Category Archives: Fear

Letter To God, 042411

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Bubble in the sky, 2011

Dear God,

I don’t believe in you. But I believe in the right for others to believe in you. But I don’t. Believe in you.

My wife and daughter do, however, believe in you. So, for their sake, I’m hoping I’m wrong and you do exist. I want happiness for them more than anything else I can think of. So, shoot a lighting bolt down from an empty sky and turn me to dust. And for them – protect, embrace, hug.

When I realized what this disease was about, and the lives and suffering it has caused, I knew I could not believe in a god that created cystic fibrosis.

I must have done something wrong in a previous life. I understand.

I am lucky. I understand.

I have everything I need. I understand.

I am so close to the perfect life. I understand the asterisk.

What I don’t understand is how you could design a disease that harms children. That takes them away from their parents. That makes them suffer so much. You are no god of mine.

You owe us a cure, or a remedy. A lifespan “increaser.” A stress and exacerbation reducer. And you owe it to us now. I have a feeling I won’t be on the list for it after this blog post, but I can live with your decision, or maybe I won’t. But if you give it to everyone else, good.

I suggest you send a spark to a scientist or doctor or mother or father or brother or sister, or anyone who will take that spark and put in a pill or nebulizer and make magic happen. Magic, magic, magic – it’s the least you can do.

If I read another blog post where an innocent baby, child or young adult has spent a night in the hospital because of this disease, I’m going to transform into a Phoenix and scorch the heavens until they are clean of anyone at your dinner table who thought CF was a good idea. It wasn’t. It’s not. Take it back.

It’s your turn to make it right for those still here. It’s too late to help the others. You’ll have to answer to them in person one day. And I hope you have a good excuse. You’re going to need it.

Please protect those who fight this disease, and the ones who love them. They demonstrate true courage and bravery every minute of every day, and never make the papers with “Hero” next to their names. They should. I hope you have a good reward for them in the end.

I expect mine will be a pile of coal, a shovel, and a furnace.

UC

My solar face and the quest for rock-hard buns

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My arms are covered in tape residue, and scabbed with sealed IV marks and needle pin-holes. Blown veins spark when bumped. My back aches. I ache. A constant wheeze vibrates my right lung.

A crescent moon scab has formed on my forearm where I tore a piece of tape off and took too many layers of skin. Empty Arrowhead water bottles litter my room. Blue gloves I was too lazy to walk to the trash can decorate the floor.

I throw a lot of stuff on the floor. Its easier than doing the IV ballet dance across the room, twisting, turning, cord, IV line tug, and back again.

I spend a lot of time looking at the floor. All the nurses wear Sketchers tush-toning shoes, though none will admit they work when I ask them if they do. “My posture is better.” “My feet are less tired.” I am looking for the first honest nurse to say, “my ass is moon-round, rock-hard now. Feel.” And I will.

After 9 days of fevers, I have a bad attitude.

My PFTs were down 30 to 40 percent today, depending on the number.

My face burns like the sun. The nurses use it to tan their faces. It only takes 30 seconds for a Saint-Tropez bronze to die for. Googling “burning face” and “fire face” yield all the wrong information, and are useless for an accurate diagnosis.

I have avoided peak flow devices in the hospital because I have always said they was worthless, and dangerous, for CF. The peak flow showed a 10 percent drop. I told them it was more. I was right, though I wish I had been wrong. Tomorrow, I may shove a peak flow meter down a doctor’s throat, or up his ass, whichever he prefers. Peak flow this.

After 9 days of fevers, my “blacks crackle and drag,” which is still my favorite line of poetry ever, thanks to Sylvia Plath.

I find it amazing how life can be moving along, I can be working hard to stay healthy, and one virus derails it all. My life is made of beach sand.

I tell my daughter, life isn’t fair. Don’t ever think it is. And don’t worry that it’s not. You’ll be happier. But some days, I wish it was and CF didn’t exist.

(Here’s a photo of my makeshift cooler-seat dining area. Now all I need is a camping tent to complete the look.)

20110407-084703.jpg

Packing Day

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I miss the days when packing for a trip took 45 minutes, not all day, and didn’t feel like defusing a bomb, hoping not to leave anything critical behind. I did exactly that in Hawaii a few years ago when I showed up without eFlow nebs. I felt ill when I realized they were sitting on the counter back home. And our trip budget took a hit with overnight plane delivery on a Sunday. (Yes, chocolate-covered macadamia nuts can sustain you for a week, but you’ll never eat them again.)

