Category Archives: Fear

Follow-up to yesterday’s post

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When I started this blog, my goal was to be as frank as possible. To lay it all out, take risks, and leave a record for my family and those who are kind enough to read it. Though it’s challenging to judge for myself how I did, I do think I came close – with an asterisk.

When year two came around, I knew I’d been holding back posts about thoughts that screw me on certain days, and have since I was 16. That’s because it’s hard to blog about cystic fibrosis and not take the whole of the community into mind and the toll the disease has taken on younger and better people than I.  It doesn’t feel right to talk of certain feelings with these special individuals and families in mind, especially when I’m the luckiest of the lucky.

But that doesn’t make certain thoughts go away or not part of my life. Yes, I’m lucky to have so much. I think of that every day, but my mind still plays tricks on me. CF has taken its toll on me over the years – the hospitalizations, the fear, the number of times I have coughed up blood. These events have damaged my brain wiring.

I think about escaping sometimes. Luckily for me, I have not chosen this path, as I don’t like pain, though I have a tolerance for it in the hospital. But I do live with the warped thinking. It would be disingenuous for me not to mention these thoughts occasionally. I’m hoping that by doing so I can reduce their power. That’s my hope. We’ll see. Feel free to skip these posts. I can tell you that the post that follows will usually be happier, or angrier in a fox-like way.

Sometimes, I fall off the Happy Positive-Thoughts Wagon and it takes me a day to get back on. But I do get back on.

Stay sane and patient, please.

When my mind goes south

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[Adult language and themes]

I’ve been trying to figure out what happens when I have bad days and feel like ending it. I wrote the camel story the other day because it described that it’s not the single straw but the load that breaks my back. My doctor once described CF as carrying a full bucket each day and it only takes one or two added drops to cause it to overflow. Overflowing is bad. That’s when I end up in the ER because I think I’m having a heart attack.

My thought process can be positive six days of the week and “bam,” day seven arrives and everything goes south in a hurry when a couple curve balls come my way. I realize I’m not thinking straight, but I feel trapped. And only one solution sounds reasonable as an escape. I know I’m screwed up, but I can’t do anything about it.

Here’s a sample from the other day.

Blood streaks. Fuck me. Not good. Where will this lead? Hospital? No. I don’t want to go in again. I can’t go in again. I can’t do it. I can’t take another trip there. I have a ton of work right now and important deadlines to meet. I don’t want to talk to HR again or call my bosses and explain.

I should end it.

I have to fly to New Jersey at the end of March. I haven’t flown in almost a year. When I walk through the airport, I’ll be carrying heavy bags and exerting. Exertion equals blood. I don’t want to cough up blood in the terminal. I don’t want to cough up blood on an airplane again. What hospital will I go to in New Jersey? I can’t spend two weeks there on IVs. What if I need another embolization?

I should put an end to all of this.

An email saying I have to go to Detroit for training later this year. De-fucking-troit. No. Another plane trip. I can’t fly. I don’t know that city or anyone in it. What if I cough up blood there and have to go to the hospital? Two weeks in Detroit. I don’t want to go on that trip. How can I get out of it? How many special favors do I require at work compared to every one else. Fuck CF.

I’m not sure it’s worth going on.

I have a growth near my ass. How funny is that. I won’t mention this on my blog. Too embarrassing. Great. What doctor do I see about this? I’ll start with the skin doctor. Seems like a fatty tissue. Gross. I think it’s been there awhile. It it was cancer, I’d be dead by now wouldn’t I? Have it checked out. I hope it’s not serious, but I’ll ask the nurse to leave the room when the doctor looks at it. I’ll have to put one leg up on the chair. Embarrassing.

I can’t do this anymore.

My wife is going on a business trip for three days. I told her to go, but I wish she wasn’t. I have to take care of our daughter. That’s a lot of work. How will I do it? It’s the week before my deadlines. What if I cough up blood while my wife is gone? How fast can she fly back? Who will my daughter stay with? Probably one of our friends. How many days could I make it coughing up blood and not going in? The hair brushing and homework and all the stuff my wife does. I don’t know if I can do it.

I should just end it now. That’s the best solution. I can’t do all of this. I just can’t do it anymore. I’m embarrassed. It’s just not worth it anymore. I don’t want to fail.

So, that’s how it goes. At the time it happens, it’s serious, a wave that comes over me as the load becomes too heavy to carry. And I can’t break away from the thought process. It is a feeling of being trapped, and I have to escape. Then, later that day, I feel okay. Sometimes it takes a Xanax or two. And it’s ironic because every other day I’m worried about losing my life. This, however, I do know: It’s hard to be this screwed up and know you are.

