***NOTICE. This is a memoir, which means everything written in it actually happened. To protect the innocent and foil the litigious, anyone who doesn’t know I’m writing this book has had their name changed. People who know are allowing me to use their real names, or maybe I have conspired with them to let them choose new, funky names. Either way, you as the reader aren’t going to know which is which, so…what’s in a name, anyway? That which we call a rose and all that.
Live or Die
It started with a tingle.
That sounds like it should be something good, right? Like, “I felt a tingle in my tummy before stepping onstage,” or “Our fingertips touched, and an electric tingle passed between us.” If you look it up online, Tingle is either an online dating app (the first and best smartphone-only dating service designed to connect and protect singles on the go,) or a thirty-five year old man obsessed with forest fairies. So if not something good, at least something benign.
For me, not so much.
When I was twenty-three years old, I woke up one morning with a tingle. My right arm and leg, my whole right side actually, felt like it had fallen asleep. Stretching and shaking it out did nothing to assuage these pricklies that had taken up residence under my skin, so I did what I had been doing for the past year and a half, which was going to work at my first teaching job. It was a very exciting first teaching job—high school English in South Lake Tahoe, California, with Beginning Acting tacked on—the cherry on top of the schedule sundae. I’d beat out a Stanford-educated ‘actually experienced’ teacher for the job, and although one of the reasons for that could have been because first-year teachers get paid the absolute least you are allowed to pay a teacher, I chose to believe it was because I was that good. Super noble, already expert at molding young minds, all that.
December of 1993 was already much better than December of 1992, which was going into the second half of my first year of my first teaching job. That year was hard. I had freshman English classes all day long, and it was the worst winter Tahoe’d seen in ten years to boot. I lived in an apartment next to the intersection of Highway 50 and the South Shore, called “The Y’, and the building had no garages or carports…just a wide expanse of parking lot onto which I’d trudge every morning to dig my little white Subaru out of a humongous snowdrift. Plus the lady who lived underneath me chain-smoked to loud soap operas all day, and the smoke seeped up through the floor and into my couch and my clothes, even my food. Air fresheners did me no good—I don’t think Febreze had been invented yet. I’m pretty sure The Young and the Restless was what played from three to four, because I watched that soap when I was in high school, and all the characters—Victor and Nikki, and whatever happened to Cricket? were still the same, so I could hear them screaming when I came home. I don’t know why it never occurred to me to ask her to turn it down. Or maybe it occurred to me constantly but I was too much of a wuss to do anything about it. That’s more likely. Nowadays I overcompensate for years of young wussiness by completely jumping the gun when it comes to asserting my rights and what I think should be happening right this instant.
I had a student that first year named Robert, who behaved SO much like your stereotypical freshman boy it was comical. He had a narrow fox face and eyebrows that jumped up and down when he said something sarcastic or judgmental, which he did…always. He thought he was being funny; maybe the eyebrow trick was supposed to be a Marx Brothers thing. Or a Beavis and Butthead thing—although that was also something that hadn’t been invented yet. I don’t know, he was very hard to take and I didn’t have the skills at this point to rein him in. I constantly tried, not to beat him at his own game but rather to keep some semblance of order in that class and not burst into tears. I did end up doing that during 1992, several times—bursting into tears. Not in front of Robert, mind you, but still. The first year of teaching is hard.
Anyway, this winter had been better, as it was the second half of the SECOND year of my first teaching job. I was engaged to be married to another teacher, and he was considered to be the handsomest and most mysterious teacher on campus. Plus he was older. I should mention here that I was just twenty-three and felt I was much more sophisticated and mature than I actually was. Much, much more. That’s why twenty three felt like a chapter of my life plan that should involve marriage, and children, and by God, why not do that with someone handsome, mysterious and older who was also a teacher? That way, we could take handsome, mysterious vacations during the summer.
If your brow is not furrowing in consternation right now, like, that is the opposite of maturity and sophistication, choosing to pursue marriage and who you will marry because you think it’s the time and he appeals to others and has long vacations, I am surprised. My brow is furrowing as I re-read that paragraph. You’ll hear more of that story later—I can see now how ludicrous the plan was, believe me. But in terms of it being part of a much better second year of teaching, there you have it: 1993 was shaping up nicely.
