Spirit Medicine

The Spirit of the CF Body

By Isabel Stenzel Byrnes

My inspiration for this Spirit Medicine article comes from a favorite episode of “King of the Hill”. Peggy Hill’s annoying Laotian neighbor saw Peggy’s shoes and exclaimed, “Oh, my, Peggy Hill, what big feet you have, like boat!” Peggy replied, matter-of-factly, “Well, that’s just the way God made me.”

I really admire Peggy’s acceptance of her body. As someone living with cystic fibrosis (CF), I’ve spent a good amount of time fighting my body. I don’t mean fighting, literally. I mean fighting my disease, with treatments and medications. I mean a harder fight; that is, lamenting, even hating, my body. Though I have had good days and bad days, there have been many times where I wished I was born with a different body, not this lemon that required constant tune-ups.

Facing my feelings towards my body is part of healing my spirit. I believe negativity towards my body affects my spirit. To have a healthy spirit, I want to come to terms with my body, whether it is healthy or not. I am trying to make friends with my body. I’ve come a long way, but acceptance is a gradual process.

I confess my body-dread only with the trust that there are others out there who share similar sentiments. Many people with cystic fibrosis are plagued with their fair share of physical harassment. Many of my CF friends have said, “If it’s not one thing, it’s another.” If the lungs are good, there are intestinal problems. If the stomach is good, the sinuses are bad. There’s always something going on! This can be the case even after a lung transplant.

I recognized that everyone – healthy or not – is burdened by some aspect of the body. Earlier this year, I went to a Broadway show with my CF friend, Jerry Cahill. We saw the musical “Spring Awakening”, and one song struck a chord with me: “The B**ch of Living”. It was about the torment suffered by teenage boys because of their relentless sexual desires. While I found the song comical, it proved to me that everyone – even healthy, vibrant kids – has something to gripe about when it comes to our physical bodies.

Still, though, CF is particularly insidious. CF affects my lungs, gut, belly, nose, liver, cheeks, hearing, teeth, taste, smell, hair, muscles, bones, sweat, weight and hence chest size, voice, nails, libido…the list goes on.

When I first started dating my husband, Andrew, we asked each other, “What part of your body is the most attractive?” Andrew answered that he liked his eyes, because of their unusual blue-gray color. I agreed, and told him something cheesy, like how eyes are the windows of the soul. Then it was my turn to answer the question. I thought long and hard about the question, and finally thought of the only part of my body that wasn’t flawed by CF: my skin. So, I told him I liked my skin. It was smooth, soft and tan. Andrew liked my skin, too.

Today, though, I hate my hands. For decades they were cursed with embarrassing clubbed fingers. Now, I’ve been blessed to be transplanted. I can breathe again. My clubbed fingers went away. However, after living four years with immune-suppression, my hands are covered with an unwanted hitchhiker: warts. Each month I live, I get a new wart. I guess I really shouldn’t complain! But, “There’s always something,” and, recently, my warts were burned off, creating stingy, oozing blisters that look so horrible that I have yet to show my hands to my husband or friends. Once again, CF has indirectly affected my once-attractive skin.

Okay, I’m human, so I allow myself to wallow and whine for a period of time. Then, there’s a time to shift to a healthier place of being. I invite myself to look at the positive parts of my body. This is my first step to body acceptance.

First, I celebrate what works in my body. As a transplant recipient, I am very blessed with good health. It’s a lot easier to love my body now that it works! I mourn the fact that this body nearly ended my life a few years ago, but I celebrate being healthy enough to hike, run and swim now. But whether I have healthy or sick lungs, other parts of my body work just fine. My eyes allow me to gaze at gorgeous landscape. My vocal cords allow me to communicate; my ears allow me to enjoy beautiful music. Even my ugly hands allow me to touch Andrew and type words for this essay.

I also look at the many good things that come from my CF body. Before my transplant, my strong chest muscles, even my barrel chest, allowed me to cough up the poison that was killing me. I had an awesome six pack of abs. My arms grew muscular pounding on my sister’s chest. I was spared an annoying period for a long time. And still now, my sickly pancreas makes me crave delicious food and allows me to eat more than a 200 pound man. My robust colon can handle a whole lot of you-know-what.

Another positive aspect of my high maintenance body is that it gives me the opportunity to pay attention to the dialogue between my body and spirit. Each time I get sick, my body kicks up the fight, and my body’s spirit feels stronger. I give in to the demands of my body by offering rest, medicine and nourishment. The body responds.

