I hung out with the other Young Life leaders last night. Talking to a friend today, I admitted that I’m jealous of everyone who has gotten to do fun things or, well, anything the last 7 months. Jealousy is a new emotion for me. I’m really, really good at talking myself out of feelings. In the past, when I felt a twinge of envy over someone else’s relationship, stuff, experience, looks etc., I was always able to convince myself that I was okay because I had x, y, or z going for me. Those excuses don’t fly anymore. I find it almost impossible to tell an amusing story from the last 7 months because, well, unless you like medical stories, you won’t be amused. You might be interested, fascinated, even, but it’s not amusing. I’m the example of what everyone in their 20’s wants to avoid.
Sure, friends can get in motorcycle or skateboarding accidents and spend some time with medical personnel, but a weird, rare, difficult to explain yet debilitating illness is just scary. I’m sure I can be used as a reason why 20-somethings who don’t do extreme sports should have health insurance. But my friends don’t want to be reminded of that every time they see me. They have good, funny stories about houseboating, camp, dating, church and just, life. I have a scary knowledge of my favorite tv shows and the healthcare system.
I’d like to be pretty again
And self confident
I just want to be a different person than I am right now. 30 lbs lighter. 10x happier, twice as energetic, in 1/10th the pain. I’m just not I a place where I can figure anything out. I know it’s the right call to not be an active YL leader, but it’s hard. I feel purposeless. I’m having a hard time getting up in the morning because I can’t remember what I should be doing. I’m down, I’m tired, and I’m confused
Monday, September 15, 2008
Thursday, September 11, 2008
Forgetting
7 years ago my life changed. On September 8, 2001, my friend Andrew committed suicide. It still seems odd to type those words, to say the phrase "suicide," and realize how much his death changed me. I found out the following Monday, September 10th, and, along with the rest of my friends, mourned him as we tried to muddle through the first Monday of school. The next day my dad followed me to school, wanting to ensure I didn't freak out or pull over to cry as I headed off to first period. Kevin & Bean on KROQ were serious for once, talking about things that made no sense, so I switched to a news station.
The news was surreal. The knowledge that my sister lived a few blocks away from the towers was in the back of my mind, but I was still overwhelmed with grief about my friend, still focused on the fact that he wouldn't be sitting next to me during our AP US test that morning. When I got to school and my dad told me he'd call if he heard something about my sister, it sunk in a bit further. But, like the rest of my friends, I was still focused on Andy's death--searching for a reason.
The AP US test was unremarkable, but about 40 minutes in my cell phone rang, loud and clear in the silent classroom. The teacher came over to yell at me as I answered and hung up.
"You can't have cell phones in school!" She hissed as she motioned to take my phone away.
"You don't understand. My sister is okay."
My teacher staggered back and whispered "Calee is in New York..."
Her words trailed off as understanding passed over her face. Suddenly, the news that she had refused to acknowledge due to our test became personal. It wasn't just nameless New Yorkers being affected, it was one of her former students.
Selfishly, I stuck with the knowledge that my sister was okay, assumed she was fine because she hadn't been struck by debris. I chose not to think about national tragedy because there was something far more concrete in my world---the first funeral for a friend, a peer. Nearly a month passed before it sunk in that thousands of people had died.
The day I found out Andy died I wrote a pithy free form poem about the loss of innocence. It is true that my friends and I lost our rose-colored glasses that day. Suddenly, being a good kid, a smart kid, an athletic kid, a ______ kid, wasn't enough to keep us safe from death. Even now it's so easy to focus on my self-centered high school self instead of on the fact that thousands of people around the country experienced a loss of innocence, the first large attack on American soil in years. People cried together, prayed together, clung together. It's what we do when things get scary.
I'm not very close to the friends I clung to during those weeks and months after Andy died. We're facebook friends, smile at each other in the grocery store, and might get together for a cup of coffee. Many Americans don't know the people they stood next to at memorials or church services in those days, but everyone who was old enough to watch the images on the screen will always have a few surrounding memories to fall back on.
A year ago, my Master Teacher spoke to her class after the school-wide moment of silence and briefly, succinctly, beautifully described why we paused to children who were in diapers when the planes crashed. She talked about how we don't need to be afraid, but it's good to remember hard things and see where we were. Thinking about the "never forget" banners posted around the city helped me remember, but also makes me wonder what people did on December 7, 1948. We remember 7 years later, for many reasons, but I can't help but wonder, at what point do we stop remembering, relegate tragedy-whether personal or national- to history and, well, move on?
The news was surreal. The knowledge that my sister lived a few blocks away from the towers was in the back of my mind, but I was still overwhelmed with grief about my friend, still focused on the fact that he wouldn't be sitting next to me during our AP US test that morning. When I got to school and my dad told me he'd call if he heard something about my sister, it sunk in a bit further. But, like the rest of my friends, I was still focused on Andy's death--searching for a reason.
