Archive for April, 2010

Cystic Fibrosis and my Brother, or Why I Didn’t Read This One Blog

This morning I was, admittedly, slacking off. I have articles to write, jobs to apply for, research to do. But I was surfing Twitter. Sometimes I find nuggets of knowledge or inspiration, more often I find things like an architectural analysis of couch-cushion forts. And then I stumbled across a Tweet that included this: “Death at 25: Blogging at the End of a Life.” The End of a Life. At 25. I normally wouldn’t click on something so morbid, but then I recognized something in the url for the original page: 65 Roses. I got goosebumps. A 25 year old dying of Cystic Fibrosis. It snapped me out of my mindless surfing and reminded me of something REALLY important I needed to do today: start my annual fund raising campaign.

65 Roses is a moniker used by the Cystic Fibrosis Foundation, coined because many children with CF cannot pronounce the name of their illness. Why do I know this? Because my brother, Jonathan, lives with Cystic Fibrosis. CF is a (currently) incurable genetic disease that causes the lungs to overproduce mucus, the digestive system to under-absorb nutrients, and the immune system to be more susceptible to infection. CF patients take pills to supplement what their pancreas aren’t doing, undergo pulmonary therapies several times a day in order to be able to breathe, and many ultimately end up getting lung transplants.

Life Expectancy
When Jon was born, his lungs collapsed. My parents were told he would never leave the hospital. But he did.

When he came home, we had round-the-clock nursing care in our home, and Jon was on oxygen. Doctors said he probably wouldn’t make it to 10.

When Jon was 7, they discovered the gene that causes CF. His life expectancy was around 15 at the time.

Three years later, Jon turned 10 and earned a black belt in karate. While strong, we were told 25 was what he could expect.

Jon and Liz. They're ridiculously photogenic, even when you're just grabbing a random snapshot.

Jon and LIz. They're ridiculously photogenic, even when you're just grabbing a random snapshot.

Last year, Jon turned 25. The life expectancy for CF patients is now somewhere around 40. I expect him to have a full life and never let a predicted number decide anything for him. He hasn’t yet. But it has changed things.

This summer, Jon and his girlfriend, Liz, are moving to Florida, largely because the warm, humid, salt water-y air will make it easier for him to breathe. He has found that that the Minnesota winters are increasingly challenging for his physical health, so they are moving cross-country to improve his quality of life.

I don’t like to think about the implications of CF in Jon’s life; my family and I have always treated it as a matter of fact. We tried to normalize his treatments so that the respiratory therapies were as much a daily part of life as brushing your teeth. But Jon’s decision to relocate for his health is a reminder of how much the illness can effect his life and the major life decisions he makes.

I think Jon has been lucky; he’s always been healthy as CF patients go. I sometimes read stories like this interactive spread on CF“> in the New York Times, and the symptoms that other patients his age describe are far worse than anything I have seen Jon deal with, except when he has been particularly ill.

I’ll admit, I didn’t read the “End of a Life” blog. I am always devastated to read stories about other CF patients, especially ones who are dying. Especially so young. So I don’t read about young people dying, particularly from this illness. It’s not something I want to think about or focus my energy on. But just seeing the title was a harsh reminder or how lucky Jon has been, and moreover how important the therapies and research to stop this illness are.

Me & Jon, April 2009

Me & Jon, April 2009

Jon is now 26. He is strong, and healthy, and someone I respect and admire for so many things, but most of all for not ever giving up. Hell, he doesn’t even give in. The stories of the other patients make the disease sound awful, terrible, they have symptoms Jon has never had to face. But there’s a reason for that.

Jon may be lucky, but he has also had the unending support of my parents, who took him to appointments and through three rounds of respiratory treatments every day. He has had access to some of the best health care available to CF patients thanks to the research supported by the Cystic Fibrosis Foundation and the funds that they continually raise and put toward the most promising research in the field. Every year I do my part to contribute, by participating in the Great Strides walkathon.

Two years ago I raised $250. Last year I more than doubled that. My goal is to raise at least $1500 this year.

The CFF office in Madison, WI (my hometown and where my family lives) has had to significantly cut its staff this year, which in return reduces the amount of work they are able to do and funds they are able to raise. So I am fundraising both on behalf of my brother and the Madison office; funds I raise this year will be attributed to their numbers.

