Friday, May 3, 2013

What If Everyone Had Cancer?

When my youngest son was four years old he lost all his hair to an autoimmune disorder called Alopecia Areata. Over the course of a month all of his beautiful red curls fell out, then his eye lashes and eye brows. My heart broke on a daily basis. But he was four, and hair to a four-year-old is not necessarily a concern. When a classmate at the snack table in preschool asked if he’d gotten a haircut, he looked confused until another classmate spoke up and said, “Nah, Ian’s hair fell out.” Everyone went back to their juice and animal crackers unalarmed.

As a parent you begin imagining your child’s life when you first see those two pink lines, perhaps even earlier if you’re a true romantic. I couldn’t imagine what elementary school would be like for my newly bald child. Or maybe the problem was that I could imagine it – teasing, bullying, heartbreak. For a few months we stayed in, but then it became obvious that the hair would not be re-growing so we resumed our life with our three kids, but I hovered close to my youngest ready to defend him at the slightest provocation.

While my husband was traveling, the kids and I ventured out for dinner one night at the local pizza shop. We snuggled into a booth and I tried not to notice the obvious stares of the other patrons. The kids were oblivious to anything odd and happy to be out to dinner for the first time since Ian’s diagnosis. When it was time to pay, I left the kids in the booth and went to the cashier. She told me not to worry, our check was already paid. I didn’t understand, but she assured me another patron had taken care of our check and wished my little boy well. I stumbled back to collect my children and made for the exit. Driving home it finally dawned on me that the kind person who paid our check must have thought Ian had cancer.

That night I called another parent in a distant state who had reached out to me on a message board for parents of children with alopecia. I related our story and told her how badly I felt that this person thought my son had cancer and paid our bill. I wanted to find him or her and explain that it wasn’t necessary because Ian is not dying. To my surprise, the parent on the other end of the line asked, “Why would you do that?” I told her I felt badly. To which she said, “If you corrected the kind stranger, he’d feel badly. If you let him think he did this nice thing for this kid with cancer, then he feels good.”

The next week Ian and I traveled to Hershey Pennsylvania for a doctor’s appointment. After the doctor visit, we stopped at the Hershey Chocolate World. We had brought our lunch and after the tour we made our way through the crowded lobby to a bench to eat. As we passed by a security guard he called out, “Hey young man, come here. I need to see what’s in that lunch box.” Ian and I were both alarmed and handed over the lunch box. The guard carried it over to his desk, popped open the lunch box and said, “Just as I thought, you’re missing something!” At this point I saw the twinkle in his eye and knew we weren’t in real trouble. He opened a drawer and pulled out a giant one pound Hershey bar. Very seriously, he handed it to Ian. “I guess it wouldn’t fit in your lunch box anyway.” He smiled and told us to have a nice day. Ian was over the moon. He couldn’t wait to go home to tell his siblings that the policeman gave him a giant chocolate bar! I held my tears until the drive home and as Ian napped, I quietly wept.

More experiences just like these followed. Strangers would help Ian on the monkey bars at the play ground. The women at the fudge stand offered him free pieces of fudge. We camped at the beach that summer and spent an evening at the boardwalk. Ian loved skeeball and we blew at least twenty dollars in quarters trying to win a giant stuffed bear. There was a young couple at the lane next to us who were obviously very much in love. The handsome young man quickly won the giant bear and presented it to his girlfriend. They began to walk away, but then turned and approached me. They asked if it would be okay to give their bear to my son. All I could do is nod because the tears were already rolling down my cheeks. An hour later Ian and his sister Addie were in line to ride the bumper cars. My older son and his friend who tags along on most of our camping trips, waited less than patiently on the other side of the rope for the two younger kids to get their turn on the ride so we could go get dinner. When Ian reached the front of the line, the attendant pulled the rope across and told him they’d be next. I watched as this overly tattooed young man puffed on his cigarette, and I worried about the second hand smoke my children were inhaling. I shuddered at the giant ring in his ear which had stretched the lobe to inhuman proportions.

When the bumper car track was cleared the young man asked my older son and his friend if they wanted to ride too. They told him they didn’t have tickets, but he said not to worry and lifted the rope for them to duck under. Then he opened the gate and let my four kids on to the track before pulling the rope back across and telling the waiting customers they’d be on the next ride. He proceeded to allow my kids to have the bumper car track all to themselves. They shouted and laughed. When Ian got stuck the tattooed attendant jumped up from his chair, sprinted across the track and leapt on to the back of Ian’s car. He helped guide him back into the fray and aimed squarely for his brother’s car. I was awestruck. And humbled.

Most days Ian chooses to wear a skull cap to protect his bare head from the stares and the sun. But whenever he goes out without it, we experience an amazing grace. Again and again, I am blown away by the kindness of strangers. If they ask, I assure them that Ian is healthy but has Alopecia Areata. It’s an opportunity to educate people about Alopecia. But if they don’t ask, we accept their kindness and figure there should be some perks for living with this unpredictable and untreatable condition.

Ian is in fifth grade now. My earlier fears have not been realized. Most of the students and staff know he has alopecia and don’t notice his baldness anymore. It’s just like any other physical feature such as ears that stick out or curly red hair. It’s just who he is. People do comment to me frequently about how friendly and chatty Ian is. He loves to talk to people. He’s cheerful and assumes the best about the people he meets. I have to wonder if this has anything to do with the fact that he is so often treated to the good side of people. When he was four he had no idea why a complete stranger would help him on the playground or give him a candy bar. The only logical conclusion he could come to is that people are nice. And so that’s what he expects of people.

I’ve often thought of these strangers who reach out to my son. After one experience, a young friend who was with us asked, “Why did Ian get the treat?” I told him that the person thought Ian had cancer because of his bald head. To which he replied, “But he doesn’t, so that’s not fair.” He has a point. Watching the kindness extended to my bald child has made me wish that we could all treat each other like cancer victims. I am blessedly ignorant of the real experience of cancer, but I think it is a shame that we require something so awful to happen to motivate us to kindness. I can’t help but dream of a world where we all treated each other with such a reverent kindness. Imagine a world like that. Imagine if every kid grew up like my son – being handled gently and respectfully, offered generosity and grace on a daily basis. Imagine if we all treated each other like cancer victims.

Note: For more information about Alopecia Areata check out The Children’s Alopecia Project(CAP) or the National Alopecia Areata Foundation.

1 comment: