Meet Mr. Discomfort

Mark down yesterday as the first time my daughter said “I hate you” to me. But both and wife and I were glad she did. True. And I kind of earned it. I’ll explain.

First, my wife is the better parent, as if that needs explaining to anyone reading this blog. She’s up on the parent mags and is loving and caring. I stumble through life and wing it, happy to wake up each morning, which is an instant win in my mind.

And then there is our talented and smart 9 year-old daughter going through a transitional stage and testing the borders of the soon to be teenage years. And though we think our daughter is special, as all parents do of their children, I worry that she lives too comfortable of an existence.

My wife and I are not rich. We both work. Our house is less than 1,900 sq ft, which gives me house envy here in Los Angeles. And as an only child, our daughter gets all of our attention and lives a good life. And though her hardship and defining moment may come at anytime when my lungs fail or I get hit by a moon rock, she leans toward not wanting to break out of her comfort zone, and is a little on the shy side, especially with adults.

That’s where I come in. I’m Mr. Discomfort and my picture should be on a bottle with a really long legal disclaimer, a number for the local poison-control hotline, and the warning: “May cause irritation.” 

It’s my job to shake things up when life stagnates.

I get bothered when my daughter holds her feelings in and doesn’t participate in discussions. So, rather than have the silent young lady at the table sitting it out while life goes by, I push and prod until we have a mild conflict going that leads to emotion and the flexing and testing of communication skills. And most importantly in the end: growth.

So, when the young firecracker’s fuse ran out and she asked us if it was okay to speak exactly what was on her mind, we gave her the green light. We had plenty of burn cream in the kitchen.

And when she said “I really, really hate you right now” I was okay with that. It was a breakthrough of her not holding in her emotions and expressing herself. And more importantly, it resulted in her gaining the confidence to take singing and karate lessons, which is what the conversation was about in the first place – her not trying new things in life and ending up sad about it later as an adult.

When opportunities present themselves, we said, take advantage. Or, the moment may be lost and you’ll regret it.

To my daughter’s credit, she got it. And soon she’ll be kicking the daylights out of a karate bag and singing Lady Gaga songs.

The most touching moment came later that night outside when she asked me if I loved her. Yes, I do love you, I said.

Even though I said I hated you?

Yes, I said. Always. No matter what.

And the night was magical and mile 9 of the marathon continued with me skirting the fine line of “near-disaster” parenting, proving once again, even numskulls get lucky once in awhile.

Letter to my daughter 06/13/11

[To my friends: I’ve been tinkering with this post for almost two weeks. It’s the most frustrating of my letters to my daughter and makes me wish I had told my wife about my blog so she could edit it. I’m posting it so I can move on to new posts. However, I’ll probably revise this one forever. ]

Dearest Daughter,

The mistakes I’ve made in my life haunt me. Probably more than they should. But I can’t help it and I can’t forget them.

I wish I could take what I’ve learned and transfer that knowledge directly to your mind, helping you avoid the same ones. But I know you need to make your own.

Perhaps, I can help you in an unusual way.

Creative commons: Photo by Chefranden

If a butterfly flaps its wings in Hawaii, will it affect the weather in California? This is my version, by the way. And, my answer is “no, it will not. Or, there is no way to prove it.” However, if a nuclear power plant melts down in Japan, will it affect California? Yes.

So, there are obvious, major events we can measure – radiation – and events we can’t – the influence of the butterfly’s wings.

But when it comes to your life, the butterfly flapping its wings, or the small event seemingly with little impact at the time, matters a great deal.

Think of the timeline of your life, past and future. Actions or a lack of action in your life, especially early on, will change your life when you’re older – for better and worse. In my case, worse.

I think of my life now and believe it should be easier than it is. I should know more than I do. I should know how to do more things – play the guitar, solve harder math questions, identify more plants and trees, make more money, have the perfect career. I should be in a better position to take care of you and your mother.

And when I look back on my life, my situation now is a creation from simple actions I took or didn’t take when I was younger – when opportunity presented itself. I hung out with the wrong people and made the wrong choices, and never factored in the future.

Here’s the simple equation: (here and now + anything goes) – an eye on the future = the hole you’ll have to dig yourself out of for the rest of your life.

