February 22, 2024

Posted bydaydreamer23Posted inUncategorizedTags:, , , , , , , ,

“I was supposed to be having the time of my life.” – Sylvia Plath

I turn 25 tomorrow.

It’s a milestone birthday of sorts, I guess. A quarter of a century. Something I would have considered monumental and exciting – a call for celebration. But instead of it being a joyful, celebratory day, it now just feels like an unintentional, cruel reminder of how my being has been eclipsed by something indescribable to those who have never experienced it.

Aging, without getting to experience each age, is a uniquely bizarre experience. I do think you get frozen at the age you become sick or disabled – at least in my case, I did. I feel like a perpetual teenager. I’ve never felt like I properly entered my 20’s. I somehow got stuck and never actually got to grow up. The numbers just change. I look in the mirror and I don’t see someone who’s about to turn 25. I still see a teenager, just with sunken eyes and hollow cheeks and muscles that have wasted away. And it’s not that I don’t recognize myself, though the physical changes have been disturbing; it’s just that I see a version of myself that I thought would have gotten to grow up by now.

I used to look forward to my birthdays – I was a celebratory person. Even the little things, I found worthy of celebration. As a child, I would trample through our yard, searching for dandelions to make wishes on them, and when I was with my friends, I would call out that it was 11:11 and for everyone to make a wish. I’d toss pennies into fountains and if we were lucky enough to catch a glimpse of one on a clear night, my friends and I would make wishes on shooting stars.

Now, my only wish is that my birthday passes without too much pain and despair. An unremarkable day, even. But I know myself, and my birthday has gained something of a monstrous weight. Grief is heavy, and I’m not strong like I used to be. Grieving the loss of your life while you’re still alive is possibly the most bizarre thing I’ve experienced. I still haven’t quite found a way to verbalize it. It’s become my second skin, a ritual I perform everyday, and I am still so taken aback by it.

I was supposed to be having the kind of experiences they make movies about, the kind of experiences that my friends share with me, the kind of experiences my parents reminisce about. Instead, I see a man in his 70’s pass by my window one day, cycling on his bike, sailing down the sidewalk with such ease and fluidity that it’s foreign to me. I turn away. The last time I was physically able to ride a bike, my age ended in “teen.”

It is hard to see your friends’ lives move on and watch their worlds expand while yours moves in the opposite direction. My friends are living on their own, traveling to new cities, exploring new states, moving up in their careers, and doing the things we talked about as teenagers – and I’m thrilled for them. But I’m more dependent on my parents now than I ever have been before. And it’s hard to find celebration in that.

I never get to experience anything in its full capacity anymore. Everything I do has to be modified in some way. I don’t even know if I’ll be able to sit up properly while my parents light candles and sing me their rendition of “happy birthday.” I imagine we’ll celebrate my birthday in my room as we do everything else. I don’t exist beyond these walls.

I had plans. I wanted to do something meaningful with my life, to have done something extraordinary by now. Or at least, I would have hoped that I would have gotten started on it. I had big, ridiculous dreams for myself and enough of an unbroken spirit to think it was all possible. But that was in the “before” period of my life, if there even was one.

I know my birthday will pass as it always does, as it has for quite some time now – painfully and somewhat callously. But as I blow out my candles, I will wish for the pain to fade to something more of an ache, and I will try to suffocate the feeling that time is slipping through my clenched hands and that it has, successfully, taken another year from me.

Published by daydreamer23

Gone through a little more in life than I probably should have at this point.

79 thoughts on “February 22, 2024”

  1. Thank you for your words, although raw and unfettered, they are honest, and honesty is always healthy in my opinion. Although it’s a double edged sword, I’m relieved that my daughter has never known a different life from the one she’s been trapped in since birth. It sounds so difficult for you. I’m pleased you have a loving family who will try to give you a good birthday. I hope you can still enjoy your day. You still add value to the world, even just through your words. I wish you as pain-free a day and life as possible.

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  2. beautiful words for a hugely unfair illness that you must endure. Sending you love and hope for a better future on your birthday. May the pain subside. Thinking of you today. 🎂💖🫂

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    1. Beautiful, insight filled words – like the finest sculpture. I am in that same world and know what you know and experience the same. Thank you for making such a massive effort to speak for us. Happy birthday.

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      1. Thank you so much 💜 And I am so sorry you know what this is like. Thank you for taking the time to read it.

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  3. Happy Birthday, Sylvia – your story really touched me. I am also young and disabled with many of the same conditions as you, have been in your shoes, and have felt many of the same feelings as you. I guess I can say I am one of the lucky ones, as I regained some of my functions back (severe back to moderate). It is a struggle every single day, especially when you feel your worst to even appreciate existing. The only thing we can do is find strength in solidarity whenever we feel well enough. We do not know each other, but please know that my heart is with you and you are not alone.

