Changing the standard of thinking.

Cystic Fibrosis and Baldness

Cystic fibrosis and being baldAnother world first is occurring everywhere CFers are getting older: baldness. What parent who was told their child wouldn’t graduate from high school would have thought the day would come when CFers are living long enough to go bald? Furthermore, what normal person thinks so highly of the “privilege” of baldness?

I’m not sure of how long ago it was, but several years ago I was shocked to feel a little stray hair growing out away from my hairlineย  – out in the middle of my forehead! I went to the mirror and verified that was what was going on. Soon, I had quite a few of them, growing down a line along the edge of my hair. Unless I had somehow started growing more hair down past my hairline, I was losing hair behind these lonely little guys.

They say you get your hairline from your mom’s dad. Well, my grandpa is known to say that he’s not bald but has more face to wash. He’s not bald in the traditional sense but his “face” is quite large now, although he has 48 years on me. I used to have a full, curly, head of hair when I grew it out – as recently as 2008 when we bought our house. That was the last time it looked good to have hair of any real length in the area shown. I’ve tried to grow it out, but I just can’t get past that ridiculous stage to see if having long hair is enough to fix that. Besides, I don’t really want long hair with all of the heat and humidity we have here 10 months out of the year… and a buzz is so low-maintenance!

Of course, there are other ways we are visibly showing our age that aren’t directly related to being either men or women, such as arthritis, age-related eyeglasses, skin disease, and probably some dentures by now. I don’t know about you, but I’ll be darn proud to be bald and sporting new knees.

What non-CF-related things are starting to show your age?

Cystic Fibrosis and Divorce

Love and MarriageDespite having cystic fibrosis, I live a charmed life. My fibros with their wonderful women by their sides know exactly what I’m talking about. As a kid, I had no concept that I would be a less-than-desirable partner when I grew up. As a teen, it started to become more evident that I wasn’t like the guys who had girls hanging off their arms, soon followed by the realization that CFers have the deck stacked against them when it comes to finding work that can support a family. Our wedding day was, without a doubt, my happiest day of my life – but the story doesn’t end there for couples, does it?

Divorce is rampant with rates around 50% for decades now and having a child born with CF sends those odds through the roof, certainly in the 60s and 70sย  when CFers were dying by the time they were 12, almost without exception. Money fights are still the biggest cause of divorce in America, and having a CFer will almost certainly put financial strain into all but the richest’s relationships. So…

A new era arrives

What happens when CFers start getting married? [Read more…]

A Season for Everything

season-summerI’ve had many seasons in my life, but they just seem to come faster and faster. What I’m not sure of is whether it’s just a perception that comes with having more years’ experience and time speeds up or if it’s because we are causing so many changes. Since we have such a broad audience of CFers, family of CFers, and friends and those generally interested in things we experience, this is a topic for all of us.

I remember when our 9-week grade cards took forever and a day to come around in elementary school. Then in high school, things started to revolve more around semesters, but we still had the 9-week crutch to break things up. I was in and out of college so many semesters, that whole thing is a mess to me, but I can tell you that my last year of college (31 credit hours) was both the longest and shortest year of my life! That speed has only been surpassed by the months that have gone blazing by since. We’ve been to Tennessee for a week, Ohio for a weekend, and nearly tripled the work that comes across my path for work since graduation.

Where does the time go?

All of this speeding up has me concerned about how much time we all have left. [Read more…]

Daring Greatly

“It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, who strives valiantly, who errs and comes up short again and again, because there is no effort without error or shortcoming, but who knows the great enthusiasms, the great devotions, who spends himself for a worthy cause; who, at the best, knows, in the end, the triumph of high achievement, and who, at the worst, if he fails, at least he fails while daring greatly, so that his place shall never be with those cold and timid souls who knew neither victory nor defeat.”

– Teddy Roosevelt

Cystic Fibrosis and Baldness

Another world first is occurring everywhere CFers are getting older: baldness. What parent who was told their child wouldn't graduate from high school would have thought the day would come when CFers are living long enough to go bald? Furthermore, … [Read more]

Cystic Fibrosis and Divorce

Despite having cystic fibrosis, I live a charmed life. My fibros with their wonderful women by their sides know exactly what I'm talking about. As a kid, I had no concept that I would be a less-than-desirable partner when I grew up. As a teen, it … [Read more]

A Season for Everything

I've had many seasons in my life, but they just seem to come faster and faster. What I'm not sure of is whether it's just a perception that comes with having more years' experience and time speeds up or if it's because we are causing so many changes. … [Read more]

Daring Greatly

"It is not the critic who counts: not the man who points out how the strong man stumbles or where the doer of deeds could have done better. The credit belongs to the man who is actually in the arena, whose face is marred by dust and sweat and blood, … [Read more]

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