Jesus Loves Your Body!

Even when it's funny, frustrating, or failing

This photo cracks me up for several reasons. One: were my parents so besotted with their firstborn that they chose to purchase (or at least keep) this picture of me that looks—let’s be honest—ridiculous? Two: full disclosure—this still accurately reflects how I feel most days.

I was born into a funny, party-trick body. My mother noticed when I was just a few days old that the right side of my body was larger than the left. She had worked in neonatal research at Southwestern University Hospital in Dallas and knew doctors there, so she immediately called them. When I was a few months old, they arranged for me to come in for an array of scans and tests. The good news was that no internal organs appeared to be affected, only bones and muscles. The bad news was that not only was the right side larger, but it was also growing faster, which meant the discrepancy would become more and more severe. Later, this kind of growth pattern would be associated with several syndromes (none of which I had), but the best description available was idiopathic hemihypertrophy, now sometimes called hemihyperplasia.

From the age of about 2 years old, my family made semi-annual treks to the nearest Shriners Hospital for Crippled Children. We lived in southwestern Virginia, and the hospital was in Greenville, South Carolina. The local Shriners would charter a bus for all the crippled children and their exhausted families to transport us back and forth for our appointment times. We would meet in a parking lot before dawn, and my memory of the Shriners is of paunchy, middle-aged men wearing funny hats and trying very hard to be merry for the crippled children and their exhausted families. They would liberally dispense candy and occasionally wander up and down the aisles of the bus to see if you were comfortable or needed anything or wanted to hear corny dad jokes.

Once we got to the hospital, all the crippled children and their exhausted families filled a large waiting room while we waited to be called for our appointment. Or, more precisely, until we were called back into a smaller waiting room, which I bitterly noticed had no toys and very uncomfortable chairs lined against a wall facing a series of exam rooms with curtains made of fabric that looked like it had children’s drawings on it. And there we sat, the crippled children and their exhausted families, until a curtain would open and a doctor would call your name and you were finally into the inner sanctum of the appointment.

My appointments usually involved three things: measuring the change in the growth in my limbs, discussing when surgery would need to be scheduled, and ordering my new ortho-shoes to balance out my leg length. Sometimes I would be taken for X-rays of my limbs. I can’t say for certain, but in my memory these appointments rarely lasted longer than 10 minutes.

While we waited for my shoes to be made, we would go eat in the hospital canteen, where the lady would ask in a booming voice dripping with Southern molasses: “Whatch’ y’all gon’ have?” My sister and I would order grilled cheese and then always be disappointed that it had mayonnaise in it, as if we had hoped that magically in the intervening six months since we had ordered grilled cheese the culinary artisans of the basement hospital canteen would have realized the flaw in their recipe and rectified the making of this wonderful sandwich into a perfect balance of buttered, toasted bread and melting cheese. I seem to recall that sometimes we had root beer floats that helped wash away the disappointment of the sandwich.

Finally I would get my incredibly ugly ortho-shoes, all the appointments from southwestern Virginia would be finished for the day, and all the crippled children and their exhausted families would pile back into our charter bus to arrive home after dark.

A Compensation for the Crippled Children

When you are a young child and you have been making this journey since before you can remember, nothing about this experience seems strange or unusual. Of course, I knew that not everyone had to make day-long excursions to the hospital every few months. And also not everyone got invited to the annual Christmas party that the Shriners hosted for the crippled children and their exhausted families, at which we always got a large fruit basket and some unmemorable entertainment and—truly, my favorite thing of all that made the entire experience of being a Shriners’ crippled child worth it—a stuffed animal toy. I have Sammy the Siamese cat to this day. I must have gotten him when I was about 5 or 6 years old, and he has moved with me at least 13 times and still sits in my office. (We are allergic to other cats, but not Sammy!)

By the time I was around 8 years old, the doctors were talking more seriously about surgery. The plan was to remove growth plates from my rapidly enlarging limbs. The question was when and how many. They decided to operate sooner rather than later and take fewer plates. When I was 9, I was admitted to the Shriners Hospital; they decided not to operate on my right arm and only remove a growth plate from my right leg. We all hoped that they had the timing right so that by the time I stopped growing, my legs would be within the standard deviation for the same length.

And they nailed it! Rather than have a right leg that is six inches longer than my left, which was the projection without surgery, my leg length discrepancy is within normal limits. (Feel free to support those appeals for donations to the Shriners Hospitals, North American friends! The work they do for children and their families is incredible. And if you live near one, there are multiple ways to volunteer.)

My right arm, however, continued to grow longer and longer, proportional for a height that had been surgically altered. My freakishly long arm, as I affectionately describe it, has come in handy for reaching things from very high shelves that most people my height can’t reach. It’s a fun party trick to show off, and I once won a game of “Two Lies and a Truth” with it. It is less convenient for finding long-sleeved shirts that fit, and my son informed me that it looked weird at the gym when I would have a barbell overhead because it would be slanted. (Full points for honesty. Maybe some points deducted for tact … ) I generally find my hemihypertrophic body more amusing than annoying, with all its funny asymmetries and imbalances and quirks and surgery scars. I don’t love the scoliosis or the fact that I can’t wear certain types of shoes because my feet are different sizes, but I’ll take all that with gratitude that my leg length was fixed and I didn’t have to navigate through life with a six-inch limp.

Why Bother About a Body?

Why this story about my funny, party-trick body? In part, because I’ve been thinking about bodies—our material, unruly existence of life in this world—for many years. And recently, of course, I’ve had even more reason to be aware of life in a body that surprises you. I’ve never known life without hemihypertrophy; it’s always been my default setting, if you will. But cancer felt like an absurdist joke and hideous surprise. I have found the overgrowth of cancer cells, with their relentless dividing and malicious spreading, to be far less charming and zero percent amusing. Having a really long arm can be wielded like a superpower; having cancer in your bones is just lame (literally).

And I believe that Jesus loves our bodies—our messy, unruly, uncooperative, diseased and dis-eased bodies. Our bodies are not beloved because of their aesthetic or utilitarian value, though they may be beautiful and useful. They are beloved because God has created them, cares for them, and will one day perfect them. It’s one thing to feel appreciation for the gift of your body when you feel healthy and strong and gorgeous. It’s another to feel like your body is a gift when it is sick and tired and frail. How can a body with cancer be a beloved gift? How can we possibly feel grateful for an embodied existence that feels more like struggle than celebration? I think these are questions that matter, because—if you’ll forgive the play on words—matter matters. It matters to God, and it should matter to us.

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Treatment Updates

Speaking of unruly and uncooperative bodies, my white blood count has continued to plateau below the acceptable range for me to resume treatment. We have tried again today and I will find out tomorrow if my numbers are high enough. Please pray that finally I can get back to the targeted therapy.

My rehab has continued to go well, and we can see some progress which is encouraging. Not only are my mobility and stability improving, but just today I realized that I had more sensation in my toes for the first time since June. I know many of you prayed for my feet—it has taken longer than I thought, but they have been making a remarkable recovery.

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And Finally …

Berkeley would like to suggest that this is the only appropriate context for discussing cats.

Photo courtesy of Sherry Williamson