Tuesday, August 2, 2011

Piper's "Blogger Challenge"

This blog is my participation in Piper Beatty's "Blogger Challenge" which you can read about at the bottom of this blog post. Here it goes....

There is a scene in Jurassic Park where Dr. Hammond and Dr. Sattler are sitting around a dining room table eating ice cream. Why are they eating ice cream, you ask? Well, because the world has gone to hell in a hand basket. The power has been shut down allowing the carnivorous dinosaurs to escape their enclosures and turning all of their loved ones trapped in the park into dino-snacks.

Despite the peril they are in, Dr. Hammond is still trying to convince himself that he can regain control of the park and the unknown dangers within...

John Hammond
:Now, the next time everything's correctable. Creation is an act of sheer will. Next time it'll be flawless.

Ellie Sattler
: It's still the flea circus. It's all an illusion.

John Hammond
: When we have control again –

Ellie Sattler: You never had control! That's the illusion! I was overwhelmed by the power of this place. But I made a mistake, too. I didn't have enough respect for that power and it's out now. The only thing that matters now are the people we love. Alan and Lex and Tim … John, they're out there where people are dying.

I must have watched that movie nearly a hundred times, but until recently I never realized how much this relates to cystic fibrosis. Control implies a sense of certainty. A complete and utter belief that we can predict what's coming and know EXACTLY how to handle it every single time. And THAT is our illusion. No matter how prepared we are, no matter how type A our personalities may be, there will be times with CF will knock us on our asses leaving us confused and wondering where to go next. Do I think CF is a controllable disease? No.

I can see the expressions on your faces. Pale as a hospital bed sheet, you're thinking: "Holy hannabarberra! Josh has given up, waved the white flag, cashed in his chips, pulled the fire alarm, abandoned ship! " To that I say, NAY, my good friends. I'm just being honest because if there is one thing I've learned in my 32 years living with CF, it's that the only thing for certain about this disease is uncertainty.

That being said, I do believe this disease is MANAGEABLE. How? By being compliant. Doing therapies, taking our meds, going to doctor's appointments, being active in some way. These are the tools we use to slow progression and to aide us in our quest for a "normal life".

But there is that word...compliance. Man, I wish I had the actual definition of compliance handy to share with you, my dear readers. Oh wait.....I DO! MMMWWWWWWAAHAAAHHH! (as I rub my hands together in a villainous "I-fooled-you" manner.)

Definition of COMPLIANCE

1
a : the act or process of complying to a desire, demand, proposal, or regimen or to coercion b : conformity in fulfilling official requirements
2
: a disposition to yield to others

I know this is not literally what our healthcare team (i.e. doctors, nurses, social workers, and to a larger extent our family and friends) wants us to do...but doesn't it feel like that sometimes? There are times when I think my healthcare team wants to leave a trail of Reese's peanut butter cups from my house all the way to a hospital room. Then, the moment I walk in room they slam the door and refuse to let me out until I agree to do IVs or some other form of sadomasochism.

When it comes to my healthcare, I do not have a disposition to yield to others. If I did everything my doctors ever told me to do, I would never leave my house. I would be on a strict regimen of treatments, medicine, drug studies and nothing else could get in the way. When I was a kid, sometimes my doctors made me feel like they were the "fun police". I can't blame them. My doctors became family. Sometimes a family is overprotective. I think that is one reason I went through my rebellious phase as a teenager. I was definitely a "screw compliance and screw CF" guy for a while. I figured what's the point if I was going to die young like my sister anyways? I skipped treatments, I lied about taking meds, and I did things that have had very negative and lasting consequences on my body. I was tired of being told what to do. I wanted to believe I was invincible. Oh, how foolish I was.

As an adult, I found that middle ground and the true definition of CF compliance:

Definition of CF COMPLIANCE

1. A combination of quality of life and healthcare management.

I feel a responsibility to take care of myself, but I know whether or not I can miss that treatment ONE TIME to hang out with friends. I'm brave enough to stand up for myself in the doctor's office while being open to opinions I might not want to hear. I may not have complete control of my CF life, but I certainly have control over how I handle it.

On a final note...

I want the guilt in our community to go away. I don't want people who are labeled "healthy CF patients" to feel bad for being that way and I don't want people to be angry and judgmental towards others for being healthy. They didn't choose to be healthy to spite you. Be happy for them. Cheer them on. Love them because they are living the dream every day just like you would if roles were reversed. I also don't want people who are really sick to feel guilty when they read, hear about, or see others running marathons or working 50 hours a week. As long as you are doing the best you can, that is all that matters. CF is an individual disease. The only similarities we really have are in our symptoms and the labels we are given (CFer, Fibro, Cyster, etc...). The severity of those symptoms and the way they manifest in our bodies are different. You don't believe me? Read about my sister. We had the same parents. The same mutation. The same environment. TOTALLY. DIFFERENT. DISEASE.

Most of all, I want the fear of the unknown to disappear from the CF Community. I don't want CF to hold you back, but I want you to know your limits. The only way you know those limits are if you TRY THINGS and LIVE LIFE. Have dreams, for heaven's sake. Will all of your dreams come true? Probably not, but as I've said before, I'd rather try and fail than fail to try. Life is too short to not live, try and dream.

Peaceful Things,

Josh

How to participate in the "Blogger Challenge":

1. Write a blog explaining your personal thoughts and experiences in dealing with CF control and progression. This could include your views on whether CF is in fact a "controllable" disease, your personal definition of compliance, your thoughts on whether (or how) someone with CF should be judged in terms of "good enough" self-care (what makes you feel judged? do you think those fears are justified? is judgment ever useful in this context?), your own struggles with control vs. unpredictability, and how you keep motivated in the face of so many questions. Or, you know, whatever you want to write about really. It's your blog.

