And now for a commercial break from CF – my boycott of Minute Maid

I watched American Idol tonight with my wife and daughter.  It wasn’t the bad performances that upset me – it was a Minute Maid® commercial.

In the commercial, healthy Gen-Y’ers are having a great time boating in the middle of the ocean.  A shark bumps their boat and a plastic cooler of Minute Maid falls over the side. The shark swims off with it, drinks the Minute Maid lemonade and starts jumping out of the water and dancing on its tail.

Here’s a link to the commercial on youtube.com. http://www.youtube.com/watch?v=MfrRhIPx12k

My favorite shot: a bunch of destroyed plastic Minute Maid bottles floating in the ocean.

Does anyone at Minute Maid or its global parent company Coca-Cola® know about the large growing wasteland of plastic debris north of Hawaii or the new one now forming in the Atlantic?

Plastic in our oceans is one of the greatest threats to our health we face. Plastic is poison to sea life and makes its way into us through the consumption of seafood. I bet a portion of it comes from Coca-Cola products.  The problem is that much of the plastic is small pieces floating just beneath the surface, which makes clean up difficult, if not impossible.

Here’s a link to a video that tells the story of the problem north of Hawaii. It has adult language and is long, but shows the plastic problem up close. http://www.vbs.tv/watch/toxic/toxic-garbage-island-1-of-3

So, tonight my boycott of Minute Maid and Coca Cola begins. They need to pull the ad immediately.

I leave you with the last line of the commercial spoken by one of the kids on the boat looking at the floating plastic bottles:  “Who’s gonna get the empties?” Exactly, my friend. Exactly.

Monday Musings – Looking back in the future

Someone once thought it was a good idea to hire me as a junior high English/literature teacher. LOL. I still can’t believe it but I thank them for their trust.

The good news is that I don’t think I harmed any young minds. I thought I was great teacher.  Now, in hindsight, I’d say I was good at best with potential. Not great.

I enjoyed teaching, but gave it up because of the parents and pay. The kids were great and getting paid to discuss language was pretty cool. However, dealing with some parents reminded me too much of my “eating sh** days” in retail sales. Add that to the small paycheck and I gave it up.

During my days teaching I made exactly one comment I thought was interesting – one that is also relevant to cystic fibrosis.

Here it is: What is happening in the present day that we will regret in the future? Past examples: slavery, the red scare and the internment of Japanese. How did these happen?

And that’s my question today: When we look back years from now, and hopefully we’ll all be alive to do just that, what will we regret about cystic fibrosis in the future? The fact we lost so many before the cure was found comes immediately to mind.

Other thoughts: Why didn’t scientists know sooner that cruciferous vegetables held those secrets? Why did we bother taking a certain medicine?

Or will be there be no regrets in the future?

That’s what I’m thinking about tonight. What do you think?

The blood volcano blows

My daughter had a track meet today, which is 7 hours of sitting for us to see less than three minutes of competing by her. I don’t want to know what the ratio of sitting to action is.  Regardless, it was worth it. She did well. We were very proud.

While the other parents sat and waited for their children to compete, I wondered how many of them were sitting there wondering if their lung was going to spit blood without warning. Everyone who was, please raise your hand (my hand is raised).

After the special gift CF delivered last night when I coughed up blood in our friends’ bathroom sink – a joy cleaning up the splatter – I wondered when the volcano would go off again.

In order not to wake the angry giant, I walked up the hill to the track meet very slowly.  Then, when walking up stairs, I pretended to look at my video camera. This way no one wondered why it took me five minutes to walk up 20 stairs. One pause. Two pause. Three pause and look intently at the camera. Step.

Nothing like sitting there for hours swallowing bloody mucus.  Oh, well, it can always be worse; I just wish it was better and I didn’t have to think about things like this. I’d much rather be showing my daughter how to get a good start out of the blocks or fly in the long jump. Ah, CF, the gift that keeps on giving.

Today, sitting there in the hot sun, I thought about a quote from one of my favorite movies, “The Hustler,” with Paul Newman and George C. Scott. In one scene, Scott  says to Newman’s character, Fast Eddie, (I’m paraphrasing here) “World’s greatest indoor sport, kid, feeling sorry for yourself.”

