Monday, August 27, 2012

"It's Just A Number!": My Thoughts on Sharing PFT Numbers

Here I go getting myself into trouble again, but this has been on my mind for a while. This is not a shot at people who share their PFT numbers. If you choose to share your PFTs with others publicly, that's great. If you like to know other's PFT numbers are because it helps motivate you to be your best, then by all means, please continue to do so. All I want to do is share an opinion that I have and that I know others have too. Love and respect to all who read this.
As soon as you saw the title of this blog post, I know you got a little curious. And now, as you look at the picture to the left, you're asking yourself two questions:

1. What are Josh's Pulmonary Function Test (PFT) numbers?

2. Why aren't they posted as a part of the photo?


Both are valid questions, so let me start answering them by telling you a story I've only referred to in previous blog posts:
______

It was 1991. I was a "tweenager" at the time and the routine was always the same. If my sister, Angie, happened to be in the hospital for one of her extended stays, then my mom and I would go visit her as soon as my CF clinic appointment was done. We would stroll into her room and I'd have a big smile on my face, so proud that my numbers were off the charts and that my health was at it's peak, despite being a teenage fool and skipping many a med and treatment.

Angie's first words to me were the same at every visit, spoken out of concern and curiosity: "Hi (insert sisterly insult here), how was your appointment and what were your PFT numbers?"

Without a second thought, I trumpeted my numbers to her with such a callous tone as if they were no big deal and took little effort to accomplish. Not because I meant it that way, but because at the time it was the truth and I took it for granted. Normally, Angie would say something encouraging to me, giving me a high-five and a big smile. This time she was silent, but she managed to force a smile to her lips. I thought nothing of it as I maliciously changed the channel on Angie's hospital TV from "Oprah" to "Chip n Dale's Rescue Rangers". Our visits continued on their normal path without another awkward pause, save the needless argument about what to watch on the boob tube.

Later on that evening, many hours after we came home, I could hear my mother's voice as one side of a conversation trying to soothe the caller on the other end of the line. She was talking to my sister.


....

"I know it's not fair. You should be as healthy as he is too. I don't know why that's not the case."

....

"Don't you worry about his numbers. You're doing a great job taking care of yourself. I'm so proud of you and so is your brother."

....

"Okay. I'll be there as soon as I can tomorrow. I love you, Totsie."


I broke my sister's heart....AGAIN.

The next time I had a clinic appointment, Angie was thankfully at home, curled up on the couch watching a movie. When I walked in the door, she asked me that same question: "Hi (insert sisterly insult here), how was your appointment and what were your numbers?"

"They were good." I replied. "How are you feeling?"

It caught her a little off guard. I think it was the first time I ever asked her how she was of my own accord. Angie smiled and told me a little bit about her day and how she was feeling. The subject of my PFT numbers never came up again in that conversation or at any other time during the rest of our relationship.

_____

I think of that story every time I do a pulmonary function test. I look back at how different our lives were. How she had to fight for every breath and I had two decades where I was, for all intents and purposes, just the sibling of someone with CF. Yes, I had my CF issues, but they were measly in comparison to my sister. I don't have guilt over being healthy. My guilt comes from the fact that Angie never got that same breaks that I did. How every success I ever had was bittersweet for her because she saw what she was missing out on. She was never ever mad at me and she was always proud of me, but she just wanted to be healthy too.

With the CF Community developing this huge online presence, I see this scenario happening again...every single day. There's this push to share our PFT numbers within the CF Community and I think it's ludicrous...borderline insulting. Here's why:

First of all, the Pulmonary Function Test and it's coinciding numbers exist as a medical guideline for you and your doctors so you can visualize what kind of shape your lungs are in. It's the foundation for how you create YOUR healthcare plan because (and I'm beating a dead horse again, but I don't care) CYSTIC FIBROSIS IS AN INDIVIDUAL DISEASE. And while the PFT is meant to be performed the same way and under the same criteria at every CF Clinic, I guarantee you that's not the case. If I performed a PFT at 10 different CF clinics the results would be different every single time. That's not a knock on any CF Center. That's just the truth.

Secondly,—maybe this is just my opinion, but— asking someone about their PFT numbers is (or should be) a CF social no-no. It's no different than asking someone who's heavyset or rail thin how much they weigh or asking a potential date what their measurements are, how well endowed they are, or how much they make before you ask them out. This shouldn't be a necessary qualification toward acceptance. No one should have to feel the sadness Angie felt hearing my seemingly effortless numbers when she was trying so hard with limited success. No one should have to feel the guilt of where their numbers are at. I don't care if your numbers are off-the-charts fantastic or they're at transplant level, they shouldn't cause sadness. Especially if you're working your butt off to stay healthy.

