I needed a new elevator speech.
People kept asking, "What do you do?"
When I met someone for the first time. When I was buying a suit for Chris or Nate's wedding. When I saw an old acquaintance at the pool. When I ran into an former colleague at the grocery store or reconnected with a college friend on Facebook. When I was walking on the beach at 6:00 am and Bindi lured a dog into a game of chase, and I was left making small talk with the owner and we'd exhausted the topic of "The weather sure changes quickly around here."
This was nothing new, of course. People had been asking this question my entire adult life, and depending on who was asking and when, it's always been pretty easy to answer. Sometimes I was the captain of a ship. Sometimes I worked with appropriators on Capital Hill, where I was (but wasn't actually) singularly responsible for every dollar Congress spent on our ships. Sometimes I worked for the Fleet Commander or the deputy. Sometimes I made the case for funding to ensure that Sailors have what they need to fight and win the next big war.
But I always had an answer.
One time I was out walking and met some folks who had just moved into the neighborhood. I told them I worked at Fleet at "a regular desk job. That I was a "bureaucrat." Those were my actual words: "regular desk job;" "bureaucrat."
And the lady smiled the "I get it" smile, and said, "I understand. You can't tell us what you do. Well, thank you for your service. It means so much."
And that's when I realized that she probably thinks I'm a special forces operative who travels extensively, routinely risks his life, kills bad guys, protects innocent children, feeds the hungry and heals the sick, then only occasionally comes back to a modest condo in Norfolk to decompress and to prepare for his next world-saving mission. Maybe I was reading too much into her response. But honestly, probably not. This isn't all that uncommon. Ask any member of the military that you know. I'd bet they have a similar story they could tell.
That's the great thing about military service right now. You can sit at a desk trying to align ship maintenance and modernization to deployment schedules at the strike group and fleet levels -and people still think you might be something.
I'm lucky to have a job that suggests to people, "I'm moderately successful, and what I do is important." And when it really isn't all that, I can embellish, or more likely, remain silent, just long enough to convince someone that I'm to be taken seriously. To be respected.
That is, I can be an actual bureaucrat. And people will still believe I might be an actual hero. That's why, up to now, "What do you do?" has always been such an easy question to answer.
On February 14, 2017 at roughly 10:00 in the morning in an examination room at the Virginia Oncology Associates in Norfolk, Virginia - everything changed. That was the moment my twenty-six year old daughter Abigail, whose name roughly, and incredibly accurately translates as "father rejoiced" or "father's joy," was diagnosed with stage IV neuroendocrine cancer. She was given a 50/50 chance of surviving the year.
After Abi was diagnosed, I continued to go into my office at Fleet just about every day, but I didn't do
much any ship maintenance and modernization alignment. Here is what most of those days "at work" immediately following Abi's diagnosis looked like.
- Check email, then walk to my car to check my phone for text messages from Abi.
- Send Abi what I hoped was an encouraging response.
- Update Caring Bridge.
- Call Abi or Marcia or Danny.
But most of all, sit at my desk imagining Abi in her condo - watching Bravo - alone with her thoughts.
I'd then repeat some or all of those things until it was respectably late enough to head home.
Up to now, alone with her thoughts had never been a bad thing. Abi is very much an internal processor. Comes by it honestly. But her carefully constructed world and perfectly normal plans for a future had just vanished. Completely. Twenty-six years old. Married for five months. Promising career. Beautiful condo. Three weeks into graduate school. Stage IV cancer. A 50/50 chance of making it to Christmas.
That's a lot to process. That's a holyshitidontknowificandothis lot to process alone. It doesn't matter how strongly you lean toward "I."
John, her husband, wanted to be there for her. Desperately. To sit beside her on the couch. To hold her hand. To walk with her on the beach just as the sun came up. To make her laugh as only he can. To call her out when she gets a little too full of Abi - again, as only he can. To let her win at gin. To make her smoothies and sneak in just enough protein powder that she wouldn't notice, but mostly to be in the same room on those rare occasions when she unexpectedly wanted to process out loud.
