Use the Force next time an anxiety attack happens

After two visits, my new heart doctor suggested I should go on Prozac. “Forget you” very much, doctor. At what point did you not notice my extensive list of medications? The one that comes on a scroll and unrolls onto the floor.

Sure, let’s add another med to the list. Genius idea. Especially a drug like Prozac, which can do all kinds of strange things to your head. May I have a prescription for a .44 Magnum handgun, too? Pretty please with mustard and my brains on it?

How did I get here?

My fantastic regular heart doctor is getting up there in years and is a 60-minute drive each way, plus the two-hour visit. So, every time my heart does its samba, giving up four hours of my day is a real drag just to be told I’m alive. So, I spun the doctor wheel of fortune and picked a new one close by. The five-minute drive rocks. But the new doctor ain’t my old one.

During the first visit he was complaining about his older patients and how slow they moved and how long the visits take. During the second visit, he mentioned how the children of dying patients don’t accept the fact their parents are dying and nothing can be done. He wasn’t making a big production of his frustration, but was whining. And, as I’m the king of whining, I can spot when someone else is stealing my stage time.

I was also thinking he has life pretty good. He’s a doctor, married with kids and doesn’t have cystic fibrosis. Right there he’s ahead of the game. No whining allowed, Doc. What the hell are you complaining about? Where’s the genie that gives you CF for a month to teach you what you should already know? You’re living the high life.

Back to the five-minute Prozac diagnosis.

Along with the suggestion for Prozac came a few suggestions that showed he hadn’t listened closely to why I was anxious, and ended with the simple advice “don’t worry so much.” Oh, doctor, it’s that easy? Why didn’t I think of that? I’m so lucky. You cured me with your brilliant wisdom. May I kiss your stethoscope to show my eternal gratitude? I promise to name my next boa constrictor after you. The one I’ll let wrap me up and squeeze me to death while I’m high on Prozac.

Prozac this. I’m insane, not depressed.

[“Cranky tonight, I am,” as Yoda would say – if he were not on Prozac, though we all know he is.]

Carry the Load, Crybaby

If I saw a psychiatrist, which I probably should, and he or she asked me what the future looks like, I would answer: It’s heavy. And I’d mean it in the sense that the future weighs a lot, that it has physical mass and I can carry it on my back – like a rock. And with every step I take, the rock gets bigger and heavier, growing from its molten center. At some point, my legs give out and the future crushes me flat, my arms and legs sticking out under its mass like Wile E. Coyote.

So it shouldn’t come as a surprise that when I think of the future, it looks difficult, hard, not appealing, filled with unpleasant events. Who enjoys carrying a giant tumor of a granite on their back? There will be more coughing up blood, more hospitalizations, more of everything CF.

And there will be dying. And there will be crying and emotions by others, though this is debatable and shouldn’t be taken for granted, as I’m not the most lovable of guys. And sadness. And the time my daughter and wife will need to find a way to pull themselves together, which I hope is short (move on, have fun. Enjoy at all the Craigslist furniture I bought you. Live like they do in Coke commercials.)

I confess: I have days when I wish the disease would take me, wipe away not feeling well and the buttery stress. But I’m happy that it hasn’t.

This I do know. The pressure to make sure each minute counts is great, oppressive, and increasing by the day. I can do the math in my head. I’m not going to be here in 50, 40, 30, 20, 10 or who knows how many years. Perhaps days. If I get in another argument with someone with blue hair who sees things that didn’t happen, my end of days may take place in prison.

I am running on fear. My tank is full of it, 91 octane, high-grade. Every day now is a bonus. I look at things more closely, linger on objects and people, the lines in my friends’ faces. We’ve all changed over the years. And I feel like I’ve been through so much, taken my share of beatings from CF and have the scars from each one. And I have more to come. I’ll take them like a man, or a mouse, and see the movie through to the end. I hope the CF Foundation or Sharktank or some drug company finds a way to stomp this disease’s demonic spirit of gut-ripping terror into the earth with the heel of a boot. For the sake of everyone one involved. I hope. And that makes the weight of the rock bearable for one more step. And another. And one more. And.

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.

The Cost of Battle

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?

California Dreaming

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.

Random Thoughts About Fear and Anger

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.


I Want To Be Jack Nicholson

Visit to the optometrist

The eye doctor told me I needed new reading and distance glasses. I thought I’d have to buy two separate pairs, but she told me I could get one pair with “progressive” lenses that covered all distances. Sounded great. Not sure how the magic works, but I love saving money.

Here I am wearing the glasses in question. Finally, no bag over my head, though I'd look better with one on.

