Barcelona
Dear Friend,
Trying something a little different. I have a friend coming in who I haven’t seen in decades. A friend who walked the caregiver path with his wife at the time I was walking it with Abi, and it spurred me to consider some of what he might have experienced, and perhaps to wonder about what Kathryn might be thinking about. I don’t know if she is or she is not. These are not easy boxes to unwrap.
This was originally posted in 2018. I don’t know that I would say things in exactly the the same way today, but I don’t know if that matters. For instance, time is no longer everything, as I believed it to be then. I’ve come to accept that we have far more Time than we can perceive, and that urgency is a trick that Not-Love uses to create impatience. To divide us.
Just one small example, and one that you might notice here. I’m sure there are others.
Still, it was helpful to remember, and now I wonder if remembering might be more about empathy than it is about identity. More about compassion than accomplishment. More about grace than gain. I like this thought. I like it a lot, actually.
What might you say?
Oremus,
C
Barcelona
It’s 4:30 A.M on Tuesday.
My daughter, Abi, is in front of the fireplace. In child’s pose. I’m rubbing vitamin E lotion into her back. There’s a darkish circle in the middle, almost brown, almost purple, but not quite either. Maybe from the current round of radiation — her second — or maybe from the heating pad she uses almost constantly. I’m convinced her spine and ribs are a little more visible through her skin this morning than they were even last night while I sat with her and her husband of just over one year watching Paradise Lost.
This morning, I’m trying to decide if what I’m hearing from her are painful groans or satisfied sighs. They both sound so similar, and her voice is so weak that it’s cruel of me to ask.
Asking just reminds her, I imagine, of how hard it is to be heard. It reminds her that cancer has claimed yet another boundary. A boundary we didn’t even know was there until it was so badly damaged that we had no choice but to acknowledge it was completely compromised. The tumors push on her throat, and she can’t force enough wind past them to be heard over the sound of the air blowing through the vents in the condo.
I never considered that cancer would overwhelm our ability to talk with each other.
But it has. It literally has.
I decide on satisfied sigh and continue. It feels like the right decision. It comes from love. Not fear.
Abi smiles.
I start to think about other ground we’ve ceded to the disease.
Abi and her husband moved into the bedroom suite downstairs last summer. We gave up that ground willingly. They retreated from their condo and accepted space in ours. It was a strategic retreat. Trading space for time. Time is everything. Time is absolutely everything.
In addition to the suite, they had their own living room. We painted it Amazing Gray, just as they asked. Put down new wood flooring. Her husband hung a dart board, and they brought the artwork from their old place — prints of Barcelona, one of Abi's favorite cities, that he had purchased for her after one of her work trips. He secretly framed, then presented them to her on her twenty-sixth birthday, just six weeks before her diagnosis.
It was a gift of hope that they would someday go to Barcelona together, a hope they held together like a hatchling, careful not to squeeze too hard, but also firmly enough that it wouldn’t fly away.
These are the prints they carried from their condo to ours — four months after Abi's diagnosis. Eight months after their wedding. They brought their hope with them. They hung it on our walls. Right out there for everyone to admire.
They offered their condo, but cancer is never satisfied with what we willingly offer.
A few months after moving in with us, Abi's pain began keeping her up at night. When her inability to sleep started keeping her husband awake, who dutifully and lovingly continues working to ensure she has good health insurance, she brought up her bin of oxycodone, acetaminophen, omeprazole, thyroxin and prevacid and Bath and Body Works lotions, and put it on the nightstand in the upstairs guest room. That’s where she often sleeps now, or often spends her nights trying to sleep. Cancer has claimed the guest room. Another space surrendered. Another boundary compromised.
Today, foam rollers and electric massagers and giant pillows have their own places in the living room. There are usually flowers on the TV console and dining room table. Flowers from aunts and cousins and college friends, who want so desperately to know how best to love these precious newlyweds. The sideboard is filling with vases that I can’t bring myself to throw away, or even to donate.
There are empty popcorn tins accumulating on the floor of the pantry — more reminders of kindnesses offered. There’s always a two-quart pitcher of blue raspberry Kool-aid in the refrigerator. There’s Ensure in the freezer and more on the countertop. There are boxes of dandelion and camomile and senna tea bags beside the coffee maker because the radiation oncologist or a friend suggested it might help her to feel better, and offered them to her by the box-load. We’ve run out of room in the cabinets to store them. They’re already overflowing with tea.
The disease uses even flowers and Kool-aid and tea bags to mark its territory. To stake its claim to just some of the many compromised boundaries.
