Giving it all to my job right now

I’m leading part of a large training event at work right now and its sucking up all of my creative energy to complete it. And I’m working long days and putting in hours on weekends to finish all of the deliverables on time. Luckily, I’m working with a good team.

I traveled by car last week and was so tired on day 2 of the training session, I looked right at someone I’ve known for 12 years and couldn’t remember his name. Just blanked. Name gone. Later, I had to Google, “fatigue and memory loss.” Yep, it can happen.

My memory improved with a good night of sleep. But why I was so tired was something most of my co-workers didn’t understand. What they didn’t know was when I go back to the hotel, I have 90 minutes of treatments to complete before sleeping. Then I get to wake up early in the morning to knock out another 90 minutes. So, working long hours and having CF is a bad mix on the road and equals limited sleep.

And I have more travel coming soon – on a plane.

I don’t remember the last time I was on a plane. It must have been at least three or four years ago. I’m going to give it a try again for this project that has consumed much of my time these days. I’m not looking forward to flying, and a small nugget of fear in my head grows larger as the day approaches. I will self-medicate for the flight.

One worry I have is that I now use O2 at night. I need to find a place that rents O2 generators in the other city. My center couldn’t help. So, I’m going to call the CF center where I’m going to ask if they can help.

That’s it for now. I miss blogging. But there are bills to pay and a 12-year old to send to college. No rest for the weary.

My work-cation comes to an end and my top five vacation moments

The good news: Monday’s return to work won’t be quite the shock it normally is after a vacation because I worked most of the time I was on vacation. (This is my “glass is half full” attitude, which is kind of working for me right now.)

The bad news: I have to go back to work on Monday and I won’t be in Ventura CA doing it. And the next few weeks of work will be brutal.

One of the highlights of the trip was watching my daughter learn to boogie board. When my advice failed, she got angry. When it worked, she caught a wave and yelled, "Did you see that one, Daddy?" Yes, yes, I did. And it was great.

One of the highlights of the trip was watching my daughter learn to boogie board. When my advice failed, she got angry. When it worked, she caught a wave and yelled, “Did you see that one, Daddy?” Yes, yes, I did. And it was great.

I heart Ventura CA. And if it weren’t for our friends and my daughter’s school, I’d move the family. My wife, however, says my love affair with Ventura and the ocean is vacation-related and living there would be something different. And though my wife is right more times than I care to admit in writing, she’s wrong on this one (I think). I could live there in a heartbeat, even if we were miles from the ocean, which might be warmer and a better choice.

The house we stayed in was around 900 sq. ft. So, coming home to over 1,800 sq. ft makes our house feel almost McMansion-like. In fact, it makes me feel better that we didn’t do two things:

  1. Add on to our house during the real estate boom, which we thought about and would be still be paying for right now if we had.
  2. We didn’t move into a larger house, as it would mean more to clean, to heat, to cool.

That’s not to say I wouldn’t like more space around the outside of the house and a workshop for my tools, but the physical space we need to live in might not be as much as I thought. I just need to be more clever with the space we have.

Since returning mid-day yesterday, Saturday, I haven’t done much at all. I returned to my Treadmill Desk (over 8 miles walked) and escaped into a novel (The Cuckoo’s Calling) while doing it. I have a dozen projects around the house to complete, but haven’t worked up the energy to tackle one of them, owing my laziness to having a lot on my mind, like how to get rich and buy a vacation house in Ventura. Simple thoughts like that.

My top five Ventura moments:

  1. Standing deep in the water and watching my daughter boogie board and catch a huge wave. Her eyes got really big and I could tell she wasn’t too sure about it (a fear/excitement cocktail). But she held on and I was there to see it. I am lucky.
  2. My wife’s crazy lip-sync dance to a reggae song, and the fact I videotaped it for embarrassing her at a party one day. Priceless. Gold.
  3. Dinner with our good friends, outdoors, at the Sushi House on a perfect night. Great food, laughs, and excellent sushi a block from the beach. What more is there to want in life?
  4. Go-kart racing with my 12-year-old nephew and literally driving him into the rail/wall when he tried to pass me. Gotta teach the young ones to respect their elders now, don’t we?
  5. Dinner at Rice Thai with my wife, daughter and 10-year-old niece, who stayed with us for three days and came up with the idea she wanted to own the sun and sell sunlight to everyone. It’s good to think big before the reality of life crushes your dreams (hey, what happened to my “glass is half-full” spirit? That didn’t last long).