Count 'em out, ride 'em in, Ride 'em in, count 'em out, Count 'em out, ride 'em in, Rawhide!

There are a lot of meds and devices to keep track of, and it’s taking all afternoon to round them up and triple check them.

We’re officially on East Coast Time now in my house. Dinner will be at 4:30 PDT today. Bed by nine or ten, not midnight. Transportation will be here at 4:45 a.m. I have to wake up at 3:30 a.m PDT and do meds.

I started cipro today. No streaks, but I’m not taking any chances. I decided to fire the gun at the enemy first and not wait for it to surprise me – yes, I could be President one day with that preemptive skill.

Theme of the day: Travel light. I bought a new, smaller suitcase at Target, and I removed all ballast from my backpack: coins; old receipts; individually packaged hospital meds I never took; and limited clothing.

Part of my green initiative is wearing the same clothes for a longer period of time before changing and washing them. I wear the same T-shirt, shorts and underwear all week. Remember, I can go three weeks in the hospital without showering. So, wearing the same clothes for seven days . . . piece of cake. The world can thank me in a few years for all the detergent I saved from the ocean, and the energy to run the washing machine and dryer. Just don’t sit next to me on day six.

I fly to AZ first. I chose the close layover so if something bad happens on the plane, I can drive home or go to a hospital there. I’m comfortable with Phoenix and know my way around. It’s also not far if my wife has to travel to see me.

With luck, my next post will be from a hotel in NJ, which is what we once code named the hospital when my daughter was young. “Daddy’s in New Jersey for a week.” Now, it’s where I’m really going, though given the choice today, I might choose the local hospital. At least I don’t need to board a plane to get there.

No one lives forever

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Par-a-noia strikes deep
into your life it will creep
it starts when you’re always afraid
step out of line the man come and take you away
– Buffalo Springfield

I look better in black and white

I have a plane reservation for Monday. I don’t remember how long it’s been since I’ve flown. A year? Over a year?

Travel with cystic fibrosis hasn’t always been kind to me – hemoptysis over the Atlantic Ocean, German hospital; collapsed lung over Texas, chest tube and chest tube redux; and half-a-dozen or so travel episodes of coughing up blood, even in Hawaii – how screwed up is that?

And recently, I’ve had two embolizations and unpredictable moments of bleeding, sometimes due to exertion.

So, the thought of getting on a plane Monday scares me. It’s fear, pure, simple.

It bothers me to realize I’m afraid of something – deeply afraid.

Bad things happen when I travel.

If my lung bleeds on the plane, how much will it bleed? Will I be able to walk off the plane? Or, will I be carted through the airport to a waiting ambulance, my shirt Rorschach-red, people staring?

My crows fly wild, agitated, noisy.

The icing on the cake of indecision is the head cold I’ve been fighting with nasel irrigation, tea, vitamin D and M&Ms. The decision may not be mine to make after all. The cold may force me to stay home in what I like to call a “career-limiting move,” as if I had a career. But I have job, with health insurance. I’d like to keep it.

There is also the voice inside I like to call the “Train-wreck Watcher.” It gives me courage to go, to get on the plane, and see what madness might play out – to witness a possible derailment: a hospital in NJ; coughing up blood in front of my co-workers; or dealing with breath-taking stress and feeling trapped.

Train-wreck Watcher says: Is there anything the disease can throw at you that you cannot manage?

I don’t know. Is there? Roll the dice, sissy boy. No one lives forever.

When life attacks

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I spent yesterday afternoon in the ER – as a visitor. My wife went there because she had the panic attack of all panic attacks and her blood pressure skyrocketed. I wished I could have changed places with her.

I felt terrible that life had overflowed her bucket with lice, my hemoptysis, her crazy workload, and upcoming trip. I realized I was seeing a version of me when I go through anxiety attacks. It scared me because she’s been bulletproof up till now.

What’s kind of nutty is that I had to take a Xanax when she went to the ER because I had a panic attack. It was amusing when the doctor gave her a dose, too, as I was there to drive her home. I smiled because my little pill had kicked in for my pharmaceutical joy ride to the heavens. Sure, Doc, I’ll drive her home. My rocket ship is parked outside and ready to blast off. Maybe we’ll stop at a bar on Mars and knock down a couple of Xanax chasers.

