of opportunities, I have been utterly blessed.
Good grades came easy to me, and as I've bragged numerous times, I scored in the 99th (the highest) percentile in abstract reasoning in the standardized Iowa tests given to schoolchildren in many states, meaning that my scores were better than 99 percent of the rest of those kids.
My father's successful career in electronic engineering--with a patented update to a radar altimeter that flew in all commercial aircraft of the 60's, if I correctly recall what he told me--gave us a comfortable home. My brother followed in my dad's enterprising footsteps, becoming a computer whiz on the ground floor of that industry, retiring at the age of fifty as the head of computer security at a big state university, itself known for its technological advances.
My mother was, and my sister and other brother are, certainly no slouches in the intelligence department. Mom's facility with language gave her a sharp (but friendly) wit--she could not let a pun pass her by--and a talent for writing silly but clever poems for friends retiring and for scrap books for my kids.
Fresh out of college after taking off a few years to travel as a young, idealistic member of the hippie generation, my sister landed a plum job in a big suburban county teaching English in a magnet school. My brother, who won a golf tournament at the age of sixteen, went on to purchase and run a highly successful hardware store close to Dupont Circle in Washington, DC, and acquiring property in that high-priced area through the years.
And then there's me.
Like I said, I had all the promise in the world. I did have a couple of deficits, though, which no one realized when I was young--not even me, though I certainly felt their effects. These, generalized anxiety (plus a healthy dose of social anxiety) along with attention deficit disorder (ADD), made navigating the difficult waters of growing up more difficult for me than for my siblings--though that ride isn't easy for anyone. It's just that my siblings landed in better spots than I did, despite my many years of trying.
After skipping my junior year of high school and graduating at the ripe old age of sixteen, I (stupidly) decided college wasn't for me and opted for secretarial school instead. I was tired of school (that ADD thing), and I wanted a life like Mary Tyler Moore's on her popular show of the day--independent professional woman with her own cute apartment.
But by the time I was nineteen, I was married to my high school sweetheart, and we consciously began a family. Having been temporarily seduced into joining the Mormon church, I couldn't wait to hold a baby in my arms like those in the arms of all the other women at church. During those years, though I adored my babies, I regretted I hadn't gone to college and took a few classes when I could: Novel writing I and II, British Literature I and II, Intro to Philosophy.
And then--BOOM. Blessed childhood, future full of promise--all came to a screeching halt. The first clue that my life wouldn't be as perfect as I'd always expected it to be came when my first baby arrived two months early and suffered several severe health problems, including a skull malformation known as craniosyostosis that would affect his appearance and his psychic health forever (though the latter, I'm so happy to say, is very good at present, and I hope and pray it will continue to be so--and his appearance is absolutely beautiful, and I'm not just saying that because I'm his mom). In fact, I'm convinced to this day that my difficult pregnancies were the first real signs of the neuromuscular disease I'd later be diagnosed with.
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| My twenties were tough--but you can see how happy I am holding my little preemie son (at two months)! He, and I, unfortunately, had many health problems to come. |
Then my dad dropped dead of a heart attack after a night out ballroom dancing with my mom, as they'd met some thirty-eight years before. And just four years later, my mom, who had battled breast cancer and then liver and pancreatic cancer in those four interim years, died in her bed in the home they'd bought in 1949.
My marriage, not surprisingly, given our young ages when we married and lack of much of anything in common, fell apart.
That about sums up my twenties.
Determined to make my thirties better, and to honor my dead parents and their shared belief in the value of education, I moved with my two little boys to a little mountain town in Appalachia with a state school. My goal was to teach English.
I'd wanted to teach since I was a little girl, and I'd wanted to write since I was a little girl, too. I used to dictate stories to my mom, who would type them up, leaving big blank pages for me to illustrate. Once I began English classes in junior high, I knew that's what I wanted to do. But after graduating from high school, my pathological shyness made me doubt I could stand up in front of a bunch of kids and command a classroom--and what was the point of going to college if I couldn't be what I wanted to be, I'd reasoned at the wise old age of sixteen.
I had so many wonderful teachers through the years who'd encouraged my writing, from Miss Rosenthal in fourth grade who'd assigned weekly compositions, to Mr. Bayz in eighth grade who'd declared my inscaping piece on the ocean "hauntingly beautiful," to Mrs. Righter who'd felt I was wasting my time in a regular core class and referred me to a gifted reading specialist who had me doing independent work while still in 8th grade, to Mr. Fowler and Mrs. Crowe who'd read my papers and stories out loud to my 9th and 10th grade classmates, to the even longer list of English professors who'd influenced me in so many ways as I worked through a BA, then MA in English, and on to about twelve credit hours into my PhD program in English.
