The Untouchables

I am writing this having just completed my sixth week of IV treatments for a rare blood and bone cancer. Our thoughts about who we are in this world can all come crashing down due to sickness, accidents, loss of employment, or any other events outside our control. My “I am’s” are in disarray.

I have to protect my immune system, so I don’t eat meals, play board games, or watch the Hallmark Channel with my wife and four youngest kids. Side effects of the treatments make it hard to commit to being around for normal stuff like fixing dinner, getting kids to events, or helping with homework. Not to mention I need to stay in my bubble—masks and lots of handwashing are less effective than staying in the bedroom alone.

Thankfully I have a super supportive, kind, capable, loving, and committed wife, older children who call me nearly every day, and four rambunctious younger boys who can help get my mind off things. I also have an extensive group of supportive friends, so I am in good shape and just lucky.

As I have time to think about how my “I am’s” are changing, I ponder the caste systems of India. Years ago, my wife Amy and I met a tuk-tuk driver named Kuldie on our first day in New Delhi. He became our guide for our week there. We invited Kuldie and his family to Sunday brunch at our hotel. Since he was always punctual, we wondered why Kuldie was not at the restaurant promptly at 10 am. Then we got a call from him. “Sir, they won’t let us in the gate. You need to come.” I ran down to the gate to meet Kuldie.

“Why wouldn’t they let you in?” I asked. As we walked up the steps to the hotel lobby leading to the restaurant, Kuldie talked about the caste system used in India and the untouchables, the term used to describe those seen as belonging to the lowest caste in the country. I looked him up and down. He and his kids were well-dressed. His wife was elegant. “How could they know?” I asked in confusion. “They know,” he said and shrugged.

Like Kuldie, I look happy and OK. I am not a drug addict, an alcoholic, mean, sullen, untruthful, pessimistic, unresponsive, or unfriendly. Like Kuldie, I feel lucky, blessed, and happy. I did not fully understand at that time what it might feel like to be untouchable. But now I feel lucky to have experienced this cancer, as it has made me vividly aware of what it would be like to be untouchable—to be completely isolated.

When people would ask me about my cancer, I would lie and say, “It’s not so bad,” as I did not want to become an untouchable. I did not want to be a burden; I did not want to miss my children’s everyday events. I did not want my editors at S&H to think, “Paul’s got cancer. Will we need to replace him?” I only told close family and those I work with regularly. Now that I am in remission and doing well, I think back on that journey and about what in that experience could be useful. What did I learn from it?

Earlier this year, my aunt died of cancer. She had chosen to leave it untreated, and for seven years she hid the symptoms. Aunt Tish did not want her “I am” to be “cancer.” She wanted to be the aunty who sent birthday cards with $5 in them to her nieces’ and nephews’ kids. She wanted to be remembered as vital, thoughtful, kind, and happy. She let the cancer go on. No isolation for her.

I think we need to acknowledge our mortality but also that we have a place in other people’s lives, even if it is small. All those micro-relationships or times together add up.

I wrote postcards for my sons that went into each boy’s lunch box every day. “I love you. —Dad” was written at the end of each card. I also drew a little Buddha on the card and stuck some stickers on it, along with a note about a school event or sports or something we did together that was fun.

My dad, a social worker, educator, and school principal, used to talk about “the five minutes.” He would say, “Paul, in five minutes someone can ruin everything.” He was talking about anger, where a kid hits another kid and get suspended, or when a squabble gets violent. But the five minutes can work the other way, too. What good can someone accomplish in just five minutes?

This essay is not about guilt. It is not about shoulda-coulda-woulda’s. It is about learning, about being open to change and allowing our “I am’s” to evolve in a positive way. I want my “I am’s” to be more kind, more aware of my importance in the fabric of people’s lives, more aware of a simple postcard’s effect, more aware of those five-minute opportunities in my life.

I want my kids to tell their grandchildren that their dad drew a little Buddha on a postcard and stuck it in their lunch box or “hid it in my suitcase when I went off to camp.” Then maybe saying, “I never read his cards—his handwriting was so awful—but it felt good to get them.” These small acts could have a bigger impact than we realize.

I send the postcards because I want to connect with my kids. I want to feel a part of their lives even when I am in my bubble. I want to be available in peoples’ lives, to be touchable. I want my “I am’s” to be about connection.