It’s amazing how life and work become so overwhelming and hard to keep up with some days. My sincere thanks to the corporations for ratcheting up worker productivity the last few years. Companies may be right that high productivity is profitable, but they fail to factor in the cost of increased health care expenses. Even my healthy co-workers have problems dealing with the load. Some of them make secret ER visits and numerous doctor visits for their possible stress-related illnesses.

Tomorrow, my wife leaves on a business trip.  I want her to go because it will be good for her. But I don’t want her to go because if I cough up a lot of blood, it’s going to be one crazy time taking care of my daughter. She’ll have to stay with friends or hang out with me in the hospital. “Daddy, let’s go over your symptoms again. From what I can tell you’re experiencing what’s known as a panic attack. Now get over it so I can go back to playing Pokemon?” Okay, I will for you, bossy little princess.

The next three days are going to be like walking around with wet dynamite in my chest, hoping I don’t jostle it. Wish me luck.

Sunday Stories: Anger or CF? and Welcome to Liceland

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Anger or CF? Which came first?

When the SUV stopped hard in the middle of the crosswalk, we and the crowd of families with soccer kids had the “walk” symbol. The hurrying driver realized he’d stopped too deep, a common mistake easily forgiven at that point. But then he looked over at us and decided to compound his mistake and step on the gas and make the right turn. My fuse burned fast. And I added to his mistake by yelling out “Jerk Off” in front of everyone and, I hoped, loud enough for him to hear. My wife looked at me in the way only wives can do, and I apologized to everyone. I meant to say “asshole.” But I caught myself, just not in time to keep quiet. I redirected the impulse and fired off another nicer term for the young impressionable minds, each of whom, thanks to me, asked their parents tonight: What’s a Jerk-Off, Pa? Well, son, that’s someone who yells “Jerk-Off” in public. I don’t understand, Pa? Well, son, let me make it simple. It’s the same as an asshole. Exactly.

In a perfect world, without CF, my wish would have been for the SUV driver to stop, get out, and for me to deliver a beating to ensure he wouldn’t run a crosswalk again with kids present. It makes me wonder if I were “cystic fibrosis free,” would I be blogging from jail right now? Is my anger created by the trials of cystic fibrosis, or not? I believe I would not have the degree of pent-up anger without the life CF gave me, or has taken from me, depending on one’s point of view.

Welcome to Liceland. Now go home.

If my wife owned a flamethrower, our house would be a pile of ashes right now. She would let rip with the weapon and scream, “Burn in Hell, lice, Burn in Hell,” until there was nothing left. My daughter and I would stand watching, silent, fearful we might draw her attention and earn a good singeing of our hair as a precaution.

This weekend has been difficult on my wife, who has the strength and courage of a frontierswoman. But even lice can break the strong. She’s cried several times from being overwhelmed. She is due. Her chromosome-challenged husband has mild hemoptysis and may be hospital bound. And, our house, garage and a car are filled with quarantined black plastic bags of anything non-washable. “Can you fit in one of these bags,” she asked me. I kid that she did, maybe. Yes, I kid. Stop it, Fox.

The bug bags will be here for the next two weeks (she wants four weeks) while the eggs, if there are eggs,  hatch and die. My fear is that my wife will have done all of this work to eradicate the lice, then my daughter will go back to school Monday and be infected again.

We emailed the school Friday. They’ll do an inspection Monday. What’s interesting is how many families don’t tell the school when their kid gets lice. We discovered this over the weekend: “Oh, yeah, so and so had lice, and so did they and them. Oh, and them, too.” Yet, we don’t remember the school mentioning them or they. Oh, well, what can you do?

So, we continue to vacation in Liceland and abide by the strict laws of the country. We strip down to our birthday suits before entering the house, then receive a chemical shower, a body-cavity scan from TSA workers, and fresh white space suits. In my Darth Vader voice: “Lice, I am your father.”

We’ll kick the lice problem, one day. Or soon we’ll be living at the Holiday Inn for a few weeks until we catch bed bugs and have to move to the moon, which is bug free I hear. But who knows? Perhaps here is a louse living there that burrows into your ear and eats your brain, which, for me, makes the moon the perfect place to live.

Lice, Blood and Walmart – All Three Suck on a Friday Night

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It’s 12:39 in the morning. I’m typing this with lice shampoo in my hair. I was last to go after my wife spent the last eight hours combing lice out of my daughter’s hair and her own. Oh, and cleaning the bedding. I don’t have lice because I sleep on an old green couch (another post), but I’m taking one for the team – just in case I have the invisible kind of these little buggers. Looking at my wife comb them out of my daughter’s head made my head inch.

