The Untouchables

I am writing this having just completed my 6th 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 together 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 where masks and lots of hand washing are less effective than staying in the bedroom alone. Thankfully I have a super supportive, kind, capable, loving and committed wife, older children that call me nearly every day, and four rambunctious boys that 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.

Now 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 Tut Tut driver named Kuldie on our first day in New Delhi, and he became our guide for our week there. As he would drive us to temples and sights, he would tell us about his family. We invited Kuldie and his family to Sunday brunch at our hotel. Always punctual, we wondered why Kuldie was not at the restaurant promptly at 10. We got a call from him saying, “Sir, they won’t let us in the gate. You need to come.” I ran down to the gate to meet Kuldie with his elegantly dressed wife and Kuldie’s finely dressed two children.

“Why wouldn’t they let you in?” I asked. As we walked up the steps to the hotel lobby leading to the restaurant, Kuldie explained 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 was nicely dressed with a well-mannered family. “How could they know?” I asked in confusion. “They know,” he said and shrugged. Like Kuldie, I look happy and okay. I am not stinky, 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 what Kuldie was saying at that time or 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 magazine 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 what in that experience could be useful. What did I learn from it? Well, a friend died of cancer. Some family and friends of friends throughout Africa died of COVID-19 and other ailments, and a family friend committed suicide.

Earlier this year, my aunt died of cancer. She had chosen to leave it untreated and for seven years hid the symptoms. Aunt Tish did not want her “I am” to be “Cancer”. She wanted it to be the aunty that sent birthday cards with $5.00 in them to her niece’s and nephew’s kids. She wanted to be remembered as vital, thoughtful, kind and happy. She let the cancer go on. No isolation for her. She was very private, liked to read, listen to books on tape, and watch the news and did not want anyone to “Fuss” over her, even in the end. She lived with my mom, her twin sister, until her death at home. Mom, unlike Aunt Tish, was an alpha extrovert and chatty. So, a perfect relationship.

I think we need to acknowledge both 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 when combined over time. 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 “5 Minutes”. He would say, “Paul, in 5 minutes someone can ruin everything.” He was talking about anger, where a kid hits another kid and gets suspended, or a bar fight, or squabble gets violent.

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 don’t want my “I am’s” to be that of a cancer survivor, Yuck with a capital “Y”. 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, “Ya know, I never read his cards, his handwriting was so awful, but it felt good to get that card.” 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 people’s lives, to be touchable. I want my “I am’s” to be about connection.

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