23 and ME

May the depths you have reached hold you still – John O’Donohue

Twenty-three years ago today, I woke up with a sore throat. I went to work, and within a few hours I had a high fever and could barely walk. I had suddenly become incurable.

I had planned a longer, more poignant post to mark this anniversary, as I have in previous years. I thought I might take another victory lap, and make a cake.

But the truth is, I am too heartsick. The years pile on, and my life spools out behind me. I look forward, and I see more of the same.

Twenty-three years ago today, I became incurable. An unknown number of doors slammed shut. Yes, others opened, and I have even kicked a few down. But the fact remains.

You want the truth? Twenty-three years ago today, I became incurable, and I am sick to death of talking about it.

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43 Responses to 23 and ME

  1. Tina says:

    Oh Jennie, my heart aches for you. It aches for all of us. I am also too sick to be a “door kicker” or much of anything else, but I am grateful that there are still some around who are.

    You do serve a purpose. Your writings do reach people. Every word of your short and painful post spoke to me and through me and I am crying as I am allowing myself this moment to release some of my sorrow at all that I have lost and all that I continue to lose. And not just me, but for every soul that is experiencing the same thing.

    The loss, the loneliness, the invisibility, the gaslighting. Sometimes you have to give yourself a moment to let it wash over you.

    Thank you for sharing your vulnerability.

    Tina

    • Jennie Spotila says:

      Tina, thank you for this. I really needed the reminder that it is ok to just let this wash over me. It is both wonderful and heartbreaking that I am not alone in this.

  2. Debbie Gunter says:

    My heart goes out to you. I recognise so well the way you describe how you experience time: the past, the future… I have had this illness for 40 year, with two 18 month remissions along the way. The stark despair of not participating in life, from the age of 21 – and now, still an “outsider” with a peculiarly solitary “normal” – I know. That you chose a John O’Donohue quote is synchronistic for me. Hang in there, fellow traveller along this strangely amorphous existential path, in which so much has to be relinquished.

  3. Mary says:

    Dear Jennie
    I am so sorry you feel heartsick. I have felt very low recently too. I tried to do such a little bit more and go to a neighbours house warming lunch for a short while. I haven’t felt good since then until this morning. When I woke I felt a veil slide away and I was more ‘together’.
    Anniversaries are so hard aren’t they? I have been ill for 19 years. My anniversary is 04 August.
    I so enjoy your posts – in all and any frame of mind I find I reach out to you – as you do to us.
    Did you read John Pavlovitz’s blog after the Las Vegas shooting. He was heartsick too, and couldn’t write and pretend he wasn’t. I am glad you told us how you feel today. That helps me to say if I don’t feel well.
    Love, Mary (England)

  4. Joanne says:

    You are still a force of strength for others as we pool our energy to make a difference.

  5. Jenni says:

    Thanks for your honesty. There’s something comforting in knowing that we aren’t the only ones; It’s been 15 years for me. I helps me to know I’m not alone. I made these images several years ago as I wrestled with the depth of loss this illness has brought.
    https://jenniwhite.com/self-portraits/

  6. Nita Thatcher says:

    I hear your frustration, anger, loneliness, and pain crying out from my own soul. Trying to keep the best parts of ourselves safe while the vessel that holds those parts trembles and cracks with this illness. So many of us are ‘at an age’ that a treatment, let alone a cure, likely will not be found in time. (I’m 68 and sick for 42 years) However while we still breathe, we can still love others, and as has always been true, love is the most valuable thing any human being can give to the world. Those who are close to us cannot imagine what they will do if they lose us and they long for that love to continue. You write your articles and you fight as an advocate, you LOVE all of us you touch and we feel that love. You are still needed in this world. We all are still vitally important. Happy Sickaversary Jennie!

  7. Pris Campbell says:

    You are so important in your advocacy of this illness. You’re important to me. I just had my 27th anniversary with it, i see my friends doing things I want to do and somtines it just gets so darn hard. Hugs.

  8. LJ says:

    Thinking of you today in a special way. I love you and admire you and your courage. πŸ˜πŸ‘β€οΈ

  9. My 23-year sickaversary is October 24 this year! Where were you livimg?

    I am going through a similar funk about this disease. I have lost Ampligen – signed the contract, paid the money, but they came out and locked the glass-doored refrigerator months ago, and we can SEE it but we can’t GET it. I’m tired of not saying that on internet.

    So I am relapsing. You forget what it is like. That is, I had the words, I knew in my head what it was like. But you forget what it FEELS like. And how little you can do. First time I have been sick without a caregiver (first time since Bob’s death).

