We humans define ourselves in terms of what we can DO. With CFS you have an existential crisis, cause you think, “If I can’t DO, who or what AM I?”
Chris B
I walk to the wooden cubbies in my school’s front office to pick up my mail. Usually my box is stuffed with notices, pamphlets, messages from the guidance department, invoices, catalogues, book samples – so much stuff that there’s an overflow box for the Humanities Department on the floor. But I can’t find my name. It goes from Lassiter to Meyers. There’s no Lefelt.
What’s going on? I’ve been working in this high school for 25 years, checking my mailbox every single day. Good morning, I say to the other teachers crowding the office.
They smile vaguely, surprised to see me there. I approach Edie, the secretary I’ve known forever. I can’t find my name, I tell her. I’ve looked and re-looked. She flashes her warm smile but doesn’t answer. Then I remember that I haven’t been receiving my salary checks for a long time. She explains that she’s called the business manager and superintendent many times, but no one seems to know anything.
I try to see the principal, but his office is empty. I stand bewildered. Lost.
I wake up from this recurring dream, feeling like one of the “disappeared” in Argentina, where so many victims of the military junta vanished without a trace. Who am I?
I’d been part of this school community for my whole professional life. I’d taught every course in the English Department: all levels of 9th and 10th grade English; electives like Lively Arts, Poetry, Modern Novel and Satire back in the 70’s and 80’s; most recently Creative Writing and Advanced Placement English. I’d become the writing guru.
One year, when Highland Park decided to move the 7th grade from the middle school building into the high school building, parents rebelled and insisted they’d only agree to the switch if I were the 7th grade English teacher. I was flattered but furious; I wanted to teach upperclassmen, not the little middle school pishers with their raging hormones and concrete thinking and I cried when the principal, who had the right of assignment, gave me the news.
Then I actually came to adore this group of kids, many of whom I taught in grades 7, 9, 11 and 12. I still communicate with some of them. Thank you, Facebook.
I had a reputation in the community for being hard but effective. Some students loved me; some hated me. A sophomore, Kerrianne, tormented me daily with her refusal to do anything in class but curse at me. But Nancy bragged to her mother about how she loved Romeo and Juliet and knew all the dirty jokes because she had Mrs. Lefelt for English. Many wrote me letters from college thanking me for teaching them to write and to love reading.
I advised Dead Center, the literary magazine, which won all kinds of awards, including the much-coveted “Superior” rating from the National Council of Teachers of English. We met evenings in my basement and I baked chocolate chip banana muffins with wheat germ which the staff ate and teased me about the next day in school (she made us healthy muffins!). I started a student-run writing center named a “Center of Excellence” by NCTE. I trained these students during the day in a course I originated and developed called “Writing and Responding.”
The year I retired, the student-editors of the literary magazine wrote the following dedication:
Magic:
A seeping auratic something with a sense of roughness, the airtight realization that this is now. Ours is a magazine dedicated to magic, to spirit,to Carol Lefelt.
Small, wry, poised, Mrs. Lefelt is tough, almost electric. Alive.
Her gift is the appreciation of a single moment. She has a reverent voice, a majestic voice, a wistful, calming voice. She has a wicked sense of humor, rocking the classroom, subtle, ironic, furious. She knows freedom. She taught individuality.
Though she retired this year, since 1974 Mrs. Lefelt has shocked us into honesty, challenged us with creativity, and inspired us with passion. We emerged from her class with a shining sense of wonder. She taught us rhetoric, style, voice; she demanded purpose. She reveled in freshness of language and originality of thought. Just when we thought we were finished, she’d take her pencil, go through line by line, tightening. We complained, we rewrote, we developed respect for the craft.
Mrs. Lefelt loves poetry, but she owns the memoir. Emotions, narrative, truth in fiction: we sketched our lives, she helped us ink them. In the same way, armed with little more than a word processor and rubber cement, Mrs. Lefelt both revitalized and revolutionized Dead Center during her seven years as advisor. Her editions emphasized the grittiness of the writing and the virility of the art.
Our magazine, textured by memory, echoes Mrs. Lefelt’s respect for the real. . .
Overwritten? Well, surely. But I was good.
