Episode 57: From Peak to Poverty, Thanks to Poor Health: This Story Could Be Yours

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.

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.

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.

Episode 56: Latest Health Care From Doctors of All Stripes: "Just Go to the Emergency Room"

Thanks, ClipArt101.com, for this
very pink physician! Not that
color has anything to do with
how good or bad a doc is--
just appreciate the free graphic.

Remember when the stereotypical advice from a doctor was "Take two aspirin and call me in the morning"?

Well, guess what it is now?

"Just go to the emergency room."

This is yet another example of today's health care system's passing the buck at the expense of each and every patient, AND the system itself.

I've worked in health care for many years, and I know for a fact that the emergency department is the most expensive place for a person to seek care.

So why are doctors increasing health care costs by sending patients there instead of seeing them in their offices?

In today's case, I have to admit it is my dear, eminent Dr. A who has resorted to this non-answer. He is my neurologist, and I admire him greatly, but when I called today and told the office about my nearly non-stop headache for the past week and my new sleep behavior problems, I was called back and told, you guessed it, to go to the emergency room.

Why aren't doctors taking care of their patients anymore?

About a year ago, I was having a myriad of problems, and my regular doctor, or PCP (Primary Care Provider) in medspeak, told me I just needed to be admitted and a bunch of tests run to figure out what was going on.

Stupid me, I told her I didn't want to go to our local hospital, since it nearly killed me a few years ago, and said I wanted to go to one in the next town over where a number of my specialists are.

The next day I changed my mind, called her office, and received a call back that said, you guessed it, "Go to the emergency room."

When I did that, I told the attending physician that my PCP had said I should be admitted.

He gave me a scornful look and said, "What are we?  A McDonalds?"

And the visit went downhill from there.

Sports fans, I've been to the emergency department, and it is an utter waste of time unless you have a gunshot wound or have broken an ankle. For the problems I have, I'm given the same battery of tests, and none of them pinpoint the problem. I learned this after I was told numerous times when I couldn't breathe properly--NOT when I actually could not catch my breath to the point that I was about to die of suffocation, but chronically, and seriously--to go to the ED.

And each time I went I was given the same tests that showed nothing at all. And yet, calling specialists about the problem, I was still given that same old non-answer. And despite all the signs and symptoms of being deoxygenated on a regular basis, no one has cared enough to really get to the bottom of it.

Send patients to the emergency room to doctors they've never met, racking up costs that are higher than if we are seen in a doctor's office, without the benefit of our own doctor's history with us and knowledge of our case.

Does that make sense? Yet, that's what doctors are doing today.

My headaches are bad, and I told the person on the phone that, but I said they weren't quite as bad as migraines, which I've had before.  It's true they are affecting my ability to eat anything--everything looks nauseating to me--and I know migraines cause nausea. But I also know what a migraine is--you can't stand being alive; light hurts; sound hurts; and vomiting adds to the misery without giving any relief.

No, my headaches right now aren't that bad. But they're pretty darned close. I just lie in front of the TV, with the sound low, and pretty much stare into space. I feel nauseated if I think of food, and all I can think about is the pain in my frickin' head. I mean, they're miserable.

Is that enough for me to go to the ED?

I don't think so. I really don't.

But maybe my doctor could see me; maybe he could talk to me and try to get to the bottom of the problem. He is a neurologist, after all--and the emergency room doctors are NOT.  Moreover, I'll be lucky to see a doctor if I go there; most likely I'll see a physician's assistant or a nurse practitioner, which are fine with colds or flu or that sort of thing, but they don't have the training to deal with my myriad of health problems, including serious neurological issues.

If my neurologist had agreed to see me, maybe he could have ordered the appropriate tests to see whether, perhaps, the mass found in my sphenoid sinus in 2012 has spread. Maybe he could tell, by the way I describe my headache, what type it is. Maybe he could prescribe something to help.

I am so confused. Supposedly, doctors are on board with reducing health care costs. So why are they now, as a matter of course, sending their patients to the Emergency Department, the most expensive place to receive care?

Not only that, why are they forsaking their patients this way?

