Damaged…

The thing about chronic illness is that it never goes away. Ever. It is always there. When it is not dominating your life it is just below the surface; you dare not forget about it for a moment lest it take you by surprise. You have to be always prepared, aware of every detail of your life, your actions, your surroundings, guarding against anything that might set things off once again. Your life is never quite yours again because you always have to reserve some segment—at times larger or smaller—for the illness, a reserve, leading you to forego larger and larger chunks of your own life just in case.

It is never just the illness itself; the word incurable itself comes with a terrible burden. Of course it is a blessing compared to other, more terrible options, but when it comes to actually living a life that knowledge provides very little comfort. That illness is always there. You can no longer trust feeling good because you know it is temporary; plans are always fundamentally provisional. The wonderful moments are always tainted by the understanding of the many more that you have missed, that you will miss. Everything you have comes in the gaps in between; it feels as though you have been granted permission that is fleeting. The phrase “what if?” is continually at the back of your mind; you are constantly preparing emergency protocols; the entire world shifts into the conditional tense.

Every once in a while your partner, or your spouse, or your child will tell you that they miss you, and you immediately know what they mean. You have been with them all day, but they miss the person you used to be. Everyone tells you that you are still essentially yourself, but they are wrong. They insist that your mind or your soul is separate from what your body has become, but they are wrong. It is all intimately entangled; you are what you are and that is far, far, far from what you were. They miss that indefatigable person you used to be, the person who functioned, who was able to simply be in a moment. That is no longer you. That will never be you. Your illness does not define you, but in so many profound ways it is an essential part of you. It has changed you, and you know it. Every day you miss yourself as well.

It is always there. The illness itself does its damage, but that is not the worst of it. No matter how bad it is, those constant reminders, that omnipresence is worse. It is always just under the surface reminding you that you are indeed damaged. No one else may notice it; they may not be able to tell you are ill at all. To the innocent bystander you are still yourself because you hide it so well. You try to not admit it to yourself, and you don’t want to burden them. And to be honest they don’t really want to hear about, at least not after the first couple of times. It isn’t good conversation, but it is unavoidable for you. It pervades your every thought and action. It dictates the possible futures you may have, and you worry about just how bad those might be.

You always wonder. You always worry. You are always damaged by it. The weight of carrying it grows greater with each passing day. People tell you to find the silver linings, but they don’t exist. Your plans and dreams have been stripped from you. You still have a lot, but that is not the same. Your own body has rejected what you worked so hard for, and it will always do so. It cannot be beaten; that’s the thing about incurable. You know it will always win; the best you can do is make adequate sacrifice to it. It is the volcano god and you just don’t know how many virgins you have to throw in.
Your body is not your body anymore; it belongs to the illness and you are renting time and space whenever you can. The first thought is always of the illness: when you take a trip, or lift your child, or wake up early, or stay out late, or you eat out, or can’t find a bathroom, or the grocery closes early, or it gets colder than you thought it would. Everything, everything, everything comes back to the illness. There is never a moment’s rest. It consumes you whether no matter what you try. That is just your new reality. You say you won’t let it, but you know you are lying. You have to let it, because if you don’t it will only hurt you all the more.

No, it isn’t a life of unremitting horror; you learn to deal with it. You say you’ve overcome it, but you know that is impossible. The doctors tell you that you are managing it, but really it is managing you. You find a provisional détente, but that will never last. As you get older your body will change and that management will cease to work; you’ll have to start over again. It is always there. It will never go away. You know it.

And that, ultimately, is the hardest part. That knowledge; that incredibly basic fact: it will never go away. It exhausts you. It exhausts the people around you. It changes everything. You are forever damaged not because your body doesn’t work anymore; you are damaged because you know it, you know it will never get better, you know there is nothing you can do to alter that. You are damaged. You don’t even want to admit it to yourself but sometimes you want to just throw in the towel. You won’t, and you don’t really want to, but you can’t avoid such thoughts.

