the corner room

Last May, Mike and I moved into a new apartment. At the time, we had lived on the second floor of a 1916 duplex for nearly nine years. The place had seen a lot in that time. When we moved in, in the fall of 2003, I was still able to work (about 15 hours a week, mostly from home). I was able to do my own grocery shopping, to occasionally see friends for lunch or dinner, or to go with Mike to a movie. I was well enough to paint two rooms in our then new place–slowly, with lots of breaks–and to work in the garden. I did all my own cooking, laundry, and self-care. Although I wasn’t well enough to leave the house every day, I was fairly independent, able to drive short distances and fend for myself in many ways.

In 2004, Mike became sick, and was soon after diagnosed with ME/CFS, too. Just a year and a half later, I experienced a major setback that removed the remainder of my independence. From 2006 until May, 2012, I was only able to leave the house for the very occasional short car ride and, once, for an appointment with a doctor. My life was constricted primarily to one room, to one couch. And so it remained, by necessity, for six years.

But in early 2012, we received an unexpected piece of news. The city of Saint Paul was planning a massive, six-month, 12-hour-a-day construction project in our neighborhood. The project was slated to begin in May and would involve the total removal of our street and sidewalks in order to replace the neighborhood’s 100-year-old water pipes. Our house was in the center of the planned construction area.

At the time, I was about six months into treatment for hyperacusis, a complex and debilitating condition that causes severe sensitivity to sound and can last for years. My treatment was promising, but needed to be taken slowly and carefully. Even a few days of construction noise could have caused a severe setback. But there were other things to be concerned about, too. People with ME/CFS need to live in a controlled environment in order to function at their best. Like so many others with the disease, I am hypersensitive to stimuli of all kinds: light and sound, touch and smell/chemicals, the vibration from riding in a car, or the input from a busy computer screen. The disease also makes it difficult for me to adapt to changes, even small ones, without experiencing a crash or setback. Keeping a routine in all aspects of my life is essential to keeping me feeling my best. Moving me to a new apartment would be a risk, but staying through six months of pounding, vibrating, roaring, ear-splitting construction was riskier. We had no choice but to move.

Preparations for the move were in full swing by March, and had I not recently experienced some small but significant improvements in stamina, mobility, cognition, and ability to encounter stress without setbacks, I cannot imagine how the move would have happened. But, I was lucky. Improved physical and mental functioning not only allowed me to process the enormity of the move and all that it would entail, but to participate in it. Over time, and with careful pacing of both eyes and energy, I packed up most of our belongings myself.

Although it felt good to be able to help, my contribution to the move was minor. There was a huge amount of work to do, from finding a new apartment that met our many needs (quiet neighborhood, quiet neighbors, hardwood floors rather than carpet, which can off-gas harmful chemicals, etc.) to carefully planning every aspect of the move itself in order to minimize any post-move downturn in my health. My dad, who was then living full time in Saint Paul in order to help take care of me, took on the brunt of the work, hunting daily for a new apartment and overseeing the many details of the move, large and small. My mom, who still teaches full time, came up frequently from Philadelphia. Together, they worked with Mike and my brothers (who would be traveling to Saint Paul from their respective homes in Baltimore and Berlin for moving day) to plan and prepare.

With construction scheduled to begin on May 1st, we were all relieved when, in late March, a suitable apartment was found, just six blocks north of our old one and in a similar size and almost identical layout (complete with a corresponding “corner room”). As our focus turned from apartment-hunting to preparing the new apartment for two tenants with chemical sensitivities, friends helped wash it from top to bottom with chemical-free cleaning products.

By the end of April, we were ready. The many weeks of hard work by Mike, my family, and our friends had paid off. Hours of extensive planning were about to be put into practice.

For me, moving day began like any other day, except that, after waking at my normal hour, instead of putting on sweatpants and slippers, I put on jeans and sneakers. Once dressed I retrieved my breakfast (pre-made by Mike) from the fridge and retreated to my corner room couch to eat and wait. My once crowded room, the one I had spent so many hours of every day in, was almost empty, cleared of boxes the night before. Once settled with the door closed, I alerted Mike and my family that I was ready. While I was in that back room, safely guarded from loud noises and the bustle of moving, Mike, my brothers, and a few friends carefully moved nearly everything out of the front of the apartment. I barely heard a thing. Next, my brothers came to get me.

The question of exactly how to physically move me to the new apartment had been discussed and researched extensively. My family even practiced their plan in advance, with my mom acting as my stand-in. The key was to get me from one quiet corner room to the other with minimal physical, visual and audio input, and minimal stress. With the front of the apartment now cleared of people and furniture, I was pushed in a wheelchair from my corner room to the front door, and from the building to the car, a rented SUV that would minimize vibrations on the road. I wore a mask over my eyes and carried noise-cancelling headphones to minimize any input that could add to post-move fallout. On the 5-minute drive, Peter kept me relaxed and entertained with stories of eating crickets in Mexico, while Nick drove. They had prepared a makeshift bed on the backseat of the car for me to lie down on, but I was so excited to be in a car for the first time in almost two years that I sat up the whole way, temporarily swapping my eye mask for dark glasses, so I could look out at the world passing by.

When we reached the new apartment building, also a duplex, my brothers carried me, one on each side of the wheelchair, up the two flights of steps. At the top, I was whisked back to my new bedroom. “Welcome home,” I remember Peter saying. The bed, which had been moved that morning while I was in my now former corner room, had been freshly made by my mother during our trip over. I shut the door and lay down in the half darkness, in need of rest, but exhilarated to be in the new space. the room smelled clean and faintly of lemon. the opaque blinds had been pulled down to protect my eyes, but I could make out yellow walls and warm wood molding. As the bustle of moving continued in the front of the new apartment, I lay still, listening to the faraway murmur of voices and the gentle whirr of the air filter.

Our move was a success, thanks to exhaustive preparation and help from family and friends. My recovery was brief, relatively speaking. I was back to my pre-move state in about two weeks, a marked contrast to the 8-week recovery I experienced after a one-hour excursion to a doctor two years earlier, in 2010. I believe that the fallout I experienced, minor as it was, was mainly due to the inevitable stress of moving. Stress and ME/CFS don’t mix well, after all. I also had to wrestle with anxiety about leaving a place I had lived in for years, years spent primarily within its walls. Those walls and their contents had been my constant companions and friends, keeping me company during many long hours of solitude, during years in which interaction with other living beings was minimal. I struggled with the uncertainty of moving to a place I had never even seen.

Today, as I type these words one year later, I am on the brink of another move, and experiencing many of the same feelings. But, although this second move will be bigger (I will be moving to another part of the country), I am better prepared for it than I was for last year’s move. I know now what is possible. I know that it is possible that this new move, big as it is and daunting as it feels, will turn out OK, too.