Monthly Archives: January 2011

Would You Like a Filter for that Dream, Sir?

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My wife and I visited a new friend this weekend. He has three Harley-Davidson motorcycles in his garage and is quite the collector. The bikes looked pretty inviting standing there ready to go, an adventure waiting to happen.

I know nothing about motorcycles. However, this morning I thought to myself, “I should buy a motorcycle.” I really did. And for about two minutes I believed I could do it. Yes, I thought I could go out and buy a motorcycle and ride it. I pictured myself flying down PCH, speeding past cars and enjoying the ocean air. I was so cool.

Then I remembered I have CF and the dream burst like my lung during an infection. Play the emergency braking and motorcycle crashing against a wall sounds. Dream over.

How did I believe I could maneuver a heavy bike through L.A. traffic, breathing all of those exhaust fumes? I’d be coughing up blood 30 seconds into my first ride. Do you know how difficult it is to ride with the inside of your face mask covered in blood?

These two-minute fantasies are one of my least favorite parts of cystic fibrosis. I have them a lot. Yeah, sure I can fly to Europe on business. (Count to two minutes.) No, I cannot fly to Europe. What was I thinking? I’m a complete idiot. Did I really believe for a minute that I could do that? That it would be smart to take an 11-hour flight? How did I let myself believe it?

It’s almost as if I have the thoughts of a normal healthy person and it takes these thoughts a couple of minutes to reach the “CF filter.” Some thoughts pass through this special strainer just fine – go to McDonalds and buy a McGriddle. Eat the McGriddle. Wish you had one more McGriddle. Other thoughts? Well, they get filtered – ride your Harley to Malibu and meet two Brazilian supermodels who are only interested in a one-afternoon stand.

Oh, yeah, and then there’s the “I have a wife” filter.

Decision making made harder

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Cystic fibrosis has screwed up my ability to make decisions. I was wondering why I’ve taken two months to decide on a used car – haven’t decided yet – when I realized it’s CF’s fault. Obviously, I can blame the disease for many things, which I’ve done on this blog, with coughing up blood being the obvious winner. But “decision making” surprised me when I realized what was behind the agony I feel making important decisions in life. I didn’t always have this problem.

Over the years, I’ve had to agonize over every decision related to CF I’ve ever made. Which doctor to see. Which hospital to go to. Whether I should go on IVs or not. How long to stay on IVs. Whether to call the doctor or not. Take the oral antibiotics or not. And there’s the classic and grizzly bear of all decisions: Should I go to the ER or not?

To have this disease is to live a life of having to make what may be life-altering decisions. Decisions born from CF have more riding on them. They are not the same as picking a paint color or a restaurant for dinner. When you’re looking to gain any edge you can, a wrong decision feels deadly and heart-breaking.

And wrong decisions don’t go away. They hang around in your subconscious until it’s time to make another important decision and you remember the last time you had to make a decision and how you screwed it up in a big way. Bad decisions are like thrown boomerangs you forgot about until they whack you in the back of the head.

I find that this problem has bled over into my normal course-of-life decisions. I analyze everything to the point I can’t decide one way or another. This damn car. What should I buy? How much should I spend? Private party or dealership?

I fear a bad decision more than I fear the reaper, giving the Blue Öyster Cult song new meaning. And I probably need decision-making therapy. If only I could . . .

[No decisions were harmed, or made, in the writing of this post]

Carry the Load, Crybaby

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If I saw a psychiatrist, which I probably should, and he or she asked me what the future looks like, I would answer: It’s heavy. And I’d mean it in the sense that the future weighs a lot, that it has physical mass and I can carry it on my back – like a rock. And with every step I take, the rock gets bigger and heavier, growing from its molten center. At some point, my legs give out and the future crushes me flat, my arms and legs sticking out under its mass like Wile E. Coyote.

So it shouldn’t come as a surprise that when I think of the future, it looks difficult, hard, not appealing, filled with unpleasant events. Who enjoys carrying a giant tumor of a granite on their back? There will be more coughing up blood, more hospitalizations, more of everything CF.

And there will be dying. And there will be crying and emotions by others, though this is debatable and shouldn’t be taken for granted, as I’m not the most lovable of guys. And sadness. And the time my daughter and wife will need to find a way to pull themselves together, which I hope is short (move on, have fun. Enjoy at all the Craigslist furniture I bought you. Live like they do in Coke commercials.)