The Story of the Manure Salesman

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One day an unknown manure salesman hurried to load his camel. Shovelsful of manure were thrown up and into a large wood crate strapped to the camel until it became a heaping pile and the camel’s legs shook from the weight. At that point, the salesman threw handfuls of hay onto the load to keep it together, and to knock down the smell, as if that were possible.

A woman watched from the shadow of a doorway.

Sweating from his labor, the man stood back and looked at the camel – loaded and ready to go. Glancing at the ground, he picked up one more long stray piece of straw and tossed it on the load. In the time it takes a summer breeze to appear, the camel collapsed and died, crushed by the weight of the manure, which spilled into the street and onto the salesman.

He stood there stunned and speechless, covered, stinking, his hands not wanting to touch his soiled clothing. Tears filled his eyes from the loss or the smell.

“That was unfortunate,” the wise woman said, stepping carefully to avoid the mess as she approached.

“It was the fault of this one straw,” the man said, as he plucked a sample from his shirt and held it up for her to see. “It only took this cursed piece of hay to kill my animal. If not for this single straw, I would still have my livelihood and load.”

“It’s never the fault of a single straw.”

“It isn’t?”

“All of that manure weighed a ton. You were an idiot for loading too much on your camel – to the point it only took one straw to tip the scales toward disaster. But it was the total load, not the single straw, that killed your animal.”

The man gave this some thought, his facial expressions mirroring the realization of the truth and his responsibility. Then his face became calm, his body relaxed, and he pulled out a gun and shot himself in the heart while the wise woman watched.

She stood there for a minute, calm, quiet, studying the scene in front of her. The man, the camel, and the fertilizer, all linked together. Her hand raised up to her face, slowly wiping away a drop of blood, but no lines appeared on her face for anyone to read – if they had noticed her.

People circled around the man and camel, letting their curiosity overcome their sense of smell. A young girl stood next to the wise woman and tried to peek through the cracks of the wall the onlookers formed.

“What happened?” she asked the wise woman.

Looking down into the young green eyes, the woman said: “Always choose your words carefully when speaking to someone who doesn’t have their shit together.” Then she turned and walked the opposite direction of the growing mass.

A new dog or not?

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It feels like when I’m not eating or sleeping or sitting at the computer with a nebulizer, I’m buying something or thinking about buying something. Truth be told, I do buy stuff when I have a neb in my mouth, which makes sleep and meals the times I don’t? I can’t even guarantee that. Curse you, consumeristic country I live in. My value as a human can only be measured by how much I buy.

I digress.

As you may know, I spent over two months searching for a used car. Now the big decision is getting a new dog. I want one.

We have a lab and a rescued mutt. The grateful mutt is a chow mix and has some serious guard dog, bite your ass and never let it go, in him. I like that. Problem is, he’s around 14-years old and the gas and growl are going out of his tank. He can’t hear anymore, which downgrades his guard dog status to “if you step on me at night, I’ll notice.”

So, I want a dog with some physical clout – the looks and size to make anyone back away. And the ears to hear intruders coming a mile away. Oh, and the internal drive to remove their flesh should they try to harm my family while I’m lounging in a hospital room on the other side of the city getting my daily rub down. Or, if a brick falls from the sky and takes me out for good, I’d like to know my family is in good paws when I’m gone.

I’m thinking German Shepherd.

They're cute when they're 30 pounds

Although I’ve had dogs my entire life and believe myself to be a capable trainer, as is my wife, I’m not sure I have the energy to raise and train one of these powerhouse dogs capable of delivering serious hurt. I’ve had one bad dog bite in my life when I crossed through a neighbor’s yard and couldn’t outrun their dog. Yes, it was a German Shepherd and yes it did bite me in the ass, tearing away the entire backside of my white short-short tennis shorts. I have a healthy respect for these dogs after the embarrassment and hurt the one that chased me down delivered.

Labs are easy. Run them in the morning, give them a few carrots and feed them at night and bingo, bango bongo, they do what you say and love you. A German Shepherd is different. They are finely tuned with instincts to protect. You have to be careful not to send them the wrong signals lest you want to bury your neighbor in your backyard late one night because your new dog Fritzkrieg ripped open his throat when he held up a pair garden shears to wave hello. Oops, bad dog. You can kill a 200-pound man with your teeth, but you can’t handle a shovel? What good are you?

The discussion continues in my house. Any bets on how long it will take to make this decision?

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.

Facebook makes me want to kill myself

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I was a Facebook holdout until this month. I overcame the privacy issues that worry me and signed up. But I’m not giving up the bag on my head – that’s my security blanket until I can afford plastic surgery. I joined because my friends live on FB and I feel like an outsider not being able to read their FB updates. Now I want to kill myself.

