When is When to Let Others Know You Have Cystic Fibrosis – Part 2

I concluded my first part with our move to Florida, which happened to be on my 16th birthday and school was already out for the year in FL. My first day of school here, at Land O’Lakes High Skooo (we had a very southern principal) was to be the first day of the rest of my life. Sitting alone at my table for lunch, I realized that I could be whatever I wanted to be, well… except a tall, handsome jock.

I was determined to be “normal” at all costs. It was no longer necessary to leave a class early to go down to the school nurse to get my meds for lunch or have classmates with long-held childhood memories of all of my stays in the hospital. I did my best to not have a coughing spasm in class and confine those to the hall where there were hundreds of people to drown out the sound or hide my red or purple face. I was suddenly a very small fish in a very small pond. My sophomore class was larger than my entire high school in Ohio and the school (having only 4 grades) was just a little smaller than my entire K-12 school in Ohio.

I decided that the regular classes were a good way to get into drugs, trouble, and waste away while the honors classes were markedly better quality people in general – and they were. I don’t think I told more than 10-30 classmates that I had CF because I didn’t need to. I was generally healthy and played on the golf team and had a very small circle of friends in my honors classes and that was all I needed.

On to college I doubt more than 2 people over 13 years of courses knew, other than professors who needed to know on the rare occasion that I missed a class directly related to CF. As far as anyone on campus of 40,000 mostly commuter students knows, I’m just a seriously short dude who walks around with a Gatorade bottle in his hand most of the time to stifle spaz coughs while walking between classes, but they don’t know why I have the drink.

Coming onto the business scene pretty early after high school, I had some occasions where I had to be under some sort of special treatment by my employer due to a sinus surgery or home IV meds that required 3-4 doses per day that interfered with my work schedule. Those were few and far between, though.

My last corporate job is a good example of how I handle telling people. There is no way I can hide my cough from people within earshot 8 hours per day in Cubicleville. It’s not going to happen. Of those people, probably 50% of them were told by me or one of my closer co-workers whom I entrusted with the knowledge and gave them permission to tell if asked if I was okay. I had dozens of people across the building who respected my work but had no idea anything was wrong with me. If I coughed, they thought I was getting over something or blamed it on the pollen count for me.

Then there are the VERY strange interactions. I was in Ohio visiting family and met up with Chris Johnson in Columbus and we were discussing our businesses, which led to talking about insurance. Shortly after that, I coughed and he directly asked, for the first time in my life, “do you have CF?” I was shocked! He had a friend growing up who had, and thankfully still has by virtue of still being alive today, CF. The cough was familiar and we had an instant bond there.

Now, the question is: does that create more respect, more pity, or is it indifferent?

I lean towards “more respect” if there is already respect and “more pity” if there is nothing there yet. If I’ve delivered product(s) before at or above satisfaction and then skip a beat, e-mail to notify of some health difficulties due to my disease, clients are more than happy to give me a few extra days. I never play it as a “get out of trouble free” card, but there are times I need some more time, like going into the hospital for 30 hours after my birthday dinner. I had stuff due that next day and church to go to on Sunday, but I missed it all sitting in an ER and hospital room. I was off my game for a week after that, but everything got done and caught up.

I got a heart-warming e-mail from Darren Hoyt, a good friend in the industry, after New Years that really made my day. With his permission, I’m putting it here to show what is so great about him and what really works for encouragement and opening lines of communication.

Hey Jesse,

I feel kind of stupid – I did not actually know you had cystic fibrosis until I gleaned it on Facebook. I had read you had been in and out of the hospital, but didn’t know the full extent. I know it’s a major ordeal and a battle and presumably takes up a lot of time & frustration in life. Hope you are getting through the holidays okay despite it all.

I’ve had new clients since who are still in the dark about my CF. That’s how it works.

You’re on a need to know basis.

donate to my causeThat said, and you obviously know now, I’m walking for the CF Foundation’s Great Strides walk on May 15th and I’ve set a fundraising goal of $25,000 to go towards CF research for a cure. There are many new treatments in the process of receiving FDA approval, and a cure is close. Please consider helping out by clicking the image.

I did some calculating:

If I get a 10% response from my Twitter network to donate $25 for the Great Strides walk for CF and then those people got a 10% response from their estimated 400 followers each, that’s over $80,000 raised for CF research. “Many hands makes light work.”

When is When to Let Others Know You Have Cystic Fibrosis

I usually don’t write about cystic fibrosis. Heck, most people don’t, because they don’t have it; however I do and I still don’t write/talk about it much. As a matter of fact, I try to forget that I have it at all, but the bottom line is that it’s hard to do that when I have to take pills just to eat a fatty snack and at every meal.