That’s it for now. Back to the chain gain and breaking rocks.

My new Australian friend gives me the night off: Guest post by Karyn Pyle

[I’ve often said the best thing about my blog is what my friends and readers say in the comments section. Tonight I’m putting my money where my mouth is and sharing a comment a new friend from Australia wrote in response to my post, \”I should be deported\”

For years now, I’ve struggled with my lack of success in the USA. I live in Los Angeles surrounded by million-dollar-plus homes and 100K automobiles, all daily reminders of a wasted youth and the catch up I’ve had to play. And it has rained on my happiness, as it has for many Americans since the mid-1950s: consumerism has gone up, happiness has gone down (Story of Stuff). This is no surprise as we’re bombarded daily by advertising for the newest latest product with the message: you suck if you don’t own this.

My sincere thanks to Karyn for the comment below, which made me feel better and hopeful there is a place I might feel satisfied not keeping up with my neighbors, and where I don’t have to be a 1-percenter to be happy. It’s a magical place called Australia. I’ll let her tell you about it. Oh, btw, I added the pictures and captions myself.]

In response to “I should be deported.”

As well written and provocative as this was – for me at least – you were preaching to the converted!

I wonder how many people end up taking trips to Austria because they can't spell Australia?

I spent my formative years in Australia. In my mid twenties, I moved to the UK for a year, and then to the USA for 10 years where I got married and had our son. I’m now back in Australia, (as you know). But I feel if nothing else, the travel has given me enough credibility to comment with some element of knowledge on this subject.

America, for all the positive things it has going for it (and as an outsider, let me say that I truly believe it does), what is so sad to me, is that the ‘middle class’ (or upper middle class) will always – as you so eloquently described – feel like failures. For me, what I noticed was a prevalent sense that everyone is trying to ‘keep up with the Joneses’ (whoever they are).

People bought new cars every few years (even though it came with a large and often stressful car payment), because driving an old car told a story – a story that no one wants to be associated with –  “I must be poor and thus unsuccessful!”

They bought bigger homes, or renovated. They vacationed in luxury resorts, wore designer clothes (as did their kids), paid for nails and pedicures every two weeks and hair coloring every month. They purchased the latest electronics, the furniture and decor in the homes are truly a sight to behold – it all coordinated perfectly – and looked like an (Australian) ‘Home Beautiful’ magazine cover! There was a LOT of pressure to be perceived as someone successful.

I understand that this probably isn’t the case everywhere, but in the circles we traveled it was universally the case. Yet, when you came to know someone on an intimate level – more often than not – they were unhappy. They were in debt, feeling overwhelmed, like failures, tired of working their fingers to the bone just to stay afloat, and the “stuff” wasn’t providing them the life they hoped it would, and it wasn’t making them happy either.

I'm not sure if you can eat these or not. Or, if they are poisonous and deadly and can chase you down and eat you? I think I read this in an Australian tourism booklet. I may be wrong. Creative Commons: Mollycat

Here in Aus, and in the UK where I was living (though my time there was brief), people often drive 10 and 15-year-old cars – people with well-paying jobs – and, (gasp!) money in the bank! If the car works, is in good condition, and isn’t causing problems, they don’t replace it. “Why would you?” they ask. “Why would you take on car payment when you own a car outright, that works perfectly and is comfortable for all who need it?”

Why, indeed.

Homes are not as large, decor is not as elaborate and doesn’t coordinate as well… ‘kids clothes do the same job if they are purchased at Target’ I hear the mothers reason. My son attends the best private school in our area – few cars are new, even fewer would be considered “luxury”. Most kids don’t have the latest iPod and iPad. (I hear parents tell them; “Get a job and save up for one yourself!”)

The one difference I have noticed where we Aussies DO spend more, is on vacations. Australia offers all full-time workers 4 weeks paid vacation a year – standard. If you work for a government or large corporation you get an EXTRA 17.5% “loading” on top of your regular salary amount when you take holidays…I have no idea why, but its an awesome rule! (My husband has deemed it the  “vacation-spending-money-fund.” He is in awe of this lottery-like law!)