I am also grateful for what my body teaches me. I know my body won’t last forever, so I have to appreciate every day. It doesn’t matter what clothes my body wears, how I paint my face or decorate my body, because I am not my body. My body just allows me to fulfill deeper desires in life. I want to love, to serve others, to enjoy nature, to see the world, to give affection to others, to wonder about God; and to do all these things, I must have a body. And this is the one I have.

A major moment of bodily acceptance was when I saw my CF lungs in the pathology lab after my transplant. I was filled with awe, respect and even affection for the grotesque lungs that sustained me for 32 years. I said goodbye with a reverent, “You done good.”

Reading the pathology report that said, “No evidence of functional lung tissue remaining,” made me wonder how I had the strength to survive with CF for as long as I did. My circumstance is just one example of the strength of the CF body in general. I believe people with CF have inherited a tremendously resilient physical nature. I’ve met some pretty hardy people with CF.

Our physical challenges fuel a passionate drive to truly live. One friend with CF climbed Mt. Kilimanjaro and scuba dives. Another friend runs marathons. One CF teen swims competitively in “Laps for CF”. Talk about resilience! I am in complete awe of my CF friends whose sick bodies have made remarkable comebacks. One friend had a lobe removed due to hemoptysis, only to backpack in Nepal a year later. Another woman I know gave birth to a baby three months before receiving a bilateral lung transplant. Our CF bodies are amazing! Another friend survived a bilateral lung and kidney transplant. Now that’s tough.

I must acknowledge that some people with CF are not so lucky, and face unending physical battles. Just eating a meal or walking a block is a struggle. It is completely justified to lament the horrible suffering that CF causes. When I had end-stage CF, I didn’t think my body was amazing. It was just awful. But looking back, I think my body deserves some recognition for its stubborn persistence to keep going. The same could be said for others with advanced CF. I’ve known some people with CF who have worked full-time for years with lung capacities in the teens. After my sister’s second lung transplant, a nurse complimented, “You just don’t die!” (At least for now.) Likewise, one friend was placed on a ventilator, taken off the ventilator, and went back on and off before being transplanted. What a fight to survive! No matter how sick someone is with CF, there is still more working in our bodies than not; or else we’d be dead. If we’re still breathing, there is life. Many of you reading this probably have your own survival stories to share.

Sometimes, no matter how resilient our bodies are or how strong our drive to survive, our bodies fail us. Our final relief from bodily suffering comes with death. This is the ultimate cruelty of our disease; and a forced acceptance of the limitations of the body. I do not believe death is a weakness of the body, but a reminder of our finiteness and powerlessness. When I reached the end of my CF lung disease, it was a rude awakening that I was not in control and my body could handle no more.

For a very privileged few, at the end of our CF lives, our diseased lungs are replaced with healthy lungs, redeeming our suffering for a chance at health. This July, I will be competing in the US Transplant Games, along with other CF adults like Andrea Eisenman and Paul Feld. We will witness another wondrous miracle of the body: that a dead person’s lungs can breathe for us. Again, I’m in awe of the body! Of course, before I compete, I will have to ask, “How are my sugars? How’s my hydration? Sunscreen?” I’m likely to feel frustrated that my body is so high maintenance. Something may come up, limiting my goals, and I’ll just have to deal with my body where it is — and I know that won’t be easy. But, hopefully, when I’m competing, totally breathless and every ounce of my muscle burning, I will feel tremendous gratitude for my body.

By recognizing the strengths of the CF body, I’m on the right path toward body acceptance. Earlier in this essay, I shared the goal of becoming friends with my body. A true friend listens, supports and offers encouraging words in both good and bad times. That’s how I am determined to act toward my body. As its friend, I start by having conversations with my body, I get to know it and pay attention to its cues. I see its strengths, I forgive its weaknesses, and I am flexible with whatever comes up. It is ok to be mad at it, or to give it a hug. We’ve come a long way, my body and I. I don’t know where this body will take me in the future, but I am in store for an amazing friendship.

Isabel Stenzel Byrnes has CF. She is a co-author of “The Power of Two: A Twin Triumph over Cystic Fibrosis”. She and her husband, Andrew, live in Redwood City, CA. She invites spiritual writers to share their ‘spirit medicine’. Her email is: isabel@usacfa.org