I don't know.  I guess I'll go to the damned ED if my head feels like it did last night--and the headaches get worse as the evening wears on after I wake up. (Being hypersomnolent, I sleep all day and usually emerge sometime between 6 pm and 9 pm, and that's when the headaches have begun.)

I'm not happy about it, though. Why go for substandard care at increased cost for something that could be handled through my own doctor's office?

Well, sports fans, I guess I don't have any damned choice. I feel like crap, but I have to pull myself off the couch, go out in zero degree weather here in the mountains, and drive to a place where I"ll have to sit among a bunch of people coughing and hacking, only to be seen by a person without the neurological training to truly get to the bottom of what's going on.

Does that make any sense?

Oh, and I forgot.  My car won't start.  The cold has killed its battery.

True, I'd need a car to get to the doctor's office, but I could perhaps borrow one for such a trip--but when going to the ED, who knows how long it will take, and it's hard to borrow a car when you have no idea when you can return it.

Yes, it's just so easy when you're sick.

"Just go to the emergency room."

Hey, U.S. health care system, you are one sick patient.  YOU'd better go to the emergency room! Not, as I already know, that you'll get the diagnosis or care you need there unless, indeed, you have a traumatic injury of some kind.

The ED is NOT for problems such as the ones I'm dealing with right now. But that's what I'm told.

"Just go to the emergency room."

Maybe it is a McDonald's after all.  God help us all.



  

Episode 55: Headache, Nasty, Nasty Headache

Thanks, ClipartPanda!
She looks like my mom!

This headache has lasted about four days now, though it briefly disappeared today before reasserting itself most obnoxiously.

Despite medicating myself with Tramadol, which my kidney doctor told me I should be taking rather than NSAIDS--your typical, over-the-counter pain killers--as well as Aleve Sinus and Cold (containing an NSAID--but desperation leads to recklessness), and 3 tabs of Ibuprofen (another NSAID) and back to yet another Tramadol, well, sports fans, the headache remains.

And it's a bitch. Honey gave me a heating pad to put behind my head, along the skull base, where it and my neck were hurting.  But no sooner did the heat help that area that the headache moved to across the top of my head.  Meanwhile, a constant low-grade pain and pressure resides right behind my eyes.

I've had headaches over the years, including bona fide migraines, complete with vomiting.  These are not migraines, but they're fairly debilitating nonetheless. I know I don't feel like doing much of anything. It's Valentine's Day, and Honey had mercy on me and didn't even pressure me to make love.

He could see I was in pain.

That's one of the reasons I love that guy. Though making love to him is another reason I love him, and it would be nice to actually feel like doing that once in a while--but it's as if my sex drive switch has been turned off, literally. And not because Honey isn't the sexist, sweetest man alive.

But I digress.

This sudden onset of intractable headaches, combined with my also sudden and recent onset of REM Sleep Behavior Disorder, can't help but make me think something more acute than mere neurodegenerative disease (with which I've been diagnosed) is going on.  Something becoming acute. What might it be?

Then I remembered:  Two years ago, when my episodes of weakness and breathlessness upon slight exertion began, an MRI showed that I have a mass in my sphenoid sinus.

According to the literature, any mass in that sinus--the one closest to the skull base--should be investigated. I was told by my Ear, Nose, and Throat specialist (ENT) that mine was most likely a benign polyp or cyst, and that was the end of it.  Unless it wasn't.

Tonight I did some more research and, in fact, even benign processes such as those suggested by my ENT, or mere inflammation, can cause symptoms such as headache--in the very areas mine has been hurting--and other neurological symptoms.  For instance, problems with the trigeminal (5th cranial) nerve may originate with sphenoid sinus problems.

I've had about five instances of trigeminal nerve neuropathy, in which a light touch beside my nose led to an electrical shock down the side of my nose and across the bone above my top teeth.  This is, in fact, the trigeminal nerve and one of its branches.

So now, sports fans, I can't help but wonder--is, in fact, problems in that sinus the root of my problems?  I've already said numerous times that my medical problems frequently originate in the hypothalamus, a little bitty part of the brain just behind the sphenoid sinus, that is responsible for regulating the hormones that control our autonomic functions--sleep, breathing, hunger, sweat, sex drive, etc.--all of which have been problem areas for me for several years.

Oh, well.

One can only speculate.

