The Heaviest Burden

 
A few kind hearted and well-meaning people have asked me some variation of “What’s the worst part about having cancer?” since I was diagnosed with incurable brain cancer in May.
I do not doubt the sincerity of their curiosity and hearts.
Was it the exhaustion? The hair loss? The occasional metallic taste? Not being able to drive or drink adult drinks? My skin itching from the radiation treatments? The feeling like a walking pharmacy from all the pills I now take?
Yet the question was still strange.
First, because the answer is clearly right there in the question:
“What’s the worst part about having cancer?”
Having cancer is the worst part of having cancer.
Also, how does one quantify, or qualify, or weigh or measure the impact of such a thing? Especially someone who was extremely healthy before cancer leaped shockingly and unexplainably, into my life.
For the sake of my own mental health, I have tried (but admittedly failed a few times) to follow the sage advice from everyone from my doctors to my wife, our children, dear friends, family near and far, coworkers and even general acquaintances:
Do not dwell on how or why I got cancer. There is no answer. Sometimes crap – including cancer – just happens.
For a guy like me, the worst part is the weight of this burden on those around me. But even that is a hard measure since everyone, out of kindness and love, keeps telling me that there is no burden. They want to be part of my healing journey.
Then, like the cancer itself, a fairly accurate gauge suddenly and unexpectedly appeared.
My 4-year-old granddaughter, Riley Jean Williams.
Please understand this is not common parental or grand-parental pride speaking when I say, Riley is particularly astute, aware, and intuitive. I make my living around children and adolescents. What’s more, I have two sharp, successful young adult daughters. So, I know from whence I speak.
From the start of this adventure, Riley has asked questions.
First, it was about the humongous black eye (actually it was a beautiful shade of purple!) I had after surgery to remove a lemon-sized tumor and growth from my head “Papa, how is you eye?”
Then it was about the Frankenstein’s Monster-like scar on the side of my head. “Papa, how’s you boo-boo?”
Then, about my general health. “Papa, you feel better today?”
Recently, our daughter, Emma, warned us that she and her husband, Jake (two fantastic young parents) had been talking to Riley about my condition.
They were purposely avoiding certain words like “cancer,” “radiation,” and “chemo” so as to not scare or confuse her. They wanted us to all be on the same page since Riley spends a lot of time with my wife and me. Very smart.
Then, most recently, Riley asked me if the medicine I was taking was making my hair fall out. Emma said Riley was very concerned because she was also taking medicine for the effects of a minor bout of Covid.
I have to say: that one conversation broke my heart.
I quickly explained that Papa is taking a different kind of medicine, and she didn’t have to worry about her beautiful hair.
Then I handed the phone to my wife as tears welled and my throat tightened.
I admit, having been raised Catholic, I have a terrible case of Catholic Guilt. I feel horrible that I have put yet another potato on anyone’s plate – emotional, physical, financial, psychological.
My rational mind knows I did nothing to “cause” or “deserve” brain cancer. Still, my whole personal and professional life has been about easing the burdens in other people’s lives, not adding to them.
It’s one thing to know that adults are upset about the many ways cancer has (and may yet) change my life, and theirs by association. And to know you have somehow caused (or at least contributed to) the emotional burden of people you love and respect and care for.
But it is quite another to hear such thoughts from innocent children.
Still, the adults at least typically have enough Life under their belts to reasonably expect them to know what this all means.
I know this is a forced equation. So, I respectfully ask any mathematicians who may be reading this to go easy on me. Here goes:
Riley weighs 41 delightful, joy-filled, smiling, laughing, bossy pounds (“Papa, you come play hide and seek with me!”)
So, I guess we can say that her confusion, concern, and potential for grief may be 41 times worse than most anyone else beside my wonderful wife and equally amazing daughters. At least for now.
But I hope and plan to emerge victorious from these dark woods.  
Then, Riley’s joy may be proportionately 41 (or more) times greater.
To everyone who has held my hand, prayed for me, sent wonderful messages of love, gifts, etc. – and to my beautiful granddaughter, the center of my world – I promise to do everything I can to win.
After all, there’s a lot more hide-and-seek to play.
 
 
 
 
 
 
 
 

An Empty Win

Thanks to you

I may die a death unexpected

But before, I will also

Cry tears of joy uncried

Dance dances undanced

Spread my arms wider than ever

Seek and welcome new voices

Ride a train with new passengers

Sing songs unsung

To celebrate a new love

That will last a lifetime

Death will not be your victory

But rather a chance to mark a life well lived

Filled with love and passion

Beauty and blessings

Gratitude and grace

I do not welcome you

But neither do I fear

Because I entrust my Tomorrow

My soul

My being

To those who have carried me

Past your dark doorstep

You may get my body

But I keep my spirit

The Power of a Smile

I am a big one for smiles.