I spent part of the night at Walmart in the longest line you’d ever want to see when you’re trying to buy four $5 pillows (I need two) and three $5 movies for your mother-in-law who came over to man the washer and dryer. I almost walked out when the woman ahead of me decided she didn’t want 4 of the 47 items she’d purchased and the cashier had to re-ring the entire order – minus the detergent and jumbo box of Butterfingers. She kept the two dozen cans of cat food. I’m thinking she’s the type you see on the news with 200 cats living in her house.

I gutted it out and paid. Give me a medal, please.

Then I coughed up some blood. Not a lot, but enough to rock my world. I wrote the doctor and told him if he didn’t find a way to fix this, I was going to jump off the hospital roof next time. I didn’t say quite that. But I was thinking it. That counts for something.

Hold on. The timer is going off. I need to get the shampoo rinsed out before it melts my head like it’s made of wax, which isn’t far from the truth.

[wait for it, wait for it, wait for it.]

I’m back. That sucked. My wife washed the poison shampoo from my scalp. I’m hoping my hair doesn’t fall out while I sleep. I wouldn’t be surprised if it did. Though I think it’s more likely I’ll wake up to find lice the size of mice playing on my chest. I’ll tell them: “I’ve coughed up scarier bugs. Now run along.”

That’s all.

BREAKING NEWS: Blogger derails in midnight crash

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Mar 10, 7:32 PM EST

By HENRY CHINASKI
Associated Press

LOS ANGELES (AP) – An obscure blogger was injured in a mental derailment in a northern suburb of Los Angeles early this morning. The incident happened at approximately 12:30 a.m. Many details are still unconfirmed at this time. However, KCBS reported on its 9:00 a.m. news broadcast that the blogger was high on M&Ms while blogging late into the evening.

In confirmed witness reports from LAPD, the blogger experienced unusual pains like those of indigestion or heart-related troubles. He also felt anxiety over an upcoming trip to the state of New Jersey and a general sense of worthlessness. Mild hemoptysis is also suspected in adding to the feeling of dread experienced by the blogger.

The mental breakdown comes after weeks of staying up late writing blog posts while running on fumes and anxiety.

Rumors also persist there was constant pain in his back, which may have led to the heightened anxiety throughout the day and leading up to the episode in question.

Two witnesses, a large furry mutt and a lazy yellow Labrador, were on the scene and witnessed some of the events.

“I thought it was odd when he pushed my hindquarters off the couch. But then left within . . . what’s Time again? Well, he walked away soon after whenever,” said the yellow lab, clearly shaken by the behavior of the blogger. “I’m still upset. He does that to me every night. I have the spot. It’s mine. He just takes it like he owns it. Sometimes he grabs me by the collar. I feel bullied. It’s awful. But I still love him. I can’t explain it. He has it. Do I earn a treat for this interview?”

Family members who slept through the nightmarish agony and drama had no comment at this time. However, the furry mutt did provide additional details. “I saw him with his head in his hands for a long time. I was worried. Then he ate something small and round and drank some water,” added the mutt. “Later he went back to his couch and fell asleep. But he didn’t look so good this morning. Maybe it was bad kibble? It can happen. Eat some grass, that’s what I tried to tell him. He never listens.”

Though the blogger himself had no comment when the AP contacted him by phone, it was reported by KABC that he fell asleep at his desk several times today and felt lousy.

Unconfirmed reports indicate he stood on his front lawn at approximately noon today waiting for a meteor to fall on his head and crush him. However, AP sources have yet to confirm whether his wish was granted. No meteor sightings were reported in Los Angeles today.

According to both dogs, he ingested at least 200 M&Ms of various colors this afternoon in an effort to recapture his work “mojo.” A source who asked not to be identified confirmed the plan failed.

AP will continue to monitor the situation and bring you live updates should events warrant.

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Courage is hard to find some days

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I want to be the fearless guy – the one who can do anything and not care what anyone thinks, or look like it. John Belushi comes to mind. Charles Bukowski.  Bob Flanagan. Any stand-up comedian. I may have come close years ago in my bungy-jumping stage. If it was risky, I was willing to try it, or say it. Wrap a rubber band to my feet and let me jump. And I did.

He didn't have a fear bone in his body, but he did have a lot of drugs.