Creative Commons: Photo by shark001

This doesn’t mean you can’t have fun, or must work yourself to the bone. Have fun. Enjoy life. Just remember little events and choices have potentially big consequences later on in life. You’ll have to live with the good and bad decisions. No matter what though, don’t beat yourself up like I have. Let the bad ones go.

I’ll leave you with this. Until you know exactly what you want with your life – what makes you the happiest – open as many doors as possible, try as many far-reaching experiences as possible. Play the guitar, the piano. Learn karate. Skeet shoot. Make a quilt. Study as much math as possible. Appreciate science and nature.

Better yet, ignore everything I’ve listed and go your own way, but always love your Mother no matter what.

It’s my hope one day when you’re in a tough situation, on your own, with someone leaning on you to do something you know is probably not the best choice for you to make, this post will remind you to imagine the butterfly and the air currents its flapping wings displace. And strength will come to you from the knowledge that those currents can only travel a long way into your future if you allow them to.

Love, Daddy

Three Days of the Dada

Thank some god for mall food courts. I cooked there with my wallet while my wife was away. Three nights of pizza, Brazilian BBQ and Sushi. Yeah, Baby, this is living large. But I don’t think I could do a fourth night. I’m “mall-fooded” out.

Palm trees in a California mall. Makes sense to me.

My wife is in the air. Her plane was delayed and she’s arriving late tonight. I can’t wait until she gets home. I’m going to stick out my hand like a tag-team wrestler, tag her, and head to the dog couch.

I’m tired. I’ve been getting up early to do treatments before my daughter wakes. Less than six hours of sleep each night.

If I were grading this week, I’d give my daughter an A-. She was great. If she could drive a car, I could have slept in. She put together her breakfast each morning, got dressed, and brushed her hair.

I should have worn a chauffeur’s outfit. I drove her to school and picked her up. And paid for her meals. Pretty simple, Simon.

I’d give myself a C+. Maybe B-. I realized today she hadn’t taken a shower since her mom left. Oops. My bad. That brought my grade down.

We watched American Pickers two of the nights, breaking our “no TV during the week” rule, though we have been watching American Idol this season. (We only watch shows with “American” in the title.) So, my grade goes down for the nights we were couch potatoes.

My daughter complained about a sore throat tonight and was tired. A cold coming on? I hope not. Stress from having to do all the work this week? Maybe.

My three days is about up. I’m pretty sure everyone’s good vibes kept the wet dynamite in my chest from exploding. It’s good to have friends you’ve never met. My humble thanks.

If, by chance, we ever do meet, the mall sushi is on me.

They know me at this place. "Norm, Irasshaimase."

Letter to my daughter, 03/22/11

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

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

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.

Letter To My Daughter – 02/04/11

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

The woman with the blue hair

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.

Ocean waves of despair

[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.

Happy Holidays

I wish everyone the best of holidays. Thank you for your visits and comments, and I hope for only the best of health and happiness for each of you and your families.

Here are a few fun photos from our Christmas.

A couple of years ago, I pranked my 6-year-old daughter with a nutcracker trick. Each day in December, I left a new nutcracker in the house with a note on it. The note explained that the nutcrackers had chosen our house for a very special gathering during the holidays and my daughter should prepare for the arrival of the Nutcracker King.

The joke went well at first with my daughter buying into the festivities. That is until I wrote in one of the notes that the nutcrackers would be leaving after the holidays. This brought tears and ended the fun for her, as she didn’t want to see Hans and Franz, the king’s attendants and the ones I did the cute voices for, leave the house to return the next year. We had to agree that some nutcrackers would stay on after the holidays. And to this day, we have a few select nutcrackers hanging around our house year round.

Now most of the nutcrackers I bought hang out on our nutcracker tree below.

This year, my wife and daughter built a gingerbread house. It turned out pretty nice. They were excited because the kit included fondant, which is used on Food Network Challenges.

I wasn't allowed to help because I ate the ingredients

Here’s a picture of our Christmas tree. I used Hipstamatic on my wife’s iPhone and shot it “old school” style. They did a nice job and I supervised, which really made all of the difference. I’m an excellent couch supervisor, though my daughter barked at me to help. I did my tours of duty as a kid setting up a fake tree for my mom and helping to decorate it. Now that I think of it, I may have supervised the hanging of the ornaments back then, too.

 

Old-fashioned photos by Hipstamatic

Best of health and holidays to all.

Just around the corner to the light of day

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?