21

October 6, 2015 was my 21st “sickaversary.” I know the date because the onset of ME/CFS in my case was so sudden and dramatic.

Not a single doctor told me that I could be sick for years. Not a single doctor, as the years passed, said this might be permanent. Not until I had been sick for five years. Then, and only then, was I told that where I was at five years was likely to be where I would stay. The phrase “if you are lucky” went unspoken.

But I never believed this could happen. I never imagined being in my forties, still unable to work or to live independently. In 1994, I never would have said or imagined or even feared that I could still be sick twenty-one years later.

In the past I have marked my sickaversaries with tears, testimony to the CFS Advisory Committee, and prayer. And hitting 21 years in 2015, which has been the absolute hardest year of my life, has basically sucked in almost every way. So for this year’s sickaversary?

I MADE A CAKE.

IMG_4722

My mother died in January. She was one of my best friends. But I am still here.

ME/CFS took my career, my independence, my dreams. But I am still here.

My husband had a stroke that could have killed him, and he is still out of work. But I am still here.

Two people I love had surgery this year. Others lost loved ones to cancer, disease, or old age. But I am still here.

I have spent the last twenty-one years suffering from a disease that almost no one cares about, that has no treatment, that leaves patients to suffer and die early deaths in isolation from a world that has forgotten about them and moved on. But I am still here.

In 2015, I have cried more tears than in the rest of my life combined. There have been days when I knew I could not take any more bad news or suffering, and then I did. There have been days when I breathed more out of habit than desire. But I am still here.

I have rested and found comfort in the arms of my loved ones and my faith. I have found strength deep in the marrow of my bones when I thought I was sucked dry of life and hope and endurance. I have continued. And I am still here.

So this 21st anniversary of the day my life changed irrevocably forever in ways I never would have chosen or foreseen? This day was not a sad day.

It was a fucking victory lap.

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49 Responses to 21

  1. LJ says:

    That’s my girl! She’s the strongest woman I know and I am so proud of her!❤️

  2. Diane says:

    Yeah! for Jennie

  3. Flora says:

    This week is my 24th anniversary.

    Damn.

  4. Denise says:

    Welcome back.

    Glad you ARE still here!

  5. Sally says:

    Jennie – what can I say?

    Tears for you – despite knowing that tears were not the purpose of this post.
    Tears for me – because I am so comparatively “young” in this illness.
    Tears for all of us – because even if our cure comes tomorrow, there will have been so many years lost to the tardiness of governments.

    I love your cake.
    You are still here, and despite being physically weak, you are strong of heart.
    Sending love across the cyber waves, and wishing you a better incoming year.
    xx

  6. Chris Heppner says:

    Hurrah! It is great that you are still here–you have been missed. And here’s to your still being here for a long, long time–hopefully until long past the day when things get resolved and we can join the ranks of those with diseases that are recognized and can actually be treated, thanks largely to the work of people like you. From a junior mere 8 year old.

  7. Tillie Clapp says:

    I totally get your emotions. My daughter, in her thirties, is also afflicted with this disease, as well as the frustration of ignorance remaining among those still uninformed in the medical community.

  8. Annette says:

    Your story of perseverance is inspiring! That is why we are still here trying to find the answers that we all need to end this disease. We cannot give up because it is hard or because there are people in the world who don’t believe or even care. I care and so do millions of others, who are sick and are still waiting, hoping that someone will find real answers to end their suffering. Keep celebrating that you are still here and sharing your story! It gives others the strength they need to get through another day.

  9. Jane Pannell says:

    I am SO glad you are still here, Jennie, and SO grateful for all you do. Enjoy that cake.
    Jane

  10. Diane says:

    25. And I am still here. And I stand (or more like lay in my bed fr a distance?!) next to you, Jennie.

  11. Diane says:

    29. And I am still here. And I stand (or more like lay in my bed fr a distance) next to you, Jennie.

  12. Thank you for that, Jennie. I am so sorry you’ve had a bad year.

    I’ll have to remember that chant on October 24, which is MY 21st Sickaversary!

    You are still here, and so am I.

  13. marcie myers says:

    Tell it!!! Good to see you back. marcie

  14. Roy says:

    Good for you, Jennie.

