arrow24 Comments
  1. Betsy
    Nov 16 - 1:38 pm


    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.

  2. Sarah L
    Nov 16 - 1:44 pm

    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.


  3. S Martin
    Nov 16 - 1:49 pm

    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.

  4. Cort Johnson
    Nov 16 - 2:06 pm

    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.

    • Galia Shapiro
      Nov 16 - 2:12 pm

      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

    • Carol
      Nov 18 - 8:54 am

      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.

  5. Jen
    Nov 16 - 2:13 pm

    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

  6. Michele
    Nov 16 - 4:10 pm

    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

  7. Christian Godbout
    Nov 16 - 6:08 pm

    “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!

    • Dawn
      Nov 18 - 11:34 am

      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.

      • Christian Godbout
        Nov 18 - 2:00 pm

        Thanks Dawn. Same to you.

  8. Pam
    Nov 16 - 7:03 pm

    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…..

    • Cort Johnson
      Nov 17 - 3:10 pm

      Glad you’re found a way to a meaningful and good life Pam even in the midst of this…

  9. Darlene
    Nov 16 - 8:07 pm

    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.

  10. Dawn
    Nov 16 - 10:54 pm

    And……… 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…… 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 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.

  11. Kat Harris
    Nov 17 - 5:58 am

    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…. :)

    • Dawn
      Nov 18 - 11:17 am

      And here I thought my riding days were over…
      Thanks for the analogy Kat. I think I will saddle up!

  12. Carol
    Nov 18 - 9:02 am

    Thanks to everyone for your articulate and supportive responses.

  13. Chris
    Nov 18 - 3:08 pm

    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.

    • Carol Lefelt
      Nov 19 - 4:57 pm

      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.

  14. Anne
    Nov 19 - 1:56 pm

    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.

  15. Catherine
    Nov 19 - 2:39 pm

    Carol, thank you for sharing your story. And it’s good to know that someone else has dreams about being a ‘ghost’ at work!

  16. Enid
    Nov 20 - 12:04 pm

    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.

  17. Faye
    Dec 21 - 9:43 pm

    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.

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