And one can call the eminent, wonderful Dr. A, her neurologist, Monday morning.

It sure can't hurt to take another look at that mass in that ol' sphenoid sinus.

Wouldn't it be wonderful if what is happening to me turns out to be curable, albeit with a rather nasty and risky surgery?  I'll take those odds over slowly degenerating neurological function, so here I am, almost hoping there is such a problem.

All I know is, I want this frickin' headache to go away.

Episode 54: REM Sleep Behavior Disorder Part Deux

Yikes. This REM sleep behavior disorder thing has snuck up on me fast. Within the past two weeks, I've had two definite and one likely episode. I've already described two in my previous episode, but I'll recap them here and then tell you about the latest.

In the first, I woke in the middle of a dream in which I was fighting someone--perhaps a friend from childhood--and, though I'm hardly the violent type, I ended up kicking her as hard as I possibly could in the belly. Only it wasn't her belly; it was the end of the bed, and thank goodness none of our pups were sleeping there at the time, or they'd have been smashed or flung across the room.

The second is presumed, but no other logical explanation exists.

One day recently, I became aware of my finger hurting shortly after I woke up.

I saw two bruises on the back of my right ring finger between the knuckle and the tip. As I moved the finger around, the knuckle seemed to click back in place; it had been dislocated.

I had no memory of hurting the finger the day before, so it most likely happened while I was sleeping. Perhaps I'd flung it behind me and hit one of the spindles of the headboard. Who knows--I may have even wakened at the time, but I can't say. My arms and legs have been jerking all over the place while sleeping for a long time.

This is actually yet another sleep disorder that is found, again, with neurodegenerative disease as well as narcolepsy: period limb movement disorder. Really? Apparently so. I remember falling asleep in Germany in the room where Sabine, my best friend who was dying, slept next door. Every night I'd wake up after my arm struck the wall, horrified that I might have wakened my sick, sleeping friend. This sort of thing continues happening--I catch myself now and then.

As WebMD says regarding the condition, "These movements are very different from the normal spasms, called hypnic myoclonia, that we often experience initially while trying to fall asleep."

Scary, too, is that period limb movement disorder (and perhaps these other problems?) may be caused by antidepressants. I began taking Effexor shortly after it hit the market in 1996, and I've taken it ever since. Though I haven't been severely or clinically depressed at any time other than that episode in '96--brought on, I'm convinced, by my very bad reaction to Depo-Provera--the Effexor has been a life-saver, ironically, in controlling my anxiety. I'm on a low dose, but no one ever tested the drug over two decades. It doesn't seem entirely unlikely to me that the drug might have brought on this degenerative process.

Now we come to last night.  Again, I woke in the middle of a dream--but just a moment too late, as I'd just punched Honey several times!



Right away I realized what had happened; I gasped and apologized. He just sort of grunted and kept sleeping; I wasn't sure he'd even felt it. I hit pretty hard, but he was covered in two layers of comforters--I tend to sleep on top of the covers, and he stays cocooned underneath. Probably a good idea especially now--much safer that way!

The fight in that dream is murkier for me; I just know I was fighting someone, and I'm pretty darned sure it wasn't Honey, and my poor innocent sleeping darling was pummeled because of it! Fortunately, WAS his chest and not his face that my fists connected with.

Today I asked him if he remembered my punching him, and he said he did. Perhaps, like my friend whose husband also has the disorder due to Parkinson's disease, he should line up some pillows between us in bed from now on.

This is scary stuff! Not only because I might hurt a loved one--man or beast--or myself. But because the condition is frequently a harbinger of brain degeneration.

According to WebMD, "The exact cause of REM sleep behavior disorder (RBD) is unknown, although the disorder may occur in association with various degenerative neurological conditions such as Parkinson's disease, multisystem atrophy, diffuse Lewy body dementia, and Shy-Drager syndrome."

Another cause is drug or alcohol withdrawal, but I'm not dealing with either of those.

Almost more disturbing to me is the violence of the dreams. I have always been quite good at remembering my dreams, and never have they contained much, if any, violence (other than a period decades ago in which I was the victim of violence--not the perpetrator). I can't help but wonder whether this condition also increases the level of violent content in dreams. As a peace nut, that scares me a lot.

