Tuesday, August 28, 2012

Two Sides of the Coin: Great Conversation with Fellow Fibro

Many of you, if not all of you know Josh Mogren. If you don't, you should. He's done amazing things for this community and continues to be a great example for all. He's done an especially amazing job teaching the younger cysters and fibros how important it is that they take care of themselves and presents that message through his buddy Moganko. Josh also has a blog called "Welcome to Joshland".

With that said, he wrote a blog yesterday, which was wonderfully written by the way, about his thoughts on sharing PFT numbers. While I agree with everything he wrote, I stand on the other side of the issue. Nevertheless, we had a great conversation in his comment section that I wanted to share (there may be more posted, but at the time this blog was published, that is all that is there). You get both sides of the coin, and you can see two fibros, who don't agree on the means, agree on the ends, in a very loving and respectful way :) 

He's a very valued member of this community and I'm thankful there are guys out there who I can be a Robin to their Batman. They didn't always agree right?

Read his blog HERE and my first comment starts below with his responses in grey.

I agree with almost everything you said, J-Mizzle. With that said, I still don't think sharing numbers or asking someone their FEV1 should be a no-no. There is a lot of truth in being able to do things at 75% that you can't do at say, 35%. There's also truth in that it's harder to go from say 40% to 50% than it is 80% to 90%. If someone comes to me with an exercise question, knowing their lung function is pretty important.

Here's why I'm specific and say my numbers. I'll use myself as an example, if I said my PFTs went up since I recommitted my life to exercise and treatments, but didn't give my number, I feel that it doesn't make as much of an impact. "Many people couple think, great, they went from 85% to 90%. Doesn't sound worth it." or "You were much healthier than me I'm sure". For me, that doesn't tell my story.

My story is - Well, I started at 50% and achieved that number after 52 days in the hospital and coming in with an FEV1 in the 20's. Then, after two years of working my butt off, never missing a workout session and doing 3 to 4 treatment sets a day, every day, I got to a 75%, a number that I hadn't seen since 2003. (Yay, run-on sentence!) 

Point is, sometimes numbers provide context. And sometimes, context is important.

I'll end at this - I'm also a little sensitive to this topic, as it relates to publicly sharing personal stuff, when a fellow community member asked me to stop posting pictures of my family and house because not everyone in the CF community can be happy and have a family. I thought then, where does that end? Should people not post pictures of green eyes because someone in the community may want them but can't have them? 

All that to say...I appreciate and respect where you are coming from and your perspective has certainly been formed through a very valid and real situation. I think it's great that you don't share your numbers and I don't think you should at all feel compelled to. Thank you for writing this.

And yes, it is only a number!

Ahhh Mr. Sharpe....I figured you'd chime in on this one. :-)
As I said at the very beginning of the post, if people want to share their numbers, then that's fine. I know that it helps some people and motivates them to a healthier lifestyle. 
Personally, I'd rather hear someone say "I was able to increase my PFTs by 20% by doing X,Y and Z." because I'd want to know how they did it. This is especially important to me since there are so many different environmental, physical and genetic factors that contribute to how CF manifests in our bodies. Bottom line is, one person's FVC and FEV1 is irrelevant to another. 
More importantly, my sister represents a lot of people in the CF population who work really hard to take care of themselves and still struggle to breathe. They spend more time in the hospital despite busting their butts. Your numbers would mean nothing in the context of Angie's situation because CF is different for everyone. 
Much respect to you, Ronnie.

Totally agree with you. One person's lung function is totally irrelevant to another just as one person's CF is as well. It's funny, I agree with you on everything, we just have different opinions. It's weird how that works :)

And I understand that my numbers would mean nothing in context of Angie's situation, but they could mean something to 1000 other people.

Here's what I've learned - No matter what I say or how I say it, people are going to agree/disagree and love/hate me. The only I promise to anyone who listens to a word I have to say is honesty, and to stay true to who I am.

It's also important to point out that the knife cuts both ways. Their are those in our community who don't share their improved or high numbers, or hardly anything else for that matter, for fear of being judged or slighted by those who view themselves as "less fortunate".

To me, that's just as big of a travesty. No one should ever feel guilty about good health.

Love this conversation.

