Thursday, April 8, 2010

Everyone Has a Story

Do you know who Charlie Villaneuva is? Unless you are a hard-core professional basketball fan (especially a fan from the midwest) or you attended the University of Connecticut, he’s not necessarily a household name. Unless your household includes a person with Alopecia Areata, like ours. Charlie is the spokesperson for the National Alopecia Areata Foundation. He’s also a power forward for the Detroit Pistons and Tuesday night we got to watch him score 25 points in Detroit’s pounding of the Philadelphia 76ers. Before he did that though, he stopped by our seats to sign my son’s basketball and pose for a picture with him.
It’s taken us awhile to realize that having the autoimmune disease, Alopecia Areata, does come with some benefits, like meeting Charlie. For those of you who don’t know, here’s a quick recap. My 7 year-old son, Ian, has Alopecia Areata. Alopecia is a non-contagious autoimmune disorder that causes the body’s white blood cells to attack the hair follicles. This causes the hair to fall out. It’s like being allergic to your hair. Ian has no hair anywhere on his body (except a few renegade eye lashes on one eye). He developed this disease when he was 4 years old. Prior to that Ian had a full head of red, curly hair. The kind old ladies like to touch in the grocery store and of which young women always say, “I wish that came in a bottle”. Ian handled losing his hair much better than his mother did.

After extensive research and visits with doctors at both Hopkins and Hershey medical centers, all we learned was that not much is known about this disease. Alopecia Areata affects about 4-5 million Americans (and similar percentages of people in other countries). It does not discriminate for age, race, ethnic background, economic situation, or gender – anybody can get it. No one else in our family histories has ever had it. The most common cases involve only small amounts of hair loss (about the size of a quarter) which normally grows back, but only a fraction of those develop Alopecia Areata Universalis which is loss of all the body’s hair. So you could say that my son is very special (and you’d be right). There are some theories, but no one knows for sure what causes Alopecia. It’s been around since biblical times, but the research is pretty thin. Basically, no one knows what causes it and no one can cure it. Faced with that knowledge, I did what any good mother would do. I set out to fix him myself.

That’s what led to this organic life. And while Ian still has no hair (he says he wouldn’t want any because then he’d have to wash it and brush it and he might get nose hair “which would be gross”), our whole family is much healthier both physically and emotionally. If it weren’t for Ian’s Alopecia, I might have never discovered how good life feels without chemicals and additives. I might never have learned that when you eat real food from grass fed animals, vegetables grown the way nature intended, and food created by your own hands, you think more clearly, feel lighter, have more energy, and fewer mood swings. My oldest son suffered from frequent asthma attacks until we got rid of all the chemical cleaners in our house. My husband’s cholesterol was headed through the roof until we ditched the processed food and started adding flax seed, whole grains, and grass-fed dairy products to his diet. If Ian hadn’t lost his hair, I might never have known the joy of chicken-keeping (and there is joy in it, as well as delicious fresh eggs, natural pest control, and rich fertilizer).

Perhaps the biggest lesson comes from having suffered through the pain of adjusting to living with a mysterious disease over which you have no control and no explanation. That’s when I learned that everyone has a story. Everyone has something that they must overcome. No one gets off scott free in this life. It’s very tempting to look at someone’s life and think that they’ve got it so good, there’s no reason for them to be grumpy or difficult, until you’ve spent a year living with your pain exposed and your emotions fresh. Then you realize you don’t have any clue what’s going on in other people’s lives and hearts. Alopecia Areata helped me to re-prioritize my life. Early in this adventure my mother-in-law said to me, “If that’s the worst thing that happens to him, be grateful.” At the time I wanted to smack her, but now I completely believe that with all my heart. Everyone has a handicap, a weakness, no one’s perfect, and if Ian’s weakness is that he simply doesn’t have any hair then Hallelujah.

Now when someone looks at me funny or is rude or disrespectful or even downright mean, I let it go. I remember that I don’t know what’s going on inside them. I don’t know what kind of pain they are facing. I don’t know why they are hurt or fearful or sad. So I can forgive their moodiness, their ill temper, their criticism. Instead of being hurt or angry, I simply wonder how tangled their life is and let it go. I can’t tell you the freedom this had given my own life.

When Ian was first diagnosed and we went out in public, people always assumed he was a chemo patient. They were compassionate and kind and gentle with him. I remember watching a complete stranger carefully spotting him as he climbed through the tunnels at Port Discovery, making sure he didn’t hurt himself. A security guard at Hershey Park gave Ian a giant Hershey Bar and the ladies behind the fudge counter at the farm market always offered him a free piece of fudge. Once a waiter comped our entire check at Pizza Hut. In the beginning all I could do was nod thanks because every one of these encounters reduced me to tears. Now that I can talk about Ian’s condition more comfortably, I still don’t correct the kind strangers. Another parent of a child with Alopecia said, “Don’t correct them. They feel good because they did something good for someone. Let them have that.” So for the most part I don’t say anything. I also don’t say anything because my son doesn’t realize why these people are so kind to him. He just thinks people are nice. I want him to believe that as long as possible.

Imagine how kind our world would be if everyone treated everyone else like they were terminally ill, injured, or in pain. No one would yell at anyone. No one would curse the slow driver in front of them or snap at the grumpy cashier or be rude to their waiter. We would go out of our way to help other people and be generous with our money, our time, and our words. Having a child with Alopecia has been a great blessing. It’s taken me some time to reach that conclusion. But I know our lives are better and Ian’s life is better because of this disease.

I wasn’t sure what I wanted to write about when I started this post. I thought maybe I’d talk about why I started the organic life and discuss the fact that we can’t force anyone else to embrace an organic life no matter how good it might be for them. But I guess I had something more important to say. Live gently among your neighbors – give them the benefit of the doubt and your kindness, nothing more and nothing less.


  1. That's why I heart you. We all need this reminder at times. Ian is a spectacular little guy and you are one very special lady!

  2. This is a great post. Thank you.

  3. Thanks for reading. Blessings to you.

  4. Hi there—I am RS's friend from Germany. I loved reading this! Thanks so much for sharing your experience with us. Best wishes from Cologne . . . RMG

  5. WOw - Germany! Very cool that my blog made it over there. We're planning to visit Germany in a few years. Can't wait to see it. THanks for reading.