You build a new life, but everything comes at an intimate cost; everything you do must be tallied up against what the illness will let you do. You don’t have priorities, but allowances. You weigh playing with your children against the time it will force you to spend stuck in bed. You feel constantly guilty. Working has very real physical costs, and you feel ashamed because you dare work when you could be spending that limited allowance of mobility on your spouse, your children, or even just your future. And that is actually the final component of your damage. Everything you do now has likely repercussions for the future: you never know the long-term damage you are doing when you push yourself to your limit. Just how much mobility, how much time are you shaving off of your life.

Of course everyone deals with these questions and issues, but for most these are the abstract ruminations of existential doubt. With chronic illness this is all so very real, so very present at every moment. I don’t write about all of this a lot; I mention it when it dominates my life for a while, but I try not to dwell on it here. It just doesn’t make for good marketing, and as much as I loathe marketing it is part of what I am doing here; it is part of my job no matter how reluctantly I engage it. This is an industry that prefers pictures over words, pretty over ugly. That is rarely my truth, so I leave all of this out.

I am profoundly grateful for the support and kind words I have received since my post a couple of days ago. Things have not been going well here physically as of late, and that then tears down everything else as time wears on. I am hopeful that I will get things under control again before too long, but that remains to be seen. In the meantime I will continue to work as much as I can; hell I don’t really have a choice. We need the second income—as woefully small as it is—so I’ll just have to figure it out. I’ll try to get things back to normal.

This, though, is going to be a periodic thing; from time to time things are going to get a bit maudlin. I could just hide it all, but that would be antithetical to the rest of my practice; I can’t imagine a way to make work about my life and my relationship to the world while hiding my life away. That, to me, is the essence of a modern quilting practice; life and practice are intertwined and quilts are fundamentally about meaning. I always want to be writing about quilts here, and showing new work, but sometimes that just won’t be possible. Sometimes I am just damaged. I’ll just have to hope that you all don’t mind coming along for that ride…

-t

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22 Responses to Damaged…

  1. 1
    peggy a bass says:

    thomas i just read you post titled damaged….i know how you feel and have known that feeling since 1982 but i just keep doing what i want when i feel up to it…
    peg in ks

  2. 2
    Cat says:

    There are no words to adequately express how sorry I am to read of your struggle. I am also grateful that you are willing to share your struggle through posts on different media. Those that unfortunately share your damage see what is possible during the good times and know they are not alone. It isn’t a ride that you want others to share but feel comfort from knowing someone truly understands. XOXO

  3. 3
    Emily says:

    🙁 Sending you hugs, and prayer for a cure. In my family we’re good at praying for a cure that is nowhere on the horizon… but I guess we can hope. I hope you find the right combinations of things to make life more than just bearable.

  4. 4
    Mary Ann says:

    Thank you for sharing all of your struggles with us Thomas. Even though I don’t quite quite know what to say or how to express my sorrow for you please know that I care very much and am so inspired by how hard you work to keep all of these things in the air with the challenges. As for your work, I love it, buy and share it with others.

  5. 5
    Colleen says:

    Being chronically sick sucks. Cancer left me with issues including diabetes and bad joints. Im too young for either. But 3 years letting illness control me and keep me in a chair/bed. I just continue to look for the light and follow it. Stay away from the darkness, keep reaching for the light. You have a lot of bright objects in your life to pull you through.

  6. 6
    Kim says:

    Thomas, I am so very sorry. That feeling of “normal” never really happens and coping sometimes is no more than waking up and possibly getting dressed. I am surrounding you with support and love as you have done for me. Thank you for being my rocks and I hope I can at the very least offer you something in return. Love ya!

  7. 7

    thank you for your honesty and for allowing us to share your burden. It sucks. keep creating; it is a bright spot in a sometimes dark world.

