Tag Archives: Being a fox

Letter to my daughter, 03/22/11

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Dearest Daughter,

We’ve spent two days together while Mommy is away on business. Thanks for making my life easy, so far. But there’s always tomorrow to change course and wake up in a foul mood and fuss about putting your shoes on. We’re not home free yet.

I do, my wonderful daughter, need to share an observation with you I noticed this week: You’re Fox’s child, not mine. Yes – you are.

This became very clear to me the first morning when I had an epiphany and saw your fox tail showing.

Here’s how I knew: How many years has Mommy brought you a heated blanket in the morning, carried you to breakfast, and sat you on her lap feeding you?

Hmm, I wonder?

Then, when she’s away for a few days, and I’m here, you manage to get up without an alarm clock, put together your own breakfast, eat it in record speed, and have 30 minutes to get dressed and ask if you can play Pokemon.

And no blanket or sleepy-head look? Very interesting indeed.

You see, I now know your secret – you bamboozled your mother! All these years and you kept the act up. Well done, my child. Well played, young lady. Well. Played.

I will keep your wicked little secret when Mommy gets back, and let you have your pack-mule moment of being carried to the table. It makes your mother happy, though she’s having a hard time carrying you now. How old will you be when you exceed the maximum weight limit for that ride? I’m sure it will be sad for all of us.

From this point forward, each time I see her lugging you like a heavy bag of groceries, I’m going to have a huge smile on my face watching you, Baby Fox. Yes, you.

Enjoy your trick, honey, because before you know it, you’ll be carrying your own daughter to breakfast wondering when she got so heavy, and wasn’t she just a baby a few days ago, and where did the time go?

Where did it go?

And you’ll remember, at that very moment, what I once told you in a blog post – you blinked.

With all my love,

Daddy

Raindrops on Roses, Crushes and Bromances

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Today started off in a dark place and improved until I coughed up blood streaks tonight. Add that to the back pain I’ve had for the past four days and I feel like I’m playing the game where you place your forehead on a baseball bat, spin around it, and then run to first base. How did I end up in the stadium parking lot?

Photo by Angela Sevin, Creative Commons

This is my mind on CF

My “monkey mind” is lighting up like a fireworks factory fire. Will I be in the hospital tomorrow for the bleeding? What if my kidneys are damaged? I can’t get comfortable. Am I peeing too much or too little? I can’t concentrate on work. WebMD says I have a rare form of kidney Ebola.

I gave urine and blood at Quest Diagnostics (QD) yesterday. I fucking hate Quest Diagnostics.

First, the waiting room is full of sick people who want to kill me (always bring your own pen to sign in with or you will catch Ebola).

Second, the QD workers always ask me: “Why the mask?” Because I have a highly contagious disease that made my ass expand to the size of a beach ball. They used a 14-inch railroad spike to pop it. Hurt like hell. Oh, and what a mess. However, I will take this mask off if you kiss me while I pee in this cup?

Third, QD bills are the gift that keeps on giving for months to come. Thanks to them I had a collection agency harassing me over a $120 invoice I’d never received. QD representative on the phone: Oops, we’re so sorry. Computer error. We’ll tell the agency to remove the medieval catapult parked in front of your house.

I’m in the outfield again. Oh, yeah, Crushes and Bromances.

I was thinking tonight about a few of my blogging and Twitter friends and how much I dig them. I admit the following: I have crushes on my female readers. And a bromance or two – don’t want the guys to feel left out. But, dudes, eat your hearts out – I have some highly intelligent women reading and commenting. How did that happen? Clearly, the bag on my head makes me better looking, as I was told it would in high school – yes, the bullies were right. Thanks guys, I thought you were just screwing with me.

So when does the “Women of CF: Mensa Edition” calendar hit stores? I am so ready to buy it. Sign me up. And I want each month autographed: To Unknown, [(I +U ) 2011] x CH3CH2OH + HLT = CF-3 ft x ∞

Strange, I never anticipated blogging would have this benefit. I do confess it’s hard to be on my best behavior in comments and email.  Sometimes, I’m biting my knuckles with Fox telling me: “Write it. Write it. She’ll take it as a compliment. Oh, you wimp.” Rule #2 in the Book of the Unknown: Never listen to Fox.

