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What Is it Like to Be Different Because of Cystic Fibrosis?

Traveling OverseasOne of my little CF buddies is down about his being different because of CF. I’ve been working a lot on empathy recently, and I can super-relate to how he feels. Growing up with CF wasn’t easy for me. In fact, growing up wasn’t easy at all, and many who know me really well would argue in fun that I still haven’t grown up even though I am 32 now. Why, just tonight I make a crack about beans and musical fruit in mixed company. /sigh

This is going to be a rough ride, but I want to let every single CF kid who reads this or has this read to them to know that I understand some, most, or all of what they are going through – because I’ve been there, done that, and now I wear the t-shirt. Am I over all of it? No, not even close. I could probably still spend another 2 years in weekly counseling to get over my past. It still haunts me and it makes Beautiful very sad to hear me speak of it. Reading all at once will probably make her cry.

My intent is not to make anyone sad, place blame, or bring up old stuff as a way of making people feel bad about any of it. People did their best with what they had, most of all my parents who had to deal with financial issues having two kids with CF and losing one and having quite the impossible one who survived. While I’d change a million things about my life, I wouldn’t change my family.

The key is to not wallow in it all of the time, forever. I don’t. I shouldn’t even think of it as often as I do, but social triggers are everywhere.

School

School was especially difficult for me for a variety of reasons:

  • In a class of 72, I was one of the 2 or 3 smallest boys (and girls) every year.
  • I had glasses. Not just any glasses, but the plastic ones because I was always breaking them by playing rough or getting roughed up.
  • I was really smart, which got me disliked, so I switched to acting up, which just made my life miserable with my teachers and parents.
  • I was in the hospital a handful of times during school, but usually 2 weeks every summer and I started with the sinus surgeries around the 4th grade every couple of years. I remember one year, my entire class drew an outline around someone on a roll of paper and everyone signed it with a “get well” note. We kept it for years, and I wouldn’t be surprised if Mom still has it.
  • Because of antibiotics and a couple of colds, I had managed to have a couple of unfortunate accidents of a #2 variety at school when I had the misfortune of not recognizing that the pressure was not gas. Those memories stuck in everyone’s mind forever and was something that wouldn’t have happened if I wasn’t different and I was smart enough to know that.
  • Because of school policy from kindergarten to my senior year, I had to go to the school nurse every day for my enzymes. For 3 long years, that meant walking 200 yards to the newer elementary building from the old building that was 4th-12th grade in the rain and snow. I was singled out every day without exception. Constantly reminded that, “no, you are not normal, and you never will be.”

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Using Cystic Fibrosis As a Crutch

CrutchThe opportunity to allow people to think I’m using cystic fibrosis as a crutch is the main reason I don’t let people into that area of my life too early. I discussed the topic of when to tell others a while back, and while I have decreased my incubation period significantly since starting this site, the principle remains in effect for a large part.

The words found below do not apply to CFers who are home-bound, hospital-bound, or confined to their bed until a transplant donor can be found. They have our utmost respect and compassion. I will be very thorough in my explanations to avoid any ill feelings, as this is a reflective, introspective topic for discussion.

I have lived two separate lives, each of which has been made up of various compartments. I believe that compartments are a highly effective method of coping and thriving with a chronic disease that can not only cause suffering conditions, but death at a progressive rate from normal life-expectancy averages. Before I move on, I want to be clear about this point as well: suffering conditions does not mean that each CFer is forced to live a life of suffering, as we discussed recently. If you’re too busy to read it now, the summary sentence is: “we don’t suffer from CF, we thrive despite it.”

One life: before I “had” CF

It wasn’t much more than a year ago that I didn’t “have” CF. That life consisted of two CF-related compartments:
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What Drives You?

DriveI’ve been having an heart-felt back and forth with a concerned mom via my contact form whose 16-year old son has become non-compliant recently. He’s described as wonderful and smart, but just doesn’t care to do many, if any, of his treatments any more and stopped a sport he had played previously. I got to wondering what drives him, because I’ve been there, done that, and bought the t-shirt.

I had to burn that t-shirt the day I knew I wanted to marry Beautiful, but it still didn’t fully change what I was doing to make sure that I gave us the most time together. I’ll place a lot of the blame on my eFlow not working properly to allow me to actually have the time in the day to do my treatments (and I probably wasn’t getting the meds as I should when I did them most nights). Since that’s a cop-out, I’ll admit that I should have been more aggressive in doing whatever it took to get to a solution to be able to do my nebs properly. I take full responsibility for that end of the deal. It was stupid and will never happen again. Now, let’s get back to the underlying issue at hand: drive.

“If you do not change direction, you may end up where you are heading.”

Lao Tzu

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When to Tell Someone You Have Cystic Fibrosis

I’ve been holding onto this one for a while now. Since April, actually. I wrote this for my last English class to get my degree and submitted it to Newsweek in April. They require anything they publish to not be previously published, but it apparently didn’t make the cut, because they’ve have it for the allotted time to make a decision to publish it. Now it’s mine after the wait, so I’m going to use it here and re-purpose it for an online magazine soon. It’s more of an essay than an article like I usually write, so I hope you enjoy it just the same, despite many “givens” about CF that we already know as a collective group of readers.

That Sure Is a Bad Cold

Fatboy Living it up at the BeachMy doctor says I’m doing great. “You’re over thirty and haven’t had a lung transplant yet,” he says with a big grin of approval of my condition. Only patients who are generally compliant with their treatment regimen and not in dire need of immediate medical intervention receive this grin.

Cystic fibrosis is the most common fatal genetic disease in the United States, with over 30,000 children and adults who carry the recessive genes from both of their parents. There are over 10 million carriers (those who only have one copy of the CF genetic mutation) in the U.S., which comes out to approximately one in every 30 people.

From a lifestyle point of view, cystic fibrosis isn’t much different from progressive, terminal conditions, such as multiple sclerosis. Things start out great as a child with medicine to keep trouble at bay. Some even enjoy a blissful unawareness of the disease due to a mild mutation of the gene that causes it. Generally, in the teens and twenties (when Mom and Dad aren’t an iron grip of treatment police), things take a turn for the worse. From then on out, it’s a battle against damage done and the natural progression of the disease transforming the lungs into something straight out of a horror film.

One of the unique decisions that we face is the timing of letting others know about this genetic atrocity. Often, the symptoms of the condition make it obvious that something is different with us, but I prefer to wait until a relationship has been established before entrusting others with, what I consider to be, somewhat personal information. Unlike someone in a wheelchair or with an obvious physical deformity, I can hide or disguise my CF for weeks or months.

I began working from home eighteen months ago and struck out on my own a year ago, forming an LLC with my wife and carving out a nice niche of work in my field. The newfound freedom to travel came in handy by allowing us to go to Ohio for a family vacation and I was able to connect with another guy in my field.

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