We know how to relax and do it well, and apparently, often. Most middle class families take overseas vacations every few years. Almost all go away on vacation for at least a few weeks domestically, and do so without financial strain. Granted things cost more here, but salaries are markedly higher, which helps to compensate. We do cut corners to help ourselves along though – on the smaller stuff.

Its rare people pay for cable TV (we have about 12 free channels that include most popular US shows including those seen on cable like Weeds or Californication – we’re liberal like that!). Men mow their own yards as a general rule, and clean their own pools. Women iron the clothes and don’t often use the dry cleaner, and they clean their own homes. (Oh how I miss my American house cleaner!!) But, given the homes are smaller,  the cleaning is not a large or laborious job.

There isn’t a Starbucks on every corner, so we’re not spending on daily coffee – we make it at home. (Most Australian houses have commercial-style coffee machines in the kitchen, something that has changed since I lived here a decade ago, they love their coffee!) When we do go out, cafes are for coffee AND cake (if you’re going out, dammit we may as well celebrate!) Beaches, rainforests, hiking, lakes are all free. There are a lot of community-type places that are family-friendly and free, that I didn’t really see in the US (though that may have been representative of where I lived, not the country as a whole).

Every Australian has one of these in their pool. It's why the country down under has a great Olympic swimming team. Creative Commons: Stormy Dog

Please don’t misunderstand me. I am a lover of the USA, and I myself miss the positive influences the USA ingrained in me, and am grateful for the many opportunities the country provided me. However, being ‘home’ now for just on a year,  I realize that without our car payment (we bought our cars for cash when we got here), and all those extras, we are a lot happier. We don’t check the bank account as often, asking ourselves “where did all the money go?” And we don’t bicker over how someone could possibly spend almost $200 a month on Starbucks. (Yes, I never said that I didn’t jump right on the bandwagon once I was there, did I? Its hard not too – it’s the culture of the place – and after 10 years you integrate with the culture, whether you realize it or not!)

Here, we don’t care about the Joneses (I still haven’t figured out who they are) – and our friends here don’t either. People are judged much more on WHO they are, rather than WHAT they are. If you’re a rich asshole, no one will kiss your butt, I promise! If you are a genuinely nice, kind and respectful person, we don’t care what you drive or where you live (as long as you have beer).

For me, this move was a good choice. I am happy to raise my son with these stands and ethics, I hope that someday the corruption of big business and politics – and the hopelessness of middle America that seems so rife – ends, and that a more attainable lifestyle becomes the norm. Wouldn’t it be wonderful if people could universally see how “stuff” and “impressions” are just that – nothing that will matter when you are 90 years old, and have only your memories and relationships for company.

As for the politicians and the banks…oh don’t get me started on those bailouts! Doesn’t it seem so ass-backwards when a hard-working family can lose their home over a layoff (that they have no control over), but a law-breaking CEO can get a bonus and his bank bailed out, for their failures and poor decision-making?

Now this is the animal most Australians fear the most. Has six-inch fangs and at night it hunts cats and dogs and eats them whole. Creative Commons: Mollycat

As for all the killer animals here, we’ve been here a year, live on the coast in the country, and haven’t seen anything that will kill you yet! As grandpa used to say all those years ago “he’s more scared of you than you are of him” – they would prefer to be away from you, just as you would prefer to be away from them. Come on over for a visit, Australia will welcome you, and the water is fine!


Karyn A Pyle

Social Media Management & Copy Writing Services

Work and more work

Work was a bear this week, eating me alive. I left late Sunday night and drove east to the lovely but highly polluted city of Ontario. Then I spent most of the week there getting up at 6 a.m to do treatments and work from the hotel. Then to the office by 8, on my feet all day and back to the hotel around 10 each night. A couple hours of treatments and to sleep at midnight.

The resting place for our black mutt

Before I left for the trip to the capital of polluting big rigs, we buried our black mutt on Father’s day. We sprinkled his ashes in the ground a few feet from our chocolate lab and planted a new plant on top of him. My daughter cried a lot. She loves dogs at age 9 more than I think I did as a kid, though we were not allowed to have them in the house, which made our relationship with them different. She’s grown up with a yellow lab for a pillow.