Until this morning, with the tingle. I swished the covers off and sat up, furiously rubbing my arm and leg. My right body felt—asleep. I used to have this recurring nightmare when I was little about Linda, the deaf Librarian from Sesame Street. Linda scared the crap out of me, I guess because little kids are so ignorant about things like deafness or blindness or developmental disabilities, or anything they don’t understand. I was also scared of pickles.
In this dream, Linda would be sitting in the middle of our living room holding a big cardboard box, and you know how you are required to do things in dreams? Well in this one my father, my sister and I had to run back and forth across the living room floor while Linda tried to catch us. She always caught me, and plunked me into the box, which did I mention was full of needles? Yes, box o’ needles for my nightmare, thank you very much, presided over by scary deaf lady.
So anyway, to make a short story very long, which is my forte, whenever I had that nightmare I would wake up with my leg all contorted or I’d be laying on top of my arm, and whatever appendage was compromised would be sound asleep. This is what my right side felt like right now—my Sesame Street Nightmare.
I also noticed as I rolled out of bed that I wasn’t seeing so well. I rubbed the sleep from my eyes and padded over to the bathroom to look in the mirror. I can’t really remember if my face was just blurry or if there were two of me. When I tell the story I usually describe it as ‘a blurry, double-vision type thing’, but I for sure couldn’t see normally. I didn’t call in sick from school right away, because I didn’t really feel sick, per se. Plus I was still a pretty new teacher and feeling the need to prove I really did deserve to beat out that Stanford guy. But after a day of stumbling around and being unable to see much about the papers I was trying to grade (Simile, huh? Adverbial phrase, what?), I figured I’d better go to the doctor.
What followed were months and months of tests. Tests for Lyme Disease, pregnancy (!) AIDS (!!) Lupus, ALS, and, of course, MS. Multiple Sclerosis. Many Scars, Mostly Stupefying, Mysterious Sickness, Malevolent Sinisterio (I just made that up—sounds like an Anti-Superhero).
At this time in the early 90’s, a definitive diagnosis for MS had yet to be found—it’s actually still pretty hard—but a Spinal Tap, along with a bevy of other determinants, was considered pretty firm. If you have never experienced a Spinal Tap, let me be the first to yell really loudly into your ear DON’T DO IT! This test involves a gigantic needle injected INTO THE BASE OF YOUR SPINAL CORD, right in that lower back where you feel every possible ache or pain. The ginormous needle takes cerebrospinal fluid from your spine and then tests it for some proteins that would be found in a person who has MS. I hear that the needle is not as huge these days, but the test still totally sucks. Plus there is this nifty side effect to the test called The Spinal Tap Headache, which at the time I was sure I had, but when I read about it now I think I just had a regular headache. due to a tendency toward both hypochondria and hyperbole.
Anyway, The Spinal Tap was negative and therefore unnecessary because Thank God the doctor didn’t think I had MS. I’d only had one memory around MS at this time, and that happened when I was very small. Aunt Adeline Tower was married to my mother’s Uncle Miles Tower, and she was diagnosed sometime in her 30’s. Uncle Miles had brought her on a big trip when she was in her 40’s, even though by that time she was in a wheelchair and, according to my mother, completely incapacitated, barely able to move her arms.
When they came through Grand Junction to see my grandmother and our family, I was about six or seven. My grandmother lived across the street from us (and my uncle lived next door—we had this peachy little neighborhood triangle), and we would of course have many meals and family picnics at all three houses. I remember being in my grandmother’s back yard and looking at this woman in a wheelchair; she had red hair and to me appeared frail, stooped and old, even though she was probably the same age I am right now. Jesus.
My six year old self was outspoken and bossy and curious, not unlike my forty-five year old self, so I asked my mother who the woman in the wheelchair was, and what was wrong with her. “That’s your Aunt Adeline, Honey,” my mother said. “She has Multiple Sclerosis.”
“What’s Multipull Skarrosis?” I wanted to know. “Does it kill you?”
And this is the part that stuck with me, words my mother swears she did not say but I know she did. “Unfortunately, no,” was her response. “It does all these horrible things to your body so you can’t do anything you used to do, but it doesn’t kill you.”
Aunt Adeline had become totally paralyzed and could move only her eyes by the time she died in her 60’s, so it sounds to me like MS really is what did her in, at least indirectly. But right then, at negative Spinal Tap time, all I could remember was that sad, stooped woman in my grandmother’s back yard who would have been better off dead than having MS, and the relief washed over me like a wave.
