I started writing this letter to Tina, actually. I had put it off for a while, though I'm not sure why. Perhaps because I wasn't sure if it was in my place to even write it. Everyone's struggle/suffering is his/her own and, while I can maybe empathize, that does not mean I know exactly how anyone feels.
And, as I thought about it, I didn't want to somehow reduce what she went through, or minimize the people that knew her, by pretending that I did. So I changed it to "Dear Friend".
(I figure that could encompass you all. Even Tina. Even me. So...)
I've thought about it. Years before I even had to struggle with an invisible illness, I thought about it. Depression was rampant and, at times, I didn't even realize it was what I was dealing with. Hell, only recently have I realized my method of thinking might not be "the norm" and that I'm dealing with some form of an anxiety disorder. However, none of that changes the fact that: I've thought about it.
Having struggled with clinical depression though, I have to say that — in my experience — chronic illnesses seem to bring its own kind of depression. And, just like the former, it isn't something that can be easily explained. But I will try, because I'm just that audacious:
It's like you wake up one day and the life you knew is gone — except, you don't know it is gone just yet. You think you are tired or pushing yourself too hard or fighting a cold. But then, before you know it, it's Oh! You dedicated your life you a sport you loved that was so intrinsic and part of you it was like breathing? Too bad. Oh! You want to pick up your niece and nephew for a hug? Ha. Try just getting out of bed to take a piss. And wait! You want to go hang out with your friends but you have to tell them, again, that you can't? That you spend most of your life sleeping? That even when you are awake you aren't really there?
And that's when you think maybe the life you knew might not come back.
And what's worse is that you don't know why. The doctors, who are supposed to help you — who are supposed to rescue you and save you and tell you, "Ok, this is what has happened. This is how we will beat it." — don't give you anything to blame. Hell, most of the time they don't even listen.
So you're just stuck. And you're alone. And you're just there, in your body. A body that is breaking down for a reason you don't understand. A body that is, suddenly, an enemy. And, God, all you want is to know what it is. After months staring at the mahogany fan in your bedroom — the dust on the edges of it, the frosted bowl covering a single light bulb that has burned above you while thinking about all the walks you haven't given your dog, all the birthday wishes that have been made without you, how you're too exhausted to even read a book or watch a movie. After feeling there are more moments in your life that you've missed rather than been a part of, you think, "I just want to know. I just want to know. Even if it is ALS, if it is cancer — OK. Because at least then I will know. At least then I will know what to do in order to fight." And as you continue to watch your life move past you, seasons changing out the window from your bed, you feel bad for thinking like that. Like you were somehow wishing for cancer when that wasn't the case at all. All you were wishing for is an answer to why who you once were, and how you once lived, is gone. But you can't explain that people. You can't explain that loss and that hurt and that longing. Because you have two legs and two arms and a heart the pumps and lungs that breathe and there should be "no reason" why you are bed-bound.
And maybe that’s when you get lucky. After years of searching you are overjoyed (yes, overjoyed!) to find what ails you. It has a face, it has a name — dysautonomia, Ehlers-Danlos Syndrome, Lyme Disease, Lupus — and, without knowing it, you become one of the strongest people ever to exist. Because true strength is gentle. True strength is quiet. True strength is in the little battles you make second after second after second of every single day.
But you don’t feel strong. Not in the slightest. All you feel is the fatigue. All you feel is the weight of the things you cannot do and the shadow of the life you once had. Of the family and friends and loved ones you are certain you’ve become a burden to and the choices you have to make day in and day out ("Do I wash my hair and feel like shit for the rest of the day or do I sit in filth and stay awake for more than 30 minutes?") And through all of this that damn ceiling fan does absolutely nothing but stare down at you — the dust on it even thicker now – because you've been there for days. For months. For years.
Of course I’ve thought about it. And, of course, I wish I had something more than platitudes to tell Tina – to tell anyone. But, really, there is a hopelessness in a chronic illness — especially an invisible one — that only those who have it can understand.
So what is there to say, really? I’m not sure. I try to think of the fact that I’m not alone, because that is true. I think of all the friends I have found because of my illness. I think about all the things I’ve discovered about myself that I, otherwise, wouldn’t have. How my body has forced me to listen to it after years of ignoring it. How I respect it now, how (when I am not unfairly angry at it) I appreciate it — in all its strength and its weakness.
I think about how the little stuff became big stuff: microwaving a meal on my own, managing a shower, walking my dog to the mail box and back, staying awake through an entire movie. I measure my successes in the tiniest of these things -- things most people don’t even think about. Until one day I stopped to see that years of these "little things" brought me to teaching children with Autism for 8 hours a day. Sure, I was beyond exhausted and some days I hurt more than I could understand, but I was doing it.
Even then, though, I think one of the hardest parts is not knowing if we'll feel OK tomorrow... shit, if we will feel OK in 5 minutes. If we will ever really feel "OK" again. “I might never get better” is a scary, scary thought, but a fair one, don’t you think? With all you have been through? Everything you have dealt with?
I think so.
So, I don’t know. I don't know what to say. I know that in my darkest moments, I did everything I could to find something to hold on to. I took pictures from my bed and discovered a love for photography. And I told myself, over and over, that even though my body might be sick, my spirit was whole.
And while I don't know exactly how you feel, my friend, I understand.
So, please, do not let go.