Wednesday, July 28, 2010

In the Face of Danger..

I am not my illness. Although on days like today, I am quickly forgetting who I am and the qualities I possess. I feel as if I am melting into a puddle on the floor, made up entirely of my “symptoms”. I am going to see a new doctor in a few days, hoping with every fiber of my soul that this person will have answers-at least, an answer I have not heard before. To spare details (because this blog is for everyone, no matter your illness) I am now being told one of the problems may be complications with my heart. That would answer a lot of questions and fill in a lot of gaps-and although the idea of something being wrong with your heart may be frightening to many, the fact that it may bring me an answer, the fact that this may mean the book isn’t shut yet on this illness, that there may be another solution, makes me welcome the challenge.

It is my boyfriend’s week off from work, and I have not been able to do anything for days. I managed to make it out for a drive on a nice day when it wasn’t too humid, and we stopped at the bookstore, one of our favorite things to do, sat on the floor in one of the aisles and read for a while. I was so proud of myself when I came home. I thought this was the beginning of an upturn, but alas, later that evening, I was proved wrong. Very wrong. Unbelievably wrong.

I am sitting here in the living room watching him do dishes. I am too nausceous today to even enter the kitchen until they are out of sight. I watch him, cleaning them, and I just want to tell him to run, to go on without me. I want him to have a better life than this. If I can’t escape it, at least he can. Quickly my thoughts jump very far out of this moment, and into the future-I wonder if he would ever want to marry me, and why. I wonder if he believes this is forever. I wonder if, he ever did want to marry me, I’d be well enough to enjoy my wedding day. I’ve been dreaming of that day my whole life-will this disease take that away from me too?

I move over to the couch, put my head in my hands, and sob. Something that is not abnormal for me to do, and not abnormal for him to see. He comes over to me, and as usual, asks me what’s wrong. I give the usual response-citing that I fear I will never get better, and asking him why he is even with me. He begins to list many reasons, some of which even sound like me and the person I am. The person he is describing is trapped in this sick body, and is kicking and screaming to come out. I hear the words he is saying, and it is as if he is describing an old friend. The qualities sound like someone I know-the things she has done sound familiar, it’s as if he is speaking of an old friend but I can’t quite remember her name. Her name is on the tip of my tongue-what is it? But this person is me. Was me. When my health left, did the qualities that make me who I am leave too? Or will they live forever, even if that part of me is dead? And what point does it become who you were, and not who you are?

I hope he remembers me for who I was. Or is it who I am? I am not so sure anymore. He reminds me of a day in New York City, about a year ago, in an attempt to remind me of who I am. It was a Fall day, and I woke up that day feeling better than I had in a while, so I turned to him and said, “let’s go to New York.” I drove the 90 minutes into the city, which, according to Dave, takes strength in itself. After a very long, fun filled day, I was exhausted, and we got lost trying to find the subway to take us back to where I parked the car outside of the city. We were walking down a dark, filthy street, when I began to cry. I was in terrible pain, and I feared we would not be able to get back to where we came from. It was at this point that panic had set in, and I was questioning if I’d even be able to drive home, fear and dread rushing over me, thinking the worst was about to happen-what if we couldn’t get home tonight?

Suddenly, we saw a taxi cab fly out of nowhere into a hydrant, just missing a store. Without thinking, I ran up the street to the cab, afraid that the driver and passenger were seriously injured. I didn’t even know if Dave was running behind me-I forget to check if he was nearby. I forgot that I was just crying, and that I was in pain, and that I was in a deep set of panic of my own. The girl in the back of the cab opened the door, blood dripping down her face, and a kind stranger who had run out of a store handed me a paper towel to give to her. Minutes upon minutes passed by, an ambulance came, we gave our story to the police, and I tried my best to keep the woman calm. I don’t know how much time passed, I was so lost in the moment, but after everything settled down, and we turned to walk down that same dark, scary street, Dave looked at me and said, “You know you were crying right before that happened, right? Then I just saw you turn and run up the street. It was as if you weren’t just crying and in pain.” He continued to tell me this over and over again on the way home, and still a year later, he reminds me of this story. This story, where my need to run into the face of danger and help a stranger, this shows me who I am. Who I AM. Even in the depths of pain, who I am rose above it, and I forgot about myself in the instance where someone else was in danger.