The Story of the Manure Salesman

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One day an unknown manure salesman hurried to load his camel. Shovelsful of manure were thrown up and into a large wood crate strapped to the camel until it became a heaping pile and the camel’s legs shook from the weight. At that point, the salesman threw handfuls of hay onto the load to keep it together, and to knock down the smell, as if that were possible.

A woman watched from the shadow of a doorway.

Sweating from his labor, the man stood back and looked at the camel – loaded and ready to go. Glancing at the ground, he picked up one more long stray piece of straw and tossed it on the load. In the time it takes a summer breeze to appear, the camel collapsed and died, crushed by the weight of the manure, which spilled into the street and onto the salesman.

He stood there stunned and speechless, covered, stinking, his hands not wanting to touch his soiled clothing. Tears filled his eyes from the loss or the smell.

“That was unfortunate,” the wise woman said, stepping carefully to avoid the mess as she approached.

“It was the fault of this one straw,” the man said, as he plucked a sample from his shirt and held it up for her to see. “It only took this cursed piece of hay to kill my animal. If not for this single straw, I would still have my livelihood and load.”

“It’s never the fault of a single straw.”

“It isn’t?”

“All of that manure weighed a ton. You were an idiot for loading too much on your camel – to the point it only took one straw to tip the scales toward disaster. But it was the total load, not the single straw, that killed your animal.”

The man gave this some thought, his facial expressions mirroring the realization of the truth and his responsibility. Then his face became calm, his body relaxed, and he pulled out a gun and shot himself in the heart while the wise woman watched.

She stood there for a minute, calm, quiet, studying the scene in front of her. The man, the camel, and the fertilizer, all linked together. Her hand raised up to her face, slowly wiping away a drop of blood, but no lines appeared on her face for anyone to read – if they had noticed her.

People circled around the man and camel, letting their curiosity overcome their sense of smell. A young girl stood next to the wise woman and tried to peek through the cracks of the wall the onlookers formed.

“What happened?” she asked the wise woman.

Looking down into the young green eyes, the woman said: “Always choose your words carefully when speaking to someone who doesn’t have their shit together.” Then she turned and walked the opposite direction of the growing mass.

Having a blog rocks! And so does Josh of Joshland!

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If my daughter reads this blog one day, I hope she takes away the lesson that you can only get rewards in life if you take a first step in one direction or another. When I started writing this blog I had no idea it would return the level of support, intelligence, humor and kindness that it has. I’ve been blown away over the past year by the experience, as I thought I would attract two or three people who had read every page on the Internet and were down to mine. Like love, I find it best not to analyze anyone’s reading choice too deeply, lest the magic fade. I’m grateful for my new friends – I’ll leave it at that.

And then there is Josh from Joshland, a kind soul unlike any other who walks the walk of inner strength and positivity; a person who has experienced more than a reasonable amount of heartache in his life with cystic fibrosis and the death of his sister, Angie, from CF. Mere mortals might give up. Not Josh. He colors this world orange with his  crazy pal Moganko* and almost makes me want to believe in the goodness of humanity (almost, which is a future blog post).

So, what does this crazy friend of mine from the land of Vikings go and do? He creates two amazing graphics for me. The banner at the top of the page and the Unknown Graphic below. I opened my email and there they were – gifts for moi. And I like gifts. Yes, I am the luckiest person alive.

My humble thanks to Josh for the thoughtfulness and generosity. The banner will go into rotation immediately and appear randomly, depending on my mental state. Regarding the other graphic, I like admiring my handsome self in it. The resemblance is uncanny. Well done, Friend of Moganko.

Please raise your nebulizers for Josh tonight. Salute.

I rock in my purple shirt. Fox doesn't like the way he looks.

 

*There is some debate whether Moganko created the character Josh or vice versa. It’s a mystery that remains unsolved.

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.

