Sunday, December 21, 2008

"The Luckiest"

I haven't written in my journal in the last several days, so I am blogging out of turn, but I will write in my journal after I finish writing this. But right now, this is more important.

I love Ben Folds. Recently his music has been popping up in my life - and I always pay attention to the music popping up in my life. A friend of mine recently met Ben Folds and recorded a song for his upcoming album. While making dinner for the benefit we listened to "Rockin' the Suburbs," and I heard an A Capella group perform "The Luckiest" last weekend. "The Luckiest" has been one of my favorite songs for a long time. I often write about how lucky I am - and I truly am lucky. Today I had a hard time feeling lucky until the end of the day.

I woke up this morning and decided to check my voicemail. On my land line I usually let my messages build until there are about 30, and then I go through and delete them. I knew I only had one or two, but strangely I decided to check them anyways. And there, in my inbox was a message that is the root of my fear of answering machines. The message was from Dan, my friend Janel's fiancé. When I heard his voice, I knew something was wrong. Then his voice from the voicemail informed me that my friend had passed away on December 11th and that the memorial ceremony was today.

I was stunned. I immediately called Dan to try and sort out what had happened. Janel was never very good at keeping track of my phone number. She kept losing it. Dan found my number last night and called to inform me. On the night she died a relative was staying with her because Dan works at night. She had been feeling ill and increased her O2 - and figured it was because of the cold. She was due for a tune-up soon, so would be going to the hospital and they would figure things out. There was no indication that anything was wrong, but in the morning she was gone. The doctor who did the autopsy concluded that it must have been a mucus plug and she had pneumonia.

I was stunned. I called my dad to try and get some support because Darin was still sleeping. Dad wasn't surprised. Neither was Mom. They didn't react like I thought they would. I slept all day - maybe some of it was to avoid dealing with the pain. It didn't hit me as being real until I was watching movies with my friends this evening. I cried the entire time. I pretended to be asleep so that no one would notice I was crying.

When we had watched two movies and people were sitting around talking, I was snotty. I was a brat. I do that - I get really mean when I'm in pain. Eventually, someone said something about dying in their sleep, and I turned to Darin and said, "That's not funny. That's how Janel died." To complicate things, my friend Janelle was on my other side. I finally had to clarify what I had said to someone, and I ended up getting big hugs and cuddles, which, as it turns out, was all I wanted in the first place.

I wanted some reassurance. And while I know that no one felt they could say anything comforting - just recognizing that this is hard for me is all I need. On my own I come to the conclusions that she and I aren't the same person. I can live past 27. I can be proactive in my care and I can just have a different story line. CF is different for every person - despite how similar we all seem.

This is my 5th CF death in a year. I have known 5 people who have died of CF. I was only able to attend two of the services - other circumstances prevented me from attending the last three. Janel's service was today, and I learned about it less than two hours before it started, and she lived almost two hours away. I was in my PJs when I heard the news.

CF deaths are hard. Cystic fibrosis is awful. What haunts me most about the way Janel left us was that she didn't know how sick she was. There's something about it that I find strange. When I heard she had passed away, I assumed she was on D6/5 with the nurses and doctors doing all they could to make her better again - but she passed away in her sleep. The doctor who did the autopsy said she had pneumonia - but CFers always have pneumonia. That's not a cause of death. That's something I live with everyday. I want to know why she died. I want to know what happened so that it won't happen to me. She died in her own bed in her sleep.

I live by myself.

I wrote Christmas cards this year trying to express how much my friends mean to me. I don't think I did a fabulous job, but I hope they know how much I love them anyways. I have a lot of very amazing, reliable friends who really care about me. I know Janel didn't have the same kind of group of friends. She was often lonely - especially when she was in the hospital. That's how we met. She wandered into my room one day.

It was my first hospitalization for my lungs, and one day she just strolled in and introduced herself. That hospitalization I spent most of my time with her. We sat out on the terrace on the 4th floor because the weather was nice. We talked about everything and she soon became my guide in the CF world. She told me the truth about things - things the doctors couldn't know. She told me about ports, and sinus surgeries (she had 11, I've only had 4, but at the time I'd only had one), and blood gasses, and getting evaluated for transplant, and going on oxygen, and probably most importantly she helped me transfer into the adult world of CF. I was still a pediatric patient when I met her. She told me about the nurse coordinator, the social worker, the doctors, the nurses on the pulmonary floor, the RTs, and probably most importantly, she told me about the CF group. She was the reason I found out about it, and the CF group changed my life. Knowing people with CF changed my life. Janel changed my life.

Later we would drift apart. She was searching for support I couldn't give her. I tried. I always try to be supportive and do everything I can, but it got to a point where it was stressing me out and having an impact on my health. It didn't mean I didn't stop caring about her - it meant that I had to distance myself because I had to put myself first. And now I feel guilty about it.

She didn't have the kind of support I do. I have my parents and my brother and all my wonderful friends. But she did have a fiancé/husband. I visited Janel in the hospital on their 10th anniversary. Dan was there too, and she was happy.

She was older than me, and while I always got the sense that she was much sicker than me, when I saw her lung function tests, they weren't very different from my own. I saw how she lived. I saw how lonely she was and I know I'm lucky. I have the best friends on the planet. I have a loving if slightly dysfunctional family. My family has some problems, but I know that when I am sick they will always be there at my bedside. And I have me. I am learning to be my own best friend, to be able to get myself through anything in case there is no one around.

"And I know that I am The Luckiest."


Chris S. said...

What a way to find out... So sorry for your loss. Love you!

Anonymous said...

oh, I'm so sorry for your loss.

I can't imagine what it feels like to lose a friend to CF, but I feel every cf'ers death from a mom's perspective.

The hardest part of your post for me to read was that your parents weren't surprised. It makes sense, I know. CF'ers die. But I will NEVER stop being surprised and wounded when someone dies too young

An active and very taleted member of the CF website that I visit alot died this week, too. These things always go in waves for me, usually sending me into a downward spiral. Sigh.

You certainly have my sympathies on the loss of your friend.


Waiting For Ling-Ling said...

I'm so sorry-Wish I could write something to make it better...

By the way-I am a teacher that has a students with CF. I didn't know much about CF until his mom wrote me a note letting me know-she wanted me to be aware in case anything came up with him. When his mom told me about his disease, I made sure I became informed-this is how I found your blog. It has been very helpful for me to read and get a perspective of what it might be like to live with CF. Thank you for your candor. I wish you the best,

Tiffany said...

sux. i am so sorry. the thing about being a CFer (and for me now a post-transplant person) is that if we choose to run in our circles, we will experience loss. Like you, I have lost too many friends from CF (or post tx complications.) But, those people were worth every tear because of the joy and lessons they gave to me while they were here. CF folks are so often witty and smart--it's better to have loved and lost and all you agree?
love and comfort to you now.

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