Surviving Lupus, I-90 East, and a Questionable Road Trip
It was January 2016. The sun had long since went down, though it wouldn’t really matter at this point considering I couldn’t see through the wall of snow. Here I was, at a standstill on I-90 headed east, just outside of Erie, Pennsylvania. I had been on this highway many, many times before. Always heading back to Syracuse, New York, a place that had kept me captive for almost five years of graduate studies.
The first time I made the trip was five years back. I was 22, fresh out of college, feeling invigorated about the possibilities that stretched before me. I was leaving my family and friends behind and starting fresh, embarking on a dream that was all my own. Right after graduation, I’d recently purchased a used Chrysler Sebring and, while not perfect, it gave me the freedom to move as I wish, to pack up my things and drive east. I felt jittery and giddy that first drive, not sure what the future held. This drive was a mark of freedom, of the start of my new life. But, as the years went on, and as I became more disillusioned with graduate school, this drive lost its luster. It was a necessary chore that I must tackle two to three times a year if I was to maintain a connection to the folks I knew back home and the life I was living in Syracuse. While boring, it was an easy enough chore to tackle. It became rote. I knew the exact mile markers at which traffic tended to get backed up. How to anticipate the twists and turns of the road. Where exactly to stop and get the cheapest gas. It was tedious, but simple enough.
This return trip, though, was not going as smoothly as the ones before. Squinting through the blizzard, it seemed like it was time to finally admit that this whole trip was ill-conceived. But, before I could fully unpack everything that had led me to this point, I first had to find a place to pull off for the night.
I could barely see the taillights in front of me, nor where the edges of the highway stopped and started. After literal hours of creeping toward Erie, I finally got to an exit sign. I couldn’t read the sign to ensure there would be hotels at this stop but, knowing Erie, I tried my luck. My Sebring, now on its last leg, scooted down the offramp, sliding as it went.
To my immense relief, there was a hotel right off the exit. I tried to turn in but the driveway had been freshly plowed shut, snow caked five feet high. Much too high for my pitiful little car. I crept down the road as the visibility continued to worsen. A second hotel appeared to the left. I skidded to a halt on the slick streets and pulled in. By the grace of God, I swung my car into the single open spot. Of course, the tires slid on the way in and I nicked the car next door ever so gently. But, I made it.
I heaved a sigh of relief and scurried inside. Despite the long line, I was able to secure one of the last rooms. Room key in hand, I now faced the daunting task of bringing all my things inside. Whereas this would normally not be a trying task, I had recently come to realize that “normal” tasks were quite a bit more formidable than they used to be. If anything, the last four weeks had truly shown me that it was time to put arrogance aside and accept my new reality.
So, you see, about three months ago I had been diagnosed with lupus, a condition in which your immune system attacks your body rather than protect it. And, about a month ago, I decided it was a good idea to take a cross-country road trip over winter break.
I was currently in my last year of a PhD program in Syracuse. I was so sick of being in this city. It was forever snowing. Always grey. I was surrounded by a bunch of academics forever one-upping each other (myself included). I had a precious four weeks of freedom, and I was going to use it the same way I’ve always used my time off: getting the hell out of town and cramming in as much fun as possible before returning to the daily grind of doctoral studies. As is the case with most under-employed graduate students in the humanities, though, I was not living in the same place as most of my loved ones and I needed to be creative with the financial side of any travel.
I was determined to make it happen, though. I’d had a hard fall; I’d gotten this diagnosis and had been managing a rotating slew of appointments and trips to the pharmacy on top of everything else. I had been stuck inside the walls of my well-loved but run-down apartment. My Syracuse friends had been incredibly supportive but it seemed especially important to see the rest of my people. But, they were spread far and wide. My family lived in Michigan. My fiancé Joe lived in Oakland, California. My roommate was getting married in Minnesota.
So, I planned out the most efficient use of the four weeks I could think of: I would drive the nine hours to Michigan, spend two weeks seeing my family and friends. I would then leave my car at my dad’s and fly to Minnesota for the wedding (for which I was the “clipboard person” in charge of day-of organization). Joe would meet me there and we’d continue back to California together and spend two weeks in Oakland. Then, I’d fly back to Michigan on Saturday, pick up my car, drive back to Syracuse on Sunday, arrive in time for classes to start on Monday. Easy peasy. I’d done versions of this many times before.
But, from the time that I booked my tickets and planned my route, things had devolved. When diagnosed back in September, I was told that it’d take three months for my medicine to kick in and start fully working. I just needed to get through this fall, they said, and then it’d be smooth sailing. Great. I did the math. I’ll be in perfect shape for this winter holiday. So, mid-December, I loaded up the Sebring and set off for my dad’s.
Four weeks ago, back when I was just starting out and driving westbound on I-90, it was already becoming clear that something was off. I had to stop every hour to stand and stretch because my knees were in an extreme amount of pain. I had to use the bathroom a lot more than usual. My fingers would turn white whenever I had to pump gas. But, I shook off the worries and made it back to Michigan. I had a plan, and I was determined to keep it.
While in Michigan, I tried to do as much as I could despite my nagging exhaustion and persistent pain: I went to holiday parties, to meals with my sister, to a play with my mom, and to a sleepover with my college pals. I prepped for my spring class. I tried to exercise each day despite the fact that I was often incredibly light headed when standing up. I ignored the fact that I woke up every night with feverish chills. Everything was normal, I told everyone. I just needed some extra sleep.
Then, it was time to fly to Minnesota. Unfortunately, I’d got a bad case of bronchitis sometime in Michigan, probably due to my low immune system or sick kids at a holiday party or a combination thereof. By the time Joe and I met up in Minnesota, my voice was almost completely gone. Not to worry, I told the bride-to-be, I am still incredibly up for being the day-of-coordinator. She tried to talk me out of it but I insisted. I was strong. I’ve got this.