Saturday Funhouse – Fox Returns with Inventions

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Ladies and gentlemen,

I am one handsome hunk of fox

Fox here. I’m back. Did you miss me? If you didn’t, you can kiss my furry butt. I’m Fox and my middle name is “polarizing.” There is no middle ground with me. So, for those who love me, keep reading. The rest of you? Well, you can all F-F-F-Fade away.

Now I know what you’re thinking: Where have you been, Fox? The answer you may be expecting is “I’ve been partying,” which is a good answer, but not correct. You see there’s a side of me most of you don’t know about. I’m an inventor. I have patents for all kinds of inventions. And for the last three months, I’ve been holed up on an island in the south Pacific with my assistants Malorie and Julie, who are both top-notch engineers and help with the math I chose to ignore back in my school days (party or math class? Not a hard choice.)

The three of us have been working on inventions to make the lives of those fighting cystic fibrosis easier, even that jerk-off bum of a CFer named Unknown, whiny loser that he is.  A little blood and he runs to the hospital. You didn’t see me passed out in a hospital bed after my four-day bender with Keith Richards had me spitting up blood in a bathroom in the south of France. Some of us can take it. But I digress.

During the past four months, my brainy assistants and I have come up with four excellent inventions. I’m here today to share them with you. They’ll be available soon to buy, but I’m giving you a preview because that’s the kind of fox I am – generous and sober with my 1-day AA chip, which I’m going to bet on red to win.

Pull back the curtain, please.

Stay out of my room. You're covered in Pa.

Bacteria-finder sunglasses. Wear these glasses and you can see all bacteria harmful to CFers. Pseudomonas shows up in orange. Cepacia in red. MRSA in Yellow. You name the bacteria, we have a color for it. Friendly bacteria show up in blue shades. These are great to wear in the hospital. You’ll look like a rock star to doctors and nurses, while knowing who’s been naughty and nice when it comes to washing their hands.  “Come back when you learn to use soap and water,” you’ll say to the nasty Respiratory Therapist fresh from the bathroom and covered in C-Diff. He’ll stare with a sad-dog grin as you bust his ass for spreading germs and almost giving you the world’s most dangerous case of the squirts.

Am I still alive? iPad/iPhone app. Ever wonder what your temperature is, your O2 sats, blood pressure, heart rate, and heart rhythm are — all at once? Simply download the “WTF is going on in my body” app from Apple and you’ll know in the time it takes you to set down your mojito grande and place two thumbs on your iPad or iPhone. The CF version of the app also tells you if your lung has collapsed or if you’re just a big hypochondriac like Unknown is. And as a bonus, the Fox version has a built-in breathalyzer. Just place your mouth on your iDevice and blow (just the fact you’d do that tells you that you’ve had enough to drink).

Ring of hemoptysis fire

Dragon Gum. Nothing worse than coughing up blood. It’s a drag unlike any other. Chew this new gum and blood turns to fire. It’s quite a trick and we’re still working out the kinks, like timing the combustion of when the blood turns to flame after contacting the gum. I had a hard time kissing my PhD’s for a week after I burned my mouth on the first stick. Plus, my mouth smelled like dead flesh, making me off-limits to the opposite sex. But when this sweet tasting gum works, hello, King of the Dragon Colony. You’ll be spitting fire balls across the room. Take that cystic fuckbrosis.

IV fluid Clothing Pads. If you’ve ever been on home IVs and used IV balls, then you know it’s a pain to wedge it under your shirt by your shoulder while you’re infusing it. Hey there, Jr. Hunchback. We have a solution to solve the IV geek look – IV Bra Pads for the ladies and IV Speedos for the men. Now instead of IVs making you look like a geek, you’ll look like a Goddess or God with amazing physical gifts. And you won’t mind when the zosyn dose runs three hours. That’s three hours you’re eye candy for the opposite sex. “Why is there a line running from your bathing suit to your arm?”

I’m glad to be back and contributing to the CF community again. No need to fill my comment box with Thank You notes. I know you love me and what I do. But, hey, if you have to leave a love note, it won’t hurt me. I am, after all, a sensitive Fox who only wants to fill the world with love and happiness. Or beer and Vicodin chasers. I forget.