I wanted to be one of them, and after my parents' deaths made me the beneficiary of enough money that I could choose a new life for myself, I decided it wasn't too late to pursue my dream job, even if I still was pathologically shy. I told myself I'd get over it, and eventually I did.
In the fourteen years between graduating from high school and enrolling full-time as a college freshman at age thirty, I'd worked as a legal secretary in a small firm in Silver Spring, and then in a large corporate firm in DC: Arent, Fox, Kintner, Plotkin and Kahn. I worked for one of the top international partners, and my skills were in high demand whenever I could manage to work overtime (which was difficult since I had my little boys at home).
I was promoted in the firm to the personnel coordinator, overseeing the leave requests and scheduling of 105 secretaries and assisting the Director in hiring and other personnel matters. I went on to become the assistant Attorney Recruitment Director.
Then I tired of the long commute and took a job as a senior secretary for a government engineering contractor at NASA's Goddard Space Flight Center.
But I was dissatisfied being "just" a secretary, and when my parents' estate settled, it seemed my career could do nothing but soar when I left Goddard to move to the mountains and pursue my dream of teaching English.
And my dreams continued to soar as I worked through my classes, earning A after A. I was where I was meant to be. When I graduated in 1994, I received Departmental Honors from the English Department, given to one student per graduating class. I also took General Honors and graduated summa cum laude.
The icing on the cake was receiving the Maryland Collegiate Honors Council Outstanding Honors Student of the Year award, also in 1994.
While working on my degree, I took care of my boys as a single mom and worked part-time at a local community college, where I eventually moved into planning and facilitating health courses for licensing and accreditation of health professionals. One of my coworkers, a woman nearing her sixties, told me during that time:
"The world is your oyster. Once you get this master's degree, you will be able to command your salary."
I was admitted to the West Virginia University Master's program in English and was granted a Graduate Teaching Assistantship with tuition waiver, as well as other scholarships. I took a job in a non-profit health education agency just after finishing my Master's Degree, and again I excelled.
When a co-worker became sick and was unable to write a big federal grant application to continue a program employing several of the persons at the agency became ill, and our associate director who normally would have taken up the slack was on vacation, I took on the job and, in one week, wrote a major grant application that was funded for close to a million dollars. From that point on, I wrote numerous federal, state, local, and private grants, garnering millions of dollars in the total of nine years I'd eventually work there.
Never happy letting an opportunity go by, when the non-profit agency's health librarian left the job to take a position as an executive director at another agency, I enrolled in a library science Master's program at the University of South Carolina and graduated with 3.98 grade point average a year and a half later while working full-time.
Ironically, the one "B" I received during that Master's program was in grant writing, something I'd done successfully professionally for some time by then. (I'd missed one of the minor requirements, as I recall.) However, I turned the application I'd written for that class into a viable one, submitting it to the federal Institute of Museum and Library Services. And we won a National Leadership Grant with that application.
As much as I loved that job, though, eventually I landed my dream job: teaching English in a two-year college in West Virginia which, after my first year, became part of the system of my alma mater, West Virginia University. As hard as that job came to be--teaching freshman English to 28 kids per class with a five-course load is enough to kill anyone--I had finally arrived exactly where I was meant to be.
I loved teaching. I didn't love grading, but I did it with every ounce of my soul, wanting nothing more than to help each individual student reach his or her writing potential. I still believe fervently that the ability to write is the key to success in academia and beyond. And I loved being the slightly wacky English professor who walked into her Poetry and Drama class wearing a Greek toga (over her "normal" clothes), a band of laurel leaves in her hair, demonstrating strophe and antistrophe while reading aloud from Oedipus Rex.
When teaching Hamlet, I'd assign key scenes to groups, and the students would practice and bring in props and eventually act out their scenes on the stage in the building where I taught. I still have a plastic sword brought in by one class's Hamlet--he'd never come to my office to retrieve it, though it was his little boy's. Another Hamlet scored a skull from the Biology Department for his "Poor Yorick" scene.
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| One of my students as Hamlet, with a skull he'd scored from the Biology Department, acting out the "Poor Yorick" scene |
After a class in which students took different parts in Christina Rossetti's "The Goblin Market"--twittering as the eroticism of the dialogue came alive, several of the students left the room calling out in the hallways: "Come buy! Come buy!"
