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!

Advertisements

28 thoughts on “The Grief of Pain

  1. Thank you Josh !! You have said it well. I have been in severe daily pain for over 11 years. Just this year I have stopped searching for cause and cure. The constant Drs appts and surgeries etc etc etc had burned me out, as well as drastically changed my view of the Medical profession. Too many think MD means Medical Diety. Instead they are more like Body Mechanics and there is still so very much they don’t know. Just wish they would admit it instead of insulting the sufferer in front of them. I may pick up the quest for answers at some point, but, right now, I need to rest, to do as much as is possible, and to stop grieving and look forward to what I can do.

    Example, a cookout party last Sun. nite took me two days in bed to recover from. That bothers me, but doesn’t hurt and enrage me as much as it used to. I am growing to be more accepting, to acknowledge the costs of certain activities, enjoy them, and accept the consequences.

    I wish your family all the best and am sorry you have joined the world of chronic pain. I was shocked when I learned just how very large that world is !!
    Blessings,
    Kat

  2. Josh, I am sorry for Kariann’s pain.

    We are, each one of us, a hero in some way. That’s why the hero has a thousand faces. Not a thousand as one comma three zeros, but a thousand as more than one. There are a few heroes in your house.

    P.S. I’m Melanie from CSU in 2006/7. Chelsea shared your link, and I’m glad I came over.

  3. Josh, thank you for these moving and thoughtful reflections. Although we haven’t met, I feel a sense of connection…my daughter Madeleine just finished her first year at Rice (architecture major), and I have a similar position to yours at Austin College in Sherman, TX (My title is Digital Pedagogy Designer, and I also teach part-time there and online for Creighton University). I offer you prayers for Kariann and your family, and wishes and hopes for healing. I will definitely read House at Pooh Corner (have never read the book, only know the song by Kenny Loggins). Your students are most fortunate to have such a wise teacher as yourself.

    I also appreciate the teaching and learning resources that you share with the wider community…especially the deLange conference materials and the recent conversations with Rice deans on the future of higher education. All the best going forward.

    • Thank you so much, Morris! We should talk at some point soon about teaching and learning. I enjoy our interactions on Twitter, and I appreciate your kind words here.

  4. Dear Josh,

    Thank you for whatever courage it took you to write this post. I don’t have the words to convey just how much your transparency touched me, but I’m giving it a shot, regardless.

    First off, I’m so sorry to hear about Kariann and will join others in praying for her and your family. I was astonished when I got to the part about her continuing to teach throughout everything. A superhero, indeed.

    As I read your story, I remembered seeing all your Tweets from your Pixar class this semester, thinking about how difficult navigating all of that must have been. I hope there were times that it proved to be a healthy distraction for you.

    I wish your tale ended with an “and they lived happily ever after.” Sounds like your family is discovering a new normal… but it truly sounds agonizing for the whole lot of you. May the doctors at least find the wisdom to steer things toward a more tolerable status quo.

    With gratitude for your authenticity in sharing this part of your life,

    Bonni

    * Kenny Loggin’s doing House at Pooh Corner is so good. I think I’m going to have to re-read the book.

    *** RE: opening montage – My husband and I watched it a few years after it had come out. I don’t know how I managed to miss all the spoilers that were inevitably lingering. It was one of the times I wish I would have known going in. We couldn’t stop bawling through the remainder of the movie, unable to recover from the shocking start…

  5. God bless. I have been living with chronic pain since age 14. In the beginning there’s a feeling of helplessness, like being a wounded animal cowering with no recourse. After letting go of the idea that a doctor can play the role of your knight in shining armor and come to your rescue, you start to listen to your body and find out there are actually things you can do, independently, to modify and minimize your pain. In this way, you have already been through the worst two chapters: 1st chapter being the one where you know absolutely no recourse to reduce pain levels, and 2nd chapter being acceptance that your illness is chronic. It will get better from here. Kariann will slowly discover lifestyle changes, over-the-counter remedies, and possibly a sustainable medication regimen. Over time she will learn to live a “new normal” which does not consist so much of daily suffering, as it does of daily hoops to jump through, which push pain into the background. It is a slow process, but there is life on the other side. I am a couple weeks away from my 44th birthday. Through that pain I have married, completed an education, had a career, gave birth to two bio kids and also raised four foster kids from their teen years into adulthood. 30 years ago, I was convinced that when I turned 18, I would have to kill myself because the pain would prevent me from being self-supporting. Obviously, things changed. Kariann’s quality of life, and your family’s quality of life, will continue to improve.

