People seem curious why I’m not more angry about the illnesses that ravage my body, erode my sense of trust and safety in myself, limit what I can do in the world. I don’t know the full answer. But I can tell you where a piece of that answer is: April 20, 1992.
Or maybe it was really April 22, walking slowly in confusion and wonder up the staircase of my childhood home, quietly, tentatively, several steps behind my parents. Looking in the dim light at the grungy, dark and torn walls and ceiling of our home. There were no lights, no electricity. Everything was muscle memory and flashlights and disorientation in this stairwell, normally so bright and spacious with its white walls and cathedral ceiling.
We were standing there, but it was gone. Our home.
Dark dots in rows across the walls, where hot nail heads burned through the spackle and paint. Light fixtures and a thermostat melted down the walls. A three foot hole eaten through my bedroom door. Water drenching my bed and floor. The smell of campfire and chemicals and damp.
For those of us with the privilege to be housed, it’s easy to take for granted. Especially when you’re a child and your needs for food and shelter are consistently met. When there were toys and modeling clay and music and books and clothes.
April 20, 1992. A month before my 18th birthday, my childhood abruptly ended. We were out of town, alerted by neighbors on a hotel voice message in Phoenix, Arizona. A dizzying surreal confusion of flight changes and waiting and cancelling plans, and trying to conjure into our minds any image that made sense of the state of our home. The sleeplessness. The travel. The holding of breath. The long pause before we were standing in that stairwell in silence.
The safety was gone. Gone too were parents who knew how to do everything and could protect me from the big threats in the world. Because they were now facing something inconceivable, too. At the same time.
We weren’t strangers to grief and death. Three of my four grandparents were buried by then, as were many other relatives, friends and pets. But regardless of how sad or untimely those deaths may have felt, they were expected in the unfolding of life.
This was different. It was sudden. Unexpected. Overwhelming. Ungrounding. No one we knew shared our experience. We were in uncharted territory, alone.
I had no more control over that fire that happened when we were 2,000 miles away on vacation than I did the onset and development of my illnesses. They aren’t things you can prepare for. They aren’t things you can solve or undo. They are things you find a way to navigate and survive.
We certainly didn’t fall prey to any toxic positivity 30 years ago, anymore than I do now with my body and health. But then, like now, there were so clearly things to be genuinely grateful for: We each had a week’s worth of clothes and toiletries. The dog was in the kennel. We had insurance. We had my brand new laptop. Those things were significant
We didn’t know what to do, but we had some starting places, and some people to help us. And the surprise of folks we expected to show up to support us who didn’t, and the gift of those who did. The aunt who helped us sift through the charred rubble of family heirlooms and office supplies piled in the yard, and brought us work clothes. The aunt who brought the picnic supplies, the paper towels, and the laundry detergent.
We had to reexamine every item in our lives as we completed an inventory. Consider what was lost and what could be saved. What was worth replacing and what we should just let go. To this day, my mother and I could still have conversations musing about whether some particular object “survived the fire.” We can’t always remember. It was so much all at once. And so long ago now. We have rebuilt ourselves many times over.
We moved around from hotel to residence inn to furnished apartment, looking for places to land for the in-between time. A time that had no known end.
We had our dog, Ada. She adapted. She loved us just the same, a steady distracting presence.
We had rites of passage to navigate, including my 18th birthday, senior prom, high school graduation, and tonsillectomy.
Eventually I was launched from the in-between, leaving for college from an apartment building where I had no memories and had never met the neighbors. My parents worked with contractors to rebuild the structure of their house. I was hundreds of miles away, learning how to use a Vax email system, a meal card, and draw “the best shoe you can.”
I returned “home” to visit, to a house rebuilt where nothing was the same. And neither was I. By that fall I had experienced my first major Epstein Barr reactivation, which doctors didn’t even know was a thing back then. The health center said it wasn’t possible to have mono again, it was just a “mono-like illness.” And I had taken an incomplete for my first semester. I spent two months in a push-crash cycle trying to finish my 8 credit Freshman Foundations course, some of it from my parent’s basement.
That place never exactly felt like home again to me. It has familiarities and holds memories. But also so many things that have no connection to me. My parents rebuilt their lives there, redecorated. The brown Naugahyde couch replaced with cabbage roses. The pale sage carpet much harder to clean than the old forest green. Skylights installed. The kitchen entirely re-envisioned. Dining room furniture that was a really neat idea and a mistake none of us will ever make again.
But I didn’t. I found ways to move on, ungrounded, always looking for a place to land. The almost six years I’ve lived in my current apartment is my record for longest occupancy since then. 23 homes in 30 years.
In this place, I picked the color of the walls and chose the furniture. (And bought the renter’s insurance.) I’ve redesigned and rearranged as my health and support needs change. I have a bunch of my childhood things that were in storage during the fire. And a bunch of hazy memories of things that may or may not still exist. I have a few weeks worth of clothes in a new, larger size after I gained weight from a health crisis. Toiletries that I’m pretty sure don’t make me sick. I have my laptop. My Sadie cat and my Marigold dog. Folks who didn’t show up, and an abundance of folks who did.
A few years ago I was struggling with accepting the rapidly escalating severity of my limitations. I was reading Buddhist wisdom and advice from therapists. And it occurred to me that home has to be in me. In this body. This consciousness. That finding that sense of home in myself was what would help me find the stillness in the eye of the storm. That the search for the anchor wasn’t going to resolve out there, but in here. And every night before sleep, I sit, eyes closed, soundscape by a softly snoring dog. Tonight I will tick off my 1,563rd consecutive day of meditation, of finding a different sense of home, 30 years later.