Writing and Teaching With a Terminal Illness

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By Peter Kaufman

Editor’s Note: After reading his blog post "A Sociology of My Death," we asked Peter Kaufman to write for The Chronicle on the professional challenges of working in academe with a terminal illness. Kaufman submitted this essay on November 5, and he died on November 19, before it could be published.

 

Recently, I’ve found myself publishing a lot on Twitter. I’m mostly writing what I call "microburst" essays although I did also publish my first poem. Don’t be skeptical about publishing via tweets — it’s great! The reviews come in super quick, the editors rarely reject your work (unless you have hateful and abusive content), and the turnaround time is instant.

I realize some academics will bemoan the low (OK, nonexistent) impact factor of Twitter, and cringe at the thought of being published alongside the likes of Kim Kardashian, Justin Bieber, and Donald Trump. But for academics like me, Twitter just may be the perfect place. So, you may be wondering, what kind of academic am I? Well, I’m a tenured, full professor of sociology at a state college in New York. I just published my first book and I have numerous peer-reviewed publications to my name. I also have a terminal illness: Stage IV lung cancer.

I was diagnosed in June 2017, and since then, I have been making my way through academia with the specter of death hanging over my head. Not fun. But I’ve learned a few things that might be useful for other faculty members who suddenly find themselves on this unfortunate health journey. Granted, each case is different. But I imagine the three themes discussed here should be applicable to most any academic who is dealing with a serious illness while teaching.

Do your homework, or have someone do it for you. I know how difficult it is to have a terminal illness, so I hate the idea of giving out homework. But there is so much useful health-related information — not to mention potential benefits — that can be gleaned from the websites of faculty unions, campus HR offices, insurance companies, professional organizations, and the government (FMLA), it’s essential to spend some time reading those sites.

One especially important point to keep in mind: You cannot leave it up to the professionals of those organizations to know about your particular illness, or even to know generally about handling a terminal illness on the job. This is not meant as a slight — the people I’ve worked with in those various groups have been competent and supportive. But they may not have all the answers. The number of terminal-illness cases to come through their offices are limited, so they may be learning on the job with you.

Soon after my diagnosis I began the painstaking task of reading through my insurance benefits. Thankfully, I took the time to do this because my insurance plan has an incredible benefits program specifically for cancer patients. The only catch is that you do not receive it automatically. You must enroll. After that, the program is free.

I would like to think that someone would have told me about this program eventually. But I can imagine a scenario where a new administrator who just wasn’t familiar with this specialized and unique aspect of our insurance plan could have been assigned to my case. That would have been a travesty because, through this program, I have gained access to some of the most advanced cancer care in the world — with zero out-of-pocket costs.

If the prospect of this sort of homework overwhelms you, don’t forget you can have others do it for you. Just as you might ask colleagues to cover classes or fill in at committee meetings when you need to attend medical appointments, so too, might you ask someone to research health benefits on your behalf. As a start, I suggest having a detail-oriented friend prepare a concise summary of the Family Medical Leave Act (FMLA). This gift will be especially appreciated by both giver and receiver alike.

Expect the unexpected, personally and professionally. There is nothing linear about having a terminal illness. There are stops and starts, pulls and pushes, detours and dead ends. Recognizing the chaotic and oftentimes unpredictable nature of a terminal illness is crucial for you and your institution. You should always have a backup plan or an escape route to help you at least try to deal with the myriad issues that may arise. Let me offer an example.

When I went back to teaching a full load after treatment of my cancer, my chair made sure that the classes were ones that could easily be covered by other members of the department should I be unable to teach on a particular day. I was slotted to teach some required courses and an elective for which the topics could have been seamlessly swapped out. This planning paid off last summer when my tumors started growing again and I decided there was just too much uncertainty for me to start the fall semester. Instead of scrambling to find instructors or having to cancel sections, the chair was prepared for this possibility and was able to find instructors to pick up these commonly taught courses.

Expecting the unexpected is also something that you must be aware of for yourself. I received my diagnosis in summer 2017 and went back to the classroom in fall 2017. I walked into class that first day with the full expectation that I would tell students about my cancer and use it as a teachable moment, to the extent that I could.

To begin that class, I asked students to introduce themselves by explaining their most memorable educational experience. About midway through, one student told a tragically sad story about a beloved high-school teacher who committed suicide because of an advanced cancer diagnosis. A chill went through my body, and if the class had their attention on me, I’m sure they would have seen the shaken look on my face. At that point, quite unexpectedly, I decided not to disclose my situation — a decision I maintained until my essay came out in September 2018.

When I did disclose my cancer to students, alumni, and the wider campus community, I was met with an outpouring of love and support. It was incredibly touching. But some of the commentary veered toward eulogizing and I didn’t know what to make of that. People spoke of me in the past tense. I know their intentions were purely good, but it was not the reaction I anticipated, and it was just another layer of "stuff" (that’s the scientific term) that I had to navigate.

Learn to adapt. A terminal illness keeps you on your toes even if it keeps you off your feet. Because new developments — both good and bad — are always arising, it’s necessary to be flexible and be willing to change direction when necessary. This open mind-set is important not only for you but for your chair, dean, and other administrators.

I am fortunate that everyone at my college has not only been supportive, but they have also been willing to adapt to the twists and turns of my cancer journey. The current semester offers a perfect illustration.

Although it didn’t make sense for me to teach this semester, I am still capable of working and I don’t want to go out on sick leave. I met with my chair and the dean, and we identified a set of alternative tasks that would be equivalent to my course load (extra student advising and assisting at the Faculty Development Center). This plan sounded good until I had more medical issues at the beginning of the semester that required that we further adapt our adaptive plan.

A few weeks into the semester, I decided it was best for me to claim one sick day a week and work at 80 percent full time. This decision affected the mentoring work I was slated to do at the center because I would have less time allocated to meet with new faculty members. Fortunately, the center’s director was accommodating, and her flexibility gave me one less cause of worry. Her compassionate response should not be ignored. Reducing work-related stress is paramount when dealing with a terminal illness since there is so much stress in other areas of your life.

This brings me back to Twitter. For months, I had been fretting about how I could move forward as a scholar with a terminal illness looming overhead. For me, Twitter has become a way to write, think, and engage with other academics. As much as I would like to exchange ideas at a professional conference, it’s just not prudent for me to buy plane tickets, reserve a hotel, and preregister for a conference that’s either far in the future or far away from my medical team.

The bottom line is that I just don’t know how long I have left. I still want to be active in my discipline, but is there time for me to write another book? Can I wait for journal reviews to come in? Should I just start my own blog? Or do I tweet? For now, Twitter, strangely, has been my adaptive answer. It’s not perfect, and it’s not for everyone, but it has filled the void for me. That is, until I was asked to write this article.

Peter Kaufman was a professor of sociology at the State University of New York at New Paltz. His book, written with Janine Schipper, Teaching with Compassion: An Educator’s Oath to Teach From the Heart, was published in July 2018 by Rowman & Littlefield.

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