What's that? You think it doesn't cause people pain and sadness? That I'm overreacting? Tell that to the parents I talk to who feel like they're failing because their kids numbers aren't like "Johnny with CF" down the block. Tell that to the young men and women with CF who can't breathe sitting in the hospital doing four treatments a day and countless nebulizers. In every group I'm in on Facebook, in every CF chatroom I've ever been to, there's a discussion about PFT numbers, so the heartbreak and (sometimes the bitter anger and resentment) keeps happening.

Guess what, CF Community? We're not in some @#$#% competition with each other. We're in competition with Cystic Fibrosis and the b.s. that comes with it. The picture at the beginning of this post is an actual copy of my documented pulmonary function test during a portion of my life. I didn't put any of my numbers on it because, quite frankly, it's no one else's business and because my PFT numbers are irrelevant to how your should view your PFT numbers and your journey with CF.

What you should focus on is what those lines are doing. What you should ask me is:

"Josh, what did you do to get your PFTs to go up?"

"Josh, what happened that made your PFTs go down and what are you doing to correct that?"

Those are the key questions that need to be answered. That's the info that needs to be shared. We need to support and help each other through our journeys. Not compare, contrast and criticize one another.

I'll leave you with this....

Back in college when my buddies and I used to enjoy drinking an ice cold adult beverage or two, we'd often ask each other: "Hey, how many have you had?"

Before we could reply, our friend Jim would always say:

"It's
just a number."

We'd all laugh, order another round and promptly hide Jim's car keys.

Now, nearly a decade later, whenever someone asks me: "What's your lung function?" or "What's your stats?" or "What's your PFT score?" I answer: "What does it matter? It's just a number."

It's just a damn number.

Peaceful and Honest Things,

Josh

Wednesday, August 22, 2012

See You Later, "Gramma"

When I originally read this letter that I wrote to my grandma aloud, it was only intended to be heard by our family's ears. When I finished reading it, I was asked to read it again at her funeral. I was so honored to represent my cousins and I'm proud to let the whole world know how awesome it was to be one of her grandkids. Here's the letter with some pictures of us rowdy cousins...well, the ones I could find with as many of us as possible. Vincent and Kyle...you need to be in more pictures. :-D.....:

By default, I'm the eldest grandchild. I'm certainly not the best writer of the bunch, that distinction goes to Molly and you'll find out why during what I'm sure will be a lovingly crafted eulogy you'll hear later. That being said, I can hold my own when it comes to delivering a message…especially when the message needs to make it all the way to heaven. So Grandma, listen up! This is a letter I wrote to you on behalf of all of your grandkids.

Not only was Angie the first grandchild, but she was the first girl born in the Mogren family after a VERY LONG drought. It's fitting that your first shot at being a grandmother would start off on a different foot all together than your time as a mother. The next part of your amazing journey...

You wore many hats as a grandma and supported us in every aspect of our lives. You were an advocate of many causes, a cameo guest star on Bizzare Foods, an executive producer of a movie based on real events about terrorist bears on an airplane, a multi-performance attendee of every play and recital known to mankind, a front row cheerleader at hundreds of sporting events, a counselor of broken hearts, a healer of scraped knees, a booster of secondary education and you had an amazing lap where you told the best stories, both written and from memory. You were also the best candy sharin', soda purchasin', Christmas, Birthday and everyday spoilin', Minnesota Twins watchin', slot machine pullin', Florida visitin' , theme park takinest, meal feedinest, song singinest, bestest Grandma in the whole wide world.

But you were so much more.

You were sweet and wise. You were kind and generous. Grandma, you loved us so much and beamed whenever you talked about your grand babies. Plus, your heart was open to each and every person we ever brought over to your house, so you ended up having many more grandkids than just your special bunch. Those extra grandkids may not have been blood, but once they met you…they were yours forever.

The older grandkids got to experience something very special with you as adults. You, darling Grandma, were our friend. We asked you questions, we laughed and cried with you, we confided in you, and we got to know you as more than just our "bestest grandma". It breaks my heart that the younger grandkids won't be able to learn more from you and see first hand what a truly wonderful and brilliant woman you were and will always be. Don't worry, we'll do our best to share your spirit with them as they grow up.

Just last year, when my father passed away, I looked at you and asked why things happen the way they do. You looked back at me for a moment, paused your soap opera stories and said…"I don't know, Joshua. They just do and we just have to keep on living a good life."

