Fake news

Imagine being limited to 10 buildings for the rest of your life.

Because of my severe reactions to fragrances and other odors, I can’t go to shopping malls or movie theaters. No concerts, bars, or sport events. I’m afraid to take vacations, because the last two out of three times I ended up hospitalized. Aside from the days I’m pumped full of prednisone, my life is contained to about 10 buildings I can safely breathe in.

For me, the hardest loss is eating out. I hate cooking and I miss socializing with friends. My diet is so restricted (low histamine, low FODMAP, and soy free) that even if I could breathe inside a restaurant, I wouldn’t be able to eat or drink anything. I can’t even drink the water.

Well, there is one exception: an allergy-friendly, burger joint with high-quality ingredients, disability parking, high ceilings, and good airflow. Although I have to premedicate and I still have mild reactions, I enjoy a juicy cheeseburger on special occasions.

Recently, I scheduled an office lunch at the restaurant to celebrate our interns. Although I certainly didn’t have to, I like to regularly remind everyone I am an excellent boss and a charming coworker. Food has way of connecting people, unlike my plastic-wrapped, HEPA filtered office with no windows and a locked door.

I snagged a corner seat at the end of a long table for maximum airflow. My service dog curled up underneath, while I popped a Benadryl and set my Fiji Water on a coaster. My coworkers and I ordered our food and began our pleasantries. I rarely see my coworkers ever since HR put me in solitary confinement. Still it’s really hard to give a shit about polite conversation when you’re constantly facing life-threatening situations. It’s even harder to offer relatable conversation when your personal life consists of Facebook, poodles, and texts from your neighbor checking if you’re alive.

My head bobbed as a tried to find a smooth entry into the conversation, like a game of Double Dutch. Don’t mention anything medical, especially not your CSF leak. Lately, everything seems unequivocally related to CSF leaks. “That sounds so fun. I’d love to try that… but my brain might hemorrhage out my ear!”

My focus was interrupted by a man approaching the end of table. He knelt down and began assembling a tripod. When he stood up again, I recognized him as a local reporter. My curiosity was interrupted as the waitress thrust a plump burger oozing with cheese in front of me. I grabbed the steaming tower of beef with both hands and inhaled the greasy goodness.

“Oh my god, why are they filming us?” a coworker exclaimed. Sure enough, the reporter was now hidden behind a lens pointed directly down the center of our table. My coworkers squirmed, trying to hide their faces, while sneaking bites of beef.

I snickered at their self-consciousness. I don’t worry about looking good anymore. Prednisone cured me of my vanity. I’m too busy convincing people of my disabilities, so I can get help. I’m constantly reminding everyone that I rarely leave the house and struggle with simple errands like oil changes and phone repairs.

In fact, I generally look pretty good considering how I feel. Here I was wearing a dress, flaunting perfect curls, and eating lunch with seven other people. Aside from the poodle hidden under the table, no one could tell I was disabled. Let the paparazzi get their shots.

I figured the reporter was collecting some b-roll for its evening newscast. Some friends and family would probably see it. They would be proud of me for appearing in public like a normal human being.

Or would they.

I turned my face away from the camera.

What if they see this and think I’m a liar? What if they suspect I eat restaurant food all time? What if they think these people are my friends and I’m having a great time? What if they think I lied about everything and no one ever wants to help me again?

I finished my burger, hoping it would push the paranoia out of my stomach. Instead, my nausea grew as I drove my coworkers back the office, a typical post-meal histamine reaction. I left work early that day due burger-induced cramps and fatigue. I spent the evening curled on my couch, waiting for the news, and preparing my rebuttal.

Why I only write when I feel like it

“Write every day” is common advice pounded into aspiring writers’ heads. If not every day, writers are encouraged to schedule writing time and stick to weekly routines. The purpose is to train your creative brain to produce a steady stream of writing regardless of inspiration.

I love routines. My perfect morning starts with making my bed, a chai latte, and breakfast for my poodles followed by twenty minutes of reading and a leisurely shower. I love how routines minimize decision making and ensure I focus on my priorities.

However, a routine is a luxury not everyone can sustain. My body is unreliable. My health changes from hour to hour without warning. It does not abide by any clock or calendar, no matter how hard I try to bribe it. As a disabled and chronically ill person, I have given up on routines.

When I first got sick, I thought if I followed a strict routine, I would feel better. I created a conservative schedule of medications, healthy meals, exercise, and sleep. I tried to follow it every day and every day I failed. My routine was destroyed by bouts of dizziness, midday vomiting, and nighttime muscle spasms. Instead of feeling better, I felt worse as I clung to my schedule and ignored my body’s demands.