I confess: I have days when I wish the disease would take me, wipe away not feeling well and the buttery stress. But I’m happy that it hasn’t.

This I do know. The pressure to make sure each minute counts is great, oppressive, and increasing by the day. I can do the math in my head. I’m not going to be here in 50, 40, 30, 20, 10 or who knows how many years. Perhaps days. If I get in another argument with someone with blue hair who sees things that didn’t happen, my end of days may take place in prison.

I am running on fear. My tank is full of it, 91 octane, high-grade. Every day now is a bonus. I look at things more closely, linger on objects and people, the lines in my friends’ faces. We’ve all changed over the years. And I feel like I’ve been through so much, taken my share of beatings from CF and have the scars from each one. And I have more to come. I’ll take them like a man, or a mouse, and see the movie through to the end. I hope the CF Foundation or Sharktank or some drug company finds a way to stomp this disease’s demonic spirit of gut-ripping terror into the earth with the heel of a boot. For the sake of everyone one involved. I hope. And that makes the weight of the rock bearable for one more step. And another. And one more. And.

My romance with craigslist

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[Adult Language]

I love craigslist. I hate craigslist. But I love it more than I hate it. I only hate it when I don’t love it, which isn’t very often, as I love it most of the time.

How did I decide on this topic tonight?

My brother from another mother, Josh of Joshland, emailed me and asked me what I had been up to lately. I’m been absent on Twitter and haven’t tweeted about McGriddles and the Broncos and other fascinating topics. Nice of Josh to check in.

And my answer to him about what I have been up to was craigslist, or one of the things I’ve been doing, along with searching for a used car, which I’ve been using craigslist for (and if the 2002 Volvo V70 had had leather seats and not fabric, my search would be over).

I can’t remember if I’ve written about craigslist here in the past or not. If I have, you can stop reading now, which you may have already done. I don’t care. That’s not that I don’t care about you – I do. I don’t care if you continue reading or not. Well, I do, but I like sounding like a tough guy tonight, hard on the outside and inside. No Jay Cutler softness here – my skin is thick like an alligator’s.

Back to craigslist. I’m a huge fan of it. And my OCD makes me a pro when it comes to hunting down items I want. I’ve furnished most of my house with furniture from craigslist. It’s one of the reasons my wife thinks I’m crazy, but she likes the thousands of dollars I’ve saved. And though I like chasing down the perfect item, the money saved, and being “green,” I also like the “meeting interesting and cool people” part of it – most of the time.

There have been a few odd individuals and people who tell you the item is in great shape but it’s not – like the elderly couple who told me the red leather Pottery Barn chair only had “minor wear” and a small hole. When I got there it looked like a cat had fucked it a thousand times over. There were scratch marks everywhere and rips. And it smelled like cat piss. It was all I could do not to let loose on the two geezers and give them a little cat scratch fever of my own. But I didn’t. I was polite and drove the 20 miles home fuming about the waste of time and misrepresentation of the item.

The good and kind and friendly people have outweighed the not so nice and bad. I have this fantasy of writing a book about all of the people I’ve met. I think I remember most of them. That’s another part of craigslist I really like – the items I buy have a story behind them, like the dining room table and chairs I bought from a famous disc jockey, a total L.A. story. I have a signed headshot from him to show my friends when I tell the story of the table, though they’re all tired of hearing it. I look at the different things I’ve bought and they say something about my life and the lives of others and the moments when our lives intersected. It doesn’t get better than that.

That’s all for tonight. I have some searching to do.

Stay well.

How the LA Times drove me mad (or madder)

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I am a huge advocate of newsapers. But when the LA Times Marketing department kept calling me, I kept hanging up.

They called at the worst times and it became a game of seeing how fast I could disconnect the call: Hi, LA Times-. Click. Hi, LA Tim-. Click. Hi, LA-. Click.

Then one weekday a newspaper appeared on my driveway – unusual, as I only subscribe to Sunday’s paper. I once received the paper daily until this little invention called the Internet came along.

