Dear Friend,

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.

Christina Tournant

Christina Tournant

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...)

Dear Friend,

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.

I understand.

So, please, do not let go.

- Sarah
 

http://www.suicidepreventionlifeline.org/

1-800-273-TALK (8255)
 

Thanksgiving: Then & Now

There were many Thanksgivings I had to endure with an eating disorder.

Too many.

With every single one, I couldn't enjoy my time off from school, be present with my family, or really be grateful for anything. This usually resulted in me feeling like the worst piece of scum there ever was -- I had people who cared about me, I was blessed enough to have food to eat while so many people didn't. *sigh* Guilt, anxiety, and depression - my synonyms for "Thanksgiving".

I remember a lot about those Thanksgivings... feelings, though. Never any moments.

Eating disorders take away a lot. But one of the things I hadn't realized (until after I was recovered), was that it took away memories. My mind was never "there" because it was always thinking, obsessing, planning. Even when I tried to shut it out, it was still buzzing just below the surface.

Honestly, there is just one moment I remember back then. I stood a few feet away, maybe four or five, from my parents' long, dining room table -- and a little to the left of it. I remember exactly how the sun was shining through the windows at the other end -- mid-afternoon, a little too warm for fall but too cold for summer. I remember how the tableware had been set -- bowls in the middle waiting for the food my mom was still scurrying over in the kitchen. I remember the purple centerpieces my mom had set up -- these oblong whatsits and purple ornaments on top of a matching tablecloth. And the tablecloth wasn't long enough, so Mom had angled in a (surprisingly) Martha Stewart-type fashion.

And I just stood there. Looking at the empty table and the empty chairs and the empty plates and bowls.

Empty.

These days, I've been lucky enough to spend the holidays feeling full. Happily full. Full of family and friends, full of delicious food, full of gratitude.

Full used to be terrifying. In every way with everything. I guess it still can be, as I sit here on my couch, reflecting about it all. Full is a tough concept, a tough idea, and a tough feeling. But when I am full, I remember moments and I remember feelings. And I am so thankful -- so thankful -- that these days I get to be full of life.

If I could, I would hug every single person that struggles with Thanksgiving. I wish, so much, that I could take them with me so we could be together. But maybe we are, in a way. Aren't we? Because we aren't alone. Because I will think of them, and maybe they will think of me, too -- and try to remember that it can get better.

And that I am thankful for you. Because I wouldn't be filled up by all you wonderful people, now, if I had not been empty back then.

Love,
Sarah

A great event is happening on Twitter today called #thx4support. Please check it out!

(Photo from proud2bme.org)

"Enough"

"Enough" is a trap.

Whatever words you put in front of it devalues what really is.

I'm not PRETTY enough.
I'm not SMART enough.

Whatever you put after it can be even worse.

I'm not THIN enough to have an eating disorder.
I'm not GOOD enough for him.

There is no "enough". Nothing will fill it so that it suddenly goes away. "Enough" is a hole in your mind that stays and echos and will never be filled up.

Instead, it has to be shown for what it really is. It has to be challenged.
Enough for whom? For him? For her? For Mom? For Dad? For them? For you?

Nothing will be enough unless you say so.

You.

Because you are powerful and strong and worth fighting for.

You.


You are so much more than "enough".

Home & the Impermanence of Feeling

I think recovery from any form of addiction -- eating disorders, alcoholism, whatever -- means an annoying, boat-load of anxiety.

I hate anxiety.

Many years ago, in elementary school, I had a friend named Jacqui. Obviously, she was awesome -- you can't have a name like "Jacqui" and not be awesome. She was confident and eccentric and laughed as loudly as I did.
Her house was just like her -- open, full of light, inviting. And her older brothers were funny and loud -- teenagers but we were usually able to convince them to play stuffed animal dodgeball with us from the balcony upstairs. And her Mom... her Mom was one of those moms that always made you feel so welcome and "please dear, don't worry about being so polite" and "would you like another popsicle?" and "sure you can sleep out on the trampoline tonight"!