Five minutes of writing a day may seem like an easy commitment (I have tried it!), but some days I can barely walk or shower. Some days I must choose between eating and resting. Some days brain fog robs me of my words. On a bad day, I don’t need the added disappointment and guilt of a writing routine I can’t maintain.

I am not less of a writer, because I can’t write every day. In fact, my experience with chronic illness and disability enriches my writing. Furthermore, I love writing and doing what I love, at my own pace, is healing. In the end, writing when I feel like it helps me feel like writing much more often.

4 tips for writers with chronic illness (and everyone else)

1.  Set realistic, meaningful goals
I have less energy than most people, so I must choose my goals carefully. A near death experience incited my desire to launch blog. I cannot blog every day or every week, but I strive to post every two weeks. I remind myself that the quality of my posts matters more to me than the quantity. I also decided not to monetize my blog in order to save my energy for writing.

2. Write when you feel good, wherever that may be
Inspiration is extremely elusive when you feel like crap most of the time, so I make every effort to capture it. I’ve trained myself to jot every idea into my phone no matter what I’m doing. I dictated half of this blog post into my phone while sitting in traffic. Notes and outlines help me write when I feel good, but I’m not inspired. I always bring these with me to my medical appointments, where I spend a lot of time waiting.

3. Enjoy less taxing, creative activities when you don’t feel good
I’ve learned how to enjoy myself when my brain feels like mush. Podcasts, books, movies, and coloring are low-energy activities that can be great distractions, while stimulating creativity. You totally have my permission to binge on Netflix. I also recommend networking with other writers on social media. Networking can be as simple as liking someone’s posts and sending goofy memes. The chronic illness and disabled writing communities are awesome.

4. Be kind to yourself
Your body is not the enemy. When I’m unable to meet my goals due to my health, I acknowledge that I’ve been busy trying to stay alive. There is no writing pace that guarantees success, but you do need be alive in order to write. Fighting your own body and criticizing your limitations is not productive. Self-care will make you a better writer.

Going to the bathroom with a service dog

I have a service dog named Sancho. He helps keep me alive.

People often see him and say, “I wish I had a service dog!”

I want to ask, “Do you wish you were disabled too?”

I would gladly leave my dog at home in exchange for a life free of fainting and suffocating. People tend to forget I have a service dog because of my disability, and while I can bring my service dog most places, I can’t go most places because of my disability.

Furthermore, there is nothing glamourous about being leashed to a service dog all day. I receive constant unwanted attention. Sancho wears a large “DO NOT PET” patch to ward off inappropriate touching. Nevertheless, every single person within a 50-foot radius wants to start a conversation about my dog. At best, they smile and say, “Cute.”

I refrain from saying, “I know he is, but what am I?”

Sancho is basically my shadow. Again, this sounds great until you’re sitting on the toilet willfully ignoring the stare of a poodle. (To be fair, I do stare at him while he potties. Maybe I should be grateful he doesn’t command me to “go poo-poo.”)

19025060_10109949467239830_204313425496703351_o

Sancho

When I started bringing Sancho to work, we had to learn how to cram ourselves into the bathroom stall without stepping on each other. (No accessible bathrooms on my floor.) Once inside, I had to teach him that peering underneath the stall was rude, no matter what you see, hear, or smell.

I believe public bathrooms should be a refuge of anonymity. I believe coworkers who start conversations while I’m in the stall should be fired. When I go to the bathroom, I want privacy.

In other words, I don’t want anyone to hear me fart and know it was me.

To my horror, I quickly realized Sancho’s furry butt revealed my identity in the stall. At first, I froze whenever someone entered the bathroom, refusing to make any noise whatsoever. Sensing the awkwardness, that person would then hesitate to make any noise whatsoever, creating a bathroom standoff. I waited them out every damn time. Soon I began to worry people would call me “the woman with the dog who hangs out on the toilet.”

To alleviate my anxiety, I came up with a more practical solution. I taught Sancho to tuck beside the toilet, completely hidden view. Now, after several months of practice, we enter the stall with the grace of Olympic ice dancers, and I rejoice in my dog’s ability to conceal himself.

Last week, I dropped Sancho’s leash on the floor, which is totally disgusting. (Another peril of having a service dog.) Within a split-second, Sancho picked it up, and I exclaimed, “Good job!”

Toilet paper rustled in the stall two doors down. I tried not to laugh.

Apparently, there’s a woman in our building who says good job to herself in the bathroom. Good thing no one thinks it’s me.