I’d feel warm, comfortable. I fit in. I belonged. I had a career. I had a mailbox with my name on it.
I saw parents all over town. In the supermarket and the beauty parlor and the B-B-Big convenience store, people stopped me and asked, “Aren’t you Mrs. Lefelt? My daughter talks about your class all the time!” Steve, the Superior Court Judge, became better known as Mrs. Lefelt’s husband in the homes of Highland Park. I’d taught some of his law clerks. “Are you related to Mrs. Lefelt?” they’d ask him.
I miss dreadfully the sea of eager and intelligent faces I stood before each day. I miss the hilarity, the warmth, the excitement, the probing of a good class; the creativity and honesty of good student writing; the crafting of engaging and challenging lessons; the more personal and private discussions during individual conferences.
In 1990 I became Supervisor of Humanities, which included, at various times, English, Social Studies, Art, Vocal Music, Instrumental Music and the drama program. I didn’t like being a supervisor; I preferred teaching kids rather than hassling with colleagues, but I felt stuck inside the regimented 8 period day, with the same classes in the same order, and I was burning out from all the student writing I took home to respond to and all the lesson planning, so I welcomed the chance to vary my days and focus on something different.
I taught two classes (the highlight of my day), and the rest of the time visited other teachers’ classrooms, wrote observations and evaluations, conducted teacher conferences and department meetings, ordered books and supplies, attended “leadership team” meetings, met with the curriculum coordinator, and led workshops and in-service programs.
Many times I entered the front office where some stranger sat waiting for something: maybe a job interview or a meeting with an administrator to demonstrate a new software package to enhance scheduling or record keeping. I’d known everyone else in that room for years. Unlike this outsider, I was a part of things, an important part. I’d feel warm, comfortable. I fit in. I belonged. I had a career. I had a mailbox with my name on it.
The Flu Shot
At 55 years old, I just faded away.
Then came the cold January morning, the broken heating system, the day off, and the flu shot.
When I finally couldn’t struggle to continue working anymore, I rolled around in my sickbed in fear and panic. Fear and panic from this unnamed illness but also from suddenly being no one, nothing, severed from all my routines, from the people I’d related to every day for 25 years, from the connections I’d made. Who was I now?
Like Macbeth’s rival Macduff, “from his mother’s womb untimely ripped,” I’d been untimely ripped from my life.
My colleagues, ready to start new phases of their lives, celebrated their retirements with special evening dinner parties and lots of hoopla. I was too sick for that. At 55 years old, I just faded away.
I forced myself to attend an after-school farewell party. The Superintendent had assured me I wouldn’t have to stay long, and so I searched my closet for something to wear, since I had lost enough weight that everything looked baggy. Feeling scrawny and wobbly, I walked into the high school cafeteria to enthusiastic greetings from many colleagues but didn’t have the strength to get around to everyone.
After the preliminary chatting and cake-eating, came the speeches. Hey, wait. I didn’t know that I’d be sharing the spotlight with the math teacher who had just died from cancer. Ohmygod. One long detailed eulogy from the superintendent. Then another from her husband. Then from her department colleagues. Not only was I longing for my bed, but I began to feel like the afternoon’s marginalized anti-climax as everyone remembered Letty Bachenheimer‘s long struggle, her determination, her love of teaching.
After all the sniffing back of tears, the Superintendent turned to me. She made a sweet and flattering speech, as did Steve Heisler, my colleague, friend and around-the-block neighbor. They presented me with a few retirement gifts, and then waited for me to say something. Speech? I had to talk?
I have no memory of what I babbled but I know that I failed to thank people for their kindnesses, especially the ones who had taught my classes for the semesters I had been missing. After a 25 year career, I blew the final minutes with some impromptu drivel that glossed over my very real and complicated feelings. For all the years since that afternoon, I’ve regretted that I hadn’t thought to prepare something. There’s a lot I should have said, but at the time, I was so uncomfortable and ill I just wanted to go home. I was in lockdown.
Today
I drive by the school building now and feel little connection. There’s my parking spot; here are the windows of the classrooms in which I taught; that’s the door to the hallway of what used to be the English wing where kids would hide to smoke a joint in the 70’s. I’ve gone inside a few times to see drama productions. There’s the front office; there’s the drinking fountain, the nurse’s office; over there’s the pencil drawing of Bill Donahue, the principal who was murdered by his former student who was also his daughter’s boyfriend in ’87.