Knock on wood that I haven’t been spending much of my time at doctors lately. I have spent a lot of time at the vet with the dogs. It seems like I’m there with one of them each week. Yesterday, it was Luna. I welcomed the break from work, as I was moving slowly and not very productive early in the day. Luna has some “upset stomach/vomit on the rug” thing. Test results back today. Then, another trip this week or next to have Cali spayed.

The universe is happy when I’m speaking to someone with “Dr.” in their title, I guess. The only good part about the vet is not having to fill out 5 pages of medical paperwork and questions. The vet doesn’t care about who the parents of my dog are and what ailments her grandparents had. With real medical paperwork, I take the express train and line through those annoying questions.

Though I felt pretty good this week, it had its share of feel-bad moments. First was eating too much pizza for lunch on Tuesday and watching my digestion go south for the week, which is always a joy at group meetings and exceptional fun when standing in front of 50 people presenting.

Then my feet and lower legs swelled up thanks to the heat and Wednesday’s triple BBQ-meat lunch. I ate what could best be described as a small mountain of salty tri-tip, pork and chicken on Wednesday. I don’t know if it triggered a gout flare up, but I have to email the doctor and figure out what’s going on. By the end of each day, I was pretty creaky.

If I have any wish for my daughter today, it’s that she doesn’t work for a large corporation when she’s older – unless it makes her happy beyond belief to do so. And maybe I’m projecting my own wishes onto her, but there is something wrong with working for one. I can’t put my finger on it today with my tired brain, but I will in a future post. I just hope she does something really fun and is her own boss. Knowing her, she’ll be kind of bossy no matter what. Her poor future husband has no idea. 🙂

Stay rested.

Work: The enemy of blogging

I traveled locally on business this week. Most days were over 12 hours of work, with one topping 15. Today, I’m feeling groggy and if I didn’t know a Red Bull would send me to the ER thinking I’m having a heart attack, I’d try one. A little “pick me up” to make it through the day.

Puppy life in black and white

And my sincere thanks to Cali California for waking me up at 5:30 this morning. Adios, REM sleep.

Usually, I can knock out a blog post on the road, but not this week. I’d get back to the hotel, do my treatments and watch TV, something I don’t do during the week unless it’s sports. But I find it enjoyable when I’m tired and sitting in a hotel room. Maybe it’s the florescent lighting? It’s the best time to watch all the wacky crap I’d never watch at home. When did MTV become a soft-core porn channel?

I missed the puppy while I was gone, and my wife and daughter. A friend of my mine used to tell me that if he traveled and missed his girlfriend at the time, he knew he liked her. If not, it was time to break up. After 25 years with my wife, I still miss her when I travel. That has to be a good sign.

Later today, I’ll be at a puppy training class with my daughter. I’m the legal guardian so she can attend the class. This should be interesting. The trainer we used told us they’re “treat crazy.” I’m not. I’ve never really had to use treats to get my dogs to do things, except complicated tricks. But this is a new world with our shy puppy. I’m sure she’ll be the size of a hog by the end of the classes. Maybe we can teach her to “oink.” Will I get kicked out for suggesting this? Or for being “treat adverse”? Probably.

What time is too early to start eating M&Ms? Can I suck the caffeine-like chemical from them to wake up? It’s almost time for my treat – my McGriddle and hot chocolate. That will help my mood. Thank you, McDonald’s for inventing the perfect breakfast treat for humans. I’d sit and beg for one, but luckily I have the cash.

Stay healthy and awake.

Las Vegas goes up in smoke

Many years ago, during one of my last business trips to Germany, I went to a grocery store to buy chocolate. As I was waiting to pay, a wall of cigarettes next to the conveyor belt stared back at me. They were impossible to miss, and not locked away like they are in the states.

Anyone buying groceries could see and touch them, even children.

The display bothered me and gave me a sense of hopelessness about cigarette smoking disappearing from our global economy. I grew up with two parents smoking. So, feeling defeated, I decided, “if you can’t beat them, join them.”

And I did. But not by turning into a smoker.