But it’s amazing how I’ve gone to the opposite extreme as I’ve aged. When I was younger, I didn’t care what happened to me. Now I have panic attacks because I’m afraid of dying in my sleep or on a plane. All it takes to set an attack in motion is a tweak in my chest for a fraction of a second. “Game on” in my head. With announcers, too.

And then there is this blog. I want to takes risks, push the envelope, be fearless. But I don’t know if I have the courage to do it, and that makes me disappointed in myself. The fear I’ve developed over the years, combined with OCD, is a roller-coaster of bravery and panic. Up and down, up and down. Like yesterday and today.

I pulled my first published post, the one written in the style of Charles Bukowski. I spent three days on it with my OCD firing like a rocket engine. I even held back in comparison to how far Bukowski pushes his prose. I think I got close to his style and how the world might have looked to him had he had cystic fibrosis. I knew the post pushed boundaries, even for this blog, and added a warning like you might find on property guarded by a crazy farmer with a loaded gun. But I thought the post was true to its subject. Then the “it sounded better in my head” part of fear crept in with: Are you crazy? But I summoned a crumb of courage and clicked “Publish” last night.

Then I panicked. I wrote another post to push the Bukowski post back one notch. Done, in the past. No one will notice it. I felt better. Then I woke up this morning in “spiraling out of control mode” thanks to lower back/kidney pain (another post).

What did I do? Not one comment. Not good. Hmm. Did I go too far? What will people think? I like the people who read my blog. I don’t even know them. But I do. They won’t understand the style and connect it to me. It is connected to me – I wrote it. The post is too far out there. But it’s mellow Bukowski compared to his works. It will be okay. Leave it, you wuss.

So, I removed it. And I’m not sure how I feel now. Disappointed in myself because I pulled it? Perhaps. I take this blog seriously. It’s interesting to put writing out there for others to read and see how it’s interpreted. If there’s a silver lining to this story, it’s that I am pushing boundaries because my posts have made me uncomfortable lately. The question is: do I have the courage to keep pushing?

If there’s there’s a blogging downside, it’s finding your own internal editor to tell you when you pushed too far, what’s gold or crap, and whether to hit “Publish” or “Move to Trash.” I can never tell. Maybe I need to ask: What would Bob Flanagan do?

Tapping the Maple Tree

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Lately, I’ve been tapping my anger like one taps a maple tree. I jab a spike in my right leg and let it drip sap into a bucket. Most of the time I keep the anger inside, contained. But slowly, I’ve been draining it, letting go of my fear of using it.

Does this hurt the tree? Because it hurts my leg.

We went to a restaurant a few weeks ago for lunch. It took forever to find a parking space. And when my daughter is hungry, that feels like forever and a day. The restaurant was half full; it was 2 p.m. The hostess came to take our drink order and they were out of fresh squeezed lemonade, their specialty. On a Saturday?

We ordered water and an ice tea. But the hostess never came back with the drinks. She walked by us a dozen times – we had transformed into customer ghosts. Then the waitress helped everyone except us. So, we got up and left. No one cared.

Not getting service made me feel bad because I take it personally. My wife says I shouldn’t because it has nothing to do with me – it was a poorly run restaurant. But I tell her the world revolves around me. It always has something to do with me. Was there something wrong with me? Look, I know there’s something wrong with me, but does it really show in the 10 minutes I’ve been in your restaurant? Are you clairvoyant? Did you read my mind and not like what you saw? I don’t like it either, but you don’t have ESP. If you did, you would have seen I’m a great tipper. So there, Amazing Kreskin.

Then I remembered rule #1 in the Book of the Unknown: Never leave the house without the paper bag on your head – you’ll only frighten people if you do.

So, I wrote the restaurant. I’ve written many emails to companies expressing my happiness or displeasure. I had never used the “F” word in one before. Never. Time to tap the anger tree. Bang. I showed it to my wife: “Are you really going to send it?” Bang, I pressed “send.” Then I thought, “What did I just do?” and panicked, a little. But something about it felt good, like they deserved it. The staff at the restaurant was incompetent and lethargic. They ruined our lunch and made us feel bad. The crappy restaurant needed a wake-up call, something with punch – an email capturing the emotion of how we felt. I did my best to communicate it. I never heard back.

We ate lunch at Jamba Juice next to the blenders. I offered my daughter 10 bucks to walk into the evil restaurant and throw her Mango-a-go-go on the floor. “Then, run like the wind. We’ll have the car ready.” Simple plan. She declined. At least she laughed and saw the humor in it. That’s my girl.