The Grief of Pain

1.  Every time I teach a course, I end up learning something from my students. I don’t think I’m alone in this, and—in fact—this intellectual give-and-take is part of what drew me to the profession in the first place. So it was no surprise to me when I began teaching a new course on the films of the Pixar Animation Studio last January to find that their insights were sparking new ways for me to think about these movies. I wasn’t prepared, though, for how much my students would teach me by the time we were finished.

2.  Kariann and I met in 2008. When she asked me out on our first date (yes, you read that correctly), I was wearing an ugly tie. I know it was an ugly tie because she later told me so, although I always point out that this did not stop her from going out on our date. That ugly tie now sits in a box of keepsakes in my closet as a reminder of the most important moment of my life. We were married in 2011 and became the proud parents of a beautiful daughter in 2012.

On December 25, 2014, Kariann woke up with sore arms. At first, she thought she had simply slept in an awkward position the night before, but the pain began to escalate quickly, and we ended up in the emergency room twice by the time the day had ended. Her pain was excruciating, and it was moving too. While her arms continued to feel as if they had been lit on fire, she was starting to feel what she described as electric shocks in her legs too.

Theories were bandied about: perhaps a strange virus, possibly a pinched nerve. One of the ER doctors used the phrase “neuropathic pain.” He told Kariann, “You’ve got it, but we don’t know why.” I had never heard that term “neuropathic” before, but over the next few months I would hear it more than I ever could have guessed.

A few days later, we made it home from my father-in-law’s house in Dallas, where we had been staying for Christmas break, but just barely. On January 1st, Kariann was admitted to the hospital for the first time. Doctors were sure that whatever was wrong involved her nerves in some way, but that’s all they were certain about. They were searching for the root of the problem. The hunt would prove futile; no cause would ever be found. “You’re a mystery,” they told her. We were advised to see our primary-care physician as soon as possible and to get a referral to a good neurologist. “It’s probably just a virus. It should pass soon, but we want to make sure it’s not something else, like MS.”

3.  One of the first films I taught in the Pixar course was Finding Nemo (2003). Moving beyond the movie’s tagline “Just keep swimming” (which had resonated with me long before Kariann’s health issues began but now took on greater significance for me), I wanted to focus in more depth on the journey motif. I had titled this unit “The Hero’s Journey,” and assigned some sections of Joseph Campbell’s The Hero with a Thousand Faces for students to read in conjunction with watching the movie. Finding Nemo is more complex than most people give it credit for. It’s The Odyssey set in the ocean, where a father and a son must each make their own journeys in order to better understand themselves and to see one another in a new light. Marlin, whose wife Coral is tragically killed trying to protect their soon-to-be born children at the beginning, must learn to let go of the past so that he can move on with his life and be a better father, free of the paranoia that prevents him from allowing Nemo to grow up. Nemo, too, begins to acquire a greater understanding of his own strengths and weaknesses while at the same time gaining insight into his father’s fallibility. Their journeys intertwine, and the gains in empathy made by the two protagonists are quite poignant.

And yet at the root of it all is the notion of home. My students were particularly astute at drawing out this element of the film. Dory, the friend with short-term memory loss whom Marlin finds along the way, has a beautiful line toward the end of the film when she tells Marlin, “I look at you, and I’m home” (1:23). Like The Odyssey, Finding Nemo is ultimately about the ways in which we reimagine the meaning of home from something that is place-bound to an ideal that becomes tied to the people about whom we care the most.

When I look at you, I am home. My home is wherever you are.

4.  It wasn’t MS. Instead, the verdict was something called peripheral neuropathy—a condition involving severe inflammation of, and often damage to, the nerves in the arms and legs. February and March were horrific. While we got bounced from doctor to doctor, with long periods of time between scheduled appointments, Kariann’s pain grew worse and worse.

In what I will, until my last day, believe to be a violation of the Hippocratic oath, not one but two doctors told Kariann that they wouldn’t prescribe pain medication, that she should, and I quote, “just go to the emergency room if it got too bad.” We didn’t know it at the time, but the federal government had passed a law in October mandating that physicians must apply for a special script pad to write prescriptions for hydrocodone, more commonly known as Vicodin or Norco. Prior to October, it was relatively easy for doctors to prescribe these medicines. Since then, however, it now requires both more effort and greater assumption of risk in order to get patients these medicines. The end result of this is that most doctors need to be certain about a person’s level of pain and committed to helping them get well, but many will not do so because they would be liable if a patient abused the medication.