    You have my sympathies, Jen, I know just how you feel. Forgive the language, but it sucks.

    • Annette says:

      Dear Jen,
      It is heartbreaking to think of the years that have gone by since you and so many others became sick with ME. As for our family, we are still waging the battle, and have been, since 1988. I hope that it brings you comfort to know that there are doctors who report that they have found more effective treatments for their patients. Progress is slow but it is happening.
      Thank you for caring enough to share your thoughts and feelings. I know that your blog connects with so many others who are encouraged by your writings.
      With warm regards,
      Annette

      Dear Mary,
      I am so sorry to hear that Ampligen has been taken away from you. It is difficult to find treatments that can take its place but it is not impossible. Please do not give up trying to find your way back. There is hope in the number of groups that are trying to unravel this disease as quickly as possible.
      Sincerely,
      Annette

    • Jennie Spotila says:

      Hi Mary! I was in Philadelphia, and I know you were in Delaware. Isn’t that weird?

      • jimells says:

        This is just too weird to be true. I got food poisoning, which seems to have been the trigger, in 2003 – while living in Philadelphia.

    • Nancy Rauhofer says:

      My 23 year sickaversary is October 24, 1994…same as yours Mary! I live in New York and had just returned from a long weekend in Quebec on that fateful day. My heart goes out to you for the loss of your dear Bob. Thank you Jen and Mary for all you have done for our community these past 23 years. Those years have not been wasted…stay strong!!!!

  10. Rebecca says:

    Dear Jennie–I hardly know what to say in response to your words, except to say that I’m here, as I’ve been just about every day since stumbling upon your blog many years ago, and I hear you loud and clear. I know your beautiful spirit as revealed in Travels with Swatchy, and I know your wisdom and compassion. These are the characteristics I value most highly in you, even as you have provided such powerful advocacy to the ME/CFS community. These are the traits that, I imagine, are most evident to those who love you and who you love. These are qualities this disease can’t steal from you. You can only give them away, and they will multiply.

    I feel so fortunate that I was almost 50 when I got this damned disease. I had had time to make and execute life choices that pleased and satisfied me; I was not required to give up youthful things or to forego life choices like you and other younger people have been forced to. But I have felt like a spectator in my own life for the past 27+ years, and that awareness has only increased as I age. So now I find myself living mostly for love and curiosity: love for my darling husband, nephews and nieces, and curiosity to see how the coming generation will turn out, and how they will manage their world.

    There’s a certain calmness and opening I’ve felt since finally concluding that no treatment or cure will happen in my lifetime. I feel free to put down my banners and my pen and spend my time loving myself and others as powerfully as I can, to cultivate generosity and peacemaking as my premier tasks. And, really, I just no longer have energy to engage the politics, after a lifetime of that sphere being the most important to me. I must leave it to others now.

    I hope your tomorrow will shine more brightly.

    • Jennie Spotila says:

      Rebecca!!! <3 I can't believe you remember Travels with Swatchy. That feels like eons ago! Your comment moved me deeply, and I also read it to my husband. Thank you so very much. Your beautiful words were a comfort to us both. Just as you are grateful that you did not get sick until 50, I am glad that I was 26. I had traveled a little, been to graduate school, and met my husband. I had an adult identity as a healthy person, and that has helped me cope with being sick.

  11. Cindy Downey says:

    Dear Jennie,
    I am so sorry for your pain. As one who has had ME for 32 years, I look as you do, at the years to come, and the years behind, and think, will there ever be better days – no stigma, no cruelty, finally caring, treatments and a cure.

    Please know you give us hope, courage and insight with your determined work for all of us. You show us who is responsible for all this suffering with no help. But for now, please just rest, and be.
    Take care.

    • Jennie Spotila says:

      Someone commented to me privately that I tell people who to be mad at and why! That’s not really my goal, but it’s definitely an outcome of what I do.

  12. Mark Peterson says:

    HI Jennie,

    I hear you and as Bill Clinton would say I feel your pain!!!

    It has been and continues to be a very steep up hill climb. I am sorry that you have to travel this way with us.

    It is an honor to know you and am amazed at all that you have accomplished for yourself and all of us with this damn frustrating illness.

    I hope that you will take your victory lap, enjoy each day with its limitations as the gift that it is and continue your battle with the powers that be.

    Warm wishes,

    Mark Petersson

    • Jennie Spotila says:

      Mark, so lovely to hear from you! I hope things are as well as possible with you. It feels like a very long time ago that we served on the board together. And yes, I will do my best to enjoy each day. That’s the only way to truly live with this disease.