    There’s a line from the original movie True Grit that I’ve always liked. John Wayne is trying to rescue Kim Darby and complains that now that he needs Glen Campbell’s help he is dead. Just then Glen Campbell appears and says “I ain’t dead yet!”.

    I got sick 45 years ago this month. I ain’t dead yet. 🙂

  15. Holly says:

    A big high five for your victory lap and lots of hugs for your difficult year.

  16. Kristy says:

    To still be here after all you have undergone, to fight as hard as you do, to advocate for all of us, these things and many more are worth many victory laps. October 6th also marked my “sickaversary”. Ten years for me. I remember it well because I got sick while volunteering in Louisina after Hurricane Katrina. Mine too was a dramatic and sudden illness. But I too am still here. Still fighting, still hoping, still living, still dreaming. Here is to the victory laps. May there be many more. Someday maybe even ones that involve a cure. My thoughts are with you as you continue your journey. Thank you for all you do.

    • Jennie Spotila says:

      You are the second person today to tell me they got sick on October 6th! It never ceases to amaze me the threads of commonality that connect us.

      • Jennie Spotila says:

        AND we’re both quilters! Amazing.

        • Kristy says:

          That is amazing! So many commonalities in our CFS community. Threads that connect us. We are not alone although at times this illness is very lonely. I learned to quilt after I got sick. I had never sewn before. It is my therapy. A bright light in the darkness of this illness.

  17. Maureen M. says:

    Thanks for sharing your amazing resilience with us. It is an inspiration. All the best to you and to your husband. Hope he is making a good recovery. And yes, that chant … I am still here!! Looks excellent on a cake!!

  18. Janine says:

    It’s comforting to know that…

    You are still here
    I am still here
    We are ALL still here

  19. Sabrina Brown says:

    Jennie, I am so sorry for all your years of illness and pain, your missed opportunities. And I am so glad and grateful that you are still here, writing your beautiful, eloquent, sensitive blog which helps me remember that all of us are valuable souls; that sometime in the indefinite future, people will reflect on this time when no one knew how to treat our disease and marvel at the courage you’ve shown, living with illness while working to increase awareness and funding of ME/CFS. You are truly amazing — Thank you!

  20. You must be the strongest woman that I’ve ever had the pleasure of “meeting.” Except for my daughter. With love, Carol

  21. Amy says:

    Congratulations. You aren’t only here – you’re making a difference. I remember, around 12 years ago now, a doctor saying to me, “You might take as long as five years to recover,” and thinking, “If I’m not better before five years, I’m not sure I’ll want to be alive.” I haven’t recovered; I’m still learning to accept this; and I do still want to be alive – and thanks for reminding me that there is something to celebrate. Any excuse for cake!

  22. Elisabeth says:

    Hi Jennie, you are a gifted and powerful writer. So much so that after I read this piece I ran to my blog to see if I had you added…I did not have your site. So I am so happy I found it and added it to my massive blogroll. I hope others will visit your site and gain the inspiration I did tonight! The power of the pen! Take Care, Elisabeth

  23. Sasha says:

    Happy sickaversary, Jennie! Sorry this year has sucked so very, very badly. You’ve had an awful time. I hope this next year will be a better one for you.

    My sickaversary (nearly thirty years) is coming up next month and know that if I looked in my diary for that year I’d see the dinner party I had to cancel because I was suddenly coming down with something and was too ill to cook. That was it – game over, right there. I’d rather not know the exact date!

  24. Debbie says:

    Jenny, this was exactly what I needed to read after a horrific, early-morning, self-pity session. I needed a perspective adjustment. I’m only ten years in. I’ve got a lot of catching up to do!! =)
    Happy sickarversary!
    Thank you so much for sharing your strength.
    Sending infinite lots of virtual hugs.

  25. Suze_Dee says:

    I am roughly on my 33 year sickaversary – it was a day in October 1982 that my life changed. I salute your victory lap by waving my “wobbly leg stick” in the air. There have been ups and many downs but I am still here. I would rather be here than not, I need to still be in the lives of my son, my husband and my family and friends that are still here for me. I would rather be here well (of course) but whilst I still have love in me to share then I’ll take what ever comes my way – maybe not with grace and dignity (kicking, screaming and whining!) but I still want to be here. Love to you and yours and wishing you as well as you can be. Xx

    • Jennie Spotila says:

      Beautifully wonderfully said: “whilst I still have love in me to share.” A thousand times, yes.