But one of the many, many cruelties of the diagnosis was that it was vital that John go off to work to provide the insurance that might extend her life.
That is, it was vital that John leave her every morning so that he might get more time with her.
Pause on that.
John had to leave his wife of five months every weekday morning so that he might get a few more days, weeks, months, and if we're being really greedy, a few more years with her.
I will never understand how we can live in the richest, greatest nation the world has ever seen, yet it somehow makes sense to people that John, and 564,000 people like John, are off at work in the United States right now just so the person who means more to them than their next breath, the person who has so few days left, can get proper health care. How it's okay that 564,000 people are in an office, or at construction site, or a factory, or on a showroom floor right now instead of sitting beside their beloved, soaking up every single minute and making sure that person knows she will never be alone in her pain? How does this make sense to anybody with beating heart? How does this make sense to anyone who has ever loved?)
Deep breath. Reset.
Like John, I'd also go to work, and it might have literally been driving me
a little completely crazy to be trading eight to ten hours a day - hours that were accomplishing almost nothing, and hours that I might have been sitting beside my daughter when she may have desparately needed someone to sit beside her...all of this for a few more dollars. The transaction simply didn't make sense to me, no matter how hard I tried to rationalize it.
So on May 25, 2017, with Marcia's gracious support - maybe partly because I was driving her crazy - I went on an extended leave of absence from my work on the Fleet Staff to be Abi's personal assistant, because she needed me.
There are many, many things I anticipated when I took on this new role. Battling insurance companies. De-conflicting medical appointments. Keeping those that love Abi up to date on her health, her spirits and her treatment. Having coffee with her in the middle of the day at American Brew. Days when Abi would feel terrific and we'd walk through the botanical gardens. Days when she could barely get out of bed, and my only purpose in life was to rub the pain out of her back. Planning trips to specialists in Columbus or New York, and trying to help John, who worked so hard to ensure there was an element of fun in these trips we never ever wanted to take. The kindness of volunteers in the treatment centers, and people who do so much more than their jobs (like Ainah!). The days spent in doctors' examination rooms. These are the types of things I anticipated. And they all happened.
But the one thing I certainly didn't anticipate was the awkward, how-do-I-answer-this? feeling when people ask me, "What do you do?"
Almost every time, there'd be a moment of uncomfortable silence while I sized up the person who was asking, and tried to come up with the answer that they might find acceptable. An answer that made me seem somewhat impressive and worthy of their respect. Here are a few of the responses I'd use:
- For old friends who didn't know Abi's story: "I'm still at Fleet - and working on a special project for Admiral D. to modernize our strike groups in a more coherent fashion. We're pretty excited for where it's going, and I'd love to talk to you about it sometime." This was partially true. I technically was still at Fleet, and my job really had been to implement a pretty radical idea the commander had. I had been genuinely excited for where it was going. But I wasn't doing that job any more, and certainly didn't want to talk about it...at all. But there was a lot that sounded good about this. It implied I was in the commander's circle of trust. That I was working on important stuff. It said, "Respect me!"
- For old friends who did know Abi's story: "I've taken some leave from Fleet to take care of my family while we get our arms around Abi's sickness." Also only partially true. Yes, I had "taken some leave," but this answer omitted the important fact that my leave was indefinite, and that I had no idea when, or even if, I'd ever go back. But by leaving that stuff out, I was also suggesting, "Hey, this is a temporary thing. I'm still relevant."
- For new acquaintances: "I was the captain of a ship in the Navy until I retired a few years ago. Now I do some work for the government, teach a class or two at Old Dominion, and try to fish or golf whenever I can." This was a really good answer. Hits all the important wickets; It suggests I had a successful career. It tells the person I give back to my community. And it implies I don't really need to a full time job to maintain a life of leisure. Um...that's just false, but I never really say that, so I guess I'm not lying. And I'm a terrible fisherman and a worse golfer.
- For Uber Drivers: "I teach math at ODU, and I do a little writing." Yes, I used this, and it worked pretty well a few times. Until I happened to get an Uber driver who actually was some sort of plantasmagraphic flux engineer, and he clearly knew more about math than I ever would, had published a number of actual books(!), and apparently was a pretty respected blogger. "Um, I'll just get out here, before you ask me about my 'Math for Poets' course."