The AP US test was unremarkable, but about 40 minutes in my cell phone rang, loud and clear in the silent classroom. The teacher came over to yell at me as I answered and hung up.
"You can't have cell phones in school!" She hissed as she motioned to take my phone away.
"You don't understand. My sister is okay."
My teacher staggered back and whispered "Calee is in New York..."
Her words trailed off as understanding passed over her face. Suddenly, the news that she had refused to acknowledge due to our test became personal. It wasn't just nameless New Yorkers being affected, it was one of her former students.
Selfishly, I stuck with the knowledge that my sister was okay, assumed she was fine because she hadn't been struck by debris. I chose not to think about national tragedy because there was something far more concrete in my world---the first funeral for a friend, a peer. Nearly a month passed before it sunk in that thousands of people had died.
The day I found out Andy died I wrote a pithy free form poem about the loss of innocence. It is true that my friends and I lost our rose-colored glasses that day. Suddenly, being a good kid, a smart kid, an athletic kid, a ______ kid, wasn't enough to keep us safe from death. Even now it's so easy to focus on my self-centered high school self instead of on the fact that thousands of people around the country experienced a loss of innocence, the first large attack on American soil in years. People cried together, prayed together, clung together. It's what we do when things get scary.
I'm not very close to the friends I clung to during those weeks and months after Andy died. We're facebook friends, smile at each other in the grocery store, and might get together for a cup of coffee. Many Americans don't know the people they stood next to at memorials or church services in those days, but everyone who was old enough to watch the images on the screen will always have a few surrounding memories to fall back on.
A year ago, my Master Teacher spoke to her class after the school-wide moment of silence and briefly, succinctly, beautifully described why we paused to children who were in diapers when the planes crashed. She talked about how we don't need to be afraid, but it's good to remember hard things and see where we were. Thinking about the "never forget" banners posted around the city helped me remember, but also makes me wonder what people did on December 7, 1948. We remember 7 years later, for many reasons, but I can't help but wonder, at what point do we stop remembering, relegate tragedy-whether personal or national- to history and, well, move on?
Monday, September 8, 2008
My Dilemma
I think I should adopt a method of titling blogs like Scrubs or Friends episodes: I could begin every title with "my" or "the one with." Or I could stop watching so much tv.
Today is the first day of National Invisible Chronic Illness Awareness Week 2008. The NICIA website says "It is sometimes a dilemma whether to make a point of "showing" your illness. You want to appear "normal" and to fit in, not stand out and be noticed. You also want people to recognize and understand your problems. Some people struggle with this. Should they use a cane and be noticed as sick, or avoid it and be misunderstood? How much do you let people know?"
Up to this point, anyone who has seen me has known that I've been ill. The cane and wheelchair made the point for me. I didn't get dirty looks for parking in a blue spot, and I didn't really have to discuss it. Most people seemed very uncomfortable asking what had happened, and I chose to believe that the people rudely staring in the grocery store assumed I was recovering from an extreme rock climbing or snow-shoeing accident.
But now, thankfully, I'm able to be up and about for anywhere between 2 and 8 hours a day.... without the cane. I went to a movie on Saturday and walked slowly up and down the stairs. Instead of encouraging "you can do it!" looks, I heard frustrated sighs as I clung to the railing. It's not PC to make fun of the disabled, but our hurried culture does not look kindly on those who move slowly. It seemed odd to leave my cane in the car at church on Sunday night, and I imagined people around me wondering why a seemingly healthy person needed to park up front, needed to sit down during the songs, needed to lean heavily on steady things in order to remain upright.
It finally happened. I'm invisible. I really do love it, because even though I'm still in pain, the good moments make me believe that the day will soon come when I don't have to worry about falling or getting too tired that I'm not sure I can drive home. I can't wait until I can go months or years without a Tylenol, much less the heavier stuff I've been on recently. It will be awesome to sleep through the night without medication. I have hope that someday I'll be back to "normal," but for millions of people around the world, the hope of "normal" lies in the hands of researchers for drug companies that have little motivation of finding a cure for the many invisible illnesses.
I've adopted a method of disclosure through facebook and my blog that, I hope, may help people communicate with those around them that struggle with disease, disorders, and chronic pain. I'll admit it, I used to be one of those impatient people who grew upset when people walked slow, and I can't remember if I shot dirty looks at seemingly healthy people leaving handicapped spaces, but due to my comparatively brief experiences in the world of illness, I don't think I'll ever look at people the same again.
Today is the first day of National Invisible Chronic Illness Awareness Week 2008. The NICIA website says "It is sometimes a dilemma whether to make a point of "showing" your illness. You want to appear "normal" and to fit in, not stand out and be noticed. You also want people to recognize and understand your problems. Some people struggle with this. Should they use a cane and be noticed as sick, or avoid it and be misunderstood? How much do you let people know?"