That’s the thing about this scary (chronically ill) world we live in. It has prepared us for danger. It has showed us who we really are. It has made us look into the face of danger and run straight into it. When that cab hit the hydrant, I didn’t run away from the scene, I ran straight into it, a skill I learned and mastered while navigating through this scary, unending maze. Every single day we run into the face of danger-whether it’s getting into the car to run an errand, taking care of our children, or simply (and the word to use here definitely isn’t “simply”) getting out of the bed every morning-we make a choicee to run straight into the face of danger. We don’t wake up to birds chirping, we wake up to a brick hitting us in the face with the pain. But, we get up. And eve if we don’t get up, we open our eyes. We choose to say, “not today, you won’t get me today”, and we brave another day, head on, right in the face of danger.

I’ve said it before and I’ll say it again-I don’t regret having this illness. It has given me some of the qualities I most admire in myself and in others I have met who share my pain. Strength. Strength that most of you probably don’t even realize you have. I’m here to tell you-deciding to wake up in the morning, KNOWING you will face this pain again? The greatest act of strength and grace that ever been known.

Oh, and what Dave loves most about me? My heart.

Wednesday, July 14, 2010

Part of Their World

Sometimes I feel like I live in two different worlds. Maybe even 3. Anyone who is close to me (and these days, that’s not many) knows that I refer to my life in two parts: my new life, and my old life. Or, pre and post sick, if you will.

I could write about that for days. And I plan to.

But first, there is this other world. It’s the world that everyone around me is living in that I can’t quite seem to fit in to. I fit in to it in pieces sometimes, and it’s nice. It always leaves me wanting more. This being a particularly difficult week, that world seems farther away than usual, but I take a deep breath and try to remember I will get a piece of it again. But that is it, a piece.

The pieces can vary in length of time and different measures of normalcy. For example, a night in a class that takes two hours is a small piece. I sit there, take notes, smile at others, raise my hand to ask a question or make a point, and I must look so normal. I make sure to wear a cute outfit to overcompensate for how I am feeling, and I am usually sure to wear makeup, something I don’t really like to do and something I don’t normally do in my regular life, but something I find necessary to do in this world, so as to hide my undereye circles and uneven skin tone from a night that was lacking in sleep-God forbid anyone actually caught on that I was “sick” and I wasn’t one of them. I’ll sit there, sometimes in incredible pain, woozy from medication, and I look around and see people smiling at me. Classmates sitting near me engage in conversation and I make them laugh. Sometimes I watch them, I watch their faces as they laugh at something I said (not that I’m calling myself a comedian or anything) and I sincerely wish them nothing but that joy they are feeling in that moment, and I say a silent prayer that they will never have to cross over in to my world. Even on nights I am not feeling well, I think I fake it pretty well. In fact, I’ve gotten so well at faking, sometimes I actually believe myself. I watch myself speaking, smiling, laughing, keeping up with everyone else and a small part of myself actually wonders if I will be able to stay in their world a little while longer, if maybe I will find a way to cross back over, and maybe this simple conversation will one day be all that is happening in that moment..and not this storm inside my body. I watch people do things with such ease, it amazes me, and I feel like sort of an alien, an imposter, and I wonder if they know.

I watch people take a snack out and casually eat, not thinking to themselves what pill they have to take before they eat, and after they eat, and making sure they check the time they are eating so they can plan when they will eat again. I don’t see them curl their lips because they are nausceous, or take a few bites then put it down in case it might not sit right with them. Then, amazingly, between bites, I see them pick up their pens and right furiously with such ease. I see their fingers steadily hold the pen, they dash their eyes up quickly, take another bite of food, write quickly, and repeat. I watch them as if I am seeing something for the first time and trying to figure out how it’s done. How simple. Doesn’t that hurt?

I try to do what they do. I take out a snack I perfectly selected after many minutes of deliberating how I felt that day, what I thought I could tolerate, and what else I should bring in case that snack failed. I look at the clock. Debate whether to attempt to eat now or eat later when I have some medication due. Either way is a risk. These are the things I debate daily. Hourly.

Ok, let’s not think about the snack right now. Let’s take notes. I can hold my pen like you. And I can pretend my fingers aren’t aching. I can pretend my hands aren’t shaking, that I can completely feel my fingers, that they aren’t tingly and prickly. See, I can be like you. I can look like you. I am a little closer to being in your world.

The sad thing is, I was in their world once. Sometimes I can remember what it was like. Sometimes, I cannot, and those are the days that scare me. Because even if I can never have it back, remembering what it was like to be in that world gets me through..because there is always the hope that I will be back there again someday. That the person people see will be the person I actually am.