It must be a mistake by the carrier, I thought. Then another paper fell from the sky, and so on. And into the trash they went, unread, as each one contained yesterday’s news that I’d already read on my computer the day before.

It must have been ordered by one of the operators I hung up on, I realized. Kudos to him or her for the practical joke, which I couldn’t help but appreciate. Respect. You got me. You got me good.

So, I called the LA Times to tell them to cancel the paper I never ordered. When the rep connected, she told me I was receiving the paper as gift from the LA Times for being a loyal subscriber. I told her I didn’t want it and to cancel it. please.

Like a computer that doesn’t understand a command, she couldn’t compute the input of me not wanting a free paper. Can’t compute, can’t compute. After five minutes of back and forth, she transferred me to another operator who had the authority to cancel my free paper.

The second operator did everything she could to convince me to the keep the free paper. As I don’t like to get mad at polite, hardworking people doing their job, I patiently told her to cancel it. She held her ground and stated all of the great reasons I should keep it, ignoring my logic, pleas and, eventually, my crying like a baby.

At this point, I’d spent 20 minutes of my life in newspaper hell. So, I decided to cancel my Sunday paid subscription, which glitched her computer programming and made her admit defeat in trying to save two orders. After 25 minutes of my life wasted, she canceled the free paper and Sunday’s paid subscription, which put me in the doghouse with my wife, as she uses the grocery coupons.

Now this happened over a week ago. And I expected it would take a few days for the cancellation order to happen. However, each day I walk outside and guess what’s there – a newspaper. And it stares at me and speaks directly into my feeble brain and says in a soothing voice: Hello, I’m here, and will be forever. You’ll never get rid of me. Enjoy me. Read me. Kiss me. Burn me. Or, roll me up nice and tight and use me to beat yourself in the head.

My advice: Never hang up on the LA Times. You’ll be sorry if you do. I am.

The woman with the blue hair

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I wish I could tell you the exact words spoken by the woman with the blue hair, but I was bending over having an argument with my daughter about not shutting off her Nintendo DS and I didn’t see the woman when she spoke to me. She said something like “If you spank your daughter in public I can only imagine what you do at home.”  Let me clear this up first: I don’t spank or hit my daughter, nor did I on the streets of Ventura that day. But somehow this woman in her late twenties with bright blue hair and a coffee in her hand thought I did. Somehow her mind saw something that did not happen and she felt the need to comment on the illusion.

“Sorry?” I said. “What did you say?”

She told me I shouldn’t spank my daughter. I guess at this point I should have just walked away and ignored her. But as my daughter had already wound me up by continuing to play her game and giving me attitude about it, I was already in “fray mode.” I won’t go into all details of the loop that started at this point, but it started with me explaining that my wife and I don’t believe in spanking and never do it, which is true, as I got spanked a ton growing up and wasn’t going to inflict that on my child. So, this complete stranger accusing me of something like that got me pretty heated fast. My voice was loud and I was pissed, but anything I said was followed by something to the effect of “I saw you spank her.”

Now had this been an argument with another man, it would have escalated into a fist fight, which would have caused me to cough up blood, of course, and the police would have come and it would have been a mess. Fortunately, I realized two things: I couldn’t get in a fight with a woman, as that would cross a line I would never be able to live with; the argument was becoming pointless, as arguing with her would never change her mind of what she thought she saw.

My daughter started crying at this point, which should have a been a major clue for the woman that she was wasn’t crying before, a good indication she didn’t get spanked. “You made your daughter cry,” she said. “You made my daughter cry,” I said, which doesn’t sound that cool on the page but I said it with such intensify that the woman didn’t say anything after that. I hugged my daughter and looked back at the woman one more time. She flipped me off. I just waved her off in a way that said you’re not worth my time and walked away with my daughter, who had never experienced anything like this heated argument in her life.

We went for pizza and it turned into a great teaching moment. We spoke about how we couldn’t let the woman ruin our day. We could have gone back to the car and gone home, but she would have defeated us if we had done that. It also allowed me to discuss the types of people that exist in the world and how you have to be street smart, which is another reason you don’t walk along with your head down playing your DS. People and situations come at you fast. Head up, eyes open.