In the shower that night, preparing for the rehearsal dinner, my hair started to come out in handfuls. I wasn’t as helpful as I could have been, but the wedding went off without a hitch.
Then, it was off to California. I had a lot of grand plans for my time there. Joe and I would hit up some of our favorite Oakland spots. I’d get to run my favorite three-mile loop at Lake Merritt. That’s not how things went down, though. I was getting woozier and woozier whenever I stood up for too long. I couldn’t get off the couch without feeling it in every single joint. Every day I was sweeping piles of hair off the bathroom floor.
It was becoming more and more clear that their three-month-meds prediction wasn’t quite coming true but, despite that, I was ready to fly back to Michigan, get my car, and drive back to Syracuse. I had a plan. I’m not a person who breaks plans. I had new students, new appointments, a new semester, and a stalled dissertation waiting for me in Syracuse.
There were many moments along this four-week vacation where I should have stopped and thought: is now the time to turn back? To bail on a few obligations? To take this four weeks to rest instead? The last such moment was on Sunday morning. I woke up in Michigan, only just a bit later than I had planned. My flight from California had gotten in late the night before but I was ready to go. I glanced at my phone. The weather report wasn’t great. A blizzard was set to hit along I-90 by 4 or 5 pm. Not a problem, I said. I’ll get on the road early. Beat the snow. My dad encouraged me to wait it out an extra day and cancel my Monday class. I wouldn’t hear of it.
I loaded the Sebring back up. I was off!
And, then I wasn’t. Outside of Erie, traffic was beginning to slow. The flakes were getting heavier. I briefly considered stopping off for the night. Nah, I thought. I’ve got this. Just a few miles further, it became incredibly clear that I did not have this. But, at that point, I was so far along my series of questionable decisions there was nothing left to do but ride it out until I could finally pull off. So, I made it to the hotel, eventually mustered the energy to bring my things inside, and slept for a solid twelve hours. And, when I re-emerged the next morning, the sun had melted most of the snow. The highways were clear. It was time to go. Syracuse and the final five hours of I-90 East were waiting.
Eventually, I did make it back to town, back to this city that I had spent so much energy fleeing. I ended up having to cancel my Monday morning class but I was back in time to make it to the doctor’s appointment I had scheduled for that afternoon. My doctor took one look at me and immediately determined something was very wrong. The medicine wasn’t working. She ran a battery of tests and badgered the specialist to look into my case immediately. They suspected that the lupus had begun attacking my kidneys but they couldn’t be sure. Before they could treat me, they needed proof. The treatment was apparently so destructive to your body that they need to biopsy your kidney to be one-hundred-percent-certain before they’re legally allowed to administer it.
So, within three days, I was to be hospitalized for the biopsy. Despite the fact that I had very recently been made to realize that I was not the best judge of my limitations, I was determined to not let this hospital overnight disrupt my schedule. The hospital was near campus, about a mile away. I planned to just walk there in the morning, check myself in. I’d be discharged the next morning in time to teach my class. Upon hearing my plan to walk to the hospital in the morning, my roommate offered to drive me in. I turned her down twice before I realized that it felt scary to go by myself. You can just drop me off, I said. I can walk straight in. She insisted on staying with me through the whole procedure, for which I was incredibly grateful. Throughout that evening, waves of friends came to visit me. I had quite a bit of morphine pulsing through my system, so I don’t remember too much of that day, but I do remember feeling so supported, so loved, so held. The next morning, another friend arrived to pick me up and take me home. I’ll just go home and take a quick nap before class, I told her. It was only after my quick nap turned into a five hour snooze that I realized I probably wasn’t up for in-class instruction.
Ultimately, I did get through that semester. There were some ups and downs. I canceled class a few more times but I did ultimately finish the course. My students still learned something, I’m sure. I didn’t finish my dissertation that spring as I had planned, but I made some significant progress. I lost the rest of my hair. It started to grow back. I lost some weight. I quickly gained it back. But, most importantly, I survived.
Throughout those final spring months in Syracuse, I tried to get more comfortable with giving myself time to rest. I still wasn’t great at it but, bit by bit, I learned more and more that it’s okay to say no, it’s okay to cancel plans, it’s okay to accept help. In May of that year, my dad drove out and helped me pack up my apartment. I sold off most of my stuff, including my poor little Sebring, and moved to California to live with Joe.
While I was glad to finally reunite with him and get the hell out of Syracuse, I felt a huge pang leaving that city behind. It was a city to which I’ve spent many, many hours driving back and forth. A city in which I spent most of my 20s. A city in which I got sick, and also began to heal. A city where I truly learned to think critically about the world around me. It’s also a city where I found friends who, despite my protests, did everything in their power to keep me safe.
These days, Joe and I are settled in Portland, Oregon. We live in a sweet little condo with a floorplan that looks almost exactly like that of my old Syracuse apartment. I spend a lot of time reading and resting. My health is under control and I get regular blood work done to make sure it stays that way. While the majority of my 20s were defined by constantly “being on the go,” I’ve been trying to live my 30s at a slower pace. Taking my time, enjoying the little things. I’m still an avid planner unwilling to let go of her schedule, but I’m working on it.
I haven’t been back to Syracuse in quite a while. One day, I’m sure I’ll venture back, mostly because so many of the people I love still live there. While I will undoubtedly journey by plane, because long gone are the days where I will drive cross country, a small part of me will always miss that long stretch of I-90 East that, for so many years, carried me to a place I was determined to leave.
