Friday, December 10, 2010

What a Beautiful World


When I became ill, I was so afraid that I would miss out on seeing all of the beauty in the world. My heart ached over the idea that I might not be able to travel to places I always wanted to see. I wondered if I would become the person I was supposed to be, and if I would know as much as others who had opportunities I could not have anymore. My whole life, I wanted answers. I wanted to learn about the world-about why things existed. I wanted to see all of the beautiful things everyone talked about-the Eiffel Tower in Paris, the colosseum in Rome, a safari in Africa. I wanted to soak up all of the beauty in the world. I wanted to take pictures of the things I saw so I could remember them forever. I wanted to KNOW things.
Well, I haven’t traveled the world. But, amazingly, I have found many of the answers I have been searching for, and all of the beauty I could ever know.
Through my journey with this illness, I have met so many amazing individuals who share this pain with me. Through reading their blogs, watching their YouTube videos, speaking with them, crying with them, rooting for them, and sitting quietly with them-both on the phone or on the computer, or by myself, in my room, closing my eyes and praying for their relief-I have learned all I will ever need to know about life.
And this is what I know:
The greatest beauty I will ever see exists in the souls of human beings. The human beings that have known suffering and have come out the other side, grateful for life, with a quiet courage that they carry with them, and an undying attitude of “ok, I’m still going, bring it on”- these are the people that carry with them a spark, a light that cannot be diminished, a light that shines across states, countries and oceans. Their light, their words, their strength stays with me through every single moment of my life-whether I am aware they are in pain and on my knees praying for their relief, or if I am out and I see something beautiful and think “I wish they could see this”-they are with me. Their words of strength and encouragement are the photographs of beauty I keep inside my mind. These are the things I will remember forever. These things. The words of individuals who have known true suffering yet still see the world as a place of hope, who are in their own hell but reach out to pull others out of their suffering, who will remember to wish you well on a day that is difficult for you. I have learned everything I ever needed to know from those who have known suffering, from those who are in this world, this Chronically Ill world with me.
I wanted to see the world. I have. I have seen the best and worst parts of it. And the best parts? Way worth going through the bad parts.
Here’s what I know:
Without even realizing it, I was given everything I have ever asked for. It just didn’t present itself in lavish adventures, but in the life challenges of the deep pain that wakes me in the middle of the night, the extreme loss of a life I had to leave behind, and the search for answers that keeps my mind awake and alive, every moment of every day. I was given a world of beauty I always wanted to see. Who’s to say when I asked for a world of beauty, it would be the world of beauty that included traveling to exotic places, and looking at monuments? What I asked for was answers about life. What I wanted was to see the most beautiful things in the world. What I asked for was the deepest understanding of life a person can feel.
I got it. I got through the stories of others. I got it by being catapulted out of that world and into this one. And this world? It’s not so bad. In fact, I must say, I think it’s the most beautiful thing I have ever seen. Funny, how when you look around, you may just realize you have gotten everything you have ever wanted. It might not come in the form you thought it would-tied up in pretty paper with a bow-but it will come to you.
I certainly did travel to find it. I didn’t travel across oceans, but I left one life and was dropped into another. Well, I got my answers. I see the beauty. I have my answers now. Beauty- beauty is found in the souls of the suffering.
So, my friend, do not be afraid. If you are searching for beauty- look in the mirror. It exists inside you, inside the fight in your heart. The very fact that you keep going, that you make that choice, that you hold that hope, that you are looking for answers-those thoughts that run through your mind before you go to sleep at night-these are the things that make you beautiful. These are the things that make you add beauty to the world. Not just beauty-the most beauty. The most important and meaningful beauty that has ever been known. Keep fighting. Keep going. Keep being you. Don’t ever stop searching for your answers, but know that they can be found in the souls of those that share this world with you. We’re here together. We’re here with you.
I’m glad that this trip so far has been a one way ticket. How could I go back to that other world, when this one holds the most beautiful souls I have ever known?
**This blog is dedicated to anyone who has a chronic illness, to anyone that has suffered a loss, to anyone that is searching for who they are. It is dedicated to the individuals who have changed my life forever-some I speak with every day, and some who have no idea how much they have touched my heart.

To you, reading this blog. Even if we don’t know each other, I keep you close. I keep you in my heart. I pray for you ever day. I hope you get answers. I hope you find peace. And I hope you know, you are not alone.
To Dave, for watching me crumble in my moments of pain and remaining a rock of strength. For not judging me in my weak moments, and for encouraging me through my strong ones. For showing me I am worthy of love. For showing me that love is not a night out on the town, but being content anywhere with this person-even if that place is the emergency room at midnight on a Friday. Several times. And, for never giving up hope that there will be a cure, and for being one of the people trying to find it.
Never.Stop.Searching.
You are the beauty you thought you’d miss.