In fact, "RBD is characterized by the acting out of dreams that are vivid, intense, and violent." There it is. Violence. Not how my brain, even my sleeping brain, usually works! "Dream-enacting behaviors include talking, yelling, punching, kicking, sitting, jumping from bed, arm flailing, and grabbing."

There's that arm flailing thing. And I lifted my body off the bed when I kicked that first time--it was a truly violent, all-body kick.

Very disturbing!

However, that violence is not indicative of a violent personality, as I already felt confident was true. "People with RBD are not more aggressive or violent than others when awake. RBD is a medical problem," says Sleep Education, a Web site from the American Academy of Sleep Medicine. "It is not a psychiatric disorder."

In fact, the Cleveland Clinic describes the dreams in this disorder as "distinctly altered"--one presumes meaning altered from "normal" dreams the person may have--"that are vivid, intense, action-packed, and violent."

Happy happy, joy joy, in the famous words of Ren and Stimpy.

WebMD states that "RBD often precedes the development of . . . neurodegenerative diseases by several years."

Well, la di da.  I already have my diagnosis of neurodegenerative disease from the one doctor I see that I implicitly trust:  the eminent neurologist Dr. A, as described in other episodes.

So, all I can surmise from this sudden burst of REM sleep behavior incidents is that the degenerative process is speeding up.

I know I've been sleepier than ever before.  I'm having a harder and harder time doing much of anything, though I forced myself to bake sugar cookies for Valentine's Day today, and I spent the last couple of days working on a toddler dress with some of the fun fabrics I'd bought while making purses. Making toddler dresses for future sale on Etsy is how I channel my never-had-a-baby-girl blues.

The cookies aren't frosted and the toddler dress isn't done yet, however.

Still have to buy confectioner's sugar to make decorative
frosting for MOST of the cookies (we were out), but I did
manage to finish a few tiny linzer cookies. Yum.

Sleep so frequently intervenes.  And though the hypersomnolence is a royal pain in the ass, having stolen my professional and much of my social life, sleep over the past couple of years has been mostly pleasant. Other than the night terrors and hypnogogic hallicinations described in my previous episode that happened decades ago, I've rarely had nightmares.

But now I'm having nightmares--violent nightmares--and they are bleeding into "real" life.

I don't want to hurt my doggies or my Honey--or myself, for that matter.

And I don't want to degenerate this quickly.

I like my brain.

I really do.

I'm going to miss it if it goes.  I'm going to miss me.

In the meantime, pleasant dreams!

Episode 53: Wake Me Up When It's Over, OR When Dreams Become Too Real

Sleep is a fascinating part of human life. I've always thought so, but I never dreamed (ha) it would become such a huge part of my life--as in, regularly sleeping 12, 15, 17, 24, even 30+ hours at a time, nearly every day. Once in a blue moon I'll have the opposite: an awake period of 24-30 hours, and then I'll go back to the hypersomnolent pattern.

That problem is accompanied by a couple of other sleep abnormalities. I have a reversed circadian rhythm--Circadian Rhythm Disorder--in that my most wakeful time is between midnight and 6 a.m. I sleep most of the rest of the time. Thus, I could easily be diagnosed with Excessive Daytime Sleepiness (EDS), an actual medical diagnosis, though that hasn't officially happened in my case. At times, I have insomnia at night as well.

A typical day

About a year ago I was, however, diagnosed with Idiopathic Hypersomnia after a Multiple Sleep Latency Test (MSLT) proved I fall asleep extremely fast after being awakened and forced to stay awake for 20 minutes or so, then allowed to lie down again. This is after a full night's sleep, mind you. Falling asleep in anything under 10 minutes is diagnostic, and my average was 4 minutes.  I also quickly went into REM sleep on a couple of the times I was "allowed" to fall asleep.

These test results could also indicate narcolepsy, but I don't have "sleep attacks" in which I suddenly fall asleep in the middle of a conversation, and as far as I know I don't have cataplexy, which most narcoleptics do. In cataplexy, a narcoleptic loses all muscle control upon strong emotion, including humor. I do think I may have had an episode or two, but not regularly enough to really register. I do tend to collapse when really laughing.