Sometimes the amount of time I’m allowed to spend in “their” world is even longer, and all the more devastating when it ends. I had a few days a while back when I was there. It seems so long ago, but it was only about a month ago. I still planned my snacks and times and analyzed how I was feeling. That is something that is so embedded in me, it would take a while to leave, if it ever would. But I found myself able to experience things more. I remember specifically I was meeting with my best friend to study for an exam we had, and walking to meet him, my feet felt different. I felt like I was walking lighter, I felt my body move in ways I hadn’t felt in months. It was moving and breathing and I was able to have only one thought at a time. I was able to listen to peoples words and hear only them. I was able to sit with my boyfriend and watch a movie and not squirm. In fact, that same week, Dave and I had two of our friends over in the pool, and we swam and played with the beach ball for total of 4 hours. I almost didn’t want to type that once I remembered it, because it hurts to remember. But as I am crying I am smiling as I remember their faces, our laughter, and the amazing feeling of being in exactly that moment. For that time, that was all there was. My God I will remember that forever. I wish I knew that was going to be one of the last good days for a while. I’m afraid to go to sleep on the good days, afraid I will wake up and it will be gone. I remember walking back down to our apartment from the pool, we were all talking about how exhausted we were, and for once, my exhaustion was the same as theirs. It was like I had moved to a foreign country a while ago and haven’t been able to speak the language well, but now I did. I heard their words and I knew what they meant and I spoke their language. I belonged with them. I was one of them. We were all tired in the same way. We were all sore in the same way. We ate pizza together and joked and I didn’t think about how it might hurt to eat..and even didn’t hurt to eat. I was so in this world and this moment, I wasn’t even that worried that it would end. Gosh for a little while there, I thought I made it back to their world. I thought I would be able to stay for a while.

I want to go back, but I can’t seem to find the way. Sometimes I start to get there, but I get thrown back to the start again. I am not giving up though, let’s make that clear. I am not. I’ve been given pieces of that world and it’s too sweet and too amazing to give up on. I will get there. And when I say I’m tired, it will mean the same thing as the friend next to me. And when I look at the clock, I’ll smile to myself because I am looking at how quickly time has passed, and not when my next dose is. I will get teary eyed when I look in my closet at a dress I was wearing when I fell to my knees in pain, and I will put it on, with HEELS, and twirl around. Any soreness I feel the next day will be from dancing too much. Imagine that? Yes, imagine it. It will be real. I will live one of those days again. Which will turn into many days. It will. It will. It will.

And it will for you too.

Saturday, July 10, 2010

The Beauty of Shared Hope

I posted this blog tonight because I was having a particularly difficult day, and I thought I’d share it with some friends who might relate. I really had no idea I would get so many amazing responses-and so soon!-and I want to tell you how thankful I am to all of you.

There are many of you who have read this tonight who share one of the illnesses I have, and some have different illnesses-but we are all the same. No matter the illness, there is one commonality- the daily struggle we all feel to make it through the consistent physical and emotional pain it brings.

I originally started writing these journals when I was awake in the middle of the night in extreme pain. It was a way for me to vent, and somehow I hoped that while I cried those tears, and felt my stiff sore fingers hit the keys, someone, somewhere out there could hear me. You heard me. And I want you to know something-I hear you.

I know what it’s like to feel alone in a crowded room. I know what its like to walk in to a room and see people smiling and casually talking and what extreme energy it takes to pull out of yourself the ability to act “normal” just to be a part of their world. I’ve cried myself to sleep at night thinking of my “old life” asking myself “what did I do wrong?” There are days I will smell a familiar smell-something as simple as a soap I used right when I became ill, and I feel the crushing feeling in my chest of the depths of despair of that time in my life. I feel my heart tearing into pieces as I think to myself all of the things I should have done, the words I would have said to my friends before they slipped away from me, the foods I would have eaten and enjoyed, and the trips I might have taken. I have cursed God and praised God all in the same night-begging him for an answer and asking Him why this is happening. I have felt the highest of hopes on those days when I am going to see a new Dr., hoping this would be the one to help me; and the lowest of lows when they give me the same answers. I want to scream HELP ME HELP ME there must be something you can do! Don’t you understand all that I have lost?

But let me tell you what I’ve gained. If I never got here-if I never felt this pain, if I never had this illness, I would not have seen the amazingly beautiful, messy struggle that it is to be someone with a chronic illness. The people I have met and spoken with who live with these illnesses day to day are some of the most deep, compassionate, kind, admirable people I have ever known, and have restored my faith in the world. I don’t know why we are ill. I do not know why it is us. I do not know why you-YOU-the beautiful soul who is reading this feels this kind of pain, but I want to tell you that you are an amazing piece of what makes this world beautiful. YOU and the way you see the world, even on your darkest day, is in a different lens from the “normal” person, and that is something we share.