  13. Tracy DeCroce says:

    Well said, Jennie.
    You are a force with few words or many.
    Thank you for all you do for our community.
    Your column is a mainstay for me, as I’m sure it is for many of us.
    So many people rely on and have benefited from your advocacy and your intelligence.
    Be good to yourself today.
    You deserve the best.

  14. steve hawkins says:

    Happy sickiversery Jenni! {{ }}

    I don’t know what it is that keeps us going, but it must be worth it, because the science and even medical world are beginning to sit up and take notice. And you can take quite a lot of the credit for that. (y) (y) (y)

    Hope the blues doesn’t bog you down for long.
    <3

    SteveH
    England

    • Jennie Spotila says:

      It’s more weariness than the blues. I haven’t lost any of the fire I feel to make things better for the people who have been sick for less time than me. Even if I am incurable, I don’t believe that will be true for all of us.

  15. Betsy says:

    Jennie,

    Please know how appreciated you are – thank you so much for all you do. Debbie, your words “amorphous existential path” is right on.

  16. Susana says:

    I cannot concentrate to write, but πŸ’•πŸ’•πŸ’•

  17. Jule says:

    Please know that finding your blog let me know that I wasn’t alone in this wretched disease. You gave me the courage to keep asking questions and be an active voice in the community in a small way. I appreciate everything you do and are.

    You are still here.
    We are all still here.

    • Jennie Spotila says:

      Jule, thank you so much! We are still here, and I am so glad that I have given you some courage. We need that courage every day. xoxo

  18. Anne O says:

    Dear Jennie,

    At a loss for words.

    I feel your pain, which is also my pain (though “only” 16 years here). I feel the unjustice. It needn’t have been this way, if people in decision making positions had acted differently. If biomedical ME research had been funded, if agencies had made different choices, we had at least had a shot at getting a life again.

    How to find the strength to go on? How to find the strength to go on with advocacy?

    I feel myself getting closer to the verge of giving up, at least with respect to the latter.

    As you say, the years pile on.

    You are a force and a light in all of this. Thank you for all that you are doing.

    Sending you all my love,
    Anne

    • Jennie Spotila says:

      Anne, my friend. I know you understand. And I have to say that on the worst days, when I just want to give up on advocacy, I think to myself, “don’t let them win.” And that gives me courage for another day. We can’t let the injustice of this stand. It’s just a line that I cannot cross. So the strength comes from somewhere, and everywhere.

  19. Lynn says:

    Jennie,

    My heart hurts for you. We all support you. πŸ’—

  20. In the first week of November it will 28 years, ditto, for me.

    I hear you.

    I ignore what I can, live with the rest. I rarely want to talk about it.

  21. I know so well how you feel, Jennie.
    I can’t put a date on it, a slow or unidentified onset but at least 37 years. I am grateful that at the age of 86 I can look back on those years, and also – that I was unable to see forward.
    Now much better than during that first unimaginable 14 years I’m thankful for having a safe home and supportive family.
    Venturing out in our chemicalised world remains an ongoing problem; a family wedding this year an unexpected perfume induced disaster.
    Thank you for the advocacy which you and others have and still are achieving, it is special that the M.E. web enables even those of us ‘down under’ to stay in touch.

  22. Pat Radcliff says:

    Thank you for your honesty. Thank you for your advocating for all of us.
    Thank you for your spirit. Thank you for your love.
    You have made all of us feel less alone. Thank you.
    You have given us strength in bringing us together. Thank you.
    I wish I could give you something back…to help lessen your pain.
    Gentle hugs, gratitude and lots of love to you.

    • Jennie Spotila says:

      You gave me something back with this lovely comment! I’m actually going to print it out for my bulletin board. That probably sounds very high school, but I put inspirational things on that board so that when I sit at my desk I can look up and get a quick hit of strength. Thank you.

  23. Hey, Jennie, I used to count the years after I first got ill, I am not sure when I stopped counting. Been ill thirty-five years. In September 1982, I was living in France as part of my university degree, not yet nineteen years old, when Coxsackie b4 felled me, which later triggered ME. I will never forget the catastrophe of this illness punching into my life for as long as I live. Take good care, NASIMx

  24. Carol Head says:

    The saying goes that joy shared is doubled and grief shared is halved. Your grief, for the vision of the life you would have had, is shared. And even if it is halved, it can so very difficult to bear. We are with you. We fight for you, just as you fight for yourself.

    Love, Carol

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