  26. Elle says:

    Jennie, I have such admiration for you, and for the other commenters on this post who are fighting and surviving. I am just past two years. I read your blog all the time and I’m so sorry for the loss of your mum, and grateful to have your advocacy. Congratulations on today, on making it through. You’re an inspiration.

    • Jennie Spotila says:

      Thank you. I won’t tell you it gets easier, although in some ways it did for me. It’s more like trying to stay upright despite the storms.

  27. Susanne says:

    Yep know what you mean. The first week in July is always a bit rough for me as yet another year passes, 19 this year… The cake is fabulous, I’m inspired to have a “21st” in 2017.

  28. Kathryn Stephens says:

    May I have a slice of that cake? I’m still here, too. If I count the year I got sick and never got well, I’m at number 28, but I totally crashed and burned on Oct 8, so that’s 27 years.

    Until I got active and ran a support group, I had no idea of our number; that group grew and grew so fast and furiously (if you can call us fast in any rational way), we all burned out and the group is defunct.

    I love your passion. I feel sure that is the secret to why we are still here: a flame burns inside you for justice that cannot be extinguished. I appreciate that, and I have found my sickaversary date to be an impetus to just keep on living, and I’m so content that I found my passion of reading and posting research and advocacy efforts like yours.

    I’m so sorry for the loss of your mother, but know the love she has for you will keep her in your courageous spirit. Mine, too, passed when I was in my 11th year of CFS, and of course I miss her loving support of me, as I know you do, too.

    I’ll make the cake next year, ok? Many hugs, Jennie!

  29. Hollie Howard-Martin says:

    Thank you for writing this. It’s a testimonial for those of us who can’t. I’m at 16 years, but I’m still here! Thoughts and Prayers! HMM

  30. Melissa says:

    I’m SO glad you’re still here, Jennie!! If I lived a little closer, I would come over and dig into that cake with you! I hit the big 21 this year too.

  31. I love this so much. My heart goes out to you and my heart is emboldened by you. Yes we can. ?

  32. Kathy D. says:

    Yes, great cake. Congratulations for getting through these 21 years with such determination and fortitude, blogging away and advocating for the ME/CFS community and for just getting through each day.

    I’m also coming up on the 30th year of my sick-a-versry in November. I can’t quite believe it but it is so.

    Also, wanted to mention to you a major article in the Washington Post last week about Whitney Defoe, a 31-year-old man who is totally disabled from this disease and lives with his parents. His father, Ron Davis, is a scientist at Stanford and is aiming to carry out research to find causes and biomarkers. He has three Nobel Laureates lined up to help and is fundraising for research.

    Then there was a good article in The Atlantic.

    So research and news stories go on even if there is no help from HHR and NIH.

    Best wishes for you and your spouse.

  33. Sara ( sarika Narula-Patel) says:

    Your story and determination inspires me. I’m also in my forties and never thought I would be here eith ME/CFS. My very healthy husband had a stroke last year. He is only 44! I still cry though for the loss of my career, strength of my husband and most of all the lost ability to spend time with my son like a healthy mom should! Your determination is inspiring… ” I am still here”..,

    • Jennie Spotila says:

      Oh Sara, I am sorry. I can honestly say I understand some of what you’re going through. I hope your husband can continue in his recovery, and that you have strong support around you.

  34. Lisa Myers says:

    Bravo, Jennie! This was so heartbreakingly, beautifully written and it has resonated with me for days. I never realized we had so much in common. For me, it’s been 20 years. My husband also had a stroke, which unfortunately our marriage did not survive. My mom, too–also one of my closest friends–died this year. And two dear friends are currently battling breast cancer. But I too am still here. And I, for one, continue to be inspired by your stellar writing and advocacy work as well as your heart and your courage. So thank God you are still here. And I am so grateful that you share your story.

    • Jennie Spotila says:

      I wish we did not share so much heartbreak in common, but I’m glad you told me! We’re still here!!!!!! The only way I can get through it is to stomp on it and declare that I still have power, even if I don’t have control.

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