So all of your grandkids—Josh, Molly, Andy, Chelsey, Jocelyn, Vincent, Corey, Kyle, Joe, Maggie, Katie, Alex, Carter, Macie, and your great grandkids Reese, Baby Addie and whomever else may come along—make you a promise here and now to keep living a good life while you cradle Angie in your arms as Grandpa, Steve, Gregory and the rest of our friends and family look on with a smile.

All of you watching over us from above.

Gramma, Grammy Grams, Gramma Mogs, Granny….You are loved and will be dearly missed until the day we meet again.

Love Forever,

Your Grandkids

Monday, August 6, 2012

Competing With Myself

I wouldn't call myself a competitive person in the traditional sense. Winning and losing has never meant much to me. Some of it comes from years of being picked last in activities as a child or from people assuming I can't play just because I have cerebral palsy, asthma and CF. I hate when people impose limitations on me without taking my opinion into account. I'm a free thinking, intelligent person who knows what my limitations are. Have enough respect for me to let me make that decision on my own.

My non competitive nature also comes from the examples I see from the ultra competitive people in my life. A lot of them are just jackasses who have no humility and no tact. There's a difference between being confident and cocky. A confident person is in the zone before they compete and then embraces their competitors the moment the competition ends. A confident person embraces a win with pride and humility and handles defeat with grace. A cocky person feels the need to rub their success in other people's faces. Or maybe they like to antagonize their competitors with their words and actions rather than deal with their own issues. The only positive thing that kind of attitude provides is the bulletin board material that will be used as motivation. So, in that vein, I say "Thank you, jackasses."

I used to compare myself to others all the time. Thoughts like "Why don't I have those things in my life? That person doesn't deserve it. How unfair!" would constantly run through my mind. I worried myself sick—literally and figuratively—thinking about what I couldn't do or what I didn't have. It was bitter time in my life that I look back on and shake my head in shame. Too often in the world we get angry at others achievements in life. The CF Community is no different. For every person that's inspired by a public figure for accomplishing a goal in the face of CF, there are detractors who lambaste them every step of the way. These detractors perceive it as a personal slap in the face or a sign weakness if someone is telling them how they can reach their goals and do great things. What they perceive may not be the reality...

More often then not, when a public figure shares their message or story, it's simply an example of what you can do when you set goals and work hard. Do some come off as the cocky jackasses I mentioned earlier? Yes, but most of the time I don't think it's done intentionally or maliciously. Regardless if we're talking about exercise, professional or personal achievements, they share their stories because they care about you and they want you to do the best you can with what you're given just like they have. Does that mean you have to run a race, have a baby or work 50 hours a week to be a successful person with CF? No. It means they want you to set YOUR OWN GOALS and achieve them. Sometimes I wonder if that's the message that gets lost in translation.

I received an email recently that said:

Dear Josh,

I hate CF and I feel like I'll never be able to do anything because of it. How do you stay so positive and how have you been able to do so many interesting things?

Sincerely,

Anonymous Person


I think my answer fits very well into this post, so I thought I'd answer publicly:

Despite what people think of me and my persona as a public figure in the CF Community , I am a HUGE WORRIER. I worry all the time about money, my health, my relationships and my future. The one thing that keeps me peaceful is that I always seem to survive whatever it is I'm worried about. Life has a way of keeping me going even if I end up with some lifelong scars. It sounds weird, but my track record of hardships has become my saving grace.

I think I stay positive because I try not to measure my success against other people. I try my best to understand why someone says or feels the way they feel and why they do what they do, but if I feel it's a negative, I eliminate it or them from my life. I don't have time to waste my energy on negativity. I ALWAYS cheer on my CF kindred spirits (whether I agree with them or not) who are living their dreams despite our illness, but I feel no pressure to be them or emulate them because that's THEIR LIFE. I see what they do and it inspires me to be they best Josh I can be. And that attitude has opened tons of doors for me.

So, I guess you could call me a self-competitor. I've worked hard to survive life and to achieve the goals I set for myself. Sometimes I fall short of those goals, but then I regroup and try again. I know there are somethings I'll never achieve, but as I've said before, I'd rather try and fail than fail to try. When those moments that hurt my heart pop up from time to time, I take a step back and count all the good things in my life.

A roof over my head.
Food on my table.
My family and my friends.
I have the medicine I need and the doctors to take care of me.

Everything else is insignificant.

Always remember: You're a unique and talented. You're loved and lovable. You'll find your place in the world. Be inspired by others, but believe in yourself. Those who inspire us can only give us incentive. The rest of the hard work is in our hands. Set realistic goals, believe in yourself and do your best to achieve them. After all, if you don't believe in yourself, then why should anyone else?

Peaceful Things and Lots of Powerful, Positive Energy,

Josh

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Peaceful Things ~ Josh
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