If there is a karma side to the story it’s this. As my daughter and I got back to the car later, a woman called out to me. She and her two friends were there when the argument was going on. She told me she had seen me standing with my daughter and I hadn’t spanked her, which is amusing as I didn’t need confirmation, but I understand she meant it as support. She said I was controlled and had it happened to her she’s not sure she could have managed it like I did, which is funny as I felt wound up and bordering on a lack of control, but I didn’t use foul language in public and in front of my daughter, which I was happy about.

This nice woman told me she debated getting involved and stating that I didn’t spank my daughter, which deep down I would have liked just to prove the blue-haired woman wrong. But who knows what would have happened or if the annoying woman would have even believed the witness. It may have escalated the situation. So, I let my witness off the hook and told her it was best that she stayed out of the situation. It seemed she needed to hear this, as her inaction was bothering her. I was happy to help her let it go and absorb all of the burden.

Now if I could just let the damn thing go. It’s several days later and I still replay the situation in my mind. It taps into my CF anger and OCD and I keep thinking about it. I like to win and perhaps that’s where my frustration lies – there was no way to win, but I still want to. I also have a new appreciation for the fact many witness statements in court are incorrect. Somehow this woman saw something that did not happen, yet was convinced it did. Or, she just wanted to mess with me, which is possible. Or who knows what her motivation was – and that bothers me. For as long as I live, I’ll never know what really happened that day or understand human behavior, including my own.

Used Cars and Oxy-“Morons”

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I’ve been searching for the perfect used car now for over a month. I’ve been looking for a wagon – Volvo, BMW, Audi, or Mercedes. Just a simple used wagon. But there is one other problem. I’m frugal. So, I find wagons and they’re out of my price range or I can’t negotiate the price I want. Or they’re too old. Or, and this is the most common killer of me finding my dream car, they smell like smoke or the chemical used to cover up the smell of smoke. That’s right. I’ve come close to buying several wagons, most of them BMWs, and guess what’s stopped me in my tracks – smokers. There’s a twist of fate there when people ravaging their lungs with cigarettes prevent me from getting a car. Every decision in my life is connected to breathing or someone else’s breathing, or so it seems.

My wife found this wagon for me, which tells you a little bit about her rubbing salt in the wound and the neighborhood we live in.

I also have the pressure of making sure I buy a car that is safe and reliable because should something happen to me the car I choose will be driven by my wife with my daughter riding in the backseat. They’ll also be driving and riding in it now, too, so it needs to be road worthy, unlike the 13 year-old Ford I’m driving. I don’t like them in the Ford and thus the reason for a new used car. This situation creates a mental hell for me when I find something older and inexpensive, which is easy on the bank account, versus something newer and more expensive. Can I take the chance on the older car? Then, I’m conflicted with the following logic: “well, I’m going to die soon anyway, so I might as well get a nice car and spend the money.” Argh, double argh.

During the last month, I’ve dragged my daughter to dealerships all over Los Angeles. We’ve had some fun, like finding an IHOP near a dealer in Santa Monica and having pancakes for lunch, which she loved; and discovering a cool outdoor shopping area in Glendale with a store full of robots. My wife gave us a strange look when she asked us what we did that day and we replied: “we had a robot fight.”

I wish the past month had been all fun and games. I’ve had some of the typical negative car-buying experiences, but I’ve had good ones, too, with very nice, honest sales people. I have plenty of stories, but here’s the one that best typifies the conundrum of my used-car buying experience – so far.

I called a woman selling a 2002 Volvo wagon. When I asked her for the VIN so I could run a CARFAX report, she told me I’d see a few minor fender-benders listed. However, because she worked for an insurance company, she was able to get the damage fixed and, as a bonus, had manipulated the insurance report to include getting minor dings and nicks repaired. She was proud of her cleverness, though some might consider getting your employer to cover repairs not normally covered to be a gray area of honesty. This became more confusing when I told her I was looking for a car free of damage and she replied with “at least you know I’ve been honest with you.” Yes, I thought. Yes, you have. But why do I feel one or us needs a shower right now?

And the search goes on. And on. And on.

Ocean waves of despair

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[I apologize in advance for this post. I had to get it out and off my chest so I can move on to better days.]

I’ve been struggling for days trying to describe a certain funk I’m experiencing. As with any new year, it’s a time to look out on the coming 12 months and think about what’s ahead. And that’s what started what I like to call waves of overwhelming despair. I’ve been unable to escape them.