To prevent a fashion faux pas, I brought my wife. And after trying on a dozen styles, she helped me choose a pair of tortoise-shell Nike glasses with a green inner frame, which was a hip, youthful touch. They seemed okay, but I didn’t have lenses in them so I couldn’t get a clear image of how I looked. But my wife told me they looked good.

After the frame was picked, the sales guy tried to sell me every 80 dollar add-on I didn’t need. I gave in for the glare protection because that feature might help at night. Even with insurance I got pounded for over 250 dollars.

A week passed and I picked up my glasses. Looking in the mirror with them on, two things happened. First, I realized that I looked like Robert De Niro at the end of Casino when he wore huge old-guy glasses. Second, I couldn’t see clearly because of the progressive lenses, which require you to look out of certain parts of the lens to see close up, medium or far distances. Oh, #!$* me.

The sales guy told me not to worry because it takes a week to get comfortable using them, but not to walk down stairs or drive with them yet. What the? Do I have to visit a mall parking lot like I did at age 15 and learn to drive again in these things? Are you kidding me? How did I go to eyeglass hell and not know it?

I was pretty upset at that point. I looked 80-years-old and couldn’t see well (that is probably how I’ll be at that age if, by some miracle, I outfox CF). Yet, the coup de grâce was still on the way. When I got home, I asked my wife if she thought the glasses looked good on me. She shrugged her shoulders and said something like “I thought they did.” Oh, being married some days. Argh, argh, argh. You thought they did? Past tense? What about now, at this moment?

The real blow to the head came when I tried to use them while doing computer work. Impossible, as they had no sweet spot that allowed me to focus clearly on the computer monitor. I could eek out a “less-blurry” image if I tilted my head sideways at just the right distance, and held one leg in the air, but I wouldn’t be able to maintain that pose for the 10 to 12 hours I spend looking at three monitors.

Give me a new pair and I'll let you live. Maybe.

I hate situations like this where I feel like I got hosed. I wish I were Jack Nicholson with his unlimited funds and volcano temper and I could stand in the middle of the optometrist’s office, with the joker who sold them to me sitting there, and the doctor who told me progressive lens were the way to go looking on, and throw the new eyeglasses to the ground, then jump on them until they became a mass of pulverized Nike plastic.

I’d calmly say: “Now how about selling me a pair of glasses I can see out of and use for work without tilting my head like a curious dog waiting for a treat – a pair that doesn’t make me look like I accidently walked out of the nursing home during a game of bingo and can’t find my walker or my way back?”

Is there anyone here who can do that? Is there anyone here who knows what the *$&# they’re doing?

Of course I’d take a 9-iron to the racks of crappy glasses on the walls, destroying them all. Then I’d drop my credit card on the counter and say, “I didn’t see anything I liked today. Call me when your new inventory arrives.”

Oh, how I wish I could do that. Instead, I have to go back and see how much it’s going to cost me to get new ones. I can’t wait to take it in the shorts – again.

I’m living proof some of us don’t get smarter as we grow older. We just get fuglier.

Stay well.

60-Second Sunday Rant

We need more people who are mad as hell

I’m looking at the front page of the L.A. Times right now. There’s an article about an automotive company that’s been in the news recently for problems with its vehicles. This article states that the company “sought to cut costs by limiting the scope of repairs.”

I’m not going to debate whether they did this or not. I’m upset because in five years this company will still be around and still prospering. I’m happy for all of the people who work there, but at what point are we as consumers going to say enough is enough? Do the right f’ing thing, companies. Don’t let us read about you in the L.A. Times again.

And the next time somebody says to me that we don’t need government regulation of companies – that companies will do the right thing on their own – I’m going to take a baseball bat to that person. Companies continually prove that they won’t do the right thing on their own, that they will always put profit ahead of customers’ best interests.

What’s sad about these poor decisions is that they are made by people working at these companies. And I wonder what these people would think if they were on the other side of one of these decisions? If their house was being repossessed because the person at the bank lied to them about the loan agreement? Or the product caused them to get cancer? Or if a known vehicle defect wasn’t disclosed to them before they loaded their entire family into the vehicle for a Sunday drive to the mountains?

At what point are we as consumers going to draw a line in the sand with the people who run these companies and take our business elsewhere? I guess at the point when we don’t let our desire for their product overrule our memory of their actions. Wishful thinking?

The Language of CF – Battle Stations

I read a fantastic blog essay by Tiffany Christensen, aka Sick Girl Speaks. She discusses the use of the “battle metaphor” with cystic fibrosis and whether it’s time to drop it. I recommend reading her point of view. You can find it by Googling “Sick Girl Speaks blog.”

I hesitate to place the link here because I use the language of battling and fighting all the time. I’ve even personified CF into a hulking form that I drag behind a yacht, or chop into pieces or simply beat up. So, with respect to the author possibly not wanting a link on my site, I give you the information you need to find her excellent post.