Today I managed to get out of the house for three hours to run some errands. That should have been a relatively easy task, especially since about half that time was spent having a late lunch with my son, but when I got home I was utterly exhausted and clipped on my CPAP and went to sleep.

My CPAP is for the sleep apnea I was also diagnosed with a year or so ago.  This "Continuous Positive Airway Pressure" machine includes a mask that goes over my nose with a long tube connecting to a machine that constantly sends air into my nostrils, thereby ensuring air will pass through any obstruction in my airway (such as its collapsing, which happens in obese people as well as those with poor muscle tone, when lying down).

Sleep apnea can also be caused by a "central" (brain) problem, in that the brain's mechanism for making one breathe during sleep is broken. I suspect I have both types.

Yet, sports fans, those are not my only sleep problems.  Oh, no.  The plot gets much, much thicker.

The latest parasomnia--a word meaning abnormal sleep behavior--I've been blessed with, apparently, is REM Sleep Behavior Disorder.  So, what's that?

REM sleep, as nearly everyone knows, is a phase of sleep in which a person's eyeballs rapidly move back and forth ("Rapid Eye Movement sleep"). It's associated with dreaming, but dreaming can happen in other sleep states as well.

The body--specifically the brain--does an amazing thing when someone is in the REM state: it paralyzes the sleeper. That's why you can run and jump and hit and kick and fall and do all kinds of physical things while dreaming with barely an indication of this physicality in the sleeping body.

In REM sleep behavior disorder, the brain fails to keep the body paralyzed. I learned about this from the wife of a friend with Parkinson's Disease. She's been kicked and punched by her husband while he's in the throes of a dream.

"He'll be on the basketball court," she says of her husband, who was a star player in school, "and he'll get in a fight and start flailing out and hitting."  She now sleeps with a row of pillows between them, as these movements can be strenuous and dangerous to both of them.

Well, guess what happened to me the other night, sports fans?

I was dreaming about getting into an argument with a friend, and very uncharacteristically I became so angry I kicked at her as hard as I could. I woke up just then, as both my legs were forcibly kicking, so hard that it felt as if my butt had come off the mattress. I'm just grateful my three dogs weren't asleep at the foot of the bed, as they often are. The kick was so hard I'm sure I would've hurt them.

Today I found my right ring finger hurting, and when I looked I saw two bruises on the back of the finger between the knuckle and the tip. I was mystified; I didn't recall any incident that could have caused this. I moved the finger a bit, and the bones clicked; apparently, they'd been out of joint, and now I'd clicked them back in.

The only explanation I can come up with is that I flung my arm out in sleep, and the finger connected with one of the spindles in our headboard.

This is more than a little disturbing, as REM sleep behavior disorder can be a sign (and is often the first sign) of degenerative brain disease.

Oh, yeah. I have degenerative brain disease. The eminent, amazing, wonderful Dr. A. diagnosed me with that very thing, didn't he?

It's just upsetting that I now have yet another sign that my brain is losing its mojo.

And the one thing I've always felt good about has been my brain. I'm a smart gal--or I was. I come from a smart family, and I have smart siblings. My father got his degree in chemistry, worked as a physicist, and then worked as an electronics engineer in aeronautics. He has two patents. One of his designs--a radar altimeter in the early 1960's--flew in every commercial aircraft flying, if I remember what he told me correctly. And Mom was no slouch in the intelligence department, either. Her love of words came through all the time--she had a quick wit and could always catch a pun; she loved writing silly but sweet and clever poems for people's birthdays or retirements, and in my sons' photo albums.

And, as I've bragged before on The Mary Dell Show, in third grade on standardized Iowa tests used in many states, I scored in the 99th percentile in abstract reasoning. That's certified geek/nerd level! There is no 100th percentile. It means I scored better than 99 percent of the others taking the test throughout the U.S.

So, the last thing I want to have happen to me is to lose my marbles, though it's happening, apparently.

Sleep disturbances, actually, have plagued me my whole life.

As a little girl, I rocked myself to sleep. This is actually known as Rhythmic Movement Disorder. I'd get on my hands and knees and rock until falling asleep. After about age 3 or 4, I stopped rocking on my hands and knees, and simply rolled my body back and forth, either singing or listening to music, until I fell asleep. I didn't grow out of the habit until I left home at the age of 19 to get married. Having to stop it was difficult. My husband caught me more than once doing this when I didn't think he was around. For some reason, it was immensely comforting.

