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…
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