I still didn’t know what was wrong with me though, and was still half-numb and sight-impaired. My mother came to California from Colorado to read essays to me, and the testing continued, along with my angst. I know a lot of people, and I mean a lot, who live by the’ if-I-don’t-talk-about-or-think-about-or-do-anything-about-my-problem-maybe-it-will-go-away’ rule. I am not one of those people. I love to read, and have a long list of favorite genres dominated by horror and thriller. Plus there used to be a lot of movies, very scary and graphic, all oozing into an already—did I mention—hyperbolic and hypochondriachal psyche. Whatever was going on, my head had a gazillion oh-so-horrific explanations, and the speed at which these negative thoughts gestated and flourished grew exponentially worse by the day. I needed to know what was wrong, or it’d be my overactive brain that did me in.
Finally came Spring Break, April 1994. Rather than a trip to Cabo San Lucas or Hawaii or San Francisco, for Pete’s sake, I had to go back to Grand Junction and continue with the tests. I went to a very well-known neurological practice in the area, and the Doctor there did all these physical tests: he made me touch my finger to my nose, then to his finger, then back and forth quickly, finger, nose, finger, nose, fingernosefingernosefingernose. Didn’t do so great on this test—stabbed myself in the eye with my finger at least twice. I had to stand on one leg and then walk toe-to-heel like I was taking a sobriety test (remind me to tell a GREAT story about that later). I did not do so well on this test either, which had me almost in tears because my balance is GREAT, damnit. I was the Captain of the Pom-pon Squad in high school (now I think they just call it a Dance Squad or Dance Troupe). I choreographed all the dances and was very twinkle-toed if I do say so myself, and right then my toe and my heel would NOT line up right and I about fell over with the effort.
This particular doctor did not win any awards for bedside manner, so he brusquely informed me I was next going to take a test called an MRI, or Magnetic Resonance Imaging. They do this test nowadays for any ol’ thing, because it takes virtual slices of whatever is being imaged, and you can see all angles of whatever it is you’re looking for. My test was taking virtual slices of my brain, which is really cool and miraculous if you think about it—slices of my brain without even cutting a hair on my head? But I wasn’t thinking about it that way at the time, just that the doctor was not very helpful and I was very scared (feeling neither sophisticated nor mature) and didn’t know what to expect.
When they took me in to show me the machine, it looked like a big coffin. A gigantic white coffin, and they slide you right into it. The nurse asked me if I was claustrophobic, which I’m not, but the thought of being slid into a big ol’ coffin made me answer yes to the next question, which was do you want some Xanax? She gave me some Xanax and some earphones, because “the machine makes some noise while it does the imaging.”
Ha. The machine makes some noise, is the preface I was given. Saying the machine makes some noise is like saying teenagers make some texts. So I laid down on the cold plastic base of the coffin, and they sort of stuff some cushioned rolls down the sides of my body to keep me still. The earphones are on, and I’ve asked for heavy metal music, because I’m suspicious of the machine and the noisemaking. They tuck my head into a cradle and tuck some more cushioning in there too, again to keep me still, and roll me silently in. Then it starts. Not just some noise, and not something that’s loud and repetitive so you can get used to it. It is a complete cacophony of differing sounds, at varied volumes and styles.
First there’s a simple rat-tat-tat, like a woodpecker checking the grain, and then there’s a loud, frantic ratatattat, like a giant woodpecker on PCP. Then silence. I hold my breath and search for the lyric line in a Metallica song, and then comes the jackhammer. No kidding, I can envision some guy in a hard hat and dirty jeans right next to my earlobe, and the guy is in miniature (because he has to fit next to my ear), but the sound is massive. There’s also a weird harrumph harrumph, like a robot horse cantering across my skull, and then it’s back to the woodpecker and his mutant friend. The whole refrain is repeated several times as I lay there with my eyes closed, wishing I was in Cabo. Or San Francisco. Or anywhere my vision and physical sensations are normal. For Pete’s Sake.
