By Lynne Rothrock
A local high school student recently asked to interview me for a project. As expected, most of the questions were biographical and about my education and work experience. Near the end of the interview she said, “I have just one more question. Are you happy?”
I stopped short. This was not what I was expecting. Are you happy??
How does one answer that question, at my age, in my current situation—or maybe ever, if I want to answer honestly? We had only a minute or two to complete the interview, so I paused and then said something along the lines of, “Um, I think so? I mean . . . probably?”
I was mentally cataloging the reasons why I should be happy: I am a person who has known from about age five what I was supposed to do with my life, which makes me luckier and happier than many. I have work about which I am passionate and that I believe matters. In many ways, I am wildly more successful in my work than I might have ever imagined when I was young. This work does not give me financial security, but my basic needs are met and— other than going out to eat more, being able to buy tickets to shows, and taking vacations once in a while—there isn’t a lot I wish I could do that I can’t. I have a wonderful mother, sister, and other close friends who are like family. And I have love—in my music, in my life—in my husband, Ron, the most soulful guitar player I’ve ever heard.
But how can I say, unequivocally, ”Yes, I am happy” when my husband is fighting for his life?
Two-and-a-half years ago he was diagnosed with pancreatic cancer and the days since have been terrible in more ways than they have been wonderful or even okay. This experience of fighting and living with this disease has been awful, horrifying, scary, tragic, devastating—in ways the world never sees.
And we are not even into the very worst of it yet. It is hard. SO hard. Managing this while going about the business of life—including the work that I genuinely love—is treacherous. It is walking on a tightrope all the time, falling, and barely catching myself. It is overreacting to things, snapping at people, getting mad and offended at other people’s normalcy. Craziness. Terror. Forcing myself to be strong and brave in front of him.
I’ve actually walked this path before—with the other great love of my life—my father. He was diagnosed with essentially the same illness and had the same gigantic surgery my husband did— and died within a year of diagnosis.
Although I was not my father’s day- to-day caregiver, I was there when the fires were burning. Sleeping on a cot next to his bed at the Mayo Clinic when the alarms went off signaling dangerous fever, collapsed lung, pancreatic leak. Walking the hospital halls with him during the night as he shook with pain that was inadequately managed. He suffered so much that in one harrowing moment he clutched my hand and said “I wish you could get a gun and shoot me.”
He recovered from that surgery, only to have the cancer return with a vengeance shortly after. I returned to Iowa to care for him in the last weeks of his life and, ironically, I would have to say that those weeks were happy times. We had already been told the worst possible thing— that he was dying. All that was required after that was to keep him comfortable and to love him.
Very near the end, my father was in bed, feverish and agitated. I lay next to him, softly singing and trying to soothe him—ease his way even—when I realized that if I was successful, he would leave me forever. That the mere act of trying to help ease his struggle may ultimately bring on the very thing I had feared the most. I remember thinking: now THIS is love, in its purest form. This is divine, selfless love because every part of me was screaming for him to stay, terrified to live without him and yet I was helping him along. I had the revelation—as if a chorus of angels were singing—that this is the meaning of life.
When I went through this with my Dad I was much younger. I didn’t yet know that the years of grieving his death would be even trickier than the time preceding it. I was unmoored when I lost him. I was too young to know that the good and bad in life are all part of the same thing, that we don’t get one without the other.
I learned that one can endure great pain and still go on living and in fact, thriving. I learned that the greatness of the loss was equal to the greatness of the gift of having a Dad who loved me so much. I learned and am still learning that great love can be as difficult to manage as great loss. It is messy and heavy and draining and difficult and so potentially painful to manage great love. But isn’t that why we’re here?
So here I am again. Loving someone with a terrible cancer. My husband has managed to buy more time than my father did, so the period of caregiving—the least fun rollercoaster I’ve ever been on—is longer, the tests, treatments and procedures are multiplied. When I cared for my Dad, I left my work and my house in Nashville—so my time was totally focused on him, caring for him, being with him. No distractions.
Now the moments of heightened emotion and awareness are peppered amongst the day-to-day mundane activities of life that continues on. Now there are plenty of distractions: I must balance the caregiving with the obligations of a self-employed artist who still needs to make a living. That means juggling eight jobs in eight different places, scheduling work six to twelve months in advance while not knowing if I will be able to honor those commitments. It means doing laundry, taking out the garbage, constantly thinking of, shopping for and cooking fattening foods that I hope he will eat and that I hope I wonʼt eat. It means staying on top of all medical communications, appointments, prescriptions, infusions, temperature taking, weight and blood tests results—all this while the car needs an oil change, the tax return needs attention, the motion light by the back door is broken, the dog needs grooming, I need grooming. . .
Right now, my acts of love look less like softly singing and comforting someone and more like hitting HyVee for the third time in a day because he hates going to the grocery store but he is craving carrots. It looks less like sewing little caps to keep my father’s bald head warm at night and more like stopping at Casey’s General Store to pick up a 12-pack of Busch Lite for my husband when it is the last thing I feel like doing after a very long day.
Love looks less like plumping pillows and more like jamming a thermometer in his mouth one last time before I dash off to work and shrieking at him to “take the Tylenol because your immune system is compromised!” Love is also knowing my limits. This chubby, menopausal woman will never be able to keep the thermostat where he wants it. But I did buy him both a space heater and an electric blanket.
These days, love is buying a ticket for a show or concert, a rare splurge and feeling the pull—the tug—that makes me leave at intermission. Not because he urgently needs me or I can actually do something that will make him feel better, but because as much as I long to get out of the house sometimes, I’d really rather be with him.
Love is the acceptance of the fact that it is no longer ever about me. That I have moved from wife to caregiver and may not ever move back. Love is realizing that this is the natural course of things, the trajectory of our story, our great love story that was born in music making—and those sublime moments of music making will be the truest, most proud moments of love that I have shared with my husband.
Love is finding him irritating, infuriating and disappointing—like we all are at one time or another, and catching myself just before snapping at him and remembering that he is scared. So scared. Love is feeling neglected and taken for granted, yet throwing every ounce of my red-headed personal power in the face of any doctor or nurse who fails to treat him with respect or give him proper care. Believe me, you don’t want to be on the receiving end of that.
So, am I happy? Can one be happy while walking through this particular fire? Certainly not the chipper, smiley kind of external happy that we sometimes show the world. But maybe a quieter, darker kind of happy in knowing that there is no place I would rather be. Happy that there is love in my life—the serious kind of love that I have to dig deep for because it’s really, really hard. The kind of love that is a big, fat, complicated handful. The kind of love that provides the greatest lessons. I’m grateful that I have the opportunity to keep learning those lessons. So, am I happy? I guess I am. (And I’m thankful to a high school student who helped me remind myself. )