Chronic Illness Management Specialist

(Demolition of Montgomery Hall, Portland State University, September 24, 2026. Photo from the NW Examiner.)

It has always been a day of mourning. I'd see "Sep 25" in the upper right corner of my computer and remember that day in 2001, sitting in a small, square, fluorescently-lit office in Cramer Hall typing out my resignation letter. Remember the night before curled up on the floor of my dorm room, too weak to climb the ladder of my loft bed, feeling the familiar rawness in my throat, the limpness permeating my limbs, the sickly chill that said I was going to be too ill to teach the next day, the first day of the school year. Remember the shock upon hearing my therapist two weeks earlier say "it's time we talked about you going on disability," like a frigid riptide from childhood days on the Oregon coast that left me snorting, choking, and fighting against its pull. Remember the teary walk to the Aging and Disability Services office after handing in my resignation, more fluorescent lights, a SNAP EBT card, and then a further walk to the Social Security office. Remember standing at a window answering questions while a woman typed my answers into a computer, told me I had not worked enough to be eligible for Social Security Disability Insurance but there was the welfare program, Supplemental Security Income, that I could apply for. She handed me the 23-page application and told me it would be a minimum of 4-6 months before I would hear back. In fact, I would not get my first SSI check for 20 months---and I was lucky.

And so began my new life as a disabled welfare queen. 

It's remarkable how much work is involved in being sick. On that day of feeling so ill I had to drag myself across the street to Cramer Hall to let my professor know I was too ill to teach any longer, then over to the University Studies office to resign, then the four blocks to the ADS office, then the ten blocks to the Social Security office, then the fifteen blocks back to my dorm room to finally collapse into a heap on the makeshift nest under my loft bed and weep. It took weeks to fill out all those open-ended questions on the SSI application. And so many medical appointments. So many documents to find and copy and review. The paperwork would never end. Even now, a quarter of century later, there is the annual SNAP "check-in" with full application process every two years, the annual Section 8 housing recertification, the annual Low Income Home Energy Assistance program application, the constant refills to remember and coordinate, the MyChart and Follow My Health notifications to follow. Of course, there are also the daily notes to take about symptoms and medications and food/water intake and step counts and time out of bed and sleep and hot flashes and vitals. It's why I never tell people that I don't work. I don't even say "I'm on disability." I answer that question of "what do you do?" or "occupation" with "Chronic Illness Management Specialist." 

But that's not the job I wanted, the occupation I dreamed of. I wanted to be a professor. And as I sat that day under the fluorescent lights on one of those molded plastic seats in the Aging and Disability Services office waiting for my SNAP card, I remembered sitting in similar offices with the same fluorescent lights and molded plastic seats with my mom and younger sister and brother waiting for food stamps or Section 8 or Aid to Families with Dependent Children. I'm not supposed to be back here! Why has this happened? I felt nothing but rage that all my hard work, all the years of Arabic, French, Hebrew, and Farsi, all those early mornings taking the bus to campus to study before class, all that careful budgeting, the scholarships and grad school applications, the flashcards--all of it had led me right back to sitting in the same molded plastic seats under the same fluorescent lights. 

And so I mourned as I adjusted to my new job. Two years into this new line of work, I began to improve. I assumed my illness, which had finally been diagnosed as ME/CFS, was receding. I could now get back the life I was supposed to have. I returned to grad school. I applied for an editorial fellowship. I visited a PhD program in the UK and met my Long Distance Limey after 15 months of online chatting. I worked on my MA thesis. Because I would only keep getting better, right? Improvement and redemption were the way it was supposed to be. The way it would remain. 

The following year there was little work on my thesis as I suffered through post-exertional malaise and food poisoning and bizarre UTIs. But then came the euphoria of Neurontin in the late autumn. My capacity to think and write and walk to class or clinic improved again. Except we kept needing to increase the dose. By the spring of 2005 we hit the dosage ceiling. And then came the slide downwards. The struggle to read. The exertion of trying to write. The inability to get across campus. I was now home-bound. I needed case management from the county and a caregiver to do my laundry. Academia slipped from my grasp forever. There was only vocational training in Chronic Illness Management. 

The grief has dulled over the years as time has done its work. But the ache is always there. I miss the stimulation of the classroom. Showing students a new way to look at the world. Learning so much as I ingested the knowledge I would need to feed them. I even miss grading papers. Though often tedious, it could also be an enlightening window into world views of my students. 

I especially loved my job working in University Studies, Portland State University's interdisciplinary general education program that sought to integrate and connect knowledge. As a graduate assistant, I was assigned to a diverse array of classes where I taught three to six small group sessions a week supplementing the main lecture sessions. My first year was a Freshman Inquiry course, Human/Nature, that sought to look at what it means to be human and the relationship of humans with nature through history, religion, biology, sociology, linguistics, and art. There were the one-term Sophomore Inquiry classes like Framing the Two Cultures which considered the relationship between science and the humanities. Or Natural Science Inquiry where students learned the mechanics of how science acquires and uses knowledge by participating in an ongoing study of transportation patterns (okay, I'm not sure if those specific students actually did learn much as it was summer, there were only eight of them, and every single one was completely checked out). The class I was to work with when I had to quit was known as a Transfer Transition course for those transferring from community college or other schools. Its theme was Frankenstein and explored Mary Shelley and her novel, humanity and monstrosity, and the good and bad of scientific progress. So cool. 

The spring of 2001 I was assigned to work with my History department advisor teaching the Introduction to the Middle East Sophomore Inquiry. Jon was not the most ambitious professor and, thus, quite happy to let me redesign his syllabus to include literary modules. Novels and short stories enflesh people and culture, make them breathe in ways that lectures on history and political economy never can. Several years later I found myself sitting in the waiting room at the free acupuncture clinic under yet more fluorescent lights, sitting in more plastic chairs with one of my students from that course. I know this is going to sound too perfect, too much like the sort of anecdote one reads in some bullshit promotional brochure, but he told me that his brother had been killed on September 11th. "I'm so glad I had that class before this happened. I would so hate Muslims right now if I hadn't." At the time it reopened that wound of anguish and frustration that I could no longer teach. Now I simply feel gratitude that for one flash of time I got to be a nano-particle in making the world slightly less awful. 

Life is impermanent the Buddhists say. Illness ended my life in academia. University Studies is being eliminated due to budget cuts. The dorm in which I nested under my loft bed was demolished yesterday. The Buddhists also say that we suffer because we grasp. We hold too tightly to that which is impermanent. Now that I am reading and writing again, my emotional fingers want to grip my returned cognition with every psychic muscle I have. Yet I know enough from losing it once and now watching my mother dissolve into dementia that it will one day leave again. I hope my awareness of that will make it less painful when it does. I try to remember that everything is fleeting. Even mourning.