I discovered today that it’s a sport you can play outdoors, too.

10 things I’m asking for in my next life – a post for CF guys

My apologies to the women in my life and those who read my posts.  This one is for CF guys and my Twitter friends CFFatboy and rlcarroll.

In my next life, free of f’ing cystic fibrosis, here’s what I want:

10) I want to be the man that men driving monster trucks never make eye contact with lest I come over there and kick the s**t out of their truck and them, then get the phone number of their date.

9) When the preening guy driving the Audi in front of me at the McDonalds drive thru throws his cigarette out his window, God, let me be the man who tells him to pick it up – and watch as he does.  No, scratch that last part.  I want the Audi guy to apologize and eat the butt to show how sorry he is.  Then I want him to pick up the cost of my McGriddle, giving me the thumbs up as he drives away spitting out the taste of the tobacco and filter and parking lot grime.

8) Give me the option to appear in adult films with “giant” in the title. Not that I’d do it, but it would be nice to know I had the option of this career path. (Also, let me punch the WordPress guy who designed an “8” and a “)” to automatically become a smiley face.)  😦

7) 250 pounds, 6’5′ tall.  Pretty simple.  I want to be able to see over the offensive line on my way to six Super Bowl wins.

6) Let me run a mile in under 4 minutes – in a movie. It will be the running chase scene equivalent of the car chase in “Bullit.” No stunt double necessary.

5) Give me the charm of James Bond and Warren Beatty.  Also, I want a 007 license to shoot idiots like the guy at McDonalds. I don’t want to kill them because nothing turns off the stripper you’re on a date with like killing someone in cold blood. And the police paperwork. No, I’ll just shoot them in the leg.  Or, the car.  Let me shoot their car.  That’ll get their attention.  The next time someone cuts me off on the freeway.  I want the ability to shoot their car. and make it go up in flames.

4) I want a jet car.  That’s right.  I want a rocket engine in the back of my car and one of those police business cards for getting out of tickets.  This way no one will be cut me off and I won’t need to shoot them or their car.

3) I want Ultimate Fighters to give me a head nod when they see me – respect. I also want them to give me a wide berth when walking near me out of fear of what I’m capable of. I want to be a walking, slightly unstable nuclear reactor.

2) Black belt? Red Belt? Not enough. I want a new color belt that only I was awarded. Oh, and I want to be able to break a stack of bricks with my p***s.

1.66) I want to play the guitar, hang out and jam with Springsteen on weekends talking about “Thunder Road.”

1.50) I don’t want to do any medical treatments of any kind. I don’t want to have see a doctor until I’m 80 because that was the first time in my life my digestion went south or I had a cold. No nebulizers, no pills, no hospitals.  If I have any of these in my life, God, then expect me to treat you like the monster truck guy.  No coughing either.  Not one.

1.33) I don’t want to eat Broccoli or anything else a horse might eat.  Steak and McGriddles and Pizza.  Let that be my fuel.

1.15) Let me always respect women.  For without them, this list would be pointless.

1.1) Please make sure I marry the same woman I’m married to now. They don’t come hotter, braver or smarter.

1) Forget numbers 2 through 9 and just bring me back as the God of Thunder. Ladies dig the GOT. That will be just fine, God. Then you can rest. Scratch that. Cure CF, then you can rest.

Solitary Confinement, the 60s and Bob Flanagan

I read an article about the damage solitary confinement does to prisoners. One might say that’s not a bad thing, a little payback for their horrific crimes. I won’t debate that here. What was interesting and relevant to CF was how much humans need the company of other humans. Without it we literally go mad, as evidenced by solitary confinement research.

That’s the closest I can get to describing growing up with CF in the sixties and seventies. I wasn’t isolated from other people, just other people like myself, which is one of many cruel ironies about this disease. Mask up and stay a certain distance away from each other, symbolizing separation even when together.