One after another, they arrive without a break in sight

My lung function recently dropped from 65% to 55% after two embolizations and two hospitalizations. I did a good job ignoring it over the holidays as I concentrated my energies on being happy by not coughing up blood. But the cold hard slap of coming back to work this week combined with the fact I can’t breathe as well has delivered a great sense of hopelessness that I will not be able to maintain my life as I know it. What does that mean for the coming year? How many hospitalizations? How many times will I have to tell them at work I’m in the hospital and go through the process to be allowed to work while locked up? At what point will I not be able to continue this crazy game?

I’m lucky to have a great job and one which allows me to work with cystic fibrosis. I’m been doing it for over 10 years but would have worked my way up the food chain to new challenges, or a new company, in normal circumstances. Now the work has become a bit stale and I’m going to have to look for ways to change that and make it more exciting and less of a grind. However, with the clock ticking and my days numbered, a little voice in my head screams out each time I spend a minute of my remaining time writing a pointless email or playing the corporate game of going with the flow. The combustion created by the opposing forces of survival in the real world and the fantasy of making every moment count for something has created internal conflict. My patience for meaningless tasks has grown paper-thin. And one edge of that paper is on fire.

To make matters worse, the mental tools I use to fend off these black moments have failed. Yes, I am lucky. Yes, I have lived past all expectations with a brutal disease. Yes, others have not and I need to cherish each day. However, I want more. I want it all. And I know I can’t have it. I don’t just want it for me. I want it for my wife and I want it for my daughter and feel bad I haven’t given them the storybook life they deserve. And I can tell you that without those two anchors I’m not sure I’d escape some of the more challenging emotions of feeling like life is crumbling or a fear of the future.

Worst of all, I know I have no right to the emotion of despair. I have no right to whine about it. Yet, I can’t help but feel it at times. And that in itself makes me upset. I should be able to look at the big picture of CF and remember those who haven’t been so lucky and just keep my mind calm and my mouth shut. Perhaps this post will help me purge it and get my tools working again. My mantra: I am lucky. I have been given so much. One day at a time. The future will be what it will be.

I apologize for these thoughts and ask you to bear with me as I pick myself up from my momentary weakness and stop feeling sorry for myself. Someone toss me a towel, this water’s cold. It’s time to get out.

Two weeks living like a Zooble

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I’m happy because 2010 didn’t end with a hospitalization due to coughing up blood. Instead, I spent the two weeks with my daughter. I wish I could say that we got a lot done or did something important like discover a cure for cystic fibrosis while playing with Zoobles in our living room, but we didn’t, though I did make sure Zoobleland is CF-free. All of the little critters are healthy. There’s something to be said for being able to turn yourself into a protective ball when needed. This magic power allows Zoobles to escape all illness and evil in the world. I wish I could do the same.

The damn Zoobles had a party and drank my Cayston, which is like 80 proof alcohol to them.

So, when we weren’t playing with little plastic toys made in China, the two of us spent a lot of time being potatoes, or slow-moving potatoes, which one might call turtles. We played Donkey Kong Wii and did some shopping. We looked for a new pre-owned car, which was a major pain in the ass and a task that is still unfinished. Thinking back on the time now, I’m not sure where it went or exactly what we did to fill every moment. But it passed, and it passed without going to the hospital.

Though time went by fast, it wasn’t stress-free. I had plenty of blood streaks to remind me it was there, waiting, lurking, ready to explode without warning. But thanks to the miracle of Cayston and three treatments a day, I escaped the hospital. I’m so lucky. Have I mentioned that before?

I have a clinic appointment this week. Though I’m feeling okay, I need to speak to the doctor about the psychology of the blood and what it’s doing to me mentally. Every cough feels like it’s the beginning of a hospitalization. I took measures over the holidays to minimize the risk of bleeding, e.g., not exercising. My plan for 2011 is to get aggressive and exercise and force the blood to come out if it’s there. Then embolize it right away. I can’t go about living with such a nasty timebomb waiting to interrupt my life. I want to go after it and not feel like I’m waiting for it. It’s time to run into battle not flee it. Let’s see how that works out. I’ll keep you posted.

Stay healthy.