Category Archives: Fear

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.

Shallow thoughts from an idiot

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I thought I’d do more. Be more. Help others. Be more successful.

All in all, when I look back on my life, I feel like I failed. I’m not sure I’d use the word failure, but I might be somewhere close to that. It feels like it.

I can think of plenty of excuses. I won’t list them, as I tell my daughter we are responsible for our own actions. I am responsible for mine. Somehow time went by and I didn’t do what I thought I’d do – amount to what I thought I’d amount to. Not only that, I never took the risks I should have taken. I was so afraid of failure, of making mistakes, of what other people thought of me. It paralyzed me. And I think that lack of taking risks didn’t give me the payoff I probably needed to feel like a success – to be someone that mattered.

Over the years, there were successes. I went back to college and graduated with honors. That was my Everest of self-esteem climbed and no one can take it away from me. I married a brave woman with a heart of gold and we have a daughter we love. We’re doing our best not to screw her up, but it’s not easy most days. Where’s the 365-day calendar telling you how do succeed in raising a child?

Though I have had successes, my expectations were high. I wish I could do it again, but there are no do-overs. I wish I could  say things I’ve said differently, but there is no way to take them back. I wish I had had better relationships earlier in my life and maintained them, but that’s a life lesson I learned late. I wish I didn’t do a lot of the things I did, but I can’t undo them, only try to make up for them.

I wish I didn’t feel like a misfit in a world of normal people who get it.

I have lots of wishes. And I wonder what my life would have been like had I not been born with cystic fibrosis. I wish I could watch the movie of what my life would have been without it. And I fantasize that if I had one wish I would pass up my desire to see my life without the disease. I’d use that wish to cure the disease for everyone with it.

And that’s where my pain comes from. I thought I’d have the life where I’d have the chance for heroic acts like that, to affect a great number of people in a positive way. Oh, well, I’m still the luckiest guy in the room and I have no reason to cry about anything. Life is good. I have to admit it would be better without hemoptysis, but this too shall pass one way or another.

Why doesn’t CF make us stress resistant to life’s troubles?

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Cystic fibrosis stress is difficult to describe to others outside of the disease’s reach. But it’s not that nuance of stress bothering me tonight, though when I think of going back to the hospital one day I feel like an ex-con who says he’ll never go to prison again. They’ll never take me alive. Now that feels stressful.

Where's the hospital bed in this ICU picture?

Tonight, the part of CF irritating me revolves around being stress resistant to non-CF related stress. At one point in my life, in my 20s, I had that power. I didn’t care what happened and somehow survived my own consistent stupid acts of defiance.

I want that feeling back.

Cystic fibrosis should come with superpowers when it comes to fighting work and life stress in general. But it doesn’t. I worry about too many things and I feel I shouldn’t. CF should protect me from the bullshit. Perhaps, it helps reduce stress a bit. After the last two embolizations, I don’t sweat the small stuff at work as much because I don’t know how long I’ll be able to work. I’m in extra time now. I don’t get too bent over trivial matters.

That’s not to say I’m not a perfectionist. I care about the work. I just try not to worry about what might go wrong or when something does. There is always a solution. Unfortunately, not everyone has spent a portion of their lives in the hospital. My co-workers stress over details that will never make an impact in life, or they’re afraid to take risks. Fear overwhelms them at times.

Why can’t I ignore all of these stressors when I know today might be my last? Well, bills have to be paid; daily life must be lived. I need health insurance. My life is not the romantic vision of dying with the mantra of  “you’ve got two months to live so go crazy and take care of your bucket list.” It’s a constant internal back and forth of living for today and planning for tomorrow. Blow all your dough today and you’ll be poor tomorrow.

Life would be much easier if when we were born, we knew exactly how much time we had. I’d like to know when I have 60 days left to go. Watch the partying of all time begin – I wouldn’t worry about a thing. Not one thing. That is until day 61 rolled around and I woke up flat broke, addicted to coke and sleeping in my wrecked Porsche 911 stuck in two feet of Pacific Ocean surf and sand. Worst of all, I’d still have CF.

Life is all about the correct timing of one’s recklessness, isn’t it?

What does the future hold?

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On Friday afternoon I led a conference call with some members of the department. They were upset because the senior management of the department is bringing in consultants to do the job they’re doing. So, naturally they feel threatened and discombobulated about the tactic and they worry about their jobs. I had to listen to 30 minutes of them imagining every possible negative scenario that might happen. Then after the maple tree of discontent and fear had been tapped dry and its sticky syrup rubbed to a nice protective lather, I asked: Is there anything positive that might come from this situation?