But that was in a former life that I can barely conjure on these pages, a sequence of days and weeks and years that added up to something meaningful but now distant and indistinct.
For years the opening of school in September brought an especially powerful depression. But I’ve mellowed with time, and I’m grateful to no longer feel such deep September sorrow and estrangement.
I am also grateful that I actually had a fulfilling career for so many years, unlike many whose disease started when they were too young to have established themselves. I’ve watched videos of youngsters like Jessica (“The World of One Room” !), Sazra (“The M.E. Diaries”), Claire, and Ben. CFS/ME so tragically trapped, restricted and isolated them when they were teenagers. Imagine the profundity of their loss.
Because I worked for 25 years, I also have great health insurance from the state of New Jersey in addition to Medicare, along with a pension. How amazing is that?! Again, so many sufferers younger than me do not have these benefits.
I try to remind myself of this “luck” in my darkest moments of self-pity. Sometimes it helps.
Carol,
The dedication the students wrote to you shows what a great teacher you were. I am amazed at that level of writing coming from high school students. They were all so fortunate to have had you for a teacher as long as they did. I think everyone feels a disconnection from something after they’ve been away from it for so long. Thanks so much for telling your story.
Carol Lefelt,
Your long career left you with a fantastic skill for telling your story. That is a big thing.
I learned technical writing for a technical career, which sort of writing is pretty near useless for conveying my own story. It is useful for being careful and knowing grammar, syntax, that is all. What I once did with writing has gone away with the cognitive problems.
Your strong enjoyment of your career, and the sense of a person in the right career, you convey that so warmly and so strongly.
Having the ability to retire with full health care, that is something huge, you are right.
I know, it is better to retire at your chosen age, and be healthy, but we do not get to choose that.
Thanks for sharing your touching story.
Sarah
Hi Carol,
Thank you for telling your story. I too had to leave my teaching career of decades.Took me a long time to get over that loss. Like you I am grateful it struck me in mid-life, and I was able to raise my daughters and have a fulfilling career before CFS arrived.
Wishing you the best.
I can tell where I was and what I thought was ahead of me.
I was an environmental sciences student at the Univ of Calif, Santa Cruz – I was athletic, and a superb student. I was disciplined and interested, and surrounded by interesting people, and I had found my dream field…
I was going to spend my life understanding, experiencing and protecting the outdoors. I was going to travel many places, have many interesting experiences…I was going to test myself in all sorts of ways….I was going to climb mountains and kayak streams….I was going to spend months in the backwoods…
.and then over the course of a semester almost all of it, unbelievably and probably irrevocably disappeared…
I still love nature with a passion and I’ve had many interesting experiences and I’ve definitely been tested! Just in different ways that I could have imagined..
That was 34 years ago…it’s kind of unbelievable that its been that long…
Without my families support I would have been utterly destitute. I was very, very lucky to have them…Of course, pension, 401K’s, significant social security….that never happened.
Carol…Thank you for sharing your story so that we know we are not alone.
Ram Dass says it’s “All Grist for the Mill”.
…On a good day- it IS! and I AM (We Are!!!!!)
Holiday blessings to you, Galia
Wow, it’s 34 years after all those ambitions and dreams. With your family’s support and your own determination and spirit and talent, however, you’ve made such a difference in so many of our lives. Thank you.
its sad.
thats wat CFS is.
Sadly outsiders have no idea of the loss of function one suffers, or the mental anguish this brings.
The emptiness of life – regardless of your commitment to be positive and battle on.
All the best Carol. x
Thank you Carol for articulating the loss, grief and confusion that is so familiar to each of us living with this wretched illness. May you find the inner strength to help you through each day with a little lightness and gratitude. Keep on writing – you’ve helped a bunch of us today. Blessings to you XX
“But that was a former life…” How this simple bit of sentence coins the drama Carol…
Having had a “former life”, now gone. Mine ended 13 years ago and I still can’t get over it. And I bet when it will be 34 years, Cort, I still will have moments telling myself “This can’t be happening, this can’t be true…it can’t be all gone, I had so much in me”
At 20, I was an utterly passionate student in a music school, but then a sudden tendinitis abruptly put an end to it all, and I literally went from 6 hours of piano a day to zero in two days. Lost it all. The love of my life. It was devastating.