Sunday, December 5, 2010

Home




Grandma took the news of being moved upstairs better than I think anyone would. Which is typical of her. “I am never going home,” she said, “I just wanted to see my home one more time. When I left there, I never thought I wouldn’t be back again.”
Isn’t that how it is for all of us? The first moment we became ill, when we fell to the ground and knew something just wasn’t right, did we ever think we’d never go back to where we were? Who we were? The lives we had?
I can’t accept that grandma will never go home again. Everyone is making arrangements to sell her apartment. They are packing her things and figuring out where to put them, and who will take what with them. It’s too soon. Too soon. Give her a chance. It’s not the end for her yet.
I can’t accept that grandma will never go home again. And I can’t accept that I will never go home again. “Home” in this case, being the life and body I once knew. You’d think the memory of it would be distant by now, but it is fresh. I can still feel what my skin used to feel like. I can close my eyes and remember feeling weightless. I can remember feeling invincible, feeling no pain. I remember taking deep breaths-and that is all they were, breaths. I remember eating food and that’s what it was-food. And I could eat anything. And I could swallow it. And I could run. Run free, with strength, endurance, breath, air. I can still close my eyes and picture my home.
And maybe I will never go home again. And maybe grandma won’t. We might both have to say goodbye to our homes. But we can make new ones. And no, these new homes we build, they will be nothing like the ones we used to reside in. But we can take pieces with us. Grandma can have her chair and her pictures. I can have moments where it doesn’t hurt to breath, where I laugh so hard I forget the pain.
But there is one thing we will carry with us no matter what home we reside in-and that is our souls. Grandma’s soul and spirit live within her wherever she goes. It glows and glistens no matter how dark the situation or how dark the room. And what’s even better, is since this illness fell upon me, pieces of my soul are grandma’s soul. We’ve shared the pain, the loss, the moments of silence where there are no possible words that can be said-where just being there together means more than any word we can try to put to the innate understanding going on between two people. I am thankful for the piece of my soul that is grandma’s. Maybe that’s what this all is.
I lost a lot. Some may say I lost everything. But isn’t that what happens as we get older? We shed. We change homes, change partners, move farther distances from our families, but we leave pieces of our souls along the way. I left a piece of my soul on the bathroom floor of that college apartment sophomore year on the day I collapsed. But I also left a piece of my soul in the backyard I played in when I was a little girl, when my imagination world was all I knew. And I left a piece of my soul with grandma, and the connection we have not just because we are related, but because we both exist in this world. And having a piece of grandma’s soul? Well, if I had to travel over to this world to get it, the journey was well worth the reward. Carrying that with me gives me a piece of home I would have never had otherwise. Because grandma, in sick world or normal world-she is home.


Thursday, October 7, 2010

For Brooke

"Life can change your direction, even when you didn't plan it
All you can do it handle it, worst thing you can do is panic
Use it to your advantage, avoid insanity manage
To conquer, every obstacle, make impossible possible
Even when winning's illogical, losing's still far from optional"

There are many things I don't understand. Many. Some I may understand with time and age. Some answers may appear one day. But there is one thing I will never understand.

Why do bad things happen to good people?

I simply do not know.

There is a woman. A kind hearted, compassionate, strong woman who is a friend of mine. And she is very ill right now. She is, as her best friend Tate refers to her, one of our "endo sisters". Which means, she, like many of the women in our "group" has this terrible disease called endometriosis. Unfortunately it's not a very well known disease. One that is quiet in society but loud in our bodies. The reasons we are sisters..well, there are so many reasons..but I guess to sum it up in the best way possible..there are no words for what we go through. There are no words to describe the debilitating pain that wakes us in the middle of the night. There are no words to describe the fear we feel over the idea that we won't be able to have children. There are no words for how many years we have tried to find relief-all of the hope we have put into it, and all of the despair we have felt when medicine failed us. Our bodies have failed us, doctors have failed us, medicine has failed us. But one thing that hasn't failed-our faith, devotion, encouragement, and hope for each other. This group of "endo sisters", many of which have endometriosis, and several others who have diseases much like it, is made up of the strongest women I have ever known. And our support for each other, even from a distance, is more real than many friendships we have known throughout our lifetime.

Brooke went in for her 6th surgery on October 1st, hoping to relieve some of the pain that she has been feeling for so long. What should have been a surgery that would bring hope and relief, turned into tragedy. The surgeons cut the artery in her leg, and Brooke nearly lost her life. She has been in the ICU for 6 days and has had a total of 14 blood transfusions. She had to go back in for surgery to remove 3 blood clots. Her blood is low in magnesium. She is exhausted. But, just a few hours out of that first tragic surgery, 9 blood transfusions in, all of us holding our breathe, waiting to hear how she is doing..Brooke reaches out. Even in her own tragedy, she sends us messages of hope-asking how we are doing, still encouraging us to fight the fight-when she is the one who is fighting the hardest battle of her life. One of the things she said still echoes inside my head and my heart..

