Nostalgia
I wrote the following 12 years ago. I often romanticize the years I lived in NY. But the reality of working while my health was deteriorating was so, so hard.
Sometimes I want to go back. I miss parts of that life. All of my life is sick leave now. And I yearn to feel productive again, to feel alive in my favorite city.
But I also feel grateful. Because I’m on Social Security disability and I’m taken care of financially. Because I have my own apartment and yes, it’s technically on shared land with my parents but I get to live with Pete, rent-free.
I’m sharing this below to illustrate what it’s like to be chronically ill in the prime of your life. I hope none of you will ever relate to this.
XX Kelly
Summer, 2010
This summer I learned how to be alone.
I live in New York City with two roommates. I lived on the weekends in Interlaken with four or five or six family members, depending on which cousins were visiting and which siblings were present. Now everyone is gone, their rooms empty, the sheets changed. When I visit, I visit alone.
I got sad thinking about this today, how the hallways won’t echo with Cheech and Chong fighting; how the porch won’t stink of college boy cologne and sweat. There will be no more beer cans littering the balcony and no more sandy towels, draped alongside surfboards on the fence. I will miss Greg, Roarke, Kristie, Audrey, Steven, Sam, Colleen and Anna, and I will miss this summer, even though it has been the sickest and loneliest of all my summers.
And even though the house was constantly full, I isolated myself. I spent many days in bed, sun-drenched days under the covers, long blank afternoons that stretched into evening.
Shut the door! I yelled at all those who entered my room, looked at me, looked at me looking at my computer, talked to me, and left. Shut the door, please! I said this when someone brought me a drink, or pretzels. I said this and disappeared.
I have spent hours and hours in bed this summer. Hours that I once considered to be completely lost to the Diseases.
And some were. Some were buried under four milligrams of Xanax and shots of Nyquil. But many were spent communicating, Tweeting, writing, reading, reaching out.
It is safer to be myself within the confines of my sheets. It is easier to be my Sick Self on the Internet, where I connect with strangers, strangers who can care and understand without the burdens of emotional and physical bonds.
In August, I fell deeply into this isolation. I wanted to be alone. I needed to be alone. I was physically sick and so there were many, many days where I did not go into work. I lived in my bed in the East Village. Constantly logged onto Delivery.com. Emailing work and apologizing and falling and falling and failing. Drinking alone because I thought it would take the edge of this razor sharp pain.
Sickness is blurry. Even a cold can throw you off, mess with your senses, screw with your equilibrium. Lupus + Other Random Diseases + depression is disorienting like nothing I have ever experienced. A long, long summer.
I wrote and I did not cry until I was so drunk that there was nothing else to do.
I avoided others, friends, peers. They don’t understand, no one understands, blah blah.
My dad said: “You are drowning yourself.” My mom begged me to see a therapist, or to come home.
I stayed in New York, though. I stayed indoors and shut my door. I burrowed myself so deep that I left everything, every part of me underneath my sheets. I avoided looking at people in the eye when they asked how I was feeling. I dodged calls and well-wishes and sunk further into the mattress.
Please, shut the door.
I thought: this experience is not to be shared.
I thought: I belong here in bed.
I thought: Outside is overrated.
I thought this until one day when I realized that it was enough. Until I realized so sharply and clearly the repercussions of illness and sadness and isolation. How it can wreck your career, social life, body.
I stayed in bed a long time.
And then?
I opened up the door and walked outside.
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- *
But as is often the case when I push myself, I only got sicker. I write now, this Wednesday morning, with tear-stained cheeks from a new infection and chest pain so severe I debate calling my mother, or the hospital, or sending an e-mail to my doctor at 2 am.
I want to go outside tomorrow. Make it to work. Feel air on my cheeks. I want to fulfill my potential at work and in life.
But my head spins with words that hung in the air at this morning’s appointments. Words that will remain suspended there until I grasp what may be a new reality.
But I am still trying. And I will keep trying. Because there’s life outside these windows and I intend to live it.
As much as I can.