We were fortunate enough to finally find a neurologist who was not only top notch, but she also believed that Kariann was in excruciating pain. The doctor believed her—I repeat it only because I can’t put in words how monumental that was.

Here is the truth: while those other doctors were busy covering themselves, worried more about their own reputations than about my wife, Kariann was suffering. I have never seen a human being in so much pain before. Her body contorted itself, trying desperately to find any position that would lessen the torture. Her eyes, glazed and darkened, often shifted relentlessly, as if she were silently looking for any way to escape. Her hands, once her most important tools as a professional artist, now struggled to hold utensils during meals. Her only peace came in those few hours when sleep would overtake her.

She was also losing weight quickly—forty-five pounds in four months—and her muscles were atrophied from so much time in bed. There were times when I had to help her move from place to place. I tried to do as much as I could for her, but I felt so completely helpless. I would guess that there must be few things worse than seeing the person you love most in the world suffering and not being able to do anything about it.

One night in March, at the end of a particularly bad week, Kariann called me to her side.

“I want to die,” she said.

“No, honey. No.”

5.  From our unit on heroes’ journeys, we moved to a segment on loss and grief in children’s media. Prior to watching the two primary Pixar films that wrestle with this subject (Toy Story 3 and Up), I asked my students to read A.A. Milne’s The House at Pooh Corner for its moving meditation on the loss of childhood.

As I’m sure you’ll remember,* the book ends with Christopher Robin holding Pooh’s hand on the edge of the Hundred Acre Wood as they look “out over the world” (175).** That phrase is repeated several times over the course of the final chapter as a way to emphasize that CR will need to move forward. The Hundred Acre Wood and his friends will take on the new role of fond memories of childhood as he begins to grow up.

Milne writes the scene perfectly. Instead of succumbing to the overt sentimentality into which it would be so easy to lapse, he has CR hesitate, pause, even stumble as he tries to say goodbye to Pooh. Such transitions are monumental, and often ineffable, for children, so this is as honest a portrayal of childhood’s end as I’ve ever read.

Traditionally, the image of CR and Pooh looking outward together has been read as a boy saying farewell to the formative, innocent, playful past, with Pooh standing in as a metaphor for all the wonder childhood holds. My students, however, pushed this reading in new directions. What if Pooh, they argued, also represents Milne himself, or parents more generally? In other words, CR is also telling his parents that he must grow up—time cannot be stopped—but he’ll always remember the happy days when he was a child. Read this way, they showed me that The House at Pooh Corner is as much about being a parent as it is about being a child. The moment shared together by parents and their children is so brief and yet so transformational.

This, of course, made me think about our daughter.

6.  My daughter is a very smart almost-three-year-old. (Yes, I know all parents think their children are smart.) She understands and can articulate that “Mommy is sick” and “I can’t sit on Mommy’s lap today” and “When Mommy is better she’ll be able to pick me up again.” She clearly misses the physical closeness of the relationship they had before Kariann became ill. Kariann misses it too, and though she tries to give as many hugs, kisses, and snuggles as she can, it has clearly taken a toll on both of them.

As primary caregiver now, I spend a lot of time with my daughter. She is my little co-pilot as we go to the grocery store, Target, restaurants, the park, and the humane society so that she can pet the cats and dogs—something she loves to do. I’ve always wanted to be a father, and I have relished the role, so we were close even before all of this happened, but our relationship has grown even tighter in the months since. I’m glad of this; I just wish the circumstances were much different.

One evening when I was giving her a bath, I began to feel overwhelmed by everything. Kariann was having a rough night, and I was mired in worrying about the many things that were on my to-do list. I sat back for a moment and said, “I’m just not sure I can do this tonight.”

My daughter, hair full of shampoo and rubber ducky in hand, looked over at me and said, “You can do it, Daddy.” She is such a strong little girl and—at that moment—I drew my own strength from her.

In fact, the only discernible emotional or psychological effect that Kariann’s illness seems to have had on my daughter has to do with her sleeping patterns. Prior to that fateful Christmas day, she had always been a good sleeper. In fact, we’ve been very fortunate in that regard. Since, though, she has woken up and called out for me somewhere between two and seven times nearly every single night. As you can imagine, this has cut into my sleep a little bit, and she often doesn’t want anything other than to have her blanket rearranged. At times, I confess that I have succumbed to frustration because of the wake-ups, but I recognize that this is about feeling comfort and reassurance for her. In the end, it’s the least I can do.