When I returned to the states, I bought Altria/Philip Morris stock, which we own to this day. If people were going to ruin their lungs smoking, I wanted to benefit from it. So, now my wife and I look at smokers and hope they’re sucking on a PM brand cigarette and helping our stock go up.

And, after spending five days in Las Vegas this week, I can report back that smoking is still in fashion and our stock’s future looks bright. Every casino we walked through to get to a show smelled like an ashtray, except the Bellagio, which has a great filtration system. I even made the choice not to gamble, despite my love of it, because I didn’t want to smell or inhale cigarette smoke.

We found ways to avoid the secondhand smoke and walked miles each day to discover cool places. And for the first time in several trips, I didn’t have c-diff or cough up blood – a huge win.

I also checked off two items from my bucket list. I took my wife and daughter to see Love at the Mirage. And, we finally saw “O” at the Bellagio. I heart Cirque du Soleil.

We went to see David Copperfield at the MGM. He could use some help from Cirque du Soleil. A video stream of old quotes about his magnificent past played before the show and reminded us that he was once the greatest magician in the world. Past tense. Now he’s average and tells a lot of crude jokes. We still enjoyed some of the great tricks he had left in his bag.

Oh, and I ate goat, my own Food Network-like moment. It didn’t taste like chicken, but was good despite its greasy, fatty qualities.

Here are some pictures from the week.

We had a rocking good time here.

Pete Rose was signing autographs in the Mirage Mall. No wait to meet him. The guy in the Rose jersey works at the store. My wife pointed out the "oddness" of someone who bet on baseball signing autographs outside a casino. Please don't let this guy into the Hall of Fame.

The Mirage houses a cool dolphin and big cat exhibition. But after seeing "The Cove," I had a hard time getting excited about dolphins in captivity. I kept wondering how they got there and if swimming in circles in a small pool was the best place for them.

The Bellagio had an amazing spring display in their atrium. Lots of flowers, a ferris wheel and butterfly house.

Harrah's Casino took a different route with its spring display.

Not everything that happens in Vegas stays in Vegas. When you're a lion looking for some afternoon delight, and 200 tourists with cameras are watching, it makes its way to the Internet.

I dig Hipstamatic. It gives a display of heads some bonus creepiness.

Who are these scary "O" fans?

We went to Adventuredome at Circus Circus and had a great time playing games and winning the world's cheapest-quality stuffed animals. This picture is from the parking garage elevator. It's not everyday you see handwritten numbers for the floors. Nothing says "this is a quality establishment" quite like magic markers.

The best part of the trip? McDonald's in the hotel. Jackpot.

My head cold goes south; I stay West

Everything was going fine this morning preparing to leave for my trip until I coughed a dry cough – red alert. It was a clear sign my cold had crossed the imaginary barrier of my throat and entered my chest – chest cold, red alert.

The monkey tossed a wrench. But was I reading the sign correctly?

I don't know why, but this photo seems appropriate. (Creative Commons: soldiersmediacenter)

I went through my routine. And when the driver knocked, I hugged my wife and left. And the first thing I did when I got in the car was take a Xanax. But it was too late. Each suppressed dry cough was like someone shaking me to wake up.

The closer we got to the airport, the greater the thought of “turn around” became. Turn around. Turn around. Go home. Do not go, turn around. TURN AROUND. BAD THINGS WILL HAPPEN.

At least a dozen scenarios played through my head of what might happen – what I would do when I got to New Jersey and this chest cold turned worse. What would it be like to be in the cold weather, a hotel room, sick? What would it be like to have a dry hacking cough on the plane and have people stare? What would it be like to go through security and have to open my bag of CF paraphernalia and explain it?

How would I get home? How would I get home?

Too overwhelming, go home.

As we exited the freeway, I felt warm.  And as we got closer, hotter. When we were about a mile away, I knew I couldn’t get on the plane. My face was flush, my heart beating in an uneven drum beat – hard beats, ready to release blood into my lungs.

When the driver pulled up to Terminal 1, I told him I was having a panic attack and couldn’t get on the plane. I asked him if he could drive me home or send another car to pick me up. He was very nice and said he could drive me home. But he suggested we wait five minutes, take a deep breath and see if I changed my mind. I called my wife and told her I couldn’t get on the plane. I had made my decision. No sense waiting five minutes.

