My Cystic Fibrosis Mantra

Earlier today, I posted a status update on my Facebook page that has elicited quite a few different emotions. I thought that instead of individually responding to all of the comments on my post I would just write a blog about it instead.

Here was the post, 11 simple words, yet 11 that I find so empowering...

"CF is only as progressive as I allow it to be."

Many of you know my full (CF) story, but some of you may not, so let me give you the highlights as it relates to my mantra.

When I was diagnosed my mom went through all the possible emotions a mother could go through. She was sad. She was mad. She was scared. She was confused.  She reached out for help. The "help" she found was in the form of a support group at the local hospital. She went to that support group one time, and after being bombarded with phrases like “out of our control” “always suffering” “nothing we can do” “I hate this disease” “we are fighting a losing battle” “it feels like I'm just waiting for my son to die” “why would God do this?” and “robbed of a life”, she never went back. That's not the kind of "support" that my mom needed. Those aren't the things that she needed to hear in order to face this CF life head on and give me the very best chance to succeed.

So what turned it around for her? What did she hear that not only changed her perspective, but formed mine?

A doctor once looked her right in her eyes and said, “Ronnie may be somewhat physically disabled his entire life, but if you continue doing what you are doing [Keeping me in a bubble], he'll be mentally disabled as well.”

A 50 something-year-old female CF patient who we happened to get on the same elevator with us on our way to clinic asked my mom where we were going. When my mom responded “cystic fibrosis clinic” this woman told my mom that she had CF as well. She went on to say that she was an avid swimmer and she was convinced that physical activity and exercise was the reason she was still alive. This was at a time when that's scary number that gets thrown around today was in the late teens. So what was her secret?

She said, “You have to be willing to grab the bull by the horns and work harder than this disease each and every day.”

There is no doubt in my mind that these two exchanges shaped the way that my mom not only looked at CF, but the way she then looked at my life. As a result she raised me to be a man of personal responsibility, and empowered me with the belief that what I did each and every day made a difference in my health and subsequently my life. I fully believe it was those two statements that shaped me into the man I am today.

Have I always been perfect? Have I woken up each and every day and wrestled that bull to the ground? No! In fact, I spent a good 8 years doing just the bare minimum to get by. A good 8 years of doing just enough to feel that I was doing “all that I could” in my fight against CF. The doctors wanted me to do two treatments a day, so that's what I did… 50% of the time. The doctors wanted me to continue exercising, so that's what I did… 2 to 3 days a week. So was I giving it my all? Absolutely not! I was doing just enough. I was doing enough so that I could tell them at my clinic that I was doing my treatments. I was doing enough so that I felt I was getting close to the activity level I maintained in high school. I was doing just enough to allow myself to feel that my "just enough" was all that I could give.

I was getting older and that's just what adult CFers do, we get worse. I was told my whole life that CF was a progressive disease, so it made sense to me. It made sense that my lung function declined year-over-year. It made sense that I was spending 90 days the year in the hospital. I saw many of my older CF friends having the same experience, and so I accepted it. I accepted the progression. I accepted getting sicker.

Well, it took me 8 years to realize that my “just enough” and doing “all that I could” wasn't enough. It took me 8 years of seeing my lung function decline, my hospital days increase, and my health worsening to realize that I wasn't doing “all that I could”, I was doing “all that I wanted”. And while my CF was progressing I was all too content to blame my disease. Never once in those 8 years do I remember looking in the mirror and asking myself, “what are you contributing to this decline?” No, I was too quick to throw all of the blame on this progressive disease.

That all changed in March of 2009. I had just spent 52 days in the hospital with 48 of those being with assisted breathing and 5 of those being in the ICU. I saw my lung function decline into the 20s. I was the sickest I had ever been. I never knew the pain that came with nurses coming to the ICU to say goodbye and that they loved me. I'll never forget the feeling of friends saying, “you fought so hard”  in a way that indicated my fight was over. Part of that feeling was guilt because I knew I didn't fight as hard as I could have. I knew that I made choices that were contradictory to living a healthy life. And I knew that if I did get through this, I was going to have to be the fighter that everybody thought I was.

After 10 days of intensive care I managed to blow a 31%. After 52 days in the hospital I blew a 50%. That was the first time I ever looked in the mirror and asked, “Ronnie, what in the heck are you doing?”. This was the first time that I put all the pieces of my life together. This was the first time that I reflected back on the previous 8 years and was able to identify all that I did wrong and right. I was totally comfortable with that. I was comfortable with taking ownership of the actions that I chose and not the actions that CF chose for me.

When I left the hospital that day, a doctor told me to be happy with my 50% lung function. He was surprised that I had recovered to that point and to not be frustrated if they didn't increase anymore. I told him I would get it up to 75%. He told me that I hadn't blown that number since 2003. I told him that I had been doing everything wrong since 2001. He said "good luck". I said "luck has nothing to do with it".

It took some time and it took some incredibly hard work. It took some sacrifice, some tears, some pain, some vomit, some frustration, some sweat and some Mandi, but I did it.

In April of 2011, a full two-years later, I blew a 75%.

This was the first time I realized that CF was only going to be as progressive as I allowed it to be.

And since April of 2011 that's been my mantra.

When I'm running and every fiber in my body tells me to stop I say, “CF is only as progressive as I allow it to be."

When I'm having a great time with friends but I have to duck away for a treatment I say, “CF is only as progressive as I allow it to be."

When I'm away from my best friend and all I want to do is hold her in my arms I say, “CF is only as progressive as I allow it to be."

And when I can only get kisses from my daughter via WebCam I say, “CF is only as progressive as I allow it to be."

So that's my story. That's how I formed my mantra. It may not work for everyone, but it works for me.

It may not even be true, but my truth is in my experience.

So until I know any different, “CF is only as progressive as I allow it to be."