Chronicles of The Chronically Ill

On March 17, 2015, Hunter and I went to IHOP to celebrate that she didn’t die last year, which I think is a pretty cool thing. We called it the celebration of her Tumorversary, the fateful day a year prior that she had her brain tumor removed. We didn’t cry, we just ate, and ate, and ate, and posted on Instagram a picture of “I love you” spelled out in sweetener packets. This is how we cope. I think about it a lot, the fact that I met her three months after her surgery. I think about how I could not hold her or assure her that I would be there when she woke up. I wonder how scared she was. Sometimes we talk and she tells me the stories, and even in the little anecdotes of her ten days in the hospital, and a month stuck in another state, she sounds brave. I wonder what she saw when she opened her eyes for the first time after surgery, without the tumor eating away at her.

When we first met, we found out the medical anomalies of one another. She asked me about when I was sick, and after four years, I was used to the story: “I was in the hospital for nine days, I could have died, they were watching to see if they needed to amputate my toes, I went to physical therapy for a year and a half, my body still sucks, blah, blah, blah.” She told me her surgery was “months” ago, never with specifications of how long “months” was. It took a while to get it out of her. I didn’t know that when I met her she was newly out of brain surgery, bearing fresh scars, fresh worries, and fresh fears.

And a year to the day she got her rare benign brain tumor removed, the doctors claim she is healed. It does not matter that she can’t stand for long periods of time without feeling like someone cut a string inside of her and tied them back incorrectly, or that she passes out about ten times a day. You are not allowed to take that long to patch up from a surgery. A month is okay, a couple months maybe. A few months, now that is pushing it. You have to heal. Being sick isn’t an option in a world that won’t stop for you, and how dare your body question the healing power of your physician? And there we were, a year later, spelling out “I love you” in packets of artificial sweetener. We ripped open the packets and poured them into our drinks. Bittersweet.

If I measured out our relationship, it would be approximately thirty flares shared between the two of us, three colds, two cases of food-borne illnesses (shigella for me and a nice bout of c-diff for her), six onsets of MRSA, a bit of strep—all in about a year. This really isn’t fair when you’re sick year round and having a “real” sickness makes you feel like you’re ready to dig your own grave. And yet, the “real” sicknesses are the ones that give us pride. Finally our symptoms are proudly displayed on the outside instead of the invisible illnesses we hide inside our skin and bones. Yet, all of those infections make our already hard lives even harder. Hunter and I try to take turns patching each other up. Sometimes I guide her when she blacks out. Sometimes she pets my head when the pain is overwhelming my brain.

I love talking to Hunter. I loved how from the moment we met, we clicked. I tell her every day that we understand each other better than anyone else could, between illness and ideals, politics and opinion, wandering thoughts and life circumstances, we were made for each other.

But lately I can’t understand why I can’t help her. She served her time in the mousetrap of hospitals and pain. I can’t figure out why her body won’t let her be in control, why it refuses to let her do things that other people take for granted, like run or go grocery shopping. And I can’t seem to understand why I can’t understand, since I used to go through the same thing on a daily basis.

We call them flares. The moments, or hours, or days, or weeks, or months, when our already painful and uncooperative bodies decide to be even more rebellious. And I sit in pain a lot, I do. I have migraines almost every day, sometime excruciating, and sometimes bearable enough to tolerate doing daily tasks. Fibromyalgia morphs my body into a tree with gnarled branches. But still, the pain I feel watching the person I care most about hurting so badly shocks me out of my pain. When I met her, I saw strength. I didn’t expect this. Why can’t her body see how strong she is?

There are good days. We went to the Miami Youth Fair during Spring Break 2015. We lasted an entire five hours there, four hours longer than we can usually tolerate standing outside. We didn’t even get tired. I almost felt like I was a kid again.

The Youth Fair is probably the size of Disney. It’s huge. We walked through the entire thing. We took so many pictures and rode the Ferris wheel and the ski lift and surrounded by all of the thrills of the amusement park, she still made me happier than anything in the entire world.

There was a ride I thought we could both go on called Crazy Mouse. It was designed for children, but apparently not designed for someone with neurocardiogenic syncope, the sweet little chronic illness that makes her pass out and become unconscious. Nor was it designed to suit the rather intimidating hole that is a lack of brain in her brain. It wasn’t kind to my vertigo, migraines, or fibromyalgia either. This ride, it spins, it drops, but it doesn’t do anything major. We got on a colorful mouse-shaped seat and gave it a go. We got to the top of the roller coaster, and Hunter just said my name flatly. I saw her face change. The rollercoaster held at the top for a moment of suspense, and then we dropped. We twisted. We turned.

We got off the roller coaster, walked to the little concrete bench to the ride of the ride, sat next to an old couple with their grandchildren, and cried for ten minutes. People passed by over and over again. No one asked us why. Two nineteen year old girls really just shouldn’t be crying in front of a child’s roller coaster. I looked at the tears falling down from her eyes, and how her eyes were vaguely illuminated through her dark tinted sunglasses. Her eyes, at that point in her life, were nearly always cloaked in dark glass, except when alone with just me. This is how we cope.

I look in her eyes a lot, and I’m convinced I can see the entire world in them. Not because she’s some magical being, but because her eyes are so amazing, so unlike any eyes I have ever seen. One is blue and the other brown. The blue one has the slightest brown halo, and the brown eye looks like someone took a piece of chocolate cake and tried to hide it by piling blue frosting where the slice used to be. Her brown eye is like the earth, and the blue like the waters. I see all the wonders in her gaze. And I see hope. I see she’s not going to give up.

I have the fortune of living my life with the pleasure of knowing Hunter Kathryn Tallman. I have watched her grow in the time that I’ve been lucky enough to call her my girlfriend. I was there when she started telling people that she was disabled instead of forcing herself to do things she wasn’t able to, when she faced an old man yelling at her for supposedly using her father’s handicap decal. I was there when she started telling people she had a tumor about a year ago, and that she can’t do everything that everyone else is capable of. I was there when she stopped being embarrassed of who she was and the things she can’t control.

Her dark prescription sunglasses do serve the purpose of protecting her from her intense photophobia and allowing her to see. But they also served the purpose of blocking people out. The first time we skyped, she sat in a dark car with her sunglasses on. She sometimes slept with her eyes covered. Perhaps she didn’t want anyone to see what she could see or the pain in her eyes.

Recently, Hunter bought a second pair of prescription glasses. This time, they aren’t sunglasses. I think perhaps she sees the world differently, and she’s ready for the world to see her differently, too.

Haley Zilberberg is a student at the University of Central Florida where she studies Creative Writing and Social Work.