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    1. Thank you so much 💙 I am so sorry to hear you have experienced the same. It’s an incredibly difficult life to lead. Solidarity 🫂

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  4. You write beautifully, with dignity and a voice beyond your years. Don’t give up, treatment will come and one day your experiences will give you a unique insight to perhaps make a real difference to other people’s lives in the future. Sending you very big birthday wishes, whilst tinged with sadness it’s also a milestone, you are still fighting and you are not alone

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  6. You’ve shared a window into your experience that so many can’t even imagine, and you’ve done it with such beautiful and raw writing. It’s so important for people to understand how deeply this illness affects every part of people’s lives. I’m so sorry you’re going through this and relate to it a lot. I hope your day has little pain as possible and that you are able to enjoy moments of every day. Mostly I hope that with your next birthday you are in less pain and closer to a better quality of life. Happy birthday and thinking of you x

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    1. Thank you so much – that is so generous of you to say. 💜 I’m sorry that you can relate to what this is like. 🫂

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  7. 💕🌸Sending best wishes and love to you for your Birthday! 💕🌸Thanks for sharing with us. 🤞🤞🤞I’m crossing my fingers that someday there is a cure and you can be well again. 🫂🌸

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    1. Thank you, I appreciate that tremendously. I am so sorry your daughter is in the same situation. Please let her know that I am thinking of her & am with her in solidarity. 🫂

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  11. I can relate. I got sick at 29 and now my body is in its 30’s, I can see the changes. I’m wiser, but emotionally, part of my brain is still stuck somewhere else. Locked away from the world. You beautifully articulated what so many people feel.

    I hope you had an acceptable birthday and that things get easier.

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    2. I’m so sorry that you can relate. 🫂 I’m with you in solidarity. I hope there will be a better future for all of us. Thank you for taking the time to read what I wrote 💙

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  12. Thank you for sharing your experience and putting words to the grief that comes with losing parts of ourselves, our present and our future. I hope that your birthday is the best it can be and that you have joy and comfort today.

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  13. February is also my sickaversary,the moment where I non-celebrate meeting a virus that changed the course of my life *not for the better*…

    This year’s easier to get through yet since I seeem to be on the mend, going from moderate with burst of severe to a firm light state. I haven’t identified a clear and determined cause to this much welcomed inprovement besides “getting more sun” ( been looking at the sun evey morning religiously and getting my -deepply restorative- sleep back) so here’s a cheap idea to try when the days will be brighter ?

    Right now just wanted to say I’ve hated all my birthdays but still love life, and love being a human under the sun so that’s reason enough for being content for today and go on for a little while still.

    Wishing you all the best, that is a slightly better than average nightmarish day (followed by a wonderful night).

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    1. Thank you for your birthday wishes!
      I’m so sorry you can understand what this is like. I hope you continue to only experience improvements. 💙

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  14. You write beautifully . I have just discovered you and hope to read more . I want to tell you to have hope as there is change in the air . I feel it . There are more people working on ME/CFS than ever before . Have as beautiful a birthday as you can dear one

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  18. happy birthday!
    my daughter will be 28 in a couple weeks, but just as you described, she feels stuck at 16. She dreads each birthday as it represents another year lost, another year living with her family, another year in isolation with no friends.
    she is no longer bed bound and manages working 20 hours per week at a bookstore. But when she’s off, she’s exhausted. Because she needs medical care for her issues, almost everything she earns goes to outrageously high insurance premiums. Working part time does not qualify for benefits.
    like you, she had big dreams, and a big talent for acting and singing. She’s also a brilliant writer and analyst, but can’t find any job to utilize those skills. She did manage to graduate college but struggles with depression and anxiety and suicidal ideation.
    we’ve found a new doctor and may start over with tests and diagnoses — we took a break after 10 years, existing in the “maintenance” stage. It’s true there is more attention paid to dysautonomia, me/cfs, eds, etc, but unless you know someone living with it, you can’t understand how tough it is.

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    1. Thank you – and happy early birthday to your daughter! I’m so sorry to hear about what she has also gone through. It is so incredibly difficult to live with these illnesses. 💔

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  19. Happy birthday! I hope your day was a better day for you

    You write beautifully and have perfectly captured what other patients, including my son, say about the magnitude of the loss that ME has wrought in their lives.

    I know the effort it took to write this. Thank you for writing and sharing it. The world needs to hear what this is like

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    1. Thank you so much. I’m so sorry to hear your son is also suffering. Thank you for taking the time to read what I wrote. 💙

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  20. you have tremendous writing skills. Thanks for making the very large effort to express yourself. My son has mecfs and it’s always helpful to hear a fully formed essay to better understand what he feels like. Wishing you better days and medical breakthroughs.

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    1. Thank you – that is so kind of you. 💙 And I’m so sorry to hear about your son. It’s a tremendously difficult illness to live with.

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  21. “Aging, without getting to experience each age” is so well articulated, you’ve really put into words the despair of feeling like birthdays just mark time getting away from you instead of a celebration ❤ Happy birthday to you and I have hope for your future; may next year be better, or if not that, perhaps the one after. At least for now you still have your beautiful mind and a talent for expressing the difficult to describe, well done.

