Four Words That Will Help Me Save the World

Four Words That Will Help Me Save the World

Two days before Thanksgiving, M had his every-so-many-monthly MRI. For us, it was what it nearly always is. Inconvenient, but not unwelcome. Stressful, but less so than so many other aspects of our lives. Worrisome, but by no means the most worrisome thing in our lives. To be honest, two weeks after the election the most pressing concerns in our lives were, "Will our incoming president make it impossible for M to continue getting the lifesaving healthcare we are enjoying right now?" "Will the rise of the alt-right and the associated massive surge in anti-Semitism that has occurred since the election make us unsafe?" and assorted related concerns.

I arrived late to M's MRI, after battling through a little more traffic than usual, and made myself a little nest in the waiting room, as usual. I had the laptop, to get some work done, my phone, to check in with well wishers, and my kindle, to distract myself.

After a few minutes of busying myself, I noticed a patient directly in front of me, he and I facing each other, as his mother spoke to him in low, flustered, but calming tones.

He was wearing a Cubs hat, sitting in a wheelchair, and I guessed he was 20 or 21 years old. His mother busied around him, trying to help him through what was clearly a panic attack. My heart broke for him, for his mother, and then for his father, pacing back and forth from his son to the water cooler, helplessly and exhaustedly trying to find a way to soothe his frightened son.

It's not hard to be terrified of cancer. It's not hard to be terrified when you're young, but grown up enough to understand what is happening to you and in your life.

It's hard to feel helpless about the terrors facing your loved ones, it's hard not to know what to say. It's hard not to know how to act. It's hard to be unsure if anything you do is the right thing, or the wrong thing, it's hard to know if you're hurting or helping, when there is no road map, there is no set of best practices, there is not guideline for walking your loved one through the first weeks of a deadly cancer.

I did not know what kind of cancer this kid had, but I knew he was terrified. I knew he couldn't walk. And I knew his parents were beside themselves. In most circumstances, I might have simply sat with my worry, with my desire to anything to help and my fear of doing the wrong thing. But I saw the father's tsit-tsit, his keepah, and I knew they were an orthodox Jewish family- the sort of people I might cheerfully bagel in a different time or place. And so, emboldened by the knowledge of our shared culture and history and social quirks, I moved to the closest chair.

I leaned over the back of my new seat and said, quietly, "You know, my husband is back there, getting his MRI. He's been getting them every few months since he was diagnosed. That was nine and a half years ago."

The kid looked up, made eye contact, held it for a moment, and I went on.

"I know how terrifying this is. He was 24 years old when this started, and they said he had about 18 months. But that was almost ten years ago. And he's doing great. Really, great. His tumor is in his brain. Inoperable. And now we have three kids."

The mom's voice broke a little bit as she rubbed his shoulder. "You hear that?" she said, "He's doing great!"

I kept looking the young man in the eye. "I know how scary this is, but this is the hard part. The beginning is the hard part. It's a lot, you know? Learning all this, and having all the scans, and knowing what's coming, and the chemo... this is the hard part. But it isn't the last part. This isn't all of it. It gets so, so much easier, and the medicine is getting better all the time."

His breathing evened out, and he looked at me with his red, frightened eyes. "I was just diagnosed a few weeks ago," he said, and in a rapid jumble, he and his mother gave me the impression the cancer was in the bones of his leg. A terrifying diagnosis. Surgery. Now, a scan, to find out if the cancer has already grown back.

I nodded, as though all of this was familiar. It's not, of course. Every person's cancer, every person's experience, every person's fear is unique. But I nodded. "I know it's scary. But you're going to get through this. My husband was through radiation and back at work the same summer. He's been through a recurrence, now, but it's been almost ten years since he found out he had this. And he's not alone- more and more and more people are living with these cancers. You're going to get through this."

He smiled, a little, and he said thank you, and his mother cried a little. She thanked me as well, and I tried to smile at her. None of this is easy, and there is nothing anyone can say to make it so,

They thanked me, as a family, the kid's breathing steady and calmer now, as a nurse wheeled him back to the MRI.

I wanted to feel like I helped, but of course there's no way to know. Maybe simply realizing his panic was visible to strangers halted his panic attack. Maybe I did actually make him feel better. Maybe knowing that he was seen as a human being for minute was all he needed.

I know far too much about osteosarcoma to believe he has an easy journey ahead of him, and I think that is what his mother said. I have thought of him nearly every day, and I hope he has found a way to move forward. Not without fear, but without dread. It's the dread that gets into you, eats at you.

Two days later, I gathered my family around me and I said aloud how thankful I was for all of them, for our lives, for the chance to be together. And while part of me felt like a hypocrite, as I felt anything but thanks and hope for the turn our country had rapidly begun to take, another part of me felt thankful for the moment I had shared without any of them, for the moment I had injected myself into another family, and told them they had a future to face. I hoped they were enjoying a moment of thanks in their own home, or at the very least, outside the hospital. I thought of that young man with watery eyes and a Cubs hat all day.

Today, only a few days before both Channukah and Christmas, M and I took the girls to meet up with another family for brunch. A friend of M's from high school reached out- her husband had been diagnosed with M's cancer, stage four glioblastoma. We've spent the last few weeks emailing, and they are lovely people, who are handling this situation with tremendous grace and optimism. Before meeting them, I loved them at once. And in person they were kind, gracious, funny, and warm. People I would want to have in my life, regardless of our shared life sentences.

There was no panic, no deep fear. Concern, yes. My new friend worries about the future of his very young children, of what he might miss, of what might change. And they were already at a point of understanding and self compassion that should be humbling to anyone who has contemplated facing the reality of a diagnosis like this. It was like visiting with family.

I will be thinking of them as I celebrate the upcoming holiday with my husband and children, with our parents and siblings, and friends.

There is a profound difference between being optimistic and confident at brunch, and while waiting for your MRI. Nobody knows this better than me. How many blog posts have I written in the hours waiting for M's scans, about how 99% of the time I am completely at peace with the course of our lives, but for those few hours every other month, I am a wreck. During those hours and ONLY those hours, I am alone in the world, with nobody to share my pain and my fear and my doubt.

It is a blessing to be able to share these brunch moments with another family, and I do not use that word lightly. But it is so much more of a blessing to share the fear. To take a measure of it away, if at all possible. To dull it for a moment.

If you live in or around the Twin Cities, go to Hazel's Northeast. The staff overheard much of our conversation, two young families comparing brain cancer stories and advice, and comped us our entire huge and spectacular meal.

If you live with a chronic condition, like cancer, reach out and be the rock somebody else might need, or want. Every boat raises the water.

And if you see somebody afraid, lost, demoralized and existentially alone, say something. Let them know the are not alone, that they are surrounded by stories some might call miracles, and some might call the rapid advancement of science, and some might call dumb luck, but they are surrounded by people who understand and care.

I care. Tell them I'm here, and I care.

"I'm here, and I care..."

This is my mantra moving forward, not only as a prayer for the holidays, not only as my guiding principle for 2017, but for the rest of my life in all things.

I'm here, and I care...

And I'm not going to let opportunities pass to share that simple message with whoever needs to hear it.

Read more about waiting for MRIs here: How Love Lasts Forever When The Great Lakes Can't
Read my latest post here: Dispatches from Disasocciated America

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