Up to this point, anyone who has seen me has known that I've been ill. The cane and wheelchair made the point for me. I didn't get dirty looks for parking in a blue spot, and I didn't really have to discuss it. Most people seemed very uncomfortable asking what had happened, and I chose to believe that the people rudely staring in the grocery store assumed I was recovering from an extreme rock climbing or snow-shoeing accident.
But now, thankfully, I'm able to be up and about for anywhere between 2 and 8 hours a day.... without the cane. I went to a movie on Saturday and walked slowly up and down the stairs. Instead of encouraging "you can do it!" looks, I heard frustrated sighs as I clung to the railing. It's not PC to make fun of the disabled, but our hurried culture does not look kindly on those who move slowly. It seemed odd to leave my cane in the car at church on Sunday night, and I imagined people around me wondering why a seemingly healthy person needed to park up front, needed to sit down during the songs, needed to lean heavily on steady things in order to remain upright.
It finally happened. I'm invisible. I really do love it, because even though I'm still in pain, the good moments make me believe that the day will soon come when I don't have to worry about falling or getting too tired that I'm not sure I can drive home. I can't wait until I can go months or years without a Tylenol, much less the heavier stuff I've been on recently. It will be awesome to sleep through the night without medication. I have hope that someday I'll be back to "normal," but for millions of people around the world, the hope of "normal" lies in the hands of researchers for drug companies that have little motivation of finding a cure for the many invisible illnesses.
I've adopted a method of disclosure through facebook and my blog that, I hope, may help people communicate with those around them that struggle with disease, disorders, and chronic pain. I'll admit it, I used to be one of those impatient people who grew upset when people walked slow, and I can't remember if I shot dirty looks at seemingly healthy people leaving handicapped spaces, but due to my comparatively brief experiences in the world of illness, I don't think I'll ever look at people the same again.
Wednesday, September 3, 2008
Fear
I'm the first to admit it. I'm scared of getting my results back from tests. I typically get a test the first of the week and see my doctor on Friday, so I spend at least a week worrying. The weekend prior to the test I try to eat "extra" good so my cholesterol and triglycerides are better. The actual blood/urine test is fine, I get along quite well with the people at my hospital's outpatient center. I genuinely like both my primary care doctor and my nephrologist. But it's the days waiting to see a doctor. Will he discover something else is wrong? Will she prescribe something new with another side effect? Will the proteins go up? down? Is that swelling or just my imagination?
Friday is my first visit post-Prednisone. 6 months was plenty, thank you very much, and I know statistically I'm due for a relapse of my MCD about now, but I'm just wondering if, after enough visits or enough months without a relapse anyone can reach the point where they can walk into that office or see the doctor's number on the caller ID without being afraid.
You see, my dad gave a sermon on fear this last Sunday. It sparked family discussions and caused me (and hopefully some others in the church) to think about what we're really afraid of.
Anyone I've spoken with in the last few months has heard me talk about my newfound love and appreciation for Doctor Who. But there were some episodes (namely Blink) that scared me so much that I went online and read the episode synopsis before finishing it. I still got to see the incredibly creepy moments, but because I knew how the story ended, I wasn't terrified anymore.
What a joy it is to live my life knowing how the story ends. Sure, I'm worried about test results and when I'm going to finish at Pepperdine and if I'm EVER going to get a job, but I know how my story ends. It's very easy for me to get caught up in the day to day---my frustrations with my former physical therapist, my fear of the future--but my Redeemer lives. My hope is built on something more tangible than my tenuous health, more firm than my relationships or credibility as teacher. I've seen the end of my episode--and just like every episode of Doctor Who--where the Doctor saves the day in an unexpected way--I'l be okay.
Friday is my first visit post-Prednisone. 6 months was plenty, thank you very much, and I know statistically I'm due for a relapse of my MCD about now, but I'm just wondering if, after enough visits or enough months without a relapse anyone can reach the point where they can walk into that office or see the doctor's number on the caller ID without being afraid.
You see, my dad gave a sermon on fear this last Sunday. It sparked family discussions and caused me (and hopefully some others in the church) to think about what we're really afraid of.
Anyone I've spoken with in the last few months has heard me talk about my newfound love and appreciation for Doctor Who. But there were some episodes (namely Blink) that scared me so much that I went online and read the episode synopsis before finishing it. I still got to see the incredibly creepy moments, but because I knew how the story ended, I wasn't terrified anymore.
What a joy it is to live my life knowing how the story ends. Sure, I'm worried about test results and when I'm going to finish at Pepperdine and if I'm EVER going to get a job, but I know how my story ends. It's very easy for me to get caught up in the day to day---my frustrations with my former physical therapist, my fear of the future--but my Redeemer lives. My hope is built on something more tangible than my tenuous health, more firm than my relationships or credibility as teacher. I've seen the end of my episode--and just like every episode of Doctor Who--where the Doctor saves the day in an unexpected way--I'l be okay.
Subscribe to:
Posts (Atom)