Silence on the phone. More silence. I refused to break it.

“Well, maybe,” one of the fearful said. “Perhaps management will get a better idea of the scope of our jobs.” Bingo. There is a possible positive outcome. And more of them came up in the conversation and the negative outcomes fell by the wayside. I’m not sure which will come true for the team when we bring in hired guns. I do know from experience it will never be as bad as some of them predicted. The sky won’t fall and lightning won’t kill them.

And I wonder how I’ve modeled this negative outlook over the years and now with cystic fibrosis. The belief that one can predict the future must come with the disease. And I’ve made the mistake that I can prognosticate all of CF’s negative outcomes. When I was young I predicted that no one would ever love me and I would never get married, and a child was impossible. Yes, one mother of a girlfriend didn’t want her daughter dating me because I had CF and no future. Yet somehow I met someone else who was brave, a fighter, and believed in a future with positive outcomes.

I also predicted I would never make it to 30. Wrong again.

I have a long list of predictions I’ve blown over the years.

So, today I wonder: What does the future hold for me now? My answer: I have no clue, and I’m not going to spend my precious time worrying about it today. I’d probably guess wrong anyway. History shows I have that talent.

The Cost of Battle

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If I can compare the 20 days in the hospital to anything, it would be 20 days in enemy territory getting shot at and dodging explosions. In the movies, when the lead actor escapes the battlefield there is a moment of personal inventory. What’s bleeding? What’s broken? It’s just good to be alive. That’s the point. To survive no matter what. In the movies everything heals over time.

I’ve been taking inventory the last few days.

Hearing – more lost thanks to the 20 days of tobra. I can’t hear some high pitch sounds in our house like the alarm. The sound is gone to me. My ears play Jingle Bells 24/7. I left for battle and the explosions took their toll. When I returned, some of my hearing stayed at the hospital. Hasta la vista, high pitched sounds.

Lung function down over 20 percent according to the PFT in the hospital. Will it come back? Let’s hope.

O2 levels normal. That’s good news. So far so good.

Low grade fevers and chills. Still hanging on me. 5:00 p.m. rolls around and it’s time for a nap and baby bottle for me. I’m gone. The CF center seems content to let me suffer through them each day. It’s probably my anger talking. I’m still irritated about some of the decisions or delayed decisions of the stay. The CF team is solid though. I know they care. They just have a lot of patients to deal with.

Over 10 pounds shredded thanks to sitting on my ass doing endless IVs and a lack of an appetite for the same bland food every day. The endless fluids they gave me in the hospital masked the weight loss. At least I’m not peeing 20 times a day anymore.

No blood. That’s a good thing. It hasn’t returned yet. If it does, I can’t decide if I’ll go back in the hospital or just hunt down the people who couldn’t get it right after two embolizations. I’ll throw them on a table and cut into their groin and see how much they like it and educate them on the importance of getting it correct the first time.

Aches and pains. I could use a little time on a medieval torture rack being stretched right now. Or tie me between two horses and pull my limbs until my back pops and I get back the two inches in height I probably lost in the hospital. Tell me again why they don’t offer massage therapy in the hospital? I can get all the morphine I want while I’m there, but a little quality time face down with a certified member of the massage community digging her knuckles into my backside is verboten.  That makes no sense.

All in all, I got my ass beat. And that makes me angry because it’s embarrassing to get beat up. Worst of all, CF didn’t do all of the beating. The doctors helped and I did my part with mistakes I made. Hindsight again. I wonder if I can have it removed? Life would be easier if I weren’t tortured by my errors. I should have seen the landmines, been more aggressive about getting the embolization done quickly instead of waiting six days. There were plenty of other errors I made. Where did my courage go while I was there?

The Scarlet Letters: CF

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I feel like I’ve been running from a monster most of my life. It’s the type of running you see in the movies when zombies are closing in on the humans or when Dustin Hoffman sprints away from the bad guys in Marathon Man. It’s called running for your life. And on day 18 of this hospital stay, half my ass is missing from where cystic fibrosis took its most recent bite.

Today is also the day when I had to let the company I work for know about CF. No more hiding it. I have certain protections now under the ADA, which is nice, but I’d rather not have to deal with it and be CF-free. My denial is over – I have CF. The HR department was very nice about the situation. However, as of today, I’m not allowed to work in the hospital until my doctor provides a letter stating it’s okay. In a way, I feel like a weight has been lifted off of my shoulders. I’ve been hiding CF and my hospitalization for over 10 years now. How many conference calls have I held in hospital bathrooms? It might be nice in the future not to have to do a dance every time I go in for IVs.