I do, however, want to discuss my viewpoint on the language of war and battle with CF. Not to debate Ms. Christensen, as there is no right or wrong here. For me, it’s a “Whatever gets you through the night” situation. “War” and “battle” against my enemy, CF, get me through the night and day better than any other weapon I have.

Over the course of my life, I have compared fighting CF to that of fighting a great war. It has served me quite well and I can say that without it, I would probably not be here now. I would not have had the strength to make it through some close calls or, more importantly, the day-to-day routine of treatments, especially that f’ing flutter, which is a daily battle of its own, my face red, curse words attacking and insulting CF and telling it to leave my lungs.

The battle analogy, or metaphor, depending on your definition, allows me to generate a higher level of anger that manifests itself in added power to blow into that flutter for 30 minutes, or cough harder to get the junk out three times a day, every day. Anger is an important element of battle, too. And, there is science to support it. Weight lifters and some athletes use anger for added strength when lifting; and testing shows anger does generate additional power. Many sports teams, especially football, use the language of war for motivation to win the championship.

Anger and battle go hand in hand for me and if I can direct these at CF and the bacteria in my lungs, all the better. I believe it has made a difference in my ability to fend off this disease. I believe a positive attitude helps, too. And yet, I don’t mind anyone who doesn’t believe this, as it’s all about personal choices. I’m not the guy who is going to beg the jumper to back away from the ledge. That’s their decision to jump, not mine.

Yes, war implies one side loses, but it is CF that is losing right now in my world, not me. I am winning. I am maintaining lung function. But I am lucky, too. My defective genes gave me an advantage many others with this disease have not had. And, many may have “lost their battle to CF,” but I don’t look at them as having lost anything. I look at them as great fighters and heroes who fought an impossible war, but battled anyway. And yes, despite having a positive attitude and fighting, sometimes there is nothing one can do to prevent the inevitable with CF. The question is whether not having a positive attitude and a fighting spirit shortens a lifespan. I can tell you that it would have in my case.

When you’re in a war or battle, you are alert. There is danger. And if you let your guard down, bad things happen. It’s the same with CF. What would happen if I skipped a treatment or two? In this blog, I’ve transferred my anger to the page and felt a renewed energy to fight CF – a renewed confidence that there is hope that this fight will end one day in the death of CF. Some days, it just helps to lob “prose grenades,” whether humorous or sarcastic, at a clearly defined enemy that is causing me so much trouble.

I truly thank Ms. Christensen for her thought-provoking post. She has elevated the level of discourse about this disease. Truly, I believe she is stronger than I, knowing that I probably could not withstand two lung transplants as she has. That is mental and physical toughness of a higher level. I need the talk of the battle to get me through the night. Obviously, she has something else that drives her. And I applaud her for sharing that with us.


Ex-Celebrities, Anger, Perfect Genes, and Feeling Neutered by CF

Photo courtesy of NASA

I was at my nephew’s little league game yesterday. Perfect day. But I was feeling a little off.

An ex-celebrity coached the opposing team. He was being a d**k and overly competitive and it bothered me.

I don’t think of myself as an angry person, but down deep there’s a ball of rage that bubbles to the surface for special occasions. And it’s not easy to control.

Here was this ex-celeb, the picture of perfect genes, tall, model good looks, who once kissed some of the top leading ladies in Hollywood, with his ex-celebrity wife, herself of perfect genes, making a fool of himself. Perhaps, it was jealously pure and simple that threatened to unleash my little sun of rage.

I wanted to confront this guy and get in a fight, or at least join the fray.

I wanted some magic CF power, almost Vulcan-like, to grab both sides of his face, hard, and show him how lucky he was to be who he is and have what he has. And to show him how infinitesimal in the scope of life a missed little league call is. A punch to the face would have felt good, too, followed by one to his stomach.

Had that happened, hemoptysis would have been everywhere, scaring the children and their parents. Imagine the mass chaos on the field with parents pouring from the stands to get their children out of harm’s way – the crazy celeb-hater spewing blood on the manicured sand and grass.

Cut to the last image of me on my knees on the pitcher’s mound alone with the invisible disease exposed and a Rorschach of blood in front of me.

Perhaps that is why I hate CF so much – the feeling of being a neutered male, different from the rest of the herd, a mutant. Or that CF has kept me from reaching my full potential as a man. Yes, I feel lucky to be here, to have lived this long. But some days it’s just not enough. I want to be normal, to stare at the face of another man, nose to nose, and have the other guy back down.

I want to be the one with perfectly formed bones, square jaw and cool hair.

Without the CF, would my anger still be there? Or, is CF the only thing that has kept me out of prison all of these years? I’m not sure. But I’d like to find out.