But here was the problem with these answers. There was a lot of what I used to do, and very little of what I was currently doing. The answers sounded good enough, but they felt hollow. Misleading. I felt dirty saying them. Felt dirty hiding the truth.
So after the Uber fiasco, I took stock.
So what is it I do?
Here's the best I could come up with. Most of my days tend to be broken into three phases.
Phase I: Abi is Sleeping:
To do list: Download Quicken transactions. Go for a run (ha!). Do a little writing. Send a process pirate. Take Bindi for a walk on the beach. Bake bread. Check to see if Abi's responded to the process pirate. Send a thank you note to someone who did something kind for us. Put in a load of laundry. Prep chicken thighs for dinner. Brown some ground beef, and make some Grandma rice - although not as well as Grandma, apparently - for Abi. Make a grocery list. Go to the commissary. Give Marcia a quick call if she's traveling, or play a game if she's not. Shoot a text to Chris and Nate. Do some reading. Meet with Elizabeth. Talk to my mom. Work on the syllabus for my class in the fall. Shower. Make phone calls. Go through the new listings in Charlottesville. (Full disclosure - I almost never have an actual, written "to do list." It's more of a "to do guideline," and I sorta keep it in my head. It's better that way.)
Phase II: Abi Wakes Up
To do list: Whatever she needs.
In pain? I rub her back. Hungry? I toast a pop tart. Energized? We go through her to do list, or do some strategic planning for Two Flounders. Feeling angry? We gear up for insurance wars. Treatment day? I pack lunch. Feeling exceptionally good? We plan next month's Christmas, or I drive her to the outlet mall to buy jackets for Jackie's bridal shower. Feeling closed in or tired? Give her space (and keep working off the tasks that I didn't finish before she woke up, like preparing dinner, mostly).
Phase III: John Comes Home
To do List: Finish dinner. Have an Old -Fashioned or a Manhattan while John and Abi sit on the couch together. Have dinner. Clean up. Walk the dog. More reading. More of Whatever she needs. Play a game with Marcia if she's in town, and call her if she's not. Pop corn. Go to DQ for blizzards and pup cups. Go to bed early. Pull out the Kindle to read The Empathy Exams or The Year of Magical Thinking or some other "grief book." Or maybe just turn on a M*A*S*H rerun. Fall asleep almost immediately. Usually.
It feels a little bit like I'm describing the life of the mother of a young child. My day sounds vaguely similar to how Marcia used to describe her days when we had three under four, and I was deployed to the Arabian Gulf.
But it's certainly different, isn't it? It's easier. Abi is decidedly not dependent on me for everything. I don't have to worry about her finding the laundry detergent packs and thinking they look like candy and sneaking them into her mouth while I'm chasing after her brothers. Abi usually gives much better feedback than a crying baby. I (almost) never get woken up at night, even when Abi can't sleep. It's definitely easier.
But the comparison still seems about right to me. I'm there to do what's necessary. To do what Abi needs me to do. I care. I give care.
That's what I do. I'm Abi's caregiver.
There's a passage in Tom Perrotta's The Leftovers that I highlighted a few weeks after I came home to care for Abi. Even now, it resonates so deeply with me.
"Laurie herself was more focused on the years when her kids were little, when she had felt so necessary and purposeful, a battery all charged up with love. Every day she used it up, and every night it got miraculously replenished. Nothing had ever been as good as that."
Yes, I'm Abi's caregiver, and this is how I feel about it. I hate the circumstances. But nothing has ever been as good as that.
But there's a little more. Do you remember the climactic scene in The Sixth Sense? When Malcolm (Bruce Willis) is sitting beside Anna (Olivia Williams), and in her sleep, she whispers:
"I miss you"
"I miss you, too."
"What? ...What is it?"
"Why did you leave me?"
"I didn't leave you."
And the silence of that moment is broken by the sound of his wedding band falling from her hand, and it rolls across the parquet floor to a stop at his feet.
Malcolm notices she's still wearing her band. He notices he isn't wearing his.