* * *
A couple of days later, I was called back to the neurologist’s office for the results. Both my parents were with me, because that aforementioned sophistication and maturity (that we KNOW didn’t really exist anyway, I mean….come on.) had gone right out the window, and I needed my mommy and daddy to hold my hand. The not-so-friendly doctor put the films with my brain slices on a big white table underlit with fluorescence. Now, I’m sure it’s possible he spent some time (?) explaining what I was looking at, which was small white patches in varied points on the scan. But that’s not what I remember—all that information came later.
What I remember is the doctor pointing to the white patches, and saying, without preamble: “You have Multiple Sclerosis.”
Bam. There it was. Hadn’t I just wanted to know? Wasn’t that what I was asking for? No more tests, no more questioning, no more horror-movie explanations. “You have Multiple Sclerosis,” and there’s Aunt Adeline, filtered through my six-year-old brain, crippled, hunched, and hardly able to move: a nearly dead old woman who was actually young.
I think we just left the doctor’s office at that point, like, let’s get home and try to assimilate the news before figuring out what comes next. I remember the building had these big glass double doors, and as my father pushed them open, he was crying. Not sobbing, breath hitching snotnose type of crying (as is my specialty), but tears rolling quietly down his cheeks. Now you will find out a lot about my father throughout the course of this book, a wonderful, irreverent, intelligent man whom I miss every day. But right now you only need to know one thing: this was the only time before or since I ever saw him cry.
* * *
We went home after that, and I spent the remainder of the vacation in a state of fear and depression. I know I said I wanted more than anything to just find out what was wrong with me, but that was kind of a lie. Now that I knew, my ever-fruitful and hyphochondriachal imagination was on fire. Was I going to go blind? Would I be in a wheelchair? I kept picturing my Aunt Adeline, and I had heard all about Annette Funciello while I was going through those six months of tests: the famous Dancing Mouseketeer Who Now Couldn’t Even Walk. Forget about my Pom Pon Glory Days of twinkle-toedom, was I going to be able to teach again? My fledgling career had barely fallen from the nest. I was desolate, and I wanted to die.
I called my mysterious and handsome fiancé and gave him the out. I told him I personally didn’t know how I would react if I was hit with news that my significant other could potentially be crippled in the next five or ten years, or maybe go blind or deaf or just basically be out of commission long before it was time, and that I would completely understand if he wanted to call off the wedding. He told me to just keep on addressing those invitations, which I thought was so noble. I ended up going through with this wedding, even though I was fast figuring out the flaws in my original plan, because of his reaction to my MS news. And also because I was worried that, because I had MS, no one else would ever want to marry me.
The diagnosis threw my whole family into a tailspin, my father especially. He always felt like the world’s luckiest individual, and indeed his occasional lottery ticket purchase or football game oracle-ing always bore fruit. I am the same way—I win caller #10 on the radio or raffle ticket door prizes like I’m telekinetic and controlling the outcome with my mind. This kind of news doesn’t happen to people like us, and I could see him turning the information over and over in his head, like how could this be happening? No way is she that unlucky. I felt that way too, and that made the ‘No Fair’ fairy throwing tantrums over my left shoulder that much louder and more strident. I had never really lost anything before, no unexpected deaths in my family or huge losses on the sports field (did I mention I danced?) or on life’s field. I kept looking at my hands, and they looked like someone else’s hands and suddenly I was living someone else’s life. I wanted to curl up in a ball and die, I was so scared.
I can see you rubbing your thumb and forefinger together, with those tiny violins playing “My Heart Bleeds For You.” I know, I know how great my life was. I know into every life a little rain must fall and it’s always darkest before the dawn. How ‘bout every cloud has a silver lining blah blah blah and believe me I can spout clichés with the best of them. But that was the whole problem—I felt like it was karma that this was happening to me now—I’d had it too good before and now it was time to pay the proverbial piper. Perpetually.
I was staying in my old bedroom at my parent’s house. A huge, second-floor room that my sister and I had shared growing up. My parents built the house, and the original design called for us each to have our own rooms, but my folks had decided it’d be better for our sibling bond to have one big shared space. I had to laugh now and touch the tall bookshelf in the middle as I walked to my side and crashed like a fallen tree. My sister and I, of course, had divided it up in our own way anyway.
I laid in my old twin bed and stared out the window, despondent. I noticed this bluebird out on a tree branch, and I swore he was looking at me. I think it was a blue jay, actually, but whatever. Definitely blue. It had been there before and I’m not sure why it continued to grab my attention—where we lived had a plethora of wildlife, including deer coming up to the yard at breakfast time.
