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.
You are the beauty you thought you’d miss.

Sunday, December 5, 2010


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.