An Appalachian Lit class became a learning experience for me, as every student in the class had been born in West Virginia, while I was a Washington, DC, native! The final paper involved each student's telling his or her story about growing up in Appalachia, from the daughter of two hippies who'd spurned the city to homestead in the mountains to those who had grown up in the near-by town of Piedmont, immortalized in Henry Louis Gates' memoir, Colored People.
Gates himself had attended the school where I taught, as I informed every amazed class I stood before, and he'd been inspired by his English professor, Tony "Duke" Whitmore, to pursue a degree in literature rather than medicine. The Duke had died three years prior to my starting at the college, and I wonder to this day whether I'd still have a job if he'd still been president when I became sick.
I wanted to be a Duke Whitmore inspiring students to love literature. I wanted to be a Mr. Keating in Dead Poets Society, a "Sir" in To Sir With Love, a "Teacher" in Catherine Marshall's Christy. I was thrilled to be working in a school whose students weren't born with silver spoons in their mouths. My "kids" came from the hollows of West Virginia and distant inner cities where the college recruited. I loved the "C" student in whom I could make a real difference; I knew the A's and B's would be fine. Of course, I enjoyed them, too, and I admired them, and I tried to help those struggling with D's and worse.
And I was well on my way to achieving what I thought would be my lifelong (if a bit late) teaching career, earning merit points based on my student, peer, and Review Committee evaluations. In my six years teaching, I was nominated "Outstanding Professor of the Year" twice--the awards went to professors who'd been there longer--and, in a school newspaper poll of fifty students in the cafeteria, I was runner-up for "Most Unforgettable," second only to the beloved cafeteria lady, the students' mom away from home! And I was told by the campus provost, just a few months before being given my pink slip, that I was a "shoo-in" for tenure.
I remember walking across the quad under the massive oaks and maples, realizing that yes, Mary, you finally did it! You have found the place where you'll be the rest of your life, doing exactly what you've dreamed of doing your entire life.
I had a campus full of friends in the coworkers I enjoyed every single day, along with the fondness and appreciation of most of my students. On the little board outside my office, where I hung my New Yorker cartoons as many other English profs had done before me, a student had written at the end of the semester: "Ms. Spalding rocks!"
And then I was out on my ear.
Why?
Because I got sick.
Yes, this is the simple truth. No other truth exists.
Beginning in the years I was going to WVU for my Master's classes and working at the community college and then the non-profit agency, my stamina became an issue. Yes, I was doing a lot, but I began feeling like an 80-year-old woman.
Long story short, I came down with severe, intractable hypertension at the old age of 38, even though I wasn't overweight or stuffing myself on salt or anything else. My only risk factor was my father's legacy of hypertension. That was enough.
Through the years, my health tanked. After thirteen years of blood pressure regularly going as high as 208/135 (that was the worst, but it came close to that nearly daily in my last year of teaching), I was finally diagnosed with an adrenal adenoma, adrenal hyperplasia, and primary aldosteroism, also known as Conn's Syndrome.
Shortly after that diagnosis, I spent a summer in apparent heart failure and, determined to get to work in the fall, kept telling myself I'd feel better until one night I was certain I was going to die and went to an emergency department.
I was admitted, told I was indeed in heart failure and had probably had one or two heart attacks already.
There I was, forty-nine years old, on my deathbed.
And from my deathbed I talked to my chair in the English Division at my college, who covered my classes. But I didn't get better, and it was clear I'd need yet another semester off. (I'd taken one off when the adrenal problem became known, and then I'd worked .6 FTE the following semester in the tutoring center while trying to regain my strength.)
And because I wasn't worth another 15 weeks of recovery time--I truly believed then that, once I was adequately treated for the newly found adrenal problem I would be able to go back to work without any problems--I was told I wasn't wanted back. This, as I say, just a few months after the campus provost told me I was a "shoo-in" for tenure. What had changed? Nothing but my health. And if you think a person can't be canned for his or her bad health, think again.
You see, I'd inconvenienced the Dean of Curriculum and Instruction, a curmudgeon disliked by all the faculty. I'd pissed him off by going into heart failure just as the semester began, necessitating his replacing me for the semester. Somehow, I hadn't managed to dash off a request for a leave of absence before arriving in the ED in heart failure. How unprofessional of me.
Anyway, I got the official letter saying I'd failed to ask for that medical leave of absence in advance and was being asked for my resignation, or be terminated. Of course, I didn't resign. Why should I? One of my coworkers had suffered a massive stroke the same semester I was out for my adrenal problems, and he clearly would never teach again, but he remained on the roster until well after I was canned.