As a kid, I never had a chance to break the news when I wanted to because my parents pretty much took care of that before very long, if not before someone met me. Understandable from a safety point of view, sure, but not exactly fair to allow for a “normal” first impression. Teachers had to know, my friends’ parents had to know, etc. to make sure I had my medicine at meals and if I started coughing my head off no one called 911.

I read a great post by a friend in Arizona who is sorta taking the CF bull by the horns and tooting them at the same time. Ronnie Sharpe wrote this great bit in July: So When Do We Tell Our Friends About CF? and he got a decent response for “back in the day” on his site. I’m not sure where my comment is, but maybe I just responded to it on Facebook. He is very outgoing with his CF and is all about getting the word out about the disease to raise awareness. You’ll see more about that from my angle in a bit.

Here’s where I stand as a CFer with a business to run and classes to attend (until May) as to my status as a CFer: “you’re on a need to know basis.”

I’m sure Ronnie is probably thinking something along the lines of “why the heck would you keep it so quiet?” about right now as he reads this for the first time.

It is a rare time or a rare person whom I tell within the first 3 months of knowing them on a regular basis. Some people have known me for years and not known that I have CF. I can probably count on one hand the number of non-medical people I’ve told at our first time together, be it a party, work day, or small group/church activity. Why!!??

Because I want to be Jesse Petersen. I don’t want to be The Guy with CF Whose Name Is Jesse Petersen.

I want to be the WordPress expert, the lover of my wife, the writer of witty prose, and the successful business owner. I don’t want to be the guy who needs work to pay health insurance or die, the charity case that got someone to love him “despite” CF, the writer who is cranky because his health could turn, or the business that you need to stay away from because it’s possible that things drop off for a few days because of a simple cold or a weekend in the hospital.

Why is that so important to me? Normalcy. All I’ve ever wanted to be my whole life is “normal.” Growing up, I was always in the bottom 5th percentile on height and weight and frequently got picked close to last in sports because of my size. It shaped a lot of who I was.

I compensated by being mean and pushing people away. That didn’t work. I tried being funny, and that worked, except with my teachers. I started applying myself in school and getting nearly straight A’s to make the teachers and my parents happy. There! Everyone was happy. Except the non-normal kid. Yeah, the one with CF who was going to be lucky to live to graduate high school. I could read. I knew what the doctors said about the prognosis.

Then we moved to Florida.

To be continued…

Great Strides Walk for the Cure for Cystic Fibrosis

donate to my causeI am a late entry to walk in the annual cystic fibrosis walk, but decided that I have enough contacts and means to reach them in one day to raise my goal of $1,000 toward research for a cure for cystic fibrosis.

For those of you who are unfamiliar with CF, here is some info for you:

  • http://en.wikipedia.org/wiki/Cystic_Fibrosis
  • http://www.cff.org/AboutCF/Faqs/

Approximately 30,000 children and adults in the United States have cystic fibrosis. An additional ten million more—or about one in every 31 Americans—are carriers of the defective CF gene, but do not have the disease. CF is most common in Caucasians, but it can affect all races.

The severity of cystic fibrosis symptoms is different from person to person. The most common symptoms are:

  • Very salty-tasting skin
  • Persistent coughing, at times with phlegm
  • Frequent lung infections, like pneumonia or bronchitis
  • Wheezing or shortness of breath
  • Poor growth/weight gain in spite of a good appetite
  • Frequent greasy, bulky stools or difficulty in bowel movements
  • Small, fleshy growths in the nose called nasal polyps

I Got the “All Clear” for the ALZI Trial

I received a call this afternoon from the trial representative at the hospital that I passed the last step to being on the trial: being sick. Well, I ain’t that sick (yes, as my “former Dean of the English department” professor tells us in my level 4000 grammar class, that is gramatically correct), but I did test positive for Pseudomonas aeruginosa and fell within all of the other criteria.

She is faxing in my paperwork and I should be called in to Tampa General Hospital (TGH) for my orientation with the meds and my new Pari eFlow aerosol machine. I have the old version (pictured in the battery-operated configuration), which works wonders to disperse the medication in 3 minutes rather than the traditional 15-30 minutes. This new one is supposed to work even better, though I’m not sure yet if it is supposed to be faster or more effective or both. The trial is also somewhat a trial for the new machine, since it is not available for the general public yet.

I got my TOBI meds on Tuesday and I can already feel the difference using something targeting my problem, so I can’t wait for the ALZI to go to town on my gunk.