Tag Archives: time

Shallow thoughts and deep fears

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The birth of my daughter nine years ago made me see the world differently – good and bad. It was a great day. There have been happy moments that have made me feel guilty I’ve experienced them, like the squeal of pure joy my daughter makes over the simplest discovery and surprise.

When she was three or four, I would hide an object, usually a small stuffed animal, under a couch pillow and let her believe she had magic powers. “Say the magic words,” I said. And she would do her best to say words that sounded magical. I would press the object against the pillow, lifting them both, and “presto” it was gone. Then through some strategic tosses with my wife the object would make its way into another room in the house where my daughter would discover it. Magic; magical. To live and experience that moment and the look on her face of amazement and pride makes me the luckiest of men.

But not every story has a magical ending. There is the reality and responsibility of raising a daughter into this world and ensuring she experiences the joy of her own child’s mad happy scream one day. And I try not to be a pessimist when I look at the future that is not my own, but was part of my creation. I see peak oil capacity on the horizon, more people in prison than ever before, whorish government officials abusing their power, depleted fish in our oceans, and population growth this earth’s limited resources cannot support. And I worry. I worry a lot. And I feel helpless. A lot.

Couple these fears with my opinion of how low humanity can sink, including me, and I spend my days holding dark thoughts at bay. I’m not ready to buy a Mayan calendar yet, but I’m worried “something wicked this way comes.” And I feel like I should be doing more to prepare my wife and daughter for the day it shows up, though I hope it never does. I want to be proven wrong, but the math and science don’t look good.

I worry about my wife and daughter when I’m gone. They’re not as street smart as they should be. It’s not in them. They are good. I have seen more than I ever wanted to, or asked to. Been in situations I shouldn’t have been in. Done things in the past I’m not proud off. Sins may be forgiven, but they’re not forgotten.

I have no answers tonight. Just the need to get the thoughts and fears out and fill the open space in my head with solutions and positive thoughts. There is always a solution. Now I just have to think of one. People I love are depending on it.

Another winning day, another dog

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I’m a lifelong football fan – lifelong Denver Broncos fan. So, Super Bowl Sunday is a holiday in my house. When I tell my daughter that it’s my favorite day of the year, she gets upset, telling me I should choose her birthday. “That day is also in my top five,” I say, which makes her crazy.

I buy this calendar every year because I am afraid that if I don't bad things will happen

I mention the Super Bowl because days like this make me feel like a winner. I didn’t bet on the Packers. However, I did get to watch the game at home with my wife, daughter, and closest friend, who has watched the last 16 Super Bowls with me. That is a winning day, my friends, because I didn’t cough up blood and I wasn’t in the hospital.

I also got to watch another Super Bowl. Though that may seem like a given for some, I can’t be sure that I’ll be around to watch next year’s – I’m not taking anything for granted. Milestones matter.

My daughter turns 9 soon, and I’ll cherish the fact that I’m here to see her ninth birthday, though I don’t want to jinx myself. There is always the chance I’ll have to celebrate the actual day while I’m in the hospital.

Here’s how superstitious and strange I am. I have a 365 Dogs calendar. Each day, I rip one page off of it (except weekends with two days on one page). I do not tear a page off until the actual day arrives. I am afraid to remove the page the night before lest it causes me not to live through the night to see the day – punishment for my overconfidence of looking ahead.

Yes, it’s not easy being me.

Even now I worry about waking up healthy tomorrow, as every time I blog about a good day, I get punished by CF. If I’m lucky, CF will skip this post and I’ll escape its curse of sharing good days. We’ll see. I have a bag packed just in case.

Stay healthy.

Letter To My Daughter – 02/04/11

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Dearest Munchkin,

One year ago today I started writing this blog – for you, I thought. But I’m not sure now. I’m just not sure at all.