Although many tiny children do these things to get to sleep, only 5 percent of kids age 5 or older do, according to the Cleveland Clinic's page on the disorder. And I did it until 19 years old! And even a few times after that. Sheesh!

Another childhood sign of sleep problems is bedwetting, and I could have won the prize for most prolific bedwetter ever. Rare was the night when I didn't pee my bed, and this persisted until about the age of 10. The last time it happened was on a family vacation--I was 12 then and horrified to wake up on the camper's mattress with that familiar warm, wet feeling underneath me.

But probably the most dramatic of my sleep problems to date began when my mother died of cancer in 1989.

The night after she died, I had trouble falling asleep, naturally. After crying myself to sleep, my eyes suddenly opened, and I saw my mother walking toward me from the shadows of the alcove between my bathroom door and closet.  She came close to me and touched her hand to the side of the mattress.  "Don't worry about me," she said.  "I'm fine."

If my mother could come back and tell me something, this is what she would say. She always worried about everyone else. So maybe this was truly a visit from the beyond, or it was merely my body's reaction to severe stress. I like to think the former, but most likely it's the latter.

The very next night, I was in a dead sleep when I felt my body suddenly being propelled to a sitting position, and an overwhelming terror came over me. Eyes wide open, I scrambled out of bed and ran down the hall from my room to the living room. I stopped when the room appeared to be filled with shapes--they looked like gauzy torsos--that at first scared me but then made me feel reassured. I remember thinking they were spirits, and somehow they were there to comfort me, strange as they were.

I sometimes think those gauzy torsos may have harked back to the first time I lost my mother. I can't remember that time, but Mom told me about it several times. She obviously felt very guilty about it, but it wasn't her fault. I was eighteen months old--the height of separation anxiety--when I contracted a virus and became dehydrated due to diarrhea and vomiting.So sick and dehydrated, in fact, that I was placed in hospital nursery, quarantined from my family.

Mom said the door had a small window, and she would look in and wave and smile, and I would be hysterical. I climbed out of the bed several times until a net was put over my crib.  By the time I was released after three days, I wouldn't even go to my mother.  Instead, I went straight to her best friend, Mrs. Schutt.  I kept up this snub for several hours.

'Way back in 1969, John Bowlby described a child's sequential reactions to separation from the primary attachment figure. First is protest. That was me, screaming and escaping my crib. Second is despair. A child of eighteen months cannot understand that a separation is temporary, and probably seeing my mother through the window only intensified my feelings of having been tossed away. My mother's smiling and waving at me must have felt as if she were making fun of me in my misery. The last stage is detachment. When a child detaches from the parent, even for a short time, it's evidence of a fundamental break.



I can't help but wonder whether those gauzy torsos in the living room weren't memories of the nurses who had tended me. Losing my mother to cancer when I was 29 had triggered those feelings of losing her so many years before. Back in that nursery, with the net over my head, perhaps I couldn't see the nurses' heads. And perhaps they terrified me--who knows what might have happened back in those days if a nursery weren't monitored properly--but then they also proved to be caregivers, which is why my terror in the living room passed and I recognized the "spirits" as benevolent. It was the psychological break from my mother that had brought back those buried memories.

These types of events are a parasomnia known as Night Terrors. They are more frequent in children, but they do happen to adults as well.

Meanwhile, after those first two nights after Mom died, the border between sleep and wakefulness was shattered. For the next year or more, I regularly woke up in terror. And now it was not my mom or benevolent spirits visiting--these were men barging into my bedroom who were intent on raping and/or killing me.

And the weirdest thing was that I was seeing those men with my eyes wide open and with the same perception one has when wide awake. In other words, these were true hallucinations, not just "realistic" or even "lucid"* dreams. There simply was no difference between my perception in wakefulness and my perception when these men barged in. Talk about terrifying. After a few moments, I would realize I was in bed and my eyes were open and I'd woken up in the middle of a dream only to have it enacted in what seemed like true life. And each night it happened, it was just as terrifying until the realization came over me that, yes, it was another of those dreams.