My mother encouraged me to go out and try walking around the block to clear my head. The numbness and blurry double vision thing had cleared up and I found out this was expected. With MS you can apparently get waylaid by any sort of symptom at any given time, WHAM, no warning and no mercy: the blurry double vision numbing nightmare was just the beginning. Anything controlled by your Central Nervous System can be affected by this disease, and for those of us who haven’t really thought about systems beyond our haircare systems (lather, rinse, repeat) since high school Science class, pretty much everything is controlled by this one. Vision, hearing, walking, talking, pooping, peeing, thinking, for Pete’s Sake--all the important ing words are controlled by the CNS (that’s called a gerund, by the way, when ING verbs are used as nouns. It took me five years of teaching English before I really understood this.) All these really important THINGS were now at the mercy of this shitty disease. It was overwhelming me more by the minute.
So, walk around the block, fine, fine, whatever. I went down the stairs and proceeded to grudgingly get some exercise. Mr. Bluebird (Jay) still sat in the tree, but when I came outside and started walking around the block, he jumped down to the ground and walked with me. It was bizarre. He obviously didn’t need to walk to stay in my vicinity, because he was a bird and all. But he did, he strolled right around the block next to me, black eye staring over out the side of his head. He did the same thing for the next two days, and when I felt good enough to drive to the grocery store, he hopped along from tree to tree until I turned left onto the highway and waved goodbye. Crazy, supernatural, penetrative-stare-felt-like-he-was-talking-right-to-me-bluebird (jay). I couldn’t get over it.
Now, I am not religious. I had a religious education growing up, church, church camp, vacation bible school, all that, for which I am profoundly grateful. Having as much knowledge as possible regarding…well, anything I can learn about, has always made me feel stronger in my ability to make decisions, hold up my end of the conversation, impress the boys, what have you. I had a fascinating family situation to learn from outright: my mother is Methodist, my father was an excommunicated Mormon Atheist, and my aunt and uncle are Buddhists. All I’m missing is a cousin somewhere changing his name and converting to Islam.
My parents took me to church always with the explanation that I should learn under their tutelage while young so I could make my own decision in this regard when the time came. In college my favorite class of all time was World Religions, held on Wednesday nights for three hours and taught by the fabulous Larry Meredith. Dr. Meredith is a former Methodist Minister and is all about knowing everything about everything. Back to the three hours, Wednesday nights. Now, Wednesday nights were dollar drinks at the Catfish Café, and still we went to class and listened, enrapt, to this man talking about every permutation of religion. He was funny and fascinating and memorable, and I went through a period of interest in Buddhism, Wicca and even Zoroastrianism because of what I was learning in Dr. Meredith’s class. When all was said and done none fit me personally, but I still love learning about religion and why it fits so many people, and much of this awareness is due directly to Dr. Meredith.
So my decision after all this education was not to be religious, and my younger sister’s choice, who had the exact same upbringing and choices was to be very religious. Isn’t that interesting? I’ve heard from enough people in my life about their children or their siblings having such different reactions to the same stimuli, that I would believe in genetics even if it hadn’t been proved yet.
Anyway, this bird. I don’t know what it was. Right now I’m leaning toward a simple explanation: it was the exact thing I needed at that moment to see more clearly, which might be God in your world and which is a positive universal energy in mine. But it made me think: I didn’t want to die so much as I wanted to figure out how to live with this mind-blowing and frightening new world into which I’d just been thrust, like a newborn into the cold bright air, kicking and wailing and shocked, but alive with the bright uncertain future of it all.
* * *
This book is called The A or B Principle, and although at the time of my MS Diagnosis, I wasn’t thinking in terms of this two-choice model, in retrospect it is clear. I’ve known other people dealing with this diagnosis who’ve retreated into despair and self-pity and victimhood, and it’s made the course of their disease so much worse. At the time of this writing it’s been over twenty years since that mean ‘ol doctor (I got a new doctor right after that) so harshly announced “You have Multiple Sclerosis”. My Choice A was to live, and I’m so glad I dumped that Choice B back into the ether the minute that bluebird (jay) reminded me I could.
One of Two Choices
The A or B Principle: How Chronic Illness, Infertility, and Life's General Chaos Taught Me it All Boils Down to