—
I get up early to do the things I want— maybe need— to do before Abi rises. Writing. Housework. Reading.
My favorite thing. Writing letters.
After she wakes up, time is dedicated to fighting the disease in the only way I knew how. To caring for Abi. To helping her to feel better. I don’t speak this out loud, but the transition from curing to caring happened for me months ago. It was a good trade, but not one everyone is willing to make it. It feels like surrender to many. I understand and respect that. And I go on caring.
But I put up walls around the early morning — the time before she gets out of bed. That's time for me to recharge and prepare. To make myself stronger. To be a better care giver.
But cancer always wants more.
I used to think cancer is mindless. Strong, irresistible, but unthinking.
But it’s actually cunning. It’s so incredibly strong, irresistible, insatiable and cunning. It knows how to fight the long war.
Cancer concedes the time while Abi rests to me. It gives me that much, and it keeps its word.
But then it steals her sleep. She's now rising at 4:15. Cancer leaves my walls intact, but renders them completely meaningless.
My therapist once suggested that resentment is a seed planted in boundaries. Boundaries that we construct to protect what is most important to us. And it germinates when we sense those boundaries are violated. Like a thorny hedge. It occurs to me that resentment and fear are fraternal twins. Both protective and well-intentioned, but often misguided.
I like this perspective. It helps.
This morning, I was determined to drop a short note of gratitude to someone who has been so generous with time and perspective. Someone who has been more help to me than a simple note can express, but who deserves at least that.
When Abi walked out of her room at 4:15, when I was making my way to my office to type a note to this friend, I didn’t see cancer. I saw Abi. I saw Abi claiming the time I had set aside for something else. Something really important to me.
For a brief moment, Abi was the one violating the boundary.
Resentment and fear did their best to defend it. I was kind to her. I hope I was. But I wasn't happy for the interruption.
Cancer is more cunning than I imagined. I realize now it hides behind my daughter.
My daughter, who has an appointment with her oncologist today which will almost certainly involve an unbearably difficult conversation. My daughter, whom I love more than music. More than sunrise over the bay or August meteor showers. More than Christmas or mint cocktails in July.
More than any of those things. More than all of them.
Yet I didn’t see the disease hiding behind Abi. I saw Abi. I resented her.
So. Diabolical. So. Cunning.
My friend, Karen, told me how her husband pulled away from her as he got sicker. She didn’t give specifics, but I imagined what this might have looked like.
Like sarcastic smiles when she brought him a sandwich. Like pretending to be asleep when she asked him how he felt. Like refusing to look away from his telephone when she kissed him good night. Like giving into his anger at the very moment she was most generous. When she was most vulnerable.
It might have looked like cruelty. It almost certainly looked like cruelty.
Thanks to Karen, I’ve prepared for these things.
I think I’m prepared, because I know this isn’t Abi.
Abi is the little girl that ran down the hill to meet me when I got off the bus after work. The woman who shared a ten-hour road trip to college with me, putting together a business plan that would allow us to work for each other. The woman who sends the darkest, funniest snaps while she’s waiting to go back for her next radiation treatment.
I know occasional unkindness or even cruelty is just the disease, hiding behind her, just out of sight. I know that's not my daughter. I know Abi will be back. When I wait for her, she always comes back.
I'm prepared if Abi occasionally pulls away. But I wasn’t prepared to be the one pulling away from her. This was a boundary I had left undefended. Just like her voice, I simply never thought this might be vulnerable ground.
As I look back on the past couple of weeks, I see that cancer has been testing this boundary. I’ve resisted it, but Abi has seen it. She notices when I get edgy at her inability to tell me what medication she needs. When I react to her anxiety at having to entertain someone she simply doesn’t have the strength to entertain. When I push her to eat more than she can eat. Not more than she wants to eat. More than she can eat.
But I now better understand that even this sacred ground, my absolute trust in Abi, is subject to attack. And I hope that knowing is enough to keep this ground safe.
I want to believe, truly believe, this is a place where I am stronger than cancer. It's a boundary that I hope never to compromise.
Not as long as Abi and her loving husband fight so hard to defend their most important ground. The place where they hold their hope.
Not as long as those prints from Barcelona hang on the wall.
I only know you as the “trail angel” who brought water and thoughtful nourishing snacks to our Saturday hike, but I so appreciate the gift you are sharing and how it opens my eyes and heart to be able to share a small part of your journey. Thanks for this.
This was amazing, Chris. What a piece of writing! Stops-you-in-your-tracks kind of writing.