Don’t call 911 yet. I won’t be performing any crazy suicidal acts, like throwing myself from the hospital roof the next time I’m in, though the thought has crossed my mind. FB may make me want to end my days, but that’s different from actually doing it or something crazy like jumping in front of the annoying ice cream truck that drives through my neighborhood on weekdays when kids are in school (what’s up with that anyway?). However, Facebook makes me feel depressed and more of a loser than I already am.

I started by looking up old school friends and girlfriends. Big mistake. The school pals are all more successful than I am – my best friend in high school went to Stanford and Harvard and is president of a company. Ex-girlfriends are living in exclusive parts of cities and married to successful men who are doctors and dentists, or who split atoms with a device they made in their garage from beer cans and Lego. The common theme: you did better without me. I’m not that surprised.

Look, I’m not a complete loser (arguable). I had a delayed start with my life when the period for feeling sorry for myself ended (the end of that period is arguable too based on this blog, but let me feel good about myself for a few minutes). I started college late while my friends were more motivated and driven with better reasons to believe they would live long enough to take advantage of a college eduction. I had what we’ll call a “rough patch” near the end of high school. It lasted awhile. (Is it over? Again, arguable) I would like to have a “do-over” on that time in my life, please.

So, I’ll be quitting Facebook soon. I’ve seen enough. Once I find a way to become more successful, I’ll rejoin. Until then, I can’t take the daily FB searches of successful ex’s. If only I could find one homeless old school mate, or ex-girlfriend unable to get over me, who now fishes for meals in a trash dumpster every day. Once I discover that person, I promise I’ll accept his or her friend request immediately. Life can be just like the old days again – on Facebook.

Use the Force next time an anxiety attack happens

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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.]

Through the Looking Plexiglass

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No father/daughter dance for me last night. I do have a virus, perhaps a flu, and combined with the bleeding I didn’t have the energy to go. And thus there was no punching other dads in the nose (sorry, Liz).

When I told my daughter I might have to go back to the hospital, she started crying and didn’t mind not going to the dance. We stayed home and played Kirby on the Wii.

Between her sobs, my daughter said it was hard to explain to her friends about having a dad who goes to the hospital. I had to give her the low down about some kids not having dads at all or having dads who were alcoholics or dads who had other medical challenges. There is no norm. Your life is your life and your challenges are your challenges. I’m sympathetic, but firm that she needs to step up and be brave like the female heroes she’s grown up reading about and watching. At 9, it’s not easy to do.

The blood is almost gone; streaks remain. So, I restarted the hypertonic saline this morning. I feel better and am no longer a Tylenol junkie.

Just a moment

For today’s party we went ice skating, which was strange because the ice rink was freezing cold, but it was almost 80 degrees outside. Like walking into an icebox in the desert – and out again – and in – and out.

I didn’t skate. I’m terrible at it and the exertion would have left a lot of bright red blotches of blood on the ice with kids screaming and skating away – think 50s horror movie “fleeing from the creature.”

Instead, I watched from the other side of the plexiglass, which feels like it explains what CF can be like sometimes – a barrier between me and real life. Sometimes it’s the actual glass of ICU or the hospital door or walls. Or the ice rink plexiglass as I watch my family and think that’s where I’d really like to be.

But there’s something in my way.

It’s all good. No complaints. The view through scratched plexiglass is better than the alternative. I’m sure of that.

Decision making made harder

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Cystic fibrosis has screwed up my ability to make decisions. I was wondering why I’ve taken two months to decide on a used car – haven’t decided yet – when I realized it’s CF’s fault. Obviously, I can blame the disease for many things, which I’ve done on this blog, with coughing up blood being the obvious winner. But “decision making” surprised me when I realized what was behind the agony I feel making important decisions in life. I didn’t always have this problem.

Over the years, I’ve had to agonize over every decision related to CF I’ve ever made. Which doctor to see. Which hospital to go to. Whether I should go on IVs or not. How long to stay on IVs. Whether to call the doctor or not. Take the oral antibiotics or not. And there’s the classic and grizzly bear of all decisions: Should I go to the ER or not?

To have this disease is to live a life of having to make what may be life-altering decisions. Decisions born from CF have more riding on them. They are not the same as picking a paint color or a restaurant for dinner. When you’re looking to gain any edge you can, a wrong decision feels deadly and heart-breaking.

And wrong decisions don’t go away. They hang around in your subconscious until it’s time to make another important decision and you remember the last time you had to make a decision and how you screwed it up in a big way. Bad decisions are like thrown boomerangs you forgot about until they whack you in the back of the head.

I find that this problem has bled over into my normal course-of-life decisions. I analyze everything to the point I can’t decide one way or another. This damn car. What should I buy? How much should I spend? Private party or dealership?

I fear a bad decision more than I fear the reaper, giving the Blue Öyster Cult song new meaning. And I probably need decision-making therapy. If only I could . . .

[No decisions were harmed, or made, in the writing of this post]

Carry the Load, Crybaby

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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.