7.  The semester went on, as semesters are wont to do. I just tried to hang in there with my students, knowing that I was only partly there with them. The rest of me was back at home with Kariann. Despite everything, she still found a way to teach her first-year writing seminar every Tuesday and Thursday morning at Rice. I would drop her off at the classroom door and pick her up again right afterwards. Even in the midst of agony, she made it a priority to help those students. Now that, folks, is courage. My wife is my hero.

Finally, though, at the end of April, the pain became too much. Kariann’s neurologist admitted her to the hospital. She was there for five days, and her sister came to help us out. I took off work so that she wouldn’t be lonely. Having once spent ten days in a hospital, mostly by myself, I know how lonely it can be. I didn’t want her to be without someone, so her sister and I were there with her as much as we could be.

Teams of neurologists, pain specialists, occupational and physical therapists, and dieticians were in the room often. Eventually, through a combination of a head-spinning number of medications, they were able to bring the pain down a notch. Few of them had seen a case of neuropathy where the patient was in as much pain as Kariann was in. To contrast the distinct lack of empathy I had witnessed from doctors early in the ordeal, I witnessed some moments of extraordinary compassion for her during this stay. I’ll always be grateful for that.

Kariann came home in less pain, but it is still debilitating a lot of the time. A biopsy taken just a few days before she went into the hospital clarified a final diagnosis—small fiber peripheral neuropathy. Most of the nerves in her arms and hands were completely blown, and some didn’t even exist any more. This is a chronic illness with no cure and only a very small chance of remission.

Suddenly, things became clear for both of us. This was not just a crisis that we could make our way through and then exit on the other side. This would be with us for a long time, maybe always.

I was a wreck the next day and had a hard time concentrating on anything else. We talked for a bit about it that night, but it was all still too big to put into words.

She tried to do so: “You can marry someone else if you want to.”

“Never,” I said.

8.  There have been moments in the classroom where students’ insights have hit so close to home that it has taken me aback. During the course of studying Up (2009) this semester, I had one of those moments.

Up is a film predominantly concerned with grief and the struggle to come to terms with loss. From the opening fifteen minutes*** to Carl’s last view of his house falling from the sky, we are confronted with the devastation of his grief for his wife Ellie as well as the messy, illogical process of grieving.

We spent an entire day in class discussing Carl’s journey floating to Paradise Falls in a house covered with balloons as an allegory for the grieving process. Students deftly analyzed the various scenes with the house as they relate to Carl’s grief. First, he travels in the house itself, consumed by all of the memories of Ellie that surround him. Later, after he lands in Paradise Falls, he attaches himself to the house so that it does not fly away. Though he is beginning to process his grief, he is still tethered to it. It takes the length of the film, and his newfound friendship with Russell (who is himself dealing with grief over his severed relationship with his father), for Carl to gain a new perspective.

The problem is that, throughout the film, Carl continually thinks he failed Ellie while she was alive. Yes, they had been happy, but they never had children, and they never made it together to Paradise Falls. It is only after he looks again at Ellie’s adventure book and turns a key page that he realizes their life together had, in fact, been the journey that she had always craved. In what is perhaps the most moving moment of the film, he sees a note from her asking him to begin a new adventure.

Some of the students who wrote papers on Up moved from this scene to an interpretation that stopped me in my tracks. Carl, they noted, comes to understand that overcoming grief is not about forgetting the past ever happened, thereby erasing what had come before. Instead, the process of grieving is meant to teach us how to fashion a new life in altered circumstances —  one that is not less meaningful, just different. The life after grief is not a shadow of what might have been, nor is it second best. The life after grief runs parallel to the life abandoned, and it is as full of beauty and tragedy as any other of the many lives we might have lived. 

9.  And so, like Carl, we are working together to turn a new page, to imagine a new life for our family—one in which we do not ignore the reality of Kariann’s illness but at the same time do not let it define our future. This is much easier to say than it is to do. How do we begin then? We are trying to make each day as good as it can possibly be without thinking too much about the bigger picture just yet. From there, I think we just keep swimming.

*Note: If you’ve never read The House at Pooh Corner, please do yourself a favor and read it as soon as possible! It’s funny and wise and sad and beautiful.

**Quotations are from the Dutton Children’s Books edition (New York: Penguin, 2007).

***Can anyone among us make it through that opening montage without getting misty?

****A version of this post is now available on medium.com. Thanks to all who have shared and commented on this essay!