He sits in silence. He sits stunned.
And after a few agonizing moments, He looks up in a way that says, "I finally understand."
Then a series of flashbacks. Malcolm really does understand. He knows who he is. (Go watch it again. It doesn't matter whether you love or hate Bruce Willis, It's amazing - and it really is a happy ending, isn't it?)
It's Wednesday morning, I finish baking bread, and head off to shower. Abi is still sleeping, but I know she'll be up soon. I'm really looking forward to taking a few minutes to get cleaned up before Abi wakes up.
Just as I turn on the waterpik, my phone rings. It's my mother who lives six-hundred miles away. I don't want to pick up. I want to floss. I want to take a hot shower. I want get my mind right for phase two of my day. This is not the right time for my mom to call.
But I do the right thing. I pick up.
My mom is hurting. She's worried about someone she loves very deeply. Worried to the point of being angry, and she needs to talk it out.
Forty-five minutes later, she's in a much better place. She's still worried, of course. But she's given herself a break for being worried. Understands it was her fear what was driving her anger. Once she gets past that, she's free to look at the situation from another perspective. And her anger has melted into compassion. Real compassion. Maybe even empathy. It's so good.
I would love to take credit for this transformation, but I know can't. I only listened to her. Suggested her fear made sense. That it was okay. Maybe asked her a question or two, and let her know that I cared. She did the rest. But I was so glad to be there to witness it.
A few hours later, she sends this text:
"I want to tell you how much I appreciate our conversation this morning...You gave me insight into the situation with Lydia. The Lord used you in my life today."
I don't necessarily share my mom's faith, but I do understand just how much a part of her it is. I understand this little text came straight from her heart. I'm deeply moved. All I can go back with is, "I love you very much, mom."
This was a very good day.
That's my "Why, Malcolm?" moment (but much, much better than Malcolm's, of course). When I realize who I am. That I'm not just Abi's caregiver. I am a caregiver.
For John and Marcia. For Chris and Nate and my mom. For my friends. For strangers. If I'm lucky, for all of the people around me.
It's suddenly so obvious. If you were to go back and re-watch the film of my life, the clues were there all along. Right out in the open. My childhood ambition to be a missionary. My admiration for my colleague who left a fast-rising career at the Pentagon to go to nursing school, and who's probably working the night shift at the Medical College of Virginia tonight, getting paid a fraction of what she made in the government. Always choosing Twelve Angry Men over A Few Good Men, and John Irving over John Grisham. Believing the death penalty is the epitome of evil. Secretly being okay with welfare programs when absolutely no one else in my little corner of the universe seems to be. My convictions that compassion should always trump justice, and that Mother Theresa is an actual saint.
How, in the words of Leslie Jamison, "I want to be the compassionate nurse, not the skeptical doctor. I want the abyss, not the verdict. I want to believe everyone. I want everyone to be right."
And it certainly describes my near-obsession with this gem from Henri Nouwen:
"When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares."
This. Is. Who. I. Aspire. To. Be.
To the 7.6 billionth power.
I know there are others like me. I even know who some of them are, even if they don't often talk about it. Todd was a caregiver. I'm sure of it. And the others aren't all that hard to spot. Dylan knew how. They're the ones who who'll be with you when the deal goes down.
But I also understand that for many, "I'm a caregiver" won't demand the same level of respect that "I was the Captain" might. I understand that "I'm a caregiver" doesn't suggest that I had a successful career. And nobody will ever again confuse me a special forces operative. That's okay. I'm finding that matters much less to me than it once did.
I don't know how good I am at this job, and I'm all but certain I'll never perfect my craft. The pay isn't great. The hours can be a little unpredictable.
But on the best, rarest days - on the days that I go to bed but can't sleep because of the frenetic joy that fills me to overflowing, because somehow I helped to ease someone's pain - if only a little, little bit - then I'm sure that "caregiver" is far and away the most fulfilling job I've ever done, or ever will do.
I am a caregiver.
That's my elevator speech.
The whole damn thing.
No matter who's asking.
And I can't wait to see where it takes me.