But …I got over that. It took me roughly 10 years, I had meanwhile found a new meaning to my life in an intellectual domaine – like you Carol – I gave seminars, and wrote a lot also. And then … I “came down”, mid-summer 2000. Lost it all again.
This time, I can’t get over it. There is something about the nature of loss implied with this illness which makes mourning so complicated. Mourning generally allows you to move on… But in this case, as written above, “what now?”… Life in a full sense hardly resumes.
I find it big of you Carol to finish your story by humbling your own drama before those who had it worse.
And for all those who had the chance to have a well filled “former life”, you remind us that there should be some form of consolation in “remembrance of things past”.
I’m trying to get there…But honestly I sill can’t!
Christian
How hard for you to lose your passions twice! Thanks for your story.
I believe I understand your difficulty with getting over it the second time. Rebuilding is hard work. And sometimes it is hard to find something to rebuild TO. After horses, I chose dog agility. HA! After that short chapter closed, I chose gardening. Slow gardening…….lol. I volunteer a little at a local thrift store for my social feel-good needs. I am a little afraid of my limited choices to rebuild to next, as my muscles, joints, and energy continue to decline.
Some days I content myself with getting THROUGH it, and forget getting over it.
Strength to you Christian.
Dawn
Thanks Dawn. Same to you.
I too was a teacher when I was struck with CFS. I was 36 years old, had a husband and two children, one in second grade and one in fourth grade. I became ill with mono and it is as if it never went away. At first they believed I had Lyme disease but that was not the case. I was thrilled because there are treatments for Lyme. Fortunately for me, over 22 years of battling this horrific illness I have improved enough to have a meaningful life with my wonderful family. I still must rest more than I would ever want to and it comes back and rears it’s ugly head, sometimes when I least expect it, but life is good, life is better than I ever thought it could be in this situation. I relate so very much to Carol’s story that my tears flow as I read it. I too no longer cry or feel great sadness on the first day of school and it seems like it was a lifetime ago. My husband is a retired teacher. He taught for 35 years which was extremely hard for me in the beginning. Now we have a lovely life but I just finished a 2 week relapse that was incredibly hard and painful.
Thank you, Carol for sharing your story…..
Glad you’re found a way to a meaningful and good life Pam even in the midst of this…
Thank you all for sharing your stories. As heartrending and familiar as they are, they bring me comfort and hope. Ironic that. But look at you go!!
When I first got sick, in those nightmarish few years pre-diagnosis, I came to terms with my own mortality. One of the reasons I was OK with the fact that I might be dying (because it felt like my life force was being sucked away in spite of what all the tests said), was that I had lived my life to the fullest up until that point. It had been a great ride. That was much easier to do than it was to come to terms with the fact that I might NOT be dying and would have to live like this. Sometimes I feel sort of like a ghost haunting my house, watching my family grow and get on with their lives. Sigh…..Well, on we go though. Ups and downs. Thanks for sharing them both.
And………..here I am once again wishing I HAD lived life as well and as fully as some of you who “lived life to the fullest” before the “struggle”.
Unfortunately, i am one who made some very poor choices in early years. Teen pregnancy, an alcoholic partner, 13 years of just surviving as either a single mom or in an abusive relationship. It was just before I was getting free of that relationship that I noticed something was not right with my health, in my early 30s.
Not to say I didnt have some brilliant years later…….two beautiful daughters, living my passion with horses, becoming a coach, kids riding camps, etc.
And now I am in my 50s, fortunate enough to have a supportive second marriage, so I am thankfully not so alone in my struggle. I too feel blessed and thankful that I was able to raise my daughters with energy, even though our life situation could have definitely been better. But giving up horses and riding……..so hard. And feeling I am a burden – NOT easy. And not having energy to be a superGrandma for my 6 grandchildren – disappointing to say the least.
I try to become someone without regret, for I know it is not the best choice. It is working some days..lol. Other days, not so much.