I agree with you, the knife does cut both ways. Which is why I wrote this in the blog post and why I written similar thing in other blog posts: 
"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." 
No one should feel guilty for being healthy, but I believe it's important to acknowledge and show empathy to those who might not be. It's a sign that we're lucky to be in the positions we're in. Also...I don't think those people view themselves as "less fortunate". I think most have had a very rough run and are doing the best they can to manage it. 
If what we say helps people, then that's a good thing. We're both all about reaching people and helping them do the best they can with what they've got. We've just got different ways of doing it.

People often use that word "lucky" and it's something that drives me bonkers as well. Are some people who are "the healthiest among us" lucky, or are they working their butt off? Well, as you know of course, both. But their are far more who are working their butt off and doing what they have to do each and every day to stay healthy, then are doing nothing and staying that way. And yes, I think there are plenty who have had a rough run of it and doing the best they can to manage. There are those who can do everything right and still be sick. However, you ask any CF doctor, or refer to any study that tracks adherence rates, the picture is clear - the majority of CF patients fall into the meaty part of the bell curve in which what we do (or don't do) will positively or negatively impact our health. 

My passion comes from getting to people before they bail on treatments or make stupid life decisions. The fact of the matter is, many people "get it" when it's too late. I yearn for people to "get it" before they're staring at a low lung function or a recurring infection with no end in sight. You can in fact work your butt off when it's too late and not have any positive results. They're not impossible, but certainly much harder to achieve. 

I simply want the younger generation to make better choices than I did. Just like you :)

I'm thankful that you're such a visible part of this community and I appreciate everything you write.

And that's where you and I are different (which is okay). 
Studies are awesome and I'm all about the research and science aspect of CF. If it wasn't for those things, we'd be dead.That being said... 
For every doctor's opinion or study you give me, I can counter it with stories of real life experiences and situations as to why people with CF are non-compliant and why they struggle. These are factors that no doctor could ever reproduce in a study or write about in a paper. Many times the meaty part of the bell curve holds so much more than just the black and white cases of being lazy and not doing treatments. It's more than just statistics and numbers. 
When I have empathy for someone, that doesn't mean I cut them slack for not doing there treatments. I bust on people all the time about taking care of themselves and I have no sympathy for that. You have to love yourself and believe in yourself before anyone else will believe in you. The bottom line is we can say whatever we want to people in the CF Community, but they're the ones who can do the work to help themselves. We can't do it for them...we can only show them a path. 
My empathy comes from the things that have happened to me. The losses, the struggles, the pain have made me understand that this disease is not as black and white as people make it out to be. I can't ever be in someone else's shoes with CF, but they want my help and they need to let that our I'm here to listen. I'm here to support and do whatever I can to ease their struggles. 
I call myself lucky because I am. Lucky to have the genetic mutation that I do. Things could've been much harder on me. Angie wasn't so lucky when it came to her health and her genetic mutation. I'm lucky to have the support system that I do. Many people in our situation don't have anyone to turn to. I'm lucky to have life I do. I love my wife and my family. People think we're entitled to things like that, but that's not the case. Yes, I've worked hard to get what I want in this world and I'm damn proud of that, but a lot of it wouldn't have happened without a lot of luck and a lot of love. Life is a crapshoot and we make the best with what we're given. That's what I've done. That's what luck means to me.  
And guess what? It could all be gone tomorrow. So I do my best to be humble and know that fate, God or luck (maybe a little bit of all of them) has given me experiences and a gift to connect to people and I don't want to take that for granted. I want to show them compassion, love and understanding in the midst of a terrible illness. I want to help them believe in themselves even through the hardest of times. 
I share my story and Angie's story so that people will see what a gift life is and how truly lucky we are to be on this earth and live whatever life we're meant to live no matter what stands in our way. Hard work and luck go together in my life.
I'm very appreciative of what you do for people, Ronnie. Please don't think anything different. I respect you and your family. We just have a different path to a similar kind of success. 
I'm glad we're having this discussion.
Peaceful Things, Ronnie.
I think we could go back and forth all day on this, so I'll just end it here.

I just can't help but think about the phrase "same kind of different as me" when I think of us. Two lives, two paths, two messages, one goal. Love it.

Thanks again for all of your hard work and dedication not to only the community, but to yourself.

Likewise, dude. Likewise.

The final thing I would like to point out is that all we have come to know is either learned or it's come by experience. Experience shapes our truth. Two people can have opposing views, opposing "truths" and hold opposite opinions, and both be right. We only know what we believe. What I loved about this conversation is the diversity in opinions held, yet the unification of wanting what's best for the community.