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  22. Sharp writing, with deep insight. Although your suffering is clearly, and quite understandably, difficult to bear, you have an undeniable talent for words, and that is something to nurture and cherish. Best wishes.

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  23. Keep writing about yourself because you have a lot of talent, I’m sure you will find through that a sense of purpose for the experience you are going through

    HAPPY BIRTHDAY 😘

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  24. This post is an exceptional achievement and something to celebrate on your birthday. You may not be living the life you dreamed of, but you are bright, intelligent and insightful beyond words. And you have accomplished something to be really proud of in this piece of writing on your birthday. 

    This is one of the best things I have ever read about aging with ME/CFS and I have written about this topic a lot myself and think about it a lot too. I feel the same way you do, only I got sick in my 20’s. I still feel like I’m 25 because I have not lived through the things people live through when they reach 40 like I just did. 

    You have touched me today and made me feel understood and also made me see this more clearly and I’m sure you have touched hundreds more people. 

    I hope you keep writing when you can, even if it is slow. You have a gift to share with the world in writing. The world needs to hear your beautiful voice. ❤️

    Love,

    Whitney Dafoe

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    1. Thank you so much, Whitney. I hope you know how much this means to me coming from you.

      I am so sorry that you have also experienced so much suffering in your life. I have immense respect for you, and I am so touched by what you wrote.

      Your words were a gift to read. Thank you again, for not only reading what I wrote, but for writing what you did. ❤️

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  26. Thank you for sharing. It is a learning curve for those of us who do not know what these illnesses mean to those who have them. May your next trip around the sun bring advances in medical science for illnesses such as yours

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  28. I wish you a happy birthday, someday… But for now I mostly wish it was a calm day. One that allowed for some rest and recovery. Reading this I can almost literally feel the heavy weight of this milestone, and it’s all too relatable. You helped me connect to my own grief for a moment, and I needed that, so thank you so much for sharing. If your writing contributes to understanding, connection and relating, the way it does for me, I’d say that’s meaningful, extraordinary even! Wishing you well from accross the Atlantic. Best, Sebastiaan

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    1. Thank you so much, Sebastiaan! That is so kind of you to say. I like to think we are all connected in some way.
      I am so sorry for what you are going through as well. I hope you have better days ahead.

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  29. Thank you for sharing this heartfelt and courageous piece. I’m sad to hear so many of your dreams are out of reach but excited to see your hope of doing something meaningful and extraordinary with your life is happening right here! Your talented voice will carry you far outside those walls. Wishing you a beautiful 25th birthday from Canada. 

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    1. Thank you for the birthday wishes & for taking the time to read it. 💜 And thank you so much for your kind comment – I appreciate what you said tremendously.

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  30. Happy Birthday. Never give up hope. Keep an eye on the sky, watch for those shooting stars. Smarter people than I are in this fight. Today, enjoy your time with family and with a little luck, this year will bring better news. All the best wishes.

    J

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  31. Your writing is beautiful and meaningful. It is certainly “something extraordinary.”

    Wishing with all my heart for a cure for you, and sending love on your birthday.

    From a stranger deeply touched by your words.

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    1. Thank you so much. That is incredibly thoughtful of you to say, and I sincerely appreciate the time you took to read what I wrote.

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  32. I’m wishing you a Happy Birthday…or at least a tolerable one. And someday, perhaps, a much-improved baseline that allows you to live more of the life you are missing. Never give up hope, and try your best to let a little joy in here and there. Sometimes people do improve. Perhaps this year will bring answers for treatment. I wish for you better health, happier times and new and interesting things to write about. You have a real talent I hope you nurture. 

    Laura Bone’

    Clayton, California

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  34. Thank you for sharing with us. I just read about you on bluesky’s feed (you know this is ealry twitter-like). I live in Japan. Your beautiful words hopped across the ocean 🙂

    Belated happy birthday. Wish your everything get better.

    N

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  36. Thanks for using the energy to share, it is important for more people to understand what chronic illness is, and does. My wife is 73, 10+ years along the ME/ road, the past 5 mostly bed/couch bound. She describes it as existing, not living. Yet she doesn’t give up, continuously researches what others have done to escape the prison. Hope is a huge component, she relies on people like Raelan Agle on Youtube for that. There is lots of recent research, meanwhile things like polyvagel theory help. It’s trial and error, so many paths into the condition, just as many paths out. Keep trying, you’ll make it.
    -Steven

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    1. Thank you, Steven. I am so sorry to hear that your wife is also suffering. Please let her know I’m thinking of her. I hope there will be a better future for all of us. 💙

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  37. Thank you for writing such a profound, heartfelt and heartbreaking piece. My son just turned 20 and is severe. You made us feel less alone. We appreciate it so much and are thinking of you. 

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    1. Thank you so much for taking the time to read it, and for your kind words. 💜

      Happy belated birthday to your son – I am so sorry to hear that he is also suffering. 💔 Please let him know that I’m thinking of him as well.

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