This disturbance, no doubt, was due to my feeling of vulnerability--and my truly vulnerable brain's reaction thereto. My dad had died three years before, and now my mom was gone. I no longer felt safe. All that fear I'd felt as a tiny child came rushing back. I was as vulnerable as I'd been then, relying on nurses to care for me instead of my mother, who had inexplicably abandoned me. I was alone. And I was afraid.

And, sports fans, there's a name for this parasomnia:  it's called Hypnagogic Hallucinations. They are true hallucinations that hit people just as they're falling into REM sleep, and they have been happening since the written word began recording them. Hallucinations that occur when one is waking up are called Hypnopompic Hallucinations, and so far I've been spared them. Thank goodness for small favors.

The myth of the female Succubus and male Incubus is related to this very sleep disorder. These demons were said by medieval lore to pounce on a sleeper with the intent of doing them harm, usually sexually and by suffocation. For more on this connection, see "Incubus Attack" by John Cline, PhD, in Psychology Today.

The Nightmare [with Incubus] by Henry Fuseli, 1781

Myths aside, the actual cause, sleep scientists surmise, is that the sleeper stops breathing, and the body's sense of suffocation brings about the terror--and the mind concocts this evil that continues even after a person has "woken up." It all happens so fast.

I do stop breathing regularly while sleeping. That's what sleep apnea is, and why I now use a CPAP. I can remember waking from a bad dream when I was 16 or so. I'd just learned to drive, and in the dream my car got stuck on train tracks. The train hit and pushed the steering wheel into my chest, and I couldn't breathe. I woke up gasping for air.

Fortunately, the hideous hallucinations after my mom died stopped within a year or two, but I continued to have very disturbing dreams for a couple of years after that--almost hallucinogenic, but not quite. I'd wake up certain that the world knew a terrible secret about me, and everyone I knew was outside my window, shaming me. Oh, the agony. The shame of it.

Hmmmmm.  Outside the window.  Just as my mom was outside that little window in the nursery door, making me believe I'd done something very, very bad.

In the dreams after Mom died, the secret would be clear to me, but when I woke up I could never remember what the secret was. It was driving me slightly crazy that I couldn't remember such a vital secret about myself.  Finally, one night I put a tape recorder next to my pillow, determined to say what that secret was immediately upon waking up.

The next morning I played back the recording. In a zombie-like, hypnotized-sounding voice, I'd said, very slowly, "I know the truth now. There - is - no - hope."

The strange sound of my voice, and what I said, so freaked me out that I immediately erased the tape. Hearing it one time was enough. It gave me the creeps.

That was the horrible secret: "There is no hope."

Well, that's a cheerful note to ponder.

But I'm a  person who has always had hope--except perhaps during those three days quarantined in the nursery, and I still do. I hope this new sign of my degenerating brain doesn't mean I'm about to slip into senility. I hope my brain degeneration isn't speeding up, and these one or two episodes will won't be repeated for a long, long time.

Like I said, sleep is a fascinating thing. Had I to do things over, I would definitely be a neuroscientist. I have more in common with Amy Farrah Fowler (the Big Bang Theory character) than I care to admit! But it's a bit too late for going into that field, I'm afraid. I can record my experiences, though, and perhaps somehow contribute to the science that way.

I hope I have a long time when I have the wits to be able to record these strange happenings. And I hope I don't hurt myself, my Honey, or my dogs if I begin acting out my dreams instead of remaining paralyzed during them, as one with a "normal" brain would do.

I hope. I still hope. My secret was wrong. There is always hope.

Hope, after all, is the thing with feathers.

From Poetseers.org

And sleep, after all, is a magical mystery tour.

"Roll up!" and come along with me as I share my experiences in that mysterious place between sleep and wakefulness.

Tell me this album cover doesn't look like
a wild dream!

__________________________________

*Lucid dreaming is realizing you're in a dream while you're dreaming. I have also had this a few times. Most notable was when I was flying in a canyon and realized it was a dream. I was able to direct my body in acrobatics. I even sent myself straight down to the canyon floor and pulled up before hitting. It was fun. I was flying. I was dreaming, and I knew it, but that didn't make it any less fun.