The driver took me home. I handed him an extra 40 bucks. And in the dark of morning, I wheeled my suitcase into the house.

Now had I written this post this morning, the title would have been: This blog post written by the world’s biggest idiot. I felt that way for making the decision not to get on the plane. Wimp, wuss, were a few of the words I used. However, the cold worsened throughout the day. I’ve had a dry cough and been out of it, tired, groggy from the stress and the virus.

But, for once, I made a correct decision. An uncomfortable decision, but the right decision. It didn’t feel like it at the time, but it does now. I’m fighting a chest cold, which may put me in the hospital. I have no doubt had I gone, I would have been in deep s**t with this thing.

So, the part of me that felt like a complete wuss at the airport for not getting on the plane, now feels good because I made the difficult decision not to go and to ensure I was in the best position to fight the cold and, with luck, stay out of the hospital. That is yet to be determined. It’s 50/50 at best right now.

Here’s my last thought tonight: I hate cystic fibrosis. It can kiss my ass.

Packing Day

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

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.

Playing nice in the sandbox – being Swiss at work

[adult language]

I miss the days when I used to travel light. When I threw clothes in a bag and drove away without six pounds of meds and compressors and nebulizers and CF-related paraphernalia. Luckily, this week’s business travel didn’t include an airplane flight where TSA agents’ main objective is to embarrass me by having me remove everything from my bags. I hate airplanes and air travel for so many reasons now. But again, I only had to drive this week. For that I’m thankful.

I had three days of meetings, many of which I had to lead. If I had a favorite moment it was the opening when we went around the room and introduced ourselves, stating our position, years of service and other standard information, ending with a question: “What’s your favorite vacation spot?” Lot’s of possible answers to that one. Islands and Disney were the most popular. I would have liked to answer “the hospital” because that’s where I spend most of my time outside of work. However, this would have raised eyebrows and revealed my secret identity, which is now known in HR but not to others.

I dream of winning the lottery because I’d live in a large house with a big yard, donate to CF research, and not worry about money and health insurance.  I also dream of winning so I could stay at my job for a few weeks and say what I want to say. That’s right, I wouldn’t quit right away after winning. I would stay. But I wouldn’t want to hurt anyone with my words. That wouldn’t be sporting. Rather, I would like to quit playing the dance of being Switzerland, of using the most neutral of phrases and replies. I’d like to be blunt and not worry about making people feel like their idea was the best I’d ever heard. I’d like to hit a buzzer and say “average idea, you can do better.” Or tell my bosses that micro-managing sucks and we have a proofreader for catching typos. Management’s job is to avoid icebergs in our path, not visit the engine room to fix a spark plug.

I’d tell the guy who sits back in our meetings and looks for things to criticize to shut the fuck up. I’d tell him I don’t want to hear anything negative and to keep his pie hole shut for the duration of the meeting. End of story. If he wants to say something positive, great, speak up. However, if he wants to point out that under the harshest of deadlines and editing materials while I was in the hospital, that I could have used a different event on our timeline, well, he can kiss my ass. Because in the scope of life, it makes no difference. And perhaps that’s what irks me more than ever as my life nears its conclusion – so much of the time we spend at work is spent on trivial discussions. It’s not that the work doesn’t matter, it does. People matter. It’s how our time is spent that both fascinates and irritates me. In our quest to play nice in the sandbox, it takes longer to get to where we need to go.

And that goes to my lottery fantasy – saying what we want to say, not being mean to be mean, but stating it as we see it. Not being afraid to debate, or of healthy conflict without the constant fear of losing one’s job.

I’d also like to tell those who think that they deserve special recognition every time they do their job or work an extra 15 minutes at the end of the day that they are really doing just what they get paid to do. No one hired them to be average. Imagine interviewing for a job and stating that you’re going to do average work and want recognition every time you do great work. You’re paid to do a great job, asshole. Do it without the need for constant recognition that you’re doing your job well. The coolest cats, men and women, are the ones who do a great job and keep quiet about it. They don’ t need daily accolades. They have their own internal scoring system.

I think of my daughter and hope that she will work hard in life and find a career that makes her happy. I hope it’s one where she feels free to say what she wants to say. And I hope that opportunity exists by the time she grows up. I’m not sure it will.