Blessing to those caught up in this struggle; young and old, those in the beginning of the struggle, and those who have walked the path for many years, those who “lived life to the fullest”, and those like me, who have many regrets.
Regardless of your life before CFS/ME, it is NOT a journey for the faint-hearted.
Strength to you all.
As another who “was called” into teaching for 25 years, and then, with little warning “yanked out” by ME/CFS, I KNOW exactly where you have been Carole…
….the reflection, the introspective thinking, the examination of the current circumstances…..the eventual feelings of depression due to fatigue, pain, and seemingly a lack of purpose.
But as YOU HAVE, and many of us know too, we must “ride it out”… And I DO mean ride until you think you can’t ride anymore… And then settle into that saddle and continue, what may be, the forever ride.
Equipped with the proper “tack”, both feet in the stirrups… hands on the reins….
and eyes forward…..taking charge of that beast below us…..showing who’s master.
With time we’ll be maintaining a comfortable gait with eventual stops and restarts, but we’ll actually begin to enjoy the blue sky and the grounds below the hooves of our, now, new companion.
We’ll actually let go of the tension on the reins and maybe sing a tune now and again or even, as YOU have Carol, begin “counting new Blessings”……as “Living in the Moment.”
Thank you for sharing a bit of your life experiences. You’ve been an encouragement to me and, no doubt, countless others 🙂 YOU are my #1 Blessing today…. Cort is #2…. Health Rising #3…. My ME/CFS Friends #4….. This Moment #5…. 🙂
And here I thought my riding days were over…..lol.
Thanks for the analogy Kat. I think I will saddle up!
Thanks to everyone for your articulate and supportive responses.
I can certainly relate to former career dreams. I was taken away from the project I was running and deeply, personally invested in. It felt like a once-in-a-lifetime opportunity, and I knew I had to seriously broaden my horizons more outside of work once it was over in about a year. Well, they were broadened, all right, just not on my schedule. I’d actually been overworked and overworked myself for years without really appreciating the toll.
I have nightmares that my boss threw me off the program for incompetence and someone else finished it totally differently. I was around long enough to know that was far from the truth; but with this disease many dreams are an exaggeration or twist of reality.
I’d be a poster child for the late Dr. Reeves because, without much doubt, I feel being assaulted on the job as well as overwork set me up. But I was also in a hanger on a military base near farmland, potentially exposed to God knows what. I had traveled abroad the year prior, and may well have been vaccinated, but by now the base would have no records.
It’s a peculiar way for the body to break (or at least used to be); even in TBI vets, you seldom see a picture quite like what we present. I may never know what Agent X is.
To “be,” and not to “do,” is especially hard to learn in American society, especially if you don’t have family and friends close by. In the early going I was worked up at a hospital cross-country on the “family’s” recommendation—the same “family” who refused to help me move back, and still don’t understand my condition or want me back. My closest friends were fellow college grads, and once that circle split up, that 29 years of my life seems like someone else’s entirely. At least I had those good times, though.
I’m so sorry to hear about all your losses at a young age. Lack of a supportive family makes coping even more difficult. Those job-related dreams are such teasers — mostly nightmares that result in anxiety and sadness but at least for those few minutes we have a life.
I too was a teacher and had such a hard time finding meaning when I could no longer work. I was just starting out & had finally gotten a salaried, full-time position when I got sick in my late 20s. It took me about 10 years to be at peace with the fact that I couldn’t teach or work anymore.
Carol, thank you for sharing your story. And it’s good to know that someone else has dreams about being a ‘ghost’ at work!
I think the answer is we do not define ourselves by what we do – ” I am” despite very little doing – I do recall when very ill observing all the doers about me (including a psycho) with considerable disdain and for some reason more able rationally than they. Of course passing out from time to time this was not possible.
I’m so glad I found this. Just knowing there are other people out there facing this struggle every day. I’m 23 and have been I’ll since I was 15. I feel like my life ended before it really had a chance to begin. I keep fighting, I keep trying, but everything fails. I can’t study, I can’t work, I don’t know what I’m supposed to do with my so-called life. I’m reaching my breaking point. I’m so damned tired and tired of it all.