I hope you read this post one day, and other posts, or some of them, the ones your mom allows you to read. I’ve pushed the limits a few times and have had second thoughts about some of the things I’ve written. It is what it is. I’ve done my best to be frank and present the truth as I see it. Though, as I hope you know, truth does not equal fact. (T≠F). There are a few sentences/posts I should probably take back, though Fox would disagree. [Fox here, I ain’t taking back anything, yellow Labrador. There are no do-overs.]

I’m not sure how interested you’ll be in what’s here. I haven’t spoken to my father in 30 years and don’t regret it, and I don’t really have much to say to my mother. So, I’m not the best judge of what would be interesting to read when it comes to parents. I don’t think I could get past the first paragraph of anything they wrote. So, no guilt if you’d rather be playing your guitar or enjoying life. My gut tells me your mother will be more interested and surprised, as she didn’t know I wrote this blog, or at least to this point. She’s also been more aware of the events I’ve written about, especially the hospital stays.

If there’s anything interesting to read, I say it’s the comments. And though I’ve written close to 200 posts in the last 365 days, nothing I’ve said is as interesting or as touching as the comments I’ve received. Perhaps, that’s the true and best story of this blog – the people behind those comments and their lives and the fact that during 2010 and 2011 I was lucky enough to connect with them through this blog. And somehow despite this awful disease, something special and hopeful can rise from the darkness of living with cystic fibrosis. It feels good to get something back from a disease with the sole purpose to destroy you piece by piece.

And if I look at blogging as a whole, I’d say it feels like white-water rafting, which I’ve done a couple of times. It’s thrilling, scary, tiring, and when I’ve wanted off the raft, my friends have motivated me to hunker down and keep rowing. Sometimes the raft just rows itself and sometimes it takes great effort. But always, it’s rewarding to know you got someplace, flexed your creativity, experienced something new and unexpected, and pushed yourself beyond your comfort zone.

I hope when and if you read this, you are happy – or working your way to becoming happy. I hope you’re not caught up in the material things in life and you understand cash is king and freedom. I hope you’re doing what you want to do and haven’t become chained down with things that don’t matter.

I hope you love your mother and are making sure she is happy and you’re saying things to her filled with love and happiness. Your mother is special and unique and has only love and kindness in her. I’ve never met anyone like her who was so pure of thought, though the world and a corporate job have done their best to try to change that. But they haven’t. I hope you don’t either with the parts of you that are more me than her.

Lastly, I hope your dreams come true. Be patient and work hard. They will. I hope you take risks when it comes to doing what you are most passionate about in life. I didn’t and have regretted it every day. I was so afraid of failure, which caused failure, or didn’t allow me to achieve the success I had hoped for. It’s my wish that you’ll have more courage.

Remember: I love you; your mother loves you; everything is temporary. It’s that simple. Sometimes.

Hugs and kisses,

Daddy

Ocean waves of despair

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

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

One after another, they arrive without a break in sight

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

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

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

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

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

Two weeks living like a Zooble

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

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

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

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

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

Stay healthy.

Just around the corner to the light of day

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Can one have a mid-life crisis with CF? Many years ago, no one with CF lived long enough to have one. And clearly, barring any miracle of science and new lungs, I’ve passed my midlife point. Does “late-life crisis” sound more accurate?

Whatever I’m having is a realization that the days ahead of me are fewer in number compared to the days behind me. It’s causing me to reflect upon my past, the mistakes I’ve made, and what I cannot do anymore – the doors closed to me. It’s about quality of life, how to hold on to what I have – my job and a life of not allowing CF to overwhelm me – for as long as I can. And I wonder: Is there still time for me to create something spectacular in my life?

But the disease is playing by its own rules these days and my life as I know it is similar to holding two handfuls of sand in the wind. Everything is temporary, but I’d rather CF not speed up the process.

I once heard a parent of a CFer speak at a golf tournament fundraiser. He spoke about how he wanted to see his daughter grow up to be 18, to graduate high school. That was it. If he could just have that he would be happy. But when she reached 18 he wanted more. And at 21, he wanted more. And so on. I can relate. I never expected to be here this long. And I set my own age goals in life. Now I set them by my daughter’s clock, to live to see her graduate high school. But now I fear that may be too aggressive. It’s 10 years out. Should I be thinking in shorter chunks of time?