So, here I sit, wings clipped, and I can actually take the time to write a post. It’s such an odd feeling not to be working, not to be thinking about work. I don’t like it, but I don’t have a choice. And I may find a way around it. (Fox has many tricks he can share.) I have another call with HR tomorrow and I’ll know more about what I can do and I can’t do. And I realize that from this point forward I’ll be linked to CF at work. That bothers me. I might as well sew a big CF on my chest. It’s not about me anymore. It’s about us – me and my zombie pal CF. Someone send me a sawed-off shotgun, please. I need to blast its head off.

Embolization watch and the TV show Dexter

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(Please excuse typos. Written on my iPad while I have a raging headache from non-stop IVs.)

Well, I can’t say that days two and three in the hole have been a real joy. With the exception of coughing up blood, I felt better before I came in on Sunday. Now I feel crappy from sitting in this room all day trying not to bleed, wondering what guy has to do to get a little glue in his lung.

Last night I came about as close as you can to moving to the ICU and then an embolization. I stood up to walk across the room and felt the pop in my lung and the blood followed. Luckily, one of the nurses had the vision to leave a pink kidney shaped basin in my room, but not all of the blood made it there. Some of it landed on my UCLA shirt that I wear to mess with the Trojan fans here, and my sheets have dried blood on them today. If you took a CSI light to the room I’m sure it’s in places I can’t see. It’s amazing where blood goes when it splatters. It’s not like coughing up Gatorade.

Speaking of blood, I’ve been watching Dexter episodes. Great show. I’m up to season three. What hits me about the show is how much I relate to Dexter himself. I’m not talking about the serial killer part so don’t call the police, though I would love to take out bad guys, but not by chopping them up. A sniper’s rifle would do. Rather, I relate to Dexter keeping a secret from those he works with and his life with blood.

Yesterday, to avoid the RTs who burst in and yell “ready for your treatment,” I spent 30 minutes in the bathroom on a conference call with the heads of the department I work in. Then there are other times I’m on the phone and someone will come in and I have to do a dance of signaling the person to keep quiet while I get off the phone. I am doing my best to keep the CF secret. But it’s getting harder to do so. I feel like I live in this hospital.

And I can tell you my single greatest source of stress in maintaining a job while I do this dance of having CF and working. Is that similar to Dexter maintaining his “normal life” while leading the life of a killer? It would be much easier if I could kick back and read and watch videos all day. But I don’t want to give up the job.

Still, it’s so embarrassing to tell my boss that once again I’m in the hospital. And working in the hospital is getting harder when I don’t feel as well. There were times today I stared at the screen for a half hour fighting to stay awake. It was easier to be in the hospital when I was younger because I had the power of youth on my side.

So, like Dexter, I hide my big secret and do my best not to get discovered. I know it’s only a matter of time before I can’t do it anymore – when I run out of tricks. When that day comes I know I’ll feel a great sense of relief but sadness, too. And I hope that one day I don’t live my life in fear of blood. If only Dexter could be a serial killer of bacteria – Cystic fibrosis would be history.

California Dreaming

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I was sitting at the dining room table yesterday morning blowing into my flutter when I heard screaming out on the street. The type where you stop what you’re doing to listen again. Is it kids? Something else? Definitely something else when I heard the second scream. I walked out the back door and looked over the fence and saw a woman who lives a few houses away, her face red, blotchy and wet from crying. Someone stole from her. Money and a computer, she claimed. She had her children taken away not long ago, too. Another neighbor was helping her. Sometimes people do scream in pain like in the movies. Yes, they do. And it wasn’t pleasant to watch. So I didn’t and went back in the house.

Life in the big city

I was pulling out of the gas station the other day when a man driving in stopped next to me so our windows were facing each other, his vehicle’s rear end sticking out in traffic, a magnet for honking horns, which irritated me. Then he asked me for two bucks for oil. Oil? Who buys oil anymore at a gas station with a market in it? Do they sell oil? Or did he mean gas? And asking me while we’re in our cars? I didn’t say anything to him. Not a word. I shook my head and drove off.

The local Barnes and Noble has become a hot spot for begging. And I usually give in. Hand the person a buck if they have a good story. Once it was a young girl who looked like she lived in Topanga Canyon. She wore feather earrings and a leather vest with fringe, like she might be a healer or hippie time traveler. She needed money to buy gas to get home. Do time machines run on fossil fuel? I didn’t ask. I gave her five bucks. She was someone’s daughter and mine was standing next to me. There have been others asking for money. More in the last year than in the prior 20 or so.