    • Thank you so much for commenting, Karen. This is some of the most hopeful advice that we’ve received yet. I truly appreciate your perspective, and I wish you all the best!

  6. Josh, this is so moving. I especially relate to your thoughts on grief and refashioning one’s life while staying in the moment. Thank you for your wisdom. You, Kariann and Lucy will be on my mind and in my heart.

  7. Pingback: Vulnerability in our teaching

  8. Pingback: Recommended reads #54 | Small Pond Science

  9. Pingback: Linkfest: 9 June 2015 | Tea 'N' Mango Juice

  10. Josh and Kariann, Reading this story was like reading the story of my own life, my own struggle with chronic pain, my own loss of self, my own selfless and giving husband. I am an academic with a chronic pain condition so severe that I sometimes live at a 9 on the pain scale. It sounds like Kariann lives there too. I’m sorry for that, I wish that no one would ever had to feel the pain I feel, and I know that I am one of the lucky ones, a rather sobering thought. I hate that your doctors are acting like my doctors have always acted. Frankly I’m horrified at the state of our medical community. That said, I’ve come through some of the worst of my pain, and built really helpful life systems that make my academic life possible despite the pain. I have suggestions about living in pain if you or Kariann would like to talk to me at any point. I’ve lived with my condition for 15 years now and know the loneliness of a body failing around you, and the ways that can be dealt with. Please feel free to contact me (I’m not sure if you are able to see my email address that I’m giving to the comment form below, but if not I’ll figure out a way to pass it to you if you are interested.) Several suggestions for right now, some you may have thought of, but these have helped me: 1) Read to Kariann when she is in her worst moments of pain. As an academic her mind is going to be her safest place, read to her from new books in her discipline, even if she can’t fully concentrate on all of what you are reading. 2) Read her stories, bring you daughter into her bedroom and read your night time stories while your daughter lays next to mommy. That will help her get to sleep better and end up with her waking up a lot less often. Your daughter is afraid, because she can tell her mom is hurting and she doesn’t know why or how to help her, increasing the amount of time she gets to be in the same room with her mom will help, even if Kariann is just resting and not able to provide much interaction. 3) Take Kariann, your daughter and yourself to family therapy. There are people who deal just with chronic pain cases, and frankly after years and years of resisting doing this myself, I can tell you that it makes all the difference in the world. Right now you are both grieving. Your daughter is unsure and you are aching as you watch the person you love most in the world go through hell. You need tools for dealing with this all mentally. Kariann needs tools for dealing with the guilt of watching you suffer, and the guilt of motherhood limited by illness. She needs tools for dealing with the worst pain days, and for dealing with the days when the pain is distant enough that the depression seeps in. Please do go to see someone. Make sure you guys are mentally strong enough to deal with everything living a life in pain can mean. 4) Learn to laugh at the pain. This is hard, but its possible. Crack jokes. Do silly things. If you have no artistic ability, offer to help your wife paint or draw and have her tell you what to do with your hands, laugh at the results. Make the most serious and horrible parts of your situation funny and sardonic. This is my preferred method of escapism. 5) Create community. Those of us who are academics and chronic pain sufferers are constantly worried about what other people think of us, and if we will be chucked out of our jobs or our professions because we are too “weak”. However, together we can really stop feeling so alone, we can write together, work together and create a community of strong, (if painful) camaraderie. I hope even a little bit of that was helpful. I wish you guys luck and feel free to reach out. I’ve been where you are and it is very possible to get through and get back to loving life. I do, even when I hurt, even when I need to stop and rest. Best, KM

  11. WE LOVE YOU BOTH!!!!
    I can’t imagine a life in pain, but life is a gift and every moment deserves to be cherished. Focus on the silver lining and that beautiful girl you two have together. Kariann is one of the most inspiring professors I had while working towards my degree I owe so much of my found talent and quality in painting to her! ❤

  12. Pingback: Teaching lessons from Pixar

  13. Pingback: #065: Teaching lessons from Pixar [PODCAST]

  14. Pingback: #051: Vulnerability in our teaching [PODCAST]

  15. Josh,
    My daughter Keri Snyder went to Northwest with Kariann. I remember her well.
    I came across your blog and was brought to tears. Kari reminds me a lot of me. I was diagnosed with Fibromyalgia at age 36. I know the struggles a family goes thru when dealing with chronic illness. I want you to know my thoughts and prayers are with you and your family. Special love to Kari from one mother to another. I get it. …

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s