Party like it’s your last.

Fox out.

Fox designs a line of hospital shirts

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You can't keep a good fox down.

Fox here. I’m back. And better than ever. I spent the summer in Monaco with some of my Hollywood friends. I’d love to write about my adventures, but I don’t remember a lot of what happened. I do remember waking up face down on the water bed most afternoons, sometimes wearing the dress of the woman next to me. Crazy fox fun.

The entire summer wasn’t a complete inebriated waste of time. I came up with an cool idea for Unknown – a line of hospital t-shirts. Here’s what I’ve come up with so far. What do you think? A different one for each day he’s in the hospital next time?

Party like it’s your last.

Fox out.

Saturday Funhouse – My Ideal Hospital Room

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[Adult language]

My good pal @seanset, http://seanset.posterous.com/, wrote a comment here moaning and groaning about me not writing a Saturday Funhouse for awhile. How the hell did that happen?  Thanks, mate, for reminding me. Here you go. This one’s for you. And yes, I know it’s Sunday Funhouse where you live.

My Ideal Hospital Room

No jumpers, please. The first thing I’d add to my room is a balcony. I’d like fresh air each day without having to gear up with a mask and gloves and endure the fearful looks from people in the elevator (yes, idiot person who moved to the back, as if that will really help, I have the Bubonic plague, but they let me roam the hospital to drive up revenues with fresh patients).

Each morning I want to pop out of bed, I.V in tow, and take three steps to the great outdoors, yelling: Hello, World, I’m still here, ha ha ha ha ha ha, the joke’s on you.

Imagine cooking outside your hospital room. Rocking. How do you like your steak cooked, Fox?

How nice would it be to sit on the balcony in the morning reading while doing treatments? I could wave to my fellow CFers on their balconies. We could have a contest to see who could make the funniest voice with the vest turned to max. Then we could see who could spit farther, which might be the reason they don’t have hospital balconies in the first place. Not exactly the image the hospital wants to promote with a bunch of us sitting in our underwear spitting on the roof or gardens below.

Imagine people driving up to the hospital watching patients on the balconies doing nebs. Might be too much for them to take. Not us, cause we’ve been to places no one should have to go. So there. Roll up your windows when you drive by, people. BTW, I’d hang some laundry on the railing just to give it that old apartment-building look. And I want the BBQ in the picture.

You can’t make me go in there. I don’t take showers in the hospital. I look at that dark, nasty chamber and connect it to the thought of how lazy the cleaning staff can be. You’d need a team of football players to force me in there (or two drunk Victoria’s Secret supermodels). The shower is bacteria heaven.

Let's torch some bacteria, friends.

I read that some gas stations, or petrol stations in England (you’re welcome for that translation, Sean), have self-cleaning bathrooms. Perfect. That’s how I want my hospital bathroom to work. I want to be able to press a button and watch the entire bathroom sprayed down in bleach. Then I want flames to light it up like the “Backdraft” tour at Universal Studios, killing everything the bleach missed.

Finally, I want test swabs done to make sure nothing is living in there that I don’t want living in me. After all of that, I’ll take my shower with confidence. Girls, show me that pose from page 27 again.

Trying living in the Material Girl’s laundry basket: I want a room bigger than Madonna’s smallest walk-in closet. It’s amazing what a difference an extra 20 square-feet makes when it comes to your mood and health, and where you put all of your shoes if you’re a woman. How about designing a CF room that doesn’t make me feel like a caged animal gone mad during two weeks in the hole?

Come on, hospital bed, let’s do the wave. Have you ever awakened covered in sweat because of the plastic hospital mattress? Plastic doesn’t make the best material for temperature control. However, and this is true, when I was 16 I got a waterbed. And it rocked – and rolled. It was AWESOME to sleep on. It had a plastic mattress with temperature control and heated water. That was the trick. In Winter I was warm and cozy and could sleep with only the top sheet of my Spiderman bedding.