So, wherever you are tonight, brave soul-I want you to know that you are not alone. Tonight when you lay your head on your pillow, please know that if you are reading this, YOU are the reason I am waking up smiling tomorrow. Your strength gives me strength. And together, the hope we share for each other is so much stronger than any of our diseases.

I don't have answers. But I do hope we can find them together. Maybe there is a reason for all of this. Maybe I will make a reason.

And a special my beautiful little Aussie spirit-you are the beauty you have been wanting to see in your own world. The light of your spirit is one of the brightest I have ever seen. Your kind words and strength echo in my head during the hardest of days. You are my perfect friend.

Breathe in the Rain

It is in moments like this, moments where the level of pain I am experiencing takes my breath away that I pinch my own skin to check that I am still alive, that I am still human, because no human suffering could ever feel this deep… that I think.. I need to find gratitude. Yes, gratitude.

The other day I was driving to school, and I was already running late. My hands clutched the steering wheel, and my face must have resembled something of a gremblin in how I clenched my jaw and talked out loud to any of the cars that were “in my way”. And no, I did not take this moment to be thankful that I was even able to drive to school, I wasted this moment on being frustrated. I took my energy and placed it into something I had no control over, and I wasn’t thankful, and I didn’t use the time I was given wisely. I was coming up on more traffic, and felt myself begin to panic. A school bus stopped to let a child off, and I tapped my fingers on the steering wheel as what was most likely 30 seconds felt like 30 minutes. Just as I was cursing the Gods, school buses, and the clock, a small child hopped off the bus just as it started to rain. It wasn’t a light drizzle, but quite an impressive amount of rain that suddenly fell from the sky. The little girl skipped across the road and made it to her driveway, where she stopped. She stood there with her pink bookbag and slightly discheveled ponytail, and looked up at the sky, smiled, and let the rain fall on her face, completely immersed in the moment and happy to be alive. She smiled at the sky, as if her and the sky had a secret that none of the rest of us knew, and let the rain fall down as she closed her eyes to take it all in. She didn’t care that the rain might ruin her ponytail, or that it felt cold on her face, or that she herself just spent a while waiting in this traffic, she was just happy to feel the rain.

And then, I was happy too. Maybe today I wasn’t able to do everything I wanted to do, but I did get to see the rain. And I did get to see sheer joy on another person’s face. Maybe I am sick today, but there were days in my life when I wasn’t sick. There were days I will never forget, and they live in my heart. I pull them out on painful days like this one, they make me feel alive when otherwise I feel like I am about to die.

One day when I was about 8 years old, my cousin Samantha and I were taking a walk down my neighborhood street. It was a hot summer day, one where the air is almost too thick to breathe, but we were too pleased with our new independence and the fact that our mothers were allowing us to walk down to the end of the street and back alone to let that get in our way.

Suddenly, the sky turned dark gray. Clouds ran across the sun so fast, it was if they were running from the strong wind that was coming. The sky opened up, and rain emerged from the clouds so fast and so hard, it was all we could see.

She took my hand and we ran like I have never run before. The hard rain pounded on our bodies and we yelled out in pure joy and excitement as we ran up the street together, our feet pounding the pavement, steam rising from the ground, the smell of summer dewy rain filling our noses. We reached my door, and we were safe, and we looked back and saw a rainbow. I’ve never seen a rain like that again.

Some people curse the rain. It’s damp, it’s cold, it’s wet, it’s depressing. It is anything but convenient, or happy. The rain never happens when you want it to, or need it to, but always when it will be nothing but a frustration.

I think that all we can ask for in life are moments. A few moments, that strung together make up a life worth living. Moments of pure joy, happiness, and love that give an answer to those dark ugly moments we experience. We cannot live every moment in happiness. We simply cannot always be given a life that is pain free. But we can be given this-moments of pure perfection that make your heart beat in a way you never felt before, moments that keep you warm on a cold day and bring you light during the darkness of night. Would I understand the depths of that moment of perfection had I not seen the darkest of days? Maybe not. And ironically, this perfect happened in the rain.


