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.