And then there is that hurdle of blood I have to jump.

The current unpredictability of the bleeding is a bitch. I’m gun shy now and almost afraid to write about it. Each cough feels like it’s going to be blood and send me back to hell. I know it’ll return; the doctors missed the bleeder. I just want to make it two more weeks while my daughter is on vacation and we can enjoy the holidays. Then, I can bleed. But how can I function with this time bomb ticking? What if I’m with my daughter in a public place and it breaks loose?

I just had streaking. Can I make it through tonight?

Two more weeks. It seems like such a long time. I don’t want to speed it up because it’s vacation. However, I look forward to the pressure being released if I do make it. Then, I’ll probably want one more week and another and another after that. Isn’t that the way it always is?

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.

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 Labrador Print

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I have this hanging on my wall. It reminds me of the lab I used to have.

I heart labs. Yes, I admit it. I do. And I’m not embarrassed to share my deepest feelings about them here on my blog.

I’ve had labs most of my life. A couple of black ones when I grew up. And a chocolate lab who lived 15 years and survived a rattlesnake bite, the eating of several pounds of Hawaiian chocolate (the fact she swallowed them whole with wrappers on saved her life), a bad reaction to a medication for arthritis, and the first shot the vet gave her to end her life. She fought to the last possible moment when the vet, red-faced, had to inject a second dose.

Now we have a yellow lab, which was supposed to be a black lab, but my wife and daughter used mind control on me when we visited the breeder looking at puppies. Somehow we left with a deposit on a yellow. To this day, I’m not sure how that happened, how I gave in to them on that decision. But when I look at the four-year-old yellow lab sleeping at my feet, I’m glad I did. She’s perfect.

But that’s not why I’m writing this post.

Why I’m writing it is because I have three framed prints of Labradors in my office. Two of them are paintings of hunting labs, manly dogs. But then there’s a third poster – one slightly off-kilter. There are no shotguns in the painting, no testosterone-laced hunting scene in the background to make me feel better. I look at it and wonder: What was I thinking when I picked out that one? I thought it was a good use of my money? Really? I fear digging too deep in my memories to dredge up any deep thoughts about its purchase. I understand the simple theme of it: Lab pups dreaming about growing up into adult labs.

Ebony and Ivory - can't you just hear that song playing in your head all it the time. I do.

But most of all I wonder about myself and who I was when I saw it in a catalog and felt the overwhelming need to use what money I had at the time and order it. I look back on my life now and thing of the all the cash I’m spent on stuff I had to have, much of it discarded or something you’d sell at a garage sale for a couple of dollars. I struggle with the question of value and consumerism all the time.

But now I look at the print of the two labs again and I can feel the testosterone draining from my pores.  I like the print. It makes me feel warm inside like when I drink hot chocolate and wrap myself up in a quilt and read the latest trashy romance novel. Hmm, that sounds good. Ooh, I have goosey bumps just thinking about it. How sweet it is.

I HAVE LOST MY MIND. WHAT IS WRONG WITH ME. DAMN, THIS BAG OVER MY HEAD GETS HOT.

Sorry, I plead momentary insanity. That is the power the print has over people. Question it not.

Here’s something more embarrassing. I used to own a Labrador t-shirt with an image of a large chocolate lab head on it and “Chocolate Labrador” printed under it, as if one wouldn’t recognize the disembodied head of a lab. I think it went to Goodwill several years ago. I won’t be surprised if sometime in the future when I’m homeless and pushing my shopping cart down Ventura Blvd, black lab on a rope next to my side, I’ll see a fellow man of the streets pushing his cart toward me. He’ll be wearing my old lab T-shirt. And we’ll give each other a nod like only dudes do. No words will leave our lips, but we’ll know. Yeah, we love labs. Yes, yes we do.

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.