If you care to support the cause, it’s easy to do online. Just visit my donations page, and remember that even $5 will be a step towards the Great Strides we are working to make in the fight against CF.

jon bw edited

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Finding Myself, or I’m Done Vaguebooking. I Promise.

For the past few weeks I have been the queen of vaguebooking. You know, posting statuses that let people know something is going on with me without actually telling them what it is. The kind of status that provokes people to ask if I’m okay or what is going on. But I promise I haven’t been doing it to get attention. I’ve been doing it because I’ve been feeling so unsure about the ambiguities of my life.

For example, the other night I posted “oh, there I am. Thank god. I was starting to think I might never find me again.” Vague, for sure. Funny thing is, it’s exactly how I felt. That night for the first time in weeks, I stayed in. (When some people get depressed, they lock themselves in their houses. Me? I go out every night and surround myself with people in a vain attempt to ignore my problems. Hello, extrovert.) But I decided it was time to be done with this. I was tired of being tired, of hurting, of doing things I knew I shouldn’t but did anyway. The night before, I’d had a thought process that went something like this: “I’m tired of being depressed –> I should probably stop drinking every night, alcohol’s a depressant, you know –> that’s a depressing thought –> maybe a good bottle of wine will help…” Yeah. So I decided to buy that bottle of wine, have one last night of watching TV and sipping it, and I’d kick myself out of it tomorrow.

And I did.

The next night I spent a few hours doing yoga, meditating, taking a bath, just putting some energy into taking care of myself. I cooked an awesome curry dinner, and invited someone else over to eat it. Taking care of other people is a good way to feel better about yourself. And for the first time in a month, I looked at myself in the mirror and recognized my own face. That sounds kind of weird and overdramatic, but all I’ve been seeing is a sad version of myself. Finally the strong, sure of herself woman was back. She even cracked a bit of a smile.

…and then asked “what have you done to yourself?” Because of course, in the process of being all depressed, I didn’t worry about what I ate. Or drank. And I sure as hell wasn’t exercising.

I’ll admit that I’m a little embarrassed. I was taken aback when my choir director pulled me aside and asked if I was alright after he’d read one of my recent posts. It was touching to know that people do, in fact, read this, and that they’re concerned, but admitting when I’ve been knocked down feels awfully vulnerable. And pathetic. And I’ve wondered a few times as I’ve begun to resume my job search what might happen if a potential employer reads this stuff. (Dear potential employers: I’m all better now. The fact that I’ve applied to you is evidence that my period of mourning is over.) But the reality is, this is how I’ve been feeling. I can’t tell you how many people have emailed me and commented and shared their appreciation for that honesty. Life is hard for everyone, and it’s nice when other people admit it, so we don’t feel like we’re the only ones struggling to figure out adulthood.

And I think it’s good to sit with your feelings for awhile. There’s a lot of pressure in our society to never let anything get you down, to always keep fighting the good fight, and take a pill if you really need that much help to get up in the morning. Sometimes we need to just feel our feelings, so that we can move on from them. Too often we don’t heal wounds, we just ignore them, and they’ll always come back up again. That’s how we create baggage that drags us down in the future. I’d rather have a couple hard weeks of working through something, and then be done with it. Move on with a few lessons learned and a clean slate.

So I had my month of random crying and not taking care of myself and not looking at my bank account. And now I’m back and ready to start kicking ass again. Thank god. And thank my friends for not only putting up with me, but for being supportive and awesome and oh my god I love you guys.

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Doing Better… Kind of… or, How My Life is Like Fight Club

Karl* says that my kind of crazy is like my kind of “bad skiing:” totally manageable. Given that he’s already seen me at pretty much my worst (a few times, actually, I’m awesome…) I can only conclude that he is, himself, kind of crazy. Maybe that’s why it’s** working. He started dating me at what might have been my lowest point in years. Which makes me think I should probably not be dating at all right now, but you know what? Things happen for reasons. I believe in divine timing, or synchronicity, or whatever you want to call it. Point is, that little joy is holding me together right now. Not in a dependent, oh my god I NEED you way, (this is the part where Karl runs for his life) just in a “I have at least one thing I”m looking forward to today” kind of way. And when you’re borderline depressed, sometimes that’s all you need. One thing to get you out of bed in the morning. (Even if I’m counting rolling out at 11:59 as “morning.”) I am grateful for him, but also kind of embarassed. I find myself constantly wanting to apologize for myself by quoting that line from Fight Club, “You met me at a very interesting time in my life.”