  8. 8

    Great post, I can empathise with some of that. Dont think twice about sharing stuff like that though, I think most your readers are not just here for pretty. Maybe a miniscule comfort to you (or not!) but I for one felt comfort and, to be honest, tremendous relief to read these kind of feelings, expressed by someone so successful and talented. Thanks x

  9. 9
  10. 10
    Mona Keegan says:

    Thank you for sharing. It helps us all. Peace.

  11. 11

    Sending you strength.

  12. 12
    ginevra says:

    I value what you have to say about Modern Quilting & I also value your realism & honesty about your illness.

    I hope you soon have a long period of feeling well, with enough energy for work, family, friends & everything else you want to do.

  13. 13
    Jane says:

    You have quite a gift for writing it all down. You should be proud that these posts will help people like me understand what friends are going through and, I imagine, help other sufferers feel less alone. My sympathies on the sucky hand you’ve been dealt. I wish a problem shared really was a problem halved.

  14. 14
    Anonymous says:

    Hi Thomas, I just wanted to say that I truly empathise with your sentiments, and can relate to several aspects. Stay strong.

  15. 15
    Joanne Jones says:

    So well written… It’s that moment thing isn’t it? That made me understand more.

  16. 16
    Cher says:

    your recent posts continue your ongoing honesty and full disclosure of you-I send you hugs and positive energy every day…because you inspire and you matter and we need your voice, not just in the quilting community, but everywhere…you truly make a difference Thomas. wrap yourself up in a quilt…soak up that special comfort and love and magic.

  17. 17
    Ivy says:

    Thomas, I so don’t mind coming along for the ride. And I’m so sorry for what you’re going through. Sending you love and hugs and strength.

    • 17.1
      Maggie Magee says:

      Thomas you are a true source of inspiration and it takes courage to speak out and share what you are going through. Know your illness is hell for you, but what you do with your art and design, words and the quilts you make, hopefully, is creating a balance of sorts. We all support and appreciate you. Please don’t hesitate to send up a flare if you need help sewing. Sending positive thoughts and hope you feel better very soon!
      Maggie

  18. 18
    Beth T. says:

    This is timely for me. Today is my birthday, and I have been reflecting on the way my life has been shaped by chronic illness for the last three decades. There are times when I think we should hear “Switch!” and all the people who have been gliding through the world in vibrant good health can have their turn with chronic illness, while those of us who have hobbled along could get a break. But that’s not how it works.

    Thank you for sharing. I think it does some good to put true experiences out there. Chronic illness is a different country than the place where healthy people live; your post may give them an idea of the landscape.

  19. 19
    Jane B says:

    Oh so sad that this is a part of your life. I so enjoy your creativity and the beauty you bring to life. My daughter has been diagnosed with depression and our family has a long history with this disease. She is just coming to terms with the lifelong nature of her illness and the need to manage it and that she probably will never be “back to normal” ever again. You are so eloquent in expressing that exact nature of chronic illness. It helps me to understand more what she is going through. Thank you.

  20. 20

    I read this just as I was dozing off last night and had to wait for the words to come today.

    You know that I am in the damaged category too and I’m into my third decade of lousy health. Like you, I’m realising that there is no’normal’ any more. Each day brings its challenges and at times you bash your head against a brick wall. I still (after 23 years) try to push the envelope and get knocked on my backside for weeks or months afterwards.

    The one thing you need to do now is rest, recharge and recover because you have seriously challenged the envelope this year. I do worry about you long distance because I know the restrictions that you face daily.

    Hugs from me

    Rosanne

  21. 21
    Merry says:

    While you and I have different chronic illnesses, I’ve never heard anyone so succinctly put into words how damaged I feel every single day. I’ve learned to pick my battles and save things for days when I’m barely mobile and enjoy life to the fullest on the good days. Do what you can for family, when you can and don’t beat yourself up over the rest. Your designs are fine and work will become better in small segments. And post about the bad, the good and the never going to be normal again. It’s okay. Bad days are challenges. And who really is normal? Everyone has something that controls them.

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