"I want to live more than anything."

Brooke has one of the strongest, most endearing spirits I have known. The doctors told her that she is here for a reason, that God has a plan for her. And he does.

Here's the thing-Brooke is an angel. Plain and simple. God doesn't just have a plan. God took Brooke in his hands long ago, and made her His. Made her His angel. She, like many of the women I have met along this journey, is an angel. She came into our lives and made us stronger. She gave us hope. She showed us what strength and perseverance is. She gave us a gift that no one else could give.

And right now, she needs us. So, I call upon the angels. The ones in heaven, and the ones here on Earth-you, the members of the Chronically Ill Club, you angels on earth. Please pray for our fellow angel. She still has work to do here.

We love you Brooke.
And to you, and my endo sisters
and my Chronically Ill Club

I'm here. I'm with you.
"Even if I lose the game
I'm all in.
I'm all in for life."

Saturday, October 2, 2010

From useless to useful

Seize the moments of happiness, love and be loved. That is the only reality in the world, all else is folly. It is the one thing we are interested in here. –Leo Tolstoy

I could start this blog with how difficult things have been. But, I won’t.

I have decided, for this moment, that I will not speak of how bad things are, but what good I am still finding. Right now, my body is out of control. But, I will take control of what I can. And that is my happiness.

My grandmother is in the hospital. She is dear to my heart, not just because she is my grandmother, but because we share so much. My mother tells me how much I remind her of my grandmother, and when I tell friends stories of her spunkiness, they laugh and say “wow, future Laura.” Grandma and I not only share spunkiness, but we share one of my illnesses as well. Therefore when Grandma is hurting, it hits a little harder-because I feel her pain. Literally.

Today I was feeling sorry for myself. It has been a few weeks since I have been able to do much of anything, and I have found myself over the past few days going into my bedroom and crying on my bed. I don’t want anyone to see me. I don’t want anyone to comfort me. I want to be alone, in this space, and weep for everything I have lost. I weep like a small child over my frustrations, I say to myself over and over again “you are more than this, you were supposed to be so much more than this.” I obsess, and obsess, and obsess until there is a new word for how much I am obsessing.

I hear my mom on the phone with my grandma. “Of course you will get better. Why don’t you think so? Yes, yes you are getting better I can tell.”

My poor mother was just saying these words to me about 15 minutes ago, and now she is saying them to my grandmother. Same illness. Same pain. The only difference is, she is 80 and I am 25.

My skin feels hot as my emotions flood to my face. I feel helpless. I should be there right now. I should be there with my Grandma. And I should be able to help my mom. And I should be able to do more than this. I should be able to get dressed, take a shower, get in my car and drive down there to see my Grandma.

Should. Should. Should.

What if she won’t be here for the holidays. What if I’m missing this time with her. DAMN THIS ILLNESS JUST LET ME LIVE! What if she doesn’t get to see me graduate and marry. What if I don’t even get to do those things at all?

What if? What if?

My mom leaves to see my grandma, and I once again retreat to my room. I pace, then sit. I touch my arm. Pinch my skin. It doesn’t even feel like my skin anymore. I look at myself in the mirror, and touch my face. I don’t recognize this face anymore. It is gaunt, discolored, tired. What will you ever do? Who will you ever be? Useless. I feel useless.

And that is just something I cannot be. Today I cannot do much of anything. But there must be something I can do. Call her, Laura. At least call her. I’m afraid that if I call her I will break down in tears and make her feel worse. How could I even make her feel better when I am so miserable myself?

I sit with the phone in my hand for some time, trying to prepare myself. The phone rings, my grandma picks up and in an almost unrecognizable, raspy voice says, “Hello?”

“Hi Gram, it’s –“

“Hi sweetheart!” Her voice completely changes. Even with several girls as grandchildren she can pick my voice out. Even our moms will mistake Samantha (my cousin) and I on the phone.

“Oh it’s my granddaughter!” I hear her exclaim to the nurse. Her voice completely changed. I smile on the other end of the phone. We talk for a while. She of course asks me a thousand times how I am feeling, if I am eating. I ask her the same.

“You understand me,” she says, “we understand each other.”

And now I get it. I didn’t need to go anywhere today to be “useful”. I didn’t even need to get out of bed today if I couldn’t. Because I did what some (especially those in the chronically ill world) might consider one of the most important things someone could do with their day-I spoke to someone who genuinely knew I understood them. And only because we share this illness could grandma feel completely understood.

This illness is brutal, but I share it with a woman who also shares my spunkiness, my sensitivity, and my stubbornness (for better or worse). And that, on this rainy afternoon, makes it worth it.

Worth it. Worth it. Worth it.

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 better..it 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 note..to 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 day..it happened in the rain.

Yoga

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 breath..my 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?