Thankfully I’ve been far too down to take any action a la Tyler Durden. Though when I’m upset I do occasionally feel the desire to punch things. My mother realized this when I was in the temper-tantrum throwing stage (which, for me, started around 2 and ended around 22) and taught me to hit pillows and throw balled-up socks at the wall. Which was brilliant, really. Except for the time I hit a hanging picture with the socks and it shattered, and then I got even more upset because my unicorn mirror was broken…

What was my point again? That I’m doing better? Yeah, I am. Kind of. Admittedly I still stayed up until 1 am drinking red wine and watching “Castle” online. (PS: watching murder mysteries right before bed is NEVER a good idea. Really, watching murder mysteries is never a good idea. But with Castle I figure the goodness of watching Nathan Fillion neutralizes the whole thing.) And admittedly I was proud of myself for getting out of bed “early” today. (9:48 a.m.) It’s better than noon, right?

But I am doing better, and here’s why: well, actually here’s the backstory on why: for most of my life prior to turning 24, I was a ginormous ball of stress. I was a perfectionist, an overachiever, an insomniac, and had regular anxiety attacks. The kind of anxiety attacks that would pin me to the ground in the middle of the afternoon, where I would nearly stop breathing and then call my mom and yell at her for not helping me (wonderful daughter, right here. SORRY ‘BOUT THAT, MOM! YOU’RE A FANTASTIC PARENT. Forgive me?) even though there was absolutely nothing she could do since I wouldn’t tell her what was wrong (because I didn’t actually know.) This peaked my sophomore year of college, and the end result was losing a job because I forgot to go to work, losing a boyfriend because I forgot how to be a fun person to be with, and failing a class because I forgot go to go the final. I went into therapy at the school’s psych center, they put me on anxiety meds, and both felt better and hated it.

I decided I didn’t need to be on meds, and as it turns out, I was right. But the only way I was able to get off of them was by taking control. I got my first apartment with a good friend, took ONE job as a campus tour guide, which I really liked and was good at, and that was all I allowed myself to do that summer. No stress, no pressure, no overcommitment. I made myself go running every day, cooked healthy meals for myself, and got 8 hours of sleep every night. I also didn’t  drink alcohol, but, then, I was 20 and didn’t really drink at that point anyway. Thank god. By the time school started again in the fall, I really, actually, had my shit together for the first time in my life. And all on my own. And that felt GOOD.

So when I started losing my shit last week (both figuratively and literally; missing: wallet, camera, sunglasses, pride…) I recognized it. I won’t pretend I’ve been doing everything right, (not hardly) but I started with one thing: exercise. I ran for 20 minutes one day, and 30 the next, and 32 the day after that. (Baby steps.) I bought some produce so I could cook some healthy food. I also bought plane tickets home and registered for a meditation retreat.

Oh, yeah, meditation. That was the thing that really changed my life. I started in 2005. Because even with the exercising and eating well and all that there was still anxiety and underlying stress. It was just manageable. And the meditation helped it go away. Sometimes I write about my meditation here. (Though not often, I’ll admit. Because the whole point of meditation is to not think about it too much.)

I’m still having a rough time. I look at Craigslist and determine that I don’t want to do ANY of the hundreds of jobs listed there. I read ads for Administrative Assistants that talk about being detail-oriented and on time and wonder how on earth I have managed to successfully work those kinds of jobs for nearly ten years, because I am willing to admit that I am neither of those things. I really just want to drink coffee until happy hour and then beer until bed, while I read and blog and watch Buffy.

But I don’t indulge those desires for too long. Because, for one thing, I don’t think Karl would find me so attractive if I gave up on life that way. Neither would I.  And for another, I don’t give up, especially on myself. And for a third, because I know that if I keep taking little steps toward getting my shit together again, I will.

Time for a run. Possibly followed by Buffy.

________________________________ …yes, my blog has footnotes today.

*Karl: this is the first time I’ve posted about him. Or any guy directly, really. He claims he has nothing to hide, so it’s okay. I told him I was more worried about what I might have to hide. Anyway, he’s a guy. A good one. Who seems to like me. And is also possibly the best skiier I have ever seen in person.

**IT: is currently undefined. Dating, I guess. Though for his sake thank god facebook lets you go with “it’s complicated.”

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