Cupcakes, Kidneys, and Tattoos

It's been a while. I've been looking for my voice. You see, since starting Roller Skating with Rickets over a year ago, I've found that it has become a vacuum of sorts - sucking up my creativity, my voice, my soul. This is something completely unintended and a little sad. As it is nearing completion, though, I'm looking forward to redirecting my attention to other creative outlets, including Plucked Dandelions.

I've been enjoying my last couple weeks of summer. Wayne and I finally ventured into Kara's Cupcakes on Main Street. What greeted us was something lovely.

This cupcake, though - a raspberry filled chocolate variety - is a reminder to me that what glitters is not always gold. It enticed me from its place underneath the class, and I found myself on the customer side of the cash register, eagerly peeling dollar bills away from the large wad of cash (I kid, I kid) I was carrying in my equally enticing pink retro wallet. All the while, a quiet voice in the back of my head whispered, "But you don't like sweets!" And indeed, I don't. I used to, until I had what I like to call "The Metolazone Incident" about three years ago, when I overdosed on a drug simply by following the instructions given to me by my doctor. But that's a story for another time. (Better yet, you can reserve a copy of Roller Skating with Rickets and read it there!)

I took a few bites of my cupcake. I could appreciate that it was a delicious cupcake, a beautiful cupcake - but quickly recognized that my money would have been better spent elsewhere. Once again, I was lured in by a pretty thing, only to find that its beauty fell flat.

I'm finding more and more that we can't let the world define beauty for us. (Really? It took me 30 years to accept that old adage, "Beauty is in the eye of the beholder?") Try as I might, I'm not the lovely cupcake under the glass. I'm a diamond in the rough, with so much ugliness (I'm not speaking about the physical here) that needs to be chipped away at and transformed. I am selfish and greedy; judgmental and proud.

I take a lot of time to ponder that selfishness this time of year. When I received a kidney transplant 12 years ago, someone else unknowingly sacrificed his life for mine. While I don't think that my taking of his kidney was selfish by any means, I do sometimes think about how I fail to appreciate others and the price they pay for my own happiness. I want to never take anything for granted.

I didn't want to celebrate August 12, but I wanted to remember it. Somewhere out there, a family grieves every year on this date for the loss of their son. They don't know me, but I hope they realize that people live on because of their decision. I decided to commemorate my donor's life with a tattoo right over my transplanted kidney.

I'm still seeking out loveliness. But unlike pretty cupcakes under glass, the kind of beauty I want to embrace is permanent, internal, selfless. The kind of beauty epitomized by my donor family.

Beautiful Flaws

The disease I have, cystinosis, causes a buildup of the amino acid cystine in all the cells of the body. This amino acid, so benign in individuals without cystinosis, crystallizes into toxic levels and destroys organs in someone like me.

My eyes are saturated with cystine crystals - even with hourly eye drops (which I confess...I don't take hourly) that are designed to dissolve them. These crystals cause eye discomfort and photophobia (light sensitivity). I am fortunate to have dark eyes that seem to be less impacted by the reflection of light. Many people with cystinosis experience such pain in bright conditions that they choose to wear sunglasses even inside, while under artificial light.

This would seem to be a nuisance. And, well, it is. The eye drops - which must stay cold and spoil after a couple weeks - feel good. Even so, who wants to put eye drops in every waking hour? It is tiresome and inconvenient.

Sometimes it takes an outsider to remind us that even our flaws - nuisances, inconveniences, tiresome though they may be - are beautiful. I went to a new ophthalmologist recently. He had never seen a patient with cystinosis.

I tried to prepare him. "My eyes are saturated with crystals," I said.

"I've read about cystinosis," he responded rather matter-of-factly. "This will be interesting."

But no medical textbook, no patient warning, no prior experience could prepare him for what he would see when he looked at my eyes with a slit lamp.

I heard him gasp.

"Oh! This...is...wow. It's beautiful!" He looked to my husband. "Have you seen this? You have to see this! It's amazing."

As I looked at my new eye doctor, grinning from ear to ear in spite of himself, I had to blink back tears. They weren't tears of resentment, or tears of anger, or the tears that sometimes come from feeling misunderstood. They were tears of joy. Because he understood perfectly - my eyes are beautiful.

My eyes are a window into my illness. They sparkle with a substance that my whole body is full of - a substance that, despite its toxic nature, forms crystals as lovely as snowflakes. I am beautiful because of what I have endured, because of the blessings I have been handed, and because my uniqueness makes me shine.

As my ophthalmologist rushed out of the room to gather his colleagues for a look at his patient's eyes, I smiled at my husband.

"Beautiful flaws," I said.

Ten Minutes Short

Lately I've been really enjoying some of the exercises in Take Ten for Writers: 1000 writing exercises to build momentum in just 10 minutes a day. This is a wonderful little book, and I don't want to discourage anyone from purchasing it themselves - it is well worth the $13. So rather than post many of the prompts here, I'll offer a couple of my favorites and suggest that you order the book for the rest.

More Or Less #7: Write about a time when you took more than you should have.

Since my kidney transplant in 1999, I have struggled with chronic, severe fluid retention. It's puzzled each and every one of my physicians in the past 12 years, because my transplanted kidney seems to be working fine. With my limited renal knowledge, I want to believe that it's not "hooked up" right and fluid just isn't making it to my bladder - but all ultrasounds, blood tests, and biopsies have indicated a perfectly functioning organ.

Working kidney or not, though, without treatment I can easily put on 10 pounds of water weight in the span of just a few days. At best, this is uncomfortable, and at worst - typically in the hot summer months - this is unbearable. So it is necessary to treat the condition as chronic and take diuretics regularly.

In the early years after my transplant, though, I also struggled with losing the weight that I put on as a result of post-transplant steroids and appetite increase. Being told by my transplant team to weigh myself twice a day to monitor my water weight gain probably didn't help my psychological health, either. The diuretics worked miracles - taking off pounds overnight - but it was never enough. To make matters worse, I did a little research and discovered that the body would adjust to regular diuretics, and the medication would have a decreased effect over time.

All this led me to believe that I needed more. The pills seemed so harmless - in all my research, I ignored the warnings of potassium depletion - and so wonderful. In an effort to combat the effects of my body adjusting to the drug, I would go days without it and then take 10-15 times my prescribed daily amount in one sitting. The immediate results were wonderful: I'd lose a ton of water weight in a few hours and my body was always too "shocked" to become immune to the diuretic effect.

Needless to say, though, this type of behavior is nothing short of drug abuse, and drug abuse has its consequences. By the time I came to my senses several years had passed, I had chronically low potassium, and at one point, had to be rushed to the hospital in an ambulance to an ER - where I encountered doctors who were amazed that I had not gone into cardiac arrest. It was this last experience that woke me up to the fact that I had, indeed, taken more than I should have.

And with that, my 10 minutes are up.