I’ve never been much of a “zen” person. You know those people, those PEOPLE you see that seem to walk through life as if a light, cool breeze is pushing them? Yah, that’s not me. Not only that, those people piss me the hell off. Always have, always will. So I can’t entirely blame my lack of zen on the fact that I became ill, but I think it might have a bit to do with it.

The thing is, I don’t think I was ever a truly calm person, because I think a little part of me always knew this would happen. A zen person, I was not, but what I definitely was was someone who did stop in those small moments..those moments when I was a young teenager running on the beach with my friends, and I swear I knew. I stopped. And I would drive everyone crazy because I would say, “you guys, look at the sun!”, in particular noticing the pinkness of the sky below the orange sun. I’d watch the orange parts mix in with the pink, and for moment I wondered who was chasing who..the sun or the sky? There is something about an endless ocean and a pink sky that for a moment makes you think to yourself ‘I might never see this again. And I am lucky that I did.’ I was lucky. I still feel lucky. And even when I do see a pink sky again, it always feels like it will be the last time..and there is something special about that. Cut to: “Yes Laura, now catch this baseball”, being the response from my friends. But I knew to stop and watch it. And I don’t know how I knew. But I remember one time stopping..a particular moment where Stephanie layed down next to me on the beach..she put her towel down next to mine, and sprayed her hair with this concoction that she always used to make her hair wavy..and I remember wanting to remember that smell, and watching her scrunch her hair and flop it around with such grace, and she looked down at me like I was some psychopath watching her..and my eyes filled with tears..I remember this because I asked myself why I felt like crying..and I just said to her “I love this day”. She stopped, and the cynical part of her smile left..her mouth curved differently..into this smile I had never seen before..and she agreed. That was our moment. And I won’t forget it. I am not mad at her for leaving. I know that at that young age no one could understand. And I carry those moments with me as my memory of her. She has her life now, and she is okay, and I am not mad..I am glad we had that time together. But she is a piece, one piece of the many pieces of my old life that I mourn. And I believe I always will.

What got me on this zen rant? Ironically, my attempt at yoga today. Apparently, it’s supposed to be good for you. Supposed to help you find your breath. Or something like that. Well in those moments..when everyone is lying on their mat..and the instructor is using a soft, guiding voice to help you steady and slow your heart is racing, and my eyes are open, and I feel like I’m choking. I cannot find my steady breath anymore. Granted, I don’t know if I ever had one, but I certainly cannot find it now. I cannot let myself breath deeply, because then I want to cry. And then I will be the person crying during yoga. I am already the person crying in class, and in Starbucks, and in the pharmacy when I hear old men singing..I cannot be the person crying in yoga. But yep, I was. I layed there and as I tried to breathe, I thought of those moments when I wake up in the middle of the night in so much pain I want to scream..and well, I wanted to scream. I didn’t want to breath, I wanted to freaking scream. I wanted to scream for all of the pain, all of the moments I tried and couldn’t do it, for the moments I couldn’t squeeze my shampoo bottle, or make it down the stairs to do laundry. For all of the people who came and went, all of the classes I had to leave, the children I had to say goodbye to at work, the moments where I forget what it’s like to put two feet on the ground with ease. And the warm tears rushed down my face, and I wiped them away, brushing my face as if I was deep in the zen moment, but I wasn’t in this moment, I was in a moment that happened already. And that’s when I thought to myself..STOP. Stop being in a moment that already happened! That moment had its time in your life. It already took up the amount of time it did. Do not let it own this time, this time that is yours, in this moment. You are here, on this mat. And sure, the stretches that others seem to glide into make you feel like someone is blowing a balloon inside your bones, but you are here doing it. And maybe if you don’t make that grimicing face, no one will know. So I will try to move like everyone else. And if I make a mistake, it will make me human. And isn’t that what I’m trying to be? Human. I am being what I’ve always wanted..just like everyone else. Someone who makes mistakes, and cannot do that yoga pose perfectly. Because as I look around..other people are laughing, and trying to gain their balance, and I am too..and in this moment, we are the same. And that is all I have ever wanted to be, the same as everyone else. So, did I just get what I’ve been hoping for?

Maybe that is what off of this is about. Getting what you are hoping for, but not realizing it. And maybe, if anything, this ridiculous monster inside me made me see those moments..those moments, like that afternoon on the beach, where you were given a minute of what you’ve been waiting for..and this time, I was there to breathe it in. And finally, I could breathe.

No, not a deep breath like the yogi’s all around me. But a breath all the same. A breath that was mine. A breath I could not have taken a few weeks ago. Progress. Isn’t that, and a moment like this one, all we can ever ask for?