I love their surprising, disproportionate power to raise sunken spirits.

One Sunday morning years ago, I was picking up a few things at a local grocery store.

A former newspaper reporter and son of a police officer, I routinely and instinctively scan my surroundings and people watch. Coming toward me I saw an elderly African American woman moving very slowly behind a cart way too full for her tiny frame.

I smiled at her just before she turned down another aisle.

About 20 minutes later, I stood in the checkout line and felt a light tapping on my shoulder. It was the African American woman. I turned, ready to help lift something out of her cart.

“No, no, I can get it, honey,” she said softly. “I just wanted you to know how much I appreciated your smile.” I nodded. “It made me feel better. It’s been a rough morning already!” We chuckled in friendly commiseration.

Then she said:

“Today, you were the Jesus in my life.”

Now, I’d heard the phrase before, but not in such an informal context. It floored me like a boxer who didn’t raise his hands fast enough to counter his opponent’s right hook.

It was the first time (but not the last) that I really thought about, understood, and appreciated the power of small acts of unexpected kindness; the miracle of grace (unrequested, unrequited and sometimes undeserved love); and what Jesus meant when He said that heaven is already here – in the space between us.

It was also one of the first times I truly appreciated the reciprocal nature of prayer.

When one prays for someone else, the person praying benefits from the act of conjuring positive energy and directing it outward, as much as the recipient benefits.

That sweet woman changed my life that morning.

I share this nugget to illustrate something that happened just recently.

Many know that I was diagnosed in early May with astrocytoma, an aggressive and incurable brain cancer.

To say the diagnosis was “shocking” to a 56-year-old otherwise-very healthy, active, physically fit man robs the word of its weight.

I admit I am angry, frustrated, confused, and yes, scared. I have learned that I cannot dwell on the Past because no one knows what caused this to happen.

And the only way to achieve the Future (which includes our youngest daughter’s wedding) is to focus on the present. Do everything I am told to do. Walk step by step, stone by stone. And so that’s what I am doing.

Fast forward a couple of weeks. I learned that a group of elementary school students planned to host a lemonade stand as a benefit to raise funds for me and my family. (In my “real life” I am the community relations director for Plainfield Community Consolidated School District #202, which has 26,000 students in grades PreK-12.)

As one might expect, I was flattered and humbled. But a smidge concerned about perception.

My job makes me the “liaison to the world” – good, bad, and ugly.

So I am often the first one angry parents, students and taxpayers call with any complaints or at the hint of any controversy.

In our highly divided and politicized world, I didn’t want it to look like I was getting special treatment. Nor, especially, did I want these wonderful children to come under fire for any reason. (Sad to say, but today, both outcomes were possible.)

I called the organizer’s mom, who I knew through other charitable functions work and shared my thoughts.

She understood.

Then she said something I will never forget:

“This is not being done by a bunch of parents, Tom,” she clarified. “This is being done by students that you have helped over the years. When you go into their classrooms and read to them, or talk about your life and your work, or give them advice or awards.”

Suddenly I couldn’t breath.

“Well, OK then,” I said once I gathered my wits. “As long as it’s about the kids, then it’s ok.”

The very best moment came when my four-year-old granddaughter, Riley, about whom I have written so much that people at the fundraiser knew who she was, announced to my wife that she wanted to help.

My wife directed her to the organizer’s mom, who promptly gave Riley a little apron and sat her down at the lemonade stand. Riley was a natural – probably from all those hours playing “grocery store” with me and my wife!

The students raised a significant amount. Another little girl held her own lemonade stand and gave her proceeds to the pot. A gaggle of high schoolers (not your typical lemonade stand customers) stopped by especially to say hello. Parents of children I’ve never met came out.

To be clear, this is not a moment of false humility.

I am aware and proud of my place in the community and how people perceive me and the work I do (both good and bad.)

Yet I have been overwhelmed by the tremendous outpouring of kindness, love, support, generosity and heavenly connection.

No matter how much you want people to like and love and appreciate you, it is sometimes like facing an incoming wave at the beach when you actually see it manifested in every Get Well card, plant, gift, kind thought, prayer, phone call and text message.

The best though, was the lemonade stand.

It was those students’ smile that beautiful, sunny, warm Saturday afternoon.