The lawns in my neighborhood look terrible. We have watering restrictions this summer. And LA DWP raised rates. But that’s not the whole story. Limited watering causes brown spots. Some lawns in my neighborhood haven’t been watered at all. Water isn’t cheap. Neither is electricity. The combo bill is a killer, as we live in a desert with most summer days over 100 degrees, though this summer has been cool. Many have chosen to save money and let their grass die. Other lawns are full of tall weeds where neighbors have decided not to water and mow. Or they’ve abandoned the house. One neighbor’s lawn is gone. It’s dirt. Just dirt. My lawn looks more green than brown and I water it on the days I’m allowed. But would I if I were unemployed or about to lose my house? I doubt I would.

Just a few years ago, large metal trash bins for remodeling littered the streets of my neighborhood. But those bins are long gone now. And what they left in their wake isn’t pretty.

Life at 26,000 feet

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I’m not going to live forever. That’s my big revelation for the night. But it’s true. And it has taken me a great deal of time to realize this. I’m not.

I think of my age, 48, cystic fibrosis, and past events. Two collapsed lungs and the small scars on my chest from the chest tubes. A skin cancer removed that left a scar like a bullet hole on my chest because the Vest pulled the stitches apart. A blood clot in my neck that will never go away and required a year’s worth of shots in my stomach to prove its permanence. It too has left a mark on my chest, though this one is different from the penetration scars. Blue veins zig zag to create new pathways for blood flow and look like a map of highways across the USA. So my doctor says, the reason they’re there, not what they look like. What I know is that when I take my shirt off there is a story – not all CF scarring is invisible to the human eye.

And there are the hospitalizations. And the episodes of hemoptysis and bouts of C diff. And my irregular heartbeat and mild pulmonary hypertension. And the fact I’ve reached an age that kills healthy people. Cancer, heart attacks, strokes, bad eggs. You name it.

But I need to live 10 more years, to see my daughter graduate high school. That’s my goal. To see her graduate. That was my mother’s goal, to see me graduate high school. She had it easy thanks to my set of defective genes. But now I have my goal and I look out at 10 years and think that is a long time to go and a hard road to travel. How many hospitalizations will there be? 20? 30? What unexpected events will rock me? How many collapsed lungs and how much hemostysis?

I love this mountain

How can I even have the nerve to tempt fate and think that I could make it another 10 years with what life and cystic fibrosis have in store for me? I might as well climb Mt. Everest. Which goal has a better chance of happening? Well, obviously, I can’t climb, so I guess that’s an easy one to answer. But just surviving 10 more years is my mountain to climb, my impossible dream. I may not make it past next month with what’s brewing inside my guts right now.

The question I’ve been spending a lot of time thinking about lately is how I am going to spend the remaining seconds, minutes and hours I have left. I won’t presume to think that I have days left. I’ve learned how the karma of this disease works. Pride and hope and ego get crushed fast and hard. If I just string some of these seconds together, perhaps I’ll get a day. If I’m lucky.

Tonight, denial no longer protecting me, I realize I’m standing at 26,000 feet above sea level in what climbers call the death zone. It’s one step at a time now. It will be a victory when I wake up tomorrow morning. That’s how I’m going to look at it from this point forward.

Random Thoughts About Fear and Anger

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Many years ago, I was driving in West L.A. on the 10 freeway heading west to Santa Monica. A driver in an SUV cut me off and it was all I could do to hit the brakes and move over slightly to avoid an accident. I laid on my horn and the driver who had caused the near miss, now directly in front of me, flipped me the bird.

There was something so unfair about the action of the other driver that it pushed my level of anger over the edge in a heartbeat. Bang, from happy to angry in less than a second. I flipped the bird back and followed the driver over the course of the next few miles, matching every lane change, until the person in the SUV didn’t respond and took an exit. I decided not to pursue it because it would’ve escalated in a bad way.

What would I hope to prove if I had a confrontation with the other driver? Did I have to prove I was right? How do you prove that to a person who blames you for their actions? The same person who was the catalyst for the situation and your reaction. How did we see the situation so differently?

In hindsight, I should have given the SUV a pass – just hits the brakes without adding the horn. Now when I get cut off, I hold back and don’t respond. I guess that’s a sign of maturity. But it feels like fear and does nothing to make the anger go away. The anger stays forever.

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