Thanks to the Internet a younger generation of CF kids can grow up knowing there are others out there like them. And, more importantly, some of us grow old with CF. I felt like a zoo animal at times growing up, different and apart, which was occasionally reinforced by the neighborhood kids through statements such “you’re going to die” or the rocks they threw. Being skinny didn’t help the situation.  (Sorry, crying like a baby here.)

And then there was Bob Flanagan, CFer, performance artist.

I speak of him for three reasons: to keep his warrior memory alive; I respect him; and because I wonder what his life would have been like had he grown up in the age of the Internet. Did he feel the same isolation?

I was lucky to see Bob perform one night in Venice CA at Beyond Baroque in a room painted all black, which was quite disconcerting in itself. Bob’s dark performance fit perfectly in the suffocating space and created a sense of disorientation.

He and I had a mutual acquaintance in a local college professor, a great writer who I still owe an apology to for monopolizing his office hours with my crying about my life with CF. (Sorry, JK.)  He told me about Bob’s show and I took my future wife to see him. (I’m surprised she married me after that night in Venice.)

I won’t go into detail about Bob’s performance because there is plenty of web content about him, including a documentary. And I offer this warning: Most of Bob’s performances are beyond Adult Content. In fact, some of his material might be the type of thing that you wished you’d never seen.  So, you may want to read about Bob. Proceed with caution before entering his tortured world.

How would the Internet have reshaped his life and mine? People are more knowledgeable about CF and understanding these days than they were when I grew up, and Bob 10 years ahead of me. Most realize we have more to catch from them than they from us.

Even today, with my friends, Twitter friends, and family, I still feel a sense of isolation.  Is it from my youth, or is it that I learned very young not to talk about CF, to hide it from people, and rarely discuss it?

My thoughts on this now: We all have challenges in life. Are mine really that different? I don’t know. Maybe.

I do know this: Solitary confinement won’t be punishment enough for cystic fibrosis and its crimes; Judgment Day is coming.

“The Matrix” and Pulmonary Function Test (PFT) results

I love “The Martix.”  The first film, not the sequels.  I remember looking over at my wife when the movie ended and we didn’t say a word; but our eyes said it all.  Holy s**t!

Yesterday, a CF blogger I just met online posted her PFT results from 1982 to 2006.  And I had a Matrix moment.

At the end of “The Matrix,” Neo’s sees the world in green code (picture to the right).  When I looked at the PFTs, I saw more than just numbers – I saw the code behind her life with CF.

I saw the story of a warrior – a mother – who has drawn a line in the sand she won’t let CF cross.  A woman battling over the decades to maintain her lung function, fighting for every percentage point and a life with her son.

There were 92 entries on the list and it’s not complete. Over 92 times she sat with a PFT tech or nurse and blew into a mouthpiece until her face turned red and her lungs were drained of air.

And, if you know PFTs, you know that you usually don’t blow once.  You blow three times on average, depending on your clinic and how long ago it was. (How many computer candles have you blown out in your lifetime?)

I had never thought of PFTs in this way before – that they tell our CF stories in code.  They reveal the low points in our lives when we wondered what we had done to lose so much lung function. (How did it happen? What did I do wrong?) They showcase our victories when new drugs were introduced or we exercised more or we found a supplement or treatment that helped us outfox the disease.

I wish I had a complete running record of my PFTs.  I know what they would show and it’s painful. It would show that I was hotheaded and made more mistakes than I did correct decisions.  That code would rip open old wounds.

I find it more comforting and motivating to look at others’ code and root them on.

What will our PFTs look like when a cure is found?  Like Neo at movie’s end, that will be our victory for years of hard fought battle. The code will no longer matter and we can go on with our lives.

Roll credits.

Not so deep thought of the day – The X Factor in fighting CF

The CF Foundation states that the median age for CF is over 37. They and thousands of volunteers and doctors and CFers and CF families have worked very hard to raise that number.  Every one of these individuals deserves major kudos, including anyone who has contributed financially to fighting CF.

Now here’s my “not so deep thought of the day”: What would the median age be without the Internet?

Would it still be over 37 years?

Think about how complex this disease is and how opinions vary on treating it. Think about how important sharing information is in fighting CF. Think about how comforting it is to communicate with others who have this isolating disease.

