The Importance of Home When You Are Chronically Ill

Anniversaries are painful. A year ago, when I had just started my freshman year of college, my house burned down in a wildfire. Even though I was at a school 3,000 miles away, it still was pretty traumatic.

People often talk about how what really matters isn’t the house itself, it’s the home you create there. That’s true, that house was more than just a building. It’s the place where I grew up, where I went through innumerable things. I celebrated birthdays, graduations and holidays. It was there through good experiences and bad ones. But to me, my house felt like even more than a home. A home can be created anywhere where you’re with people you love, but my house was also a safe haven for me when my chronic illness began.

Even if I felt horrible and nothing else was right in the world, I could be there, and that would make things at least a bit better. I could go home on a difficult health day and feel like a mess but still get a rush of relief when I walked through the door. I could lay on the couch and wait for an extremely difficult nausea episode to pass or just stay in bed, surrounded by objects of comfort and try to forget everything that was wrong with me. I could be having a panic attack and hate my life, but at least I was there, and that brought me some peace.

It was a place outside of the world where I had to fake being “OK.” It was my sanctum, my place of safety and resilience. I had more than a physical connection to the place, it was an emotional well of strength and calm.

When it burned, I lost more than my belongings and the house itself, more than a place of so many memories. When my house burned down, I lost a source of comfort that kept me going when I wanted to give up. I lost a reminder that I could survive anything. Without that, I still feel untethered and lost, like I’m missing part of my identity.

One of the most common things people have told me in response to my story is that I should simply be grateful for my family’s safety. They repeatedly tell me belongings are replaceable and material objects don’t matter. I understand they mean well, and I know they intend their words to be comforting, but, instead, their remarks sting every time. The majority of what I mourn is not the possessions I lost, but rather the feelings of comfort and safety I was able to find in that place. My house was a member of my family I could rely on, probably more than any person, as it was stoic and unchanging in the face of my changing moods and health. It never got tired of my illness and was perpetually able to deal with and be present for me. People, no matter how hard they try, simply aren’t built to do that. Even though it was just composed of wood and screws, it did matter. The memories and feelings I associate with it and everything within it are important, and my grief is not something I can or should ignore.

In the movie “Passengers,” there’s a moment where she’s been woken up and she realizes she’s going to be forced to live her entire life in space. She’ll die before they reach their destination, and there’s no going back. Her life has been predetermined, to some extent, by being trapped on the ship, away from a set location of home. That strikes a chord with me. I will continue on with my life, and I’m sure it will be full of both good and bad experiences, but I’ve lost my planet. I’m just left here, wandering through space, unable to be grounded. With my house gone, I’m trapped in the crushing vacuum of my chronically ill body. I don’t have access to the place where I’ve come to rely on for relief, because it literally does not exist in the universe anymore.

It’s utterly disorienting and causes both grief and fear.

The fact that I have obsessive-compulsive disorder (OCD) simply added to the difficulty of the experience. A central part of how I experience OCD is being uncomfortable with change and uncertainty. I find immense comfort in familiarity, and it’s been traumatic to be forced to go through so much irrevocable change. I want my home back, but I won’t get it. I’ll get something different, but it won’t be the same, and my obsessive mind can’t move on from that, even a year later.

For months after the fires, I would have the same dream every night. I’d be in my house, living my life, when all of a sudden, I would realize this couldn’t be the case because everything around me had burned. My reality couldn’t possibly be the truth, because what I was experiencing was impossible. To go through this, night after night is a thoroughly exhausting experience.

After I had this realization, I would be able to stay within the dream and sort through my belongings in my house. Lucidly, I would go through drawer by drawer, bookshelf by bookshelf, everything that I lost. I would hold papers and stuffed animals in my hands, deciding carefully whether or not I was ready to let this go, sorting until I decided I was ready to wake up. Night by night, it was the same start to the dream, but each time I realized I was in a place that no longer existed in reality, I picked up from where I had left off in my sorting the night before until I had gone through almost all of my belongings.

Despite hating the realization that I was dreaming, I think this was a huge source of healing and comfort for me, and now that I’ve stopped having that dream, I miss it. I can feel the memories slipping away. Now, though I can still consciously picture what rooms looked like, I don’t remember the exact location of each thing I lost. I’m terrified of the day when I can’t even remember the main things. I’m scared to lose the memories of falling asleep, seeing the lights from the rest of the house. I want to remember being in my bed on a rainy night, listening to the specific way rain sounded on the roof. I want to remember the feeling of waking up on a foggy morning and being safe in my house, surrounded by a blanket of clouds. I don’t want to forget the familiar scratchiness of the couch cushions on my skin, the specific wobble of the lopsided dinner table. I want to hold onto what it was like to do homework at that table, distracted by the view outside the window. I miss the experiences of home that I’ll never get to experience again. Losing belongings is difficult (RIP my books and childhood mementos), but more difficult was losing the specific experiences of home that I so desperately long for when I’m homesick at college. Even when I go back to my hometown for breaks, I don’t really feel like I go home, since I don’t get the familiarities you dream of in your lonely dorm room.

It’s been a year, and I’ve been able to find places of comfort, but nowhere like before. I still feel homeless, as if I can’t get comfortable wherever I am. That day, I lost a sense of safety and comfort I don’t know I can ever get back. I’m sure in the future, I’ll be at home in other places and be comforted in different ways, but things will never be the same. Home matters.