Oh, I tried to protest. I filed an appeal that failed, as nearly all first ones did, but I was eligible for two more appeals, and I was told by numerous persons, even one in the West Virginia Higher Education Council, that I would surely have my job reinstated. I overheard the WVU lawyers in the ladies' bathroom during a break in the hearing I did attend saying, "Wow, this really shows how bad the system is."
But guess what, sports fans?
I was sick. Very sick. Filing a bunch of paperwork and dealing with all the red tape of an appeals process was beyond my ability at the time. I needed to heal, to recover.
All my life I'd been blessed by coworkers and others with whom I interacted on a daily basis who valued me. When I left the DC law firm, one of my bosses pulled me aside and begged me to stay. "You aren't like the rest," he told me. "They're the worker bees. But you, you are someone special."
Not very special, apparently.
Losing my dream job happened seven years ago, and sometimes I still wake up and wonder how everything went to hell so fast and so completely beyond my control.
After a year of unemployment while I struggled with the hypersomnolence that has taken over my life today, I was rehired by the health education non-profit agency, where I again wrote millions of dollars of funded grant proposals.
But eventually my health problems interfered too much with the organization's structure--it got to the point when I could barely be awake during the day, only at night--and though I'd argue I can write better at 3 a.m. than most can any time of the business day--it's true I couldn't fully participate in the day-to-dayness of the job. Though I was working on several major projects at once and, I still believe, held my own, I could do that only by working on my own schedule, and that just wasn't cutting it anymore. I knew it was time to go, and my boss, who is a friend, thought so, too. I needed a long rest, actually.
And, fact is, I couldn't have kept teaching full time. I couldn't keep working a full-time job.
My talents and abilities have been hijacked by my utter lack of energy, the result, I finally learned, of a neurodegenerative disease. I still don't know which neurodegenerative disease, but my neurologist said he'd diagnose me with MS except that I don't have lesions in my spinal column. I do, however, have lesions throughout my brain, along with many other symptoms of neurodegeneration that I've chronicled here. The latest is REM sleep behavior disorder, during which I act out uncharacteristically violent dreams, a common precursor to Parkinson's and other neuro diseases.
And so here I am, put out to pasture.
I try to stay busy. I love to sew and embroider and read and write, and I do those things. Once this god-awful winter is over, I will love being out in the yard and woods whenever I have the energy to do so.
I still believe I could teach one or two classes a semester. I just can't work full-time anymore. But I still have so much to give.
The reality of my situation, where I am today, hurts. I try not to dwell on it, but some days it's difficult to push away the nostalgia and the wonder about what might have been. I went from being at the peak of my professional life to unemployable in just a few years, and not because of anything I did to make that happen, other than get sick.
The psychic pain is the worst, but the practical side of it sucks as well. At long last, I enjoyed a comfortable salary for someone living in Appalachia for a couple of years, but in an even briefer period of time fell unceremoniously into poverty.
I now receive federal disability payments, thank god, but they are barely enough to keep the home where I still live with my adult disabled son. It's the only tangible thing I have to show for my struggle to attain professional success, which I did.
Even landing my dream job. And losing it, through no fault of my own.
I tell this tale to let the world know that those of us in the 47 percent are not all here because we are lay-abouts and losers. In fact, I'd venture that few of us are.
In fact, you could find yourself right here where I am in the blink of an eye, no matter how successful you now consider yourself.
You know the old saying, "There, but for the grace of God ...."
Oh, I still live in the grace of God, if God exists. I have nothing, truly, to complain about. I've never worried, really, about being hungry or bombed out of my home. I still have all the blessings of my birth, even if the outward acknowledgement of those blessings is not so obvious. I am not bitter, and I am not done.
I write simply to remind us all of how easy losing what we have can be, and to keep gratitude at the forefront of our lives. And, yes, to tell my story. Because I can still do that.
I can still write.
Epilogue: The very same night I posted this episode (tonight, in fact, or this morning, given that it's almost 2:45 a.m.), my former boss at the non-profit asked if I'd be willing to look over a project I could possibly do on contract. So here's another reason for this episode, and it goes out to others who are suffering from chronic illnesses that nipped their promising careers in the bud: Don't give up. It's hard; it's very, very hard, but don't ever give up. We are sick, but we are not without talents and abilities that can find their places in this world. We are sick, but we aren't done.
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