Wednesday, April 15, 2009

"Rayando el Sol"

I am reaching for something that isn't there. I'm grasping at straws. Climbing a never ending stairway. "Rayando el Sol."

"Rayando el Sol" is the title of my favorite song by ManĂ¡ - my favorite of all the Hispanic/Latin music, and right up there in my favorite bands of all time. If I didn't love so many songs, I could say with more certainty that "Rayando el Sol" is my favorite song. Translated it means something like reaching or scratching for the sun.

I've been meaning to write this post for a long time, but I haven't had the words. I still don't know if I have the right words, but I'm going to try. So grab yourself a candybar, sit back, and get comfy because this is going to be a long post. It's one of those posts that means a lot to me - whether or not anyone ever reads it.

I'm not going to give up. I'm not going to stop hoping that someday people who don't have CF will understand me. I'm not going to stop trying to make the doctors and nurses understand. I won't let them get away with not treating us the way we deserve to be treated. I won't stop raising money for a cure. I won't stop sending emails to everyone I know and everyone I meet trying to get them to care about my cause, my life.

No matter how hard my fight gets, no matter how much pain I'm in, I don't want to give up. I won't give up hoping that I will get better tomorrow; if I wait long enough I will feel better. And I'm not going to give up hoping that someday they will find a cure for this awful disease.

I don't like when people complain about little things because I don't complain about little things. I don't like when people give up because I don't understand how anyone could give up so easily when I'm fighting for my life. And I don't like when people can't see a situation from someone else's perspective because all I have is perspective. I don't know what it's like to be normal.

Tonight I watched the final episode of "ER." Just like the show began, it ended brilliantly. It was sad. A lot of death, which meant a lot of me crying. The saddest for me was the death of an elderly man's wife. They had known each other 72 years and the daughter explained to a nurse how she never got along with her mother and that she had been mean but she had cried on the way to the hospital because, "What does it really matter now?" My grandmother turns 90 this year, and she and my grandfather will have been married 70 years in September. I can't even imagine 70 years, let alone being with someone that long. I've known since I was very young that 70 is a number I'm not going to see. But somewhere in the back of my mind I still have hope that I will live to be the crazy craft lady in the nursing home. Daring my friends to join me in wheelchair races and sneaking candy that I, a diabetic, shouldn't eat.

The situation in the show reminded me so much of my family. The grandparents' age, the sick grandmother and the crazy mother - somehow it hit home. There were other things in the episode, too, like the return of Dr. Greene's daughter. But mainly, I was crying because I know my mother has given up hope.

I think my mother gave up hoping a long time ago, but it has hit me harder recently. Sure, she cancelled my 17th AND 18th birthdays and refused to wish me happy birthday either year, but I thought maybe she's just weird. I could say outloud that I knew she did it because she didn't want me to get older because each year older is closer to death. I know she has always been skeptical about the CF Foundation because in 1989 they promised a cure within 5 years and now it's 20 years later and they are saying "we're really close." So I understand her hesitance to believe them - but to give up all hope? This time the foundation has graphs and charts and I really want to believe them that this is going to help, that it's going to make us better and prevent the kids from getting sick.

My mother has given up all hope. And recently she's not afraid to tell me. First she told me that fundraising is useless because they will never find a cure. She's said that before, so I just tried to ignore it. She said that she won't donate this year because it's no longer her responsibility; it's the responsibility of "the new parents." Every year she says she won't donate, and every year she does. But telling me it's no longer her "responsibility" really stung because I feel that she doesn't care anymore. She thinks I'm going to die and that is that. When I die will she donate in my memory?

A couple weeks ago my mother said something that convinced me that she has absolutely no hope at all. She thinks I'm going to die soon. She and my dad were on vacation in New Mexico and Mom decided that it'd be a nice place to retire. She told me this, and I asked, "What about me?" because I really like where I live and I depend on my parents for a lot of support (and they do my laundry, too). I was shocked that she would think of moving so far away since she worries if I don't call every day. Her response was, "Well, if you're still alive I GUESS you can come with us."

Immediately the waterworks flowed from my eyes and I couldn't make it stop. It hurt so deeply I didn't know what to do. I quickly ended the conversation with my mom and still sobbing, called my little brother. I tried to take his sage advice. He told me to ignore her. I find it hard to ignore the person who is supposed to be my biggest support and how she has already decided I'm going to die.

My brother's other wisdom came out, "Well, I'm off to play "whose mother is crazier" with my friends because I like winning." So I've played the game with my friends, and it doesn't do much for me.

Is my mother right to doubt the CF Foundation and the researchers? Am I a fool for being so hopeful and working so hard because I really want those medications before I need a lung transplant? I want the graphs and promising studies to be the truth; does that make me stupid? Am I silly to want something that might never happen? Is it awful that I have my own belief system so that I can pray for a treatment to keep me healthy enough so that I won't need a lung transplant? Does hoping hurt more than accepting my own fate?

But what would I be without hope? I would be sad and angry. I wouldn't have a purpose for living. My purpose for living is fighting - on my own against my own cystic fibrosis and with the Foundation for others living with cystic fibrosis.

The question is to hope or not to hope? I choose to hope. I may just be "Rayando el Sol," but at least I have something to live for.


Emily said...

You're right. Without hope, there isn't anything to live for.

Hoping does hurt. But I'd take a struggle to keep hoping over giving up any day.

I'm glad you feel that way too.

We're all hoping for you. :)

gahitstoni said...

The fact that your mother even remotely hit on the topic of death so nonchalantly in front of you makes me think you might have the bitchiest mother in the world. A real parent doesn't do that and neither of my parents do that. It's just not right. I don't rely on my parents as much as you just yet, but I'm sure that even when I can't do the simplest tasks, they would be there and they would NOT move away from me. They would probably move closer. I just don't understand your mother. Just keep in mind, you fight every day and in all reality, you can get by on your own. I know a lot of people with CF worse than you and I have it that get by on their own regardless of the amount of support they do or don't have. So what I'm trying to really say is even if someone gives up on you, don't give up on yourself, because you would just be letting yourself down and putting your hard work to waste.

Waiting For Ling-Ling said...

Wow! "Delurking" temporarily because you really struck a nerve...Hope can never never die-I admire your courage and drive in spite of the obstacles that you face daily. On the mom front-I just feel very sorry for your mom. It sounds to me like she goes into major defense mechanism. How does one deal with the death of one's child? I too am a mother to a 23 year old. She is my life, greatest love, and my biggest torment! Since she was a little girl I have worried more about her, obssessed about stuff that was happening to her and clashed with her! Of course she thinks that the sun rises and sets with her dad-he's just perfect in her eyes. He knows exactly what to say and how to say it. Yet, when the poop hits the fan, I'm the one she runs to. I've been the keeper or her troubles and the one that solves her problems. Believe me a mother/daughter relationship is always complicated-and I haven't thrown into this mix a sick daughter! I don't know what I would do if my daughter had a disease like you do...would I try to prepare myself for an outcome that is so contrary to what is natural that I seemed to be uncaring and callous? Would my anger at having to see my child go through what you go through eventually make me so bitter that I seemed to people as being crazy and heartless? I don't know...everyone deals with life's curveballs differently, yet the fact that your mom continues to donate even though she probably feels betrayed by CF probably gives you a hint that her hope has not been completely extinguished. Hang in there-

Clay said...

im sorry carla my mom said she will adopt you if you want :)

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