Without the Internet would we know the best order of nebs? The best CF Centers? The best alternative therapies?

Here’s my question of the day: Have we realized the full potential of the Internet in fighting CF?

I don’t think we have.

I believe the Internet will help us fight this disease in new and creative ways we haven’t yet imagined, or yet implemented.  And I wonder what they will be. I wonder. I truly do.

Letter to my daughter – 4/11/10

I know that if I spent the last 47 years staring at the clock, second after second, minute after minute, hour after hour, that each day would have been the same identical measurement of time.  But it didn’t feel that way.

It feels like I took a deep breath when I was 20 and exhaled some time today, or tomorrow or the next day. I wonder where time went and if I used it wisely.  And I know I didn’t.

My number one regret tonight, at this very moment in time, is that I filled my brain with crap and things I wish I hadn’t done.  Only now do I realize that my brain was my receptacle of time with a finite amount of storage.  It can only hold so much in the time that you rent it; I filled it with bad things.  Not all the time.  But more than I would have liked.

I wish I could exchange the junk, such watching episodes of Beverly Hills 90210 and Melrose Place,  for better stuff, like really playing the guitar well. I wish I hadn’t done some of the things I did, especially my actions and words that hurt other people.

That’s what I want to share with you tonight: Be choosy about what you put in your head.

That doesn’t mean you can’t have fun or laugh or put silly things in your mind – they are important, too.  Just be careful of putting too much corn syrup up there. Always ask yourself: Is there something better I could be doing right now that will make me happier later in life.

Think longterm, which is something I could not do. I blamed the CF, but it was just me being weak.  I feel like I’m asking you to sacrifice.  I’m not.  Just be choosy, that’s all.  Be choosy. Your brain records time.  And one day you will play back that time in your head.  And you’ll have to live with everything there. There are no do-overs.

Fantastic Mr. Fox didn’t have CF, but if he did . . .

My family and I watched Fantastic Mr. Fox Thursday night.  Great movie.  My daughter and I loved it. My wife fell asleep and would have loved it had she stayed awake (living with me is a tiring experience no doubt).

The movie, or more specifically Mr. Fox, reminded me of what it takes to fight CF successfully – you have to be a fox. You have to be crafty and quick on your feet. You have to have animal instincts that constantly monitor changes in your environment (or your health). If you stop being vigilant, you’re liable to get shot by an angry farmer, or stomped by cystic fibrosis.

Also, always have an escape plan.  Mr. Fox escaped some tight situations.  Each time I get out of the hospital, I feel like I escaped the buckshot to live another day.  And I savor life, sweat the little stuff less, and appreciate my wife and daughter even more after these close calls.

Based on the CF blogs I read, there are a lot of foxes out there fighting CF, using any edge they can get to outfox the disease.  It’s not just CFers who have this skill.  Parents of CFers outwit the disease, too, using clever tricks to keep their children healthy. And, like Mr. Fox, these fellow Vulpes vulpes are doing it with style and class.

Long live the fox.

The fear of hemoptysis

I can’t say that I’d choose hemoptysis over the fear of it – coughing up blood rocks my world and I hate it.  The fear of hemoptysis, however, is starting to impact my life.  The last two times I sprung a leak were related to walking up a hill and stairs.  In fact, the latter happened walking to clinic, which allowed me to pass “GO” and move directly to “x-ray” on the CF Clinic Monopoly board.

Both recent episodes have come as a surprise, as always, but during events that in the past didn’t cause bleeding.

Now I adjust my activities due to a fear of bleeding.  I haven’t done cardio for months; I avoid stairs or walk up them slowly. Disneyland last week caused me great fits of stress when I walked up hills (not as flat I remember when I didn’t worry about drenching Mickey with blood, which would ruin a few photos but end up a hit on Youtube.com).  The thought of bleeding in the Magic Kingdom and disrupting my family trip was a heavy weight to carry around.

I know I’m lucky and have no reason to complain, but isn’t it human to always want more? Or at least to want to be normal and not worry about coughing up blood  in public places?