Now this is a waterbed fit for a hospital

Now as there are a ton of needles in hospitals, waterbeds may not be the best idea. Can you imagine pressing the “I want my nurse now“ button and saying, “my water bed just popped. Oh, and can you bring in some towels and fresh scrubs because my wife and I are soaking wet.”

Let’s hang in Unknown’s room. I cannot tell you how many times I have come close to going “rock star” on the crappy TV with no good channels and fuzzy reception. I came this close to ripping it off the bracket at Cedars-Sinai once and tossing it out the window. Had I been a rock star, they would have just billed me. If I had done it, I would have been fighting back the cons in the L.A. Jail. So, for us time-share hospital patients, let’s load up the room with the finest entertainment center available.

I want a 52-inch HD, 3D flatscreen with every f***ing channel in the world. That’s right, in the world. I’ll even watch those crazy-ass soap operas from Brazil. I won’t understand what they’re saying, and won’t care because everyone looks tan and pretty.

I should have taken a photo of the remote last time I was in. Here's one that looks and functions just like it.

Don’t forget the sound system. I need to block out anyone yelling “nurse, nurse” from the other room. I want people to think there’s an earthquake and it sounds a lot like the battle scene in Avatar.

Lastly, give me a remote control that selects channels up and down and that doesn’t make me want to inject Drano in my IV because I just passed the channel I wanted and now I have to go through 20 crappy channels to get back to the one I passed. Whew, that’s a mouthful.

To the joker who invented that piece of shit remote, I’m still looking for you and will one day take the reverse gear out of your car. They’ll be no backing up for you after that.

Some of us work for a living. I’ve said this many times – give me a desk and chair. I work when I’m in the hospital. This ain’t no holiday, people. I have a family to feed and insurance to keep. Help me keep it, hospital room designers. That way I can come back and use my insurance again, as opposed to doing my IVs while pushing a shopping cart on the streets of downtown Los Angeles.

Design a desk and have it pull out of the wall like a Murphy Bed or something. Get with the program of the digital world we live in – the one that doesn’t go away just because you’re in the hospital.

Here’s one from Fox: Thanks, Unknown, for giving me one, you generous bastard. Fox here. Look, my fox friends, nurses have heard every line you’ll ever come up with. There is nothing you can say with your golden tongue that is going to catch one of these intelligent, caring women. Even though they wear pajamas to work, which is cool, you have zero chance of getting them to change into something more comfortable – they’re already comfortable in their nurse PJ’s and Crocs. So, you have to trick them in a different, more subtle way.

This is what I look like without the bag over my head

The water bed is a great first step. Nurses love water beds and will want to test it. When she gets on, bump up the wave action and wait for the fun to begin. You say: “Look who fell into my arms. Que romantico. My name is Fox, and I come from an exotic land called Brazil. I will kiss you now.”

Second, and this is the bait of all bait, put a stripper pole in your room. Always say it’s for exercise and the docs won’t barf all over the idea. When the doc is gone, the patient will play. No nurse can resist a pole in the room (except the one in Louisiana who’s going to write Unknown a nasty comment for this post).

Now gents,  you have to stay cool and subtle and say it like this: “What’s a little spin around the pole going to hurt? It’s a great way to get over the barf storm Mr. Wilson just coughed up all over his room?” Be encouraging. “There you go. That’s it. I’ll just be sitting here reading on my iPad. You go ahead and get crazy. Oh, yeah. Wait, let me crank the AC/DC on this awesome sound system. That’s it. Did they teach you that in college.” [the rest of Fox’s post was censored because, well, you can only imagine what happened next – out came the beer and dollar bills. Then all hell broke loose when the nurse twins came in. Oh, my, Fox. What am I going to do with you?]

Last words . . .

I’ll be playing the lottery tonight, hoping I win big and can have my hospital build a wing just for us. We’ll party like it’s our last and live the rock star lifestyle with IV’s in our arms, a neb in our mouths and a cold beer in our hand. It will be the hospital of choice for those of us who value partying. Let’s drink shots from our Flutters. What the worst that can happen? We’re in the hospital, damn it. Code Yellow, drunk fox peeing off the balcony again.

Live the high-rise life.