2. Comment below with a link to your blog so that all of us can read your response. YOU DO NOT NEED TO LINK TO MY BLOG IN YOUR ANSWER. If you'd like to do so, please feel free, but this is about starting a discussion, not publicity.

3. Encourage your own readers to get in on the conversation by posting the same instructions on your blog. Remember, the more responses, the better the conversation. Let's see if we can get this one going as much as with past challenges.

4. If you don't have a personal blog (or just don't feel like going through steps 1-3), feel free to still make yourself heard by simply leaving a comment with your thoughts below.

5. Non-CFers are 100% welcome to participate, either by pulling from their own experiences or simply by offering their perspective as people, friends, and loved ones.

9 comments:

  1. Great blog Joshy, love the openness, thoughtfulness and honesty. As you eluded to, most have us have done stupid things and made poor choices that may have impacted our health for the long run. As we "wise" old fibros know, all we can do now is make better choices today to put us in the best possible position for success.

    One thing I wanted to applaud you on is your commitment to the next generation of cysters and fibros through your Moganko videos. Moganko is all about teaching children to embrace this life and have "fun" taking care of themselves.

    If these parents and children can learn from our poor choices and in turn make wiser ones, I think we can all agree that that would make us very happy! Thank you for all that you do for the kids and parents :)

    ReplyDelete
  2. so good. so good. and, oh yeah, SO GOOD! thanks josh, from the bottom of my heart. this is just an amazing piece of writing.

    ReplyDelete
  3. "Get out of my head" is right, my friend! I thought the very same thing when I read this post. Only yours is well thought out and far more eloquent than mine. ;)

    One of my favorite things about you is the way you can say how you feel in no uncertain terms, yet you don't step on anyone's toes or criticize the way anyone else feels.

    Great job, as always!

    ReplyDelete
  4. I adore this post, Josh! Excellent points...excellent "revised" definition of compliance...excellent comparison to Jurassic Park...excellent post!

    ReplyDelete
  5. I always love reading your blog, you just have a way with words! This one was a great as all of them. I find myself with the same sort of thoughts. You cant always control what CF throws at you. There are 3 of us kids in my family with CF. Like in your family, same parents same mutation but everything is so different! I've come to realize over the years that what is the point of complying with your doctors and doing everything you can to stay healthy if you aren't out there living life! If I am going to spend all that time taking care of myself to stay as healthy as I can why not go out & enjoy life while I can.

    Great blog Josh (:

    ReplyDelete
  6. Fighting CF alongside your sister, Angie, and then having to watch her die from your shared disease was a cruel event in a young boys life. Turning your back on pills and therapy as a teenager was not unexpected, but sure made me pray a lot harder. Seems having that immortal sense of being is part of every teens life, so good to see you be "normal". I was concerned for your health as your mom, but you could have made much worse choices. I was delighted I wasn't getting you out of jail for robbing gas stations or doing drugs or something else really stupid. Thankfully you were balancing it by working out on the wrestling team and having some amazing good friends.

    Turns out you are easily one of the most successful people I know. You have made excellent life choices, your wisdom, intelligence, compassion, integrity and moral character shines all around you. You have a college degree, have worked and been productive since your teens, volunteer to help others, and have an great sense of humor, self, reality and optimism. You have found someone to love, and to love you-your amazing wife. My hope as a parent was to raise an independent, responsible adult, who happened to have to live with CF on his journey.

    You are so much more than just that, my son. I love you.

    Mom xoxox

    ReplyDelete
  7. Love this post, and love your mom's comment. Thank you for sharing your life with us!!

    ReplyDelete
  8. Great blog post. Compliance to me is as unique as the patient. Most folks need to find what works for them. It might take a little experimenting, but in the end you are responsible for your own care, compliant or not.

    I've participated in your blogger challenge by writing my own blog post on the subject of compliance. Thanks for the idea!

    ReplyDelete
  9. Amen, amen! I think there is way too much judgment in our community - from every angle.

    ReplyDelete

What'd You Think?

One of my favorite things about my blog are the comments I receive on my posts. I am so thankful that you take the time to write them. I may not respond personally to everyone, but make no mistake...I read every single one.

If you'd like to leave a comment, but don't have an account that's listed in the drop down menu, choose the "Name/Url Anonymous" options. Then write your comment, fill in the word verification and click "Post Comment". I will receive an email and post your comment once I've approved it. :-)

Peaceful Things ~ Josh
Related Posts with Thumbnails

Legalese

I own all written material on this blog unless otherwise noted. © Josh from http://welcometojoshland.blogspot.com 2009 - 2013.

I will do everything in my power to give credit to the ORIGINAL ARTIST of any media I post on my blog.

If you'd like to refer to anything I write, please do, but link to me and give me some credit rather than reposting what I said. I'll extend the same courtesy to you. That way we'll share readers which is a great thing.

Images on this blog - including Welcome To Joshland banners and graphics - are my property. © Josh from http://welcometojoshland.blogspot.com. To my knowledge, all other images are public domain or used with permission of their respective owners.

PLEASE ASK PERMISSION TO USE ANY OF MY IMAGES ON HERE. IT'S THE NICE THING TO DO.

PLEASE DON'T STEAL MY WORDS AND IMAGES. THIS IS MY LIFE I AM SHARING WITH YOU.

Creative Commons Attribution-NonCommercial 3.0 United States License.