Don't Call Me the C-Word

If someone had asked me 10 years ago to write a blog post having anything to do with Cystic Fibrosis, I would have sworn out loud, hung up the phone, and burned any written correspondence in the sink.

Here is me doing just that in 2005, after receiving a package full of probably useful information after an introductory visit to the Stanford CF Clinic, when I was attending grad school there.

Now, I would argue that such anger and resistance doesn’t serve a person well, at least not for very long, and I’m glad to do what I can to touch move and inspire others both with CF and without, in whatever way I can, and in whatever format is available. So, here I am, writing a guest post for CFLF. Who would have guessed?

I would also admit that my attitude toward the medical community changed entirely when I was up for transplant.  It was no longer useful to be non-compliant, and it was probably a bad idea to risk being outside of the clinic so long.  Not only that, I learned that the people I resisted were only trying to help.  Even though I’d long railed against that group of people, when I really needed help, when my lung capacity was 13% and I was unlikely to make it through some nights, those people quite generously were still there for me.  They made the calls, they had the talks, they did the work, they wiped my butt, for crying out loud, and through the grace of that, whatever God you may love, and my own grit and hard work, I was flat-out saved.  I am grateful, blessed, and most of all, no longer angry.

Still, I feel like it may be useful, now that there’s some distance from that fire, to explore and report on WHY I was so fiery.  First of all, I want to say that there’s nothing wrong or abnormal about being angry over having any disease.  It’s a raw deal, and it’s ok to be upset.  And when you’re young, and you’re upset, frustrated and scared, it’s only natural to not know who to be mad at.  We ALL experience that, disease or not, and we ALL make the mistake of pointing our frustration and rage at other people.  If you don’t think so, check out politics for a bit.

Of course, like I said, it doesn’t do to hold onto that too long, and understanding it helps it go away.  So, what was so frustrating to me that I would burn pamphlets and leave the clinic system for THIRTEEN years?

Identity.  Everyone has limitations, everyone has something that is “different”, and everyone feels alone or unique sometimes.  It’s just part of the human condition, that illusion of separateness.  However, when you feel like you’ve BECOME your limitation or your difference, that’s too much, because it’s simply untrue.  I am not a “CFer”, I am Aaron J. Trumm.  Your father is not “a Cancer patient”, he’s dad.  It’s the same with any stigma.  You are not “a fat person”, you’re a person.  You are not in a “Gay marriage”, you are married.  Even with race this holds.  Jesse Owens was not “a Black athlete”, he was an athlete.  In fact, it’s even an illusion to call any of these things “limitations” or “differences”.

For this reason, I long eschewed the entire thing of being involved with clinics or the CF community.  I threw the baby out with the bath water, admittedly, but now that I’ve decided to let go of the anger and let that community in, the one thing I hold on to is that tenet: I am not a disease.

So now I say to people “don’t call me ‘CFer’ ”.  I’ve decided that’s a derogatory term, like the N-word or the F-Word or any other of these terms.  My story is not the story of having CF.  My story is like any other story.  I’ve lived, I’ve loved, I’ve fought, I’ve played, I’ve done some amazing things and some bad things.  I’ve made mistakes and had some great victories, and all of these things are completely separate and outside of any medical problems I may have had.  When you write your memoires, will you dedicate every chapter to that goiter you had in 1984?  Will you call your book The Goiter?  I hope not.

That doesn’t mean I’m still mad at anybody.  I don’t even know if I’m still mad about having CF.  I’m pretty lucky, as it turns out.  I have new lungs, a beautiful family and girlfriend, and better access to healthcare than anyone I know, BECAUSE I have CF.  I feel blessed, centered and grateful, and this empowers me even more to stick up for my actual identity.

I am Aaron J. Trumm, a mediocre athlete, a shoddy business person, an improving boyfriend, a family man, and a performer.  I have less talent for ice hockey and more talent for performance than normal, and I’m lucky enough to know that and still do both.  All of these things would probably still be true if I didn’t happen to have Cystic Fibrosis and someone else’s lungs.  I probably wouldn’t have the perspective I have without CF, so I can even be grateful for that experience, and without the immense trial of lung transplant surgery, I’d still be deathly afraid of needles and coughing all the time, so I’m certainly grateful for that.

This is what I’m starting to realize is balance, or at least the beginning of it, and it starts with burning any notion of anything defining me other than my heart.

Maya Angelou said “You may not control all the events that happen to you, but you can decide not to be reduced by them.”

Bruce Lee said “To hell with circumstances; I create opportunities.”

In my last CFLF Grant application I said “With CF, life depends on overcoming the stigma in your own head that says you can’t be active, healthy and successful. There’s an opportunity there that people don’t always have.”

That’s the opportunity to choose not to be “reduced” or “defined” by circumstances.  In reality, we all have that opportunity, because we all have something that tells us not to be us and tries to define and become us.  We have our race, our weight, our medical condition, our talents, our foibles, our family, our country, even the very fact of being human all conspiring to force us somewhere.  It’s frustrating, and if I look, I  see that even that big strapping fella without CF I’ve always been so jealous of is frustrated about something and trying to figure himself out, and sometimes even wishes he could be like me!

That all seems hard, but it’s actually the beautiful opportunity we all have, to learn to choose, and say “THIS is me, not that”, and eventually just “This is me”.  I find it incredible and invigorating that we all have this power and this grace.  “I am” is ours to say, and it works.

Muhammed Ali was fond of saying “I am the greatest”, and that may sound arrogant, but I think he wasn’t telling us.  I think he was telling himself.  He told himself this over and over and it became the truth.  In the hospital I told myself over and over “I am strong I am happy I am healthy I am free”.  It wasn’t true when I started saying it, but it sure became true.  It even became a song!

So I let go of my anger, I let go of resistance, and I realize that there are people and things and opportunities all conspiring to help me and lift me up.  I don’t need to run away from the clinics or refuse to write blog posts.  I can deal with my circumstances, and they don’t make me.  I make me. I am what I say I am.

I am an athlete.  I am a rock star.  I am a lover.  I am a writer.  I am a leader.  I am Aaron J. Trumm.  What are you?

Here's the bio that came with this post when it originally published on the CFLF.org blog:

Aaron J. Trumm is a musician, producer and writer living in Albuquerque, NM.  He was the 10th ranked slam poet in the world, the founder of NQuit Music, and has been an athlete and martial artist since age 5.  He played college ice hockey  pre-transplant and post transplant was a bronze medalist in the 100 meters at the U.S. Transplant Games.  Find him at www.aarontrumm.com or Facebook at www.facebook.com/aaronJtrumm - he always responds.