Needless to say, I loved going to Jacqui's. But, one sleepover night, at 1am, I snuck out of her bedroom and --in the darkness of her mom's kitchen (which still smelled like S'mores from hours earlier), barefoot on their wooden floor -- I called my parents. My cries swallowed down by the fear that a member of Jacqui's family would hear me bawling, homesick, vulnerable.

I've always been like this. Maybe it's social anxiety, maybe it's just anxiety-anxiety. I don't know. But I like being at home. It is comfortable here. I am utterly and completely myself. I can do what I want and be independent and happy, all while still being around my dogs, my husband, within comfort and safety.

This past weekend I was at my parents house, which was where I spent the majority of my years where I felt depressed and hopeless. Don't get me wrong, I loved getting the chance to hang out with them, but it was difficult to stay there. So much that when I finally got back to my home, I collapsed into a 4 hour nap and then spent the next 24 hours trying to rid myself of the dormant anxiety I had built up during the trip.

Recovering felt like being away from home -- for a very long time, with no way to get back to it. So far away that anything comfortable and familiar was forgotten. I didn't know what it felt like to feel like "myself". Where I knew what was going to happen, how I to react, where I knew I could deal with it all...

I guess here is where I write about how if I didn't push myself and
spend the night at my friend's house, I wouldn't have had all these wonderful memories. Or if I hadn't gotten out of my comfort zone, I wouldn't have had such a good weekend with my parents.

But I would just be saying something you and I all already know.

Maybe, instead, what I need to do is start acknowledging that the feeling, that anxiety, is there. Right there in the core of myself. I always try to ignore it and push it away because it so difficult for me to feel and handle. It is an emotion that paralyzes me -- mentally, physically, and emotionally. Because (and I've only realized this in the past couple days -- hooray self-searching!) one of my biggest fears with anxiety is that it is permanent. When I am in the throes of it, I don't think it will ever go away. That I will forever feel this unsettled, this crazy. That my thoughts will never sort themselves out and I will never find my way back to anything stable.

Perhaps that is one reason why addictions are so difficult. Maybe they help make the anxiety, or other feelings one may have trouble bearing, easier to deal with.

But going back will not set me free.

At the beginning of recovery, you may only be able to step outside of that feeling of anxiety for a moment. A second. A giant gulping breath, before being pulled back in and under by the tide.

But soon, that moment will last a moment longer. You may not even realize it. Two deep breaths this time around. And. in days or weeks or months, it doesn't matter how long as long as you are moving, you may suddenly realize you've been turning your face to the sun and hadn't even noticed it. The anxiety has quieted enough that you have been able to kneel down and pick up a seashell, before it takes you once again.

It is not permanent. That feeling of anxiety. Each time you step away from it, you will add to the time spent without it. Until one day (yes, I say this because I know... because it happened to me), the majority of time will be spent in the sunlight. The time living in that anxiety will grow less and less.

This is not to say it will never return. I have had months, years, of being without it and then suddenly the anxiety and depression breaks through like a dam and flattens me. It remembers just how to roll me, how to make me writhe. Even if I had managed to forget how it felt, it reminds me completely. As if it had never left.

But it has left. It did leave. And it will again. I must remember this. I have made it this far. I have started at the very beginning, with one single breath. It is not permanent, despite how much it feels like it is and how much it feels like it will be. Because, through this time of struggle, I have made myself my own home. Not one that has been built out of fear and darkness, but one with open windows and a lovely, constant, ocean breeze billowing through baby-blue curtains. A home that was not built to keep other things out and me inside, but one where I can just be myself. Loudly and completely.

Without abandon or reprimand.

No, anxiety will come back to me. Depression may, too. That is life. That is life. But my new home will always be there when I turn to look for it. When I close my eyes and wait and breathe, telling myself, over and over, "It will pass. It will pass. I will find the sun again, because I always have before."