But you don’t look dead

In the 80s, HarperCollins decided to encourage children to read by scaring the hell out of them. The scary stories were cleverly disguised with “I Can Read Level 2” emblems. To be fair, I was the type of kid that got nightmares from Nancy Drew. However, I never suspected such simple words could wreck me for so many years.

I wouldn’t be surprised if millennials’ trust issues stem from one story in particular: The Green Ribbon.

Listen to the story with pictures from the actual book.

Basically, a woman named Jenny wears a green ribbon around her neck her whole life and won’t tell her husband why. When she is very old, she removes the ribbon and her head falls off.

No explanation.

Children need explanations to sleep at night.

Until that moment, I hadn’t worried about anyone’s head falling off. Would someone do that to me? Could I trust anyone? I became nauseous every time my mom put on a turtleneck.

Today, I no longer worry about anyone’s head falling off.

I’m too worried about my own head falling off.

You see, I finally understand Jenny, thanks to Ehlers Danlos Syndrome. I am able to look past the fact that she is dead and relate to her cranial instability. After all, I’m half-dead most days anyway.

I have great empathy for Jenny. Even if she did tell people about her cranial instability, no one would have believed her anyway. Doctors probably would have blame it on anxiety.

In fact, I wish I could commiserate with Jenny about the pressure to be alive. We would probably be great friends. She would have understood the complications of my cerebrospinal fluid leak and fear of sneezing. We would have rested our heads, while binging our favorite TV shows. I wouldn’t care that she was dead, as long as she laughed at my jokes.

Jenny would teach me the importance of having boundaries, that it’s not always necessary to disclose my medical conditions. I would tell her Alfred is an ableist asshole, and kinesiology tape is a thing now.

Jenny would never tell me, “But you don’t look sick.”

And I would never tell Jenny, “But you don’t look dead.”

Why are hospital discharge instructions so unhelpful?

Last month, I temporarily lost my vision from a cheeseburger. My iron was low, so I scheduled a cheeseburger like a healthy person schedules a haircut. Not just any cheeseburger, but a $12 grass-fed patty without any seasoning or toppings except cheddar cheese–the same burger I’ve been eating for years.

Less than an hour later, I lost half of my vision in a staff meeting. At first, it was fun to watch my coworkers disappear, but then the doom kicked in. By the time I got to the emergency room, half of my body was numb.

A few seconds later, I felt like I was making a cameo on Grey’s Anatomy. No less than six residents swarmed me. The supervising doctor said they were going to prep me for tPA, and I nodded even though I wasn’t sure what that meant. I knew I was in trouble when the nurse grabbed my service dog.

One resident warned me, “Okay now, big poke!”

I thought, “I think you mean little poke.”

Then two of them in chorus sang, “Big poke!”

I contemplated how quickly six residents would tackle me if I tried to run. In the end, it was a big poke and I have not eaten a cheeseburger since then. Although the doctors quickly ruled out a stroke, it’s terrifying when my mast cell reactions affect my brain. I worry about having a ministroke, if I don’t treat the inflammation quickly enough. I would much rather have hives and vomiting. I didn’t get any gastrointestinal symptoms, but the next day I had two black eyes. The restaurant staff could not have been more helpful trying to identify the culprit, but I may never know what triggered my reaction.

After steroids, Benadryl, and a few hours of observation, a nurse handed me my discharge papers and wished me luck. On the way home, I curiously thumbed through the packet. It’s always interesting what doctors list as the reason for my visits, since mast cell reactions are not an option.

On the sixth page was a 3-inch clipart image of a glass of wine. Below, it read, “Red wine is a common migraine trigger.”

Folks, I haven’t ingested alcohol, let alone a grape in the past four years. Red wine is a common migraine trigger because has enough histamine to give me lips bigger than Angelina Jolie’s.

I don’t know what was more appalling: the useless advice or the wasted paper. Don’t even get me started on clipart. At least, I am accustomed to the useless advice.

“Okay, the discharge instructions say come back if you develop a fever or hives,” the nurse often says.

“I have hives right now. I have hives every day of my life. I am not putting that gown back on,” I reply.

After my gallbladder surgery, I received advice on how to clean my wounds and keep my poop soft (and no clipart). What I really needed was some encouragement and a 24-hour prednisone hotline for when I wanted to punch people in the face.

I guess that’s what Facebook is for.

Messages I received instead of GoFundMe donations

I’ve spent my summer suffocating on laundry fumes. My neighbor values the noxious fragrance of his laundry over my human life, so I was forced to launch a GoFundMe to afford a lawyer and a contractor. Friends and strangers alike have been incredibly generous in their donations, advice, and encouragement. Asking for help was terrifying–it always is–but once again, I was reminded that people care and want to help.

Of course, there were a few inconsiderate exceptions that poked my funny bone.

“Have you tried celery juice?”

Does celery juice pay the bills? If you find a vegetable that can heal my bank account, please let me know.

“There but for the grace of God I go”

Apparently, this means you feel lucky you’re not in my position. Or that God has no mercy on me? Or you don’t have mercy on my brain fog? There but for the grace of GoFundMe I go.

“Do not use western medicine!”

So next time I have an allergic reaction, I should just ignore my EpiPen? Because the last alternative medicine supplement I tried gave me anaphylaxis. I suppose you don’t like to use western money either.

Sh%t I say in the emergency room

My nine-month emergency room boycott ended on Tuesday. Around noon, the floor started to bounce. I crawled around my office unconcerned for about an hour, until a migraine threatened to take my vision. Benadryl, my magic duct tape, did nothing. I told myself I was probably anemic again, and all I needed was simple blood test.

The emergency room is always a gamble. Sometimes I receive great care; other times I am completely dismissed, regardless of my symptoms. This makes me incredibly nervous. When I am nervous, I tell jokes uncontrollably.

A quiet emergency room is a sign of good luck. On Tuesday, the check-in nurse led me straight to a room. Within a minute of changing into a hospital gown, the doctor appeared. I explained my symptoms and concerns, searching the doctor’s face for subtle reactions.

She asked, “Any chance you’re pregnant?”

“No,” I said. She might as well have asked if there’s any chance I had traveled to the moon.

“How do you know?” she asked.

I tried to think of the correct answer, the answer she would like to hear. I had given the wrong response once before. An anesthesiologist had asked me, “Are you sure?” and I replied, “Unless I’m having baby Jesus.” He ordered a pregnancy test.

I hate this question, because it second-guesses women’s knowledge of their own bodies. Yet, having watched an entire season of “I Didn’t Know I Was Pregnant,” I understand why it is necessary. I feel like a more pragmatic question might be, “Have you seen a penis in the past nine months?”

As I tried to carefully formulate words, I got nervous and blurted, “Because the newspaper printed that I’m allergic to men.”

For full effect, I dug out a copy of the local newspaper from my tote bag, and plopped it on the hospital bed.

“That’s you,” said the nurse, pointing to the front-page photo of me wearing the same green gown.

I’m not sure which was most disconcerting to the doctor: my allergy to men or that I carry a newspaper of myself? To be honest, I packed it out of fear that I wouldn’t be taken seriously. In the past, doctors have even disregarded my emergency protocol. Perhaps, a newspaper would be more convincing?

I hadn’t anticipated using it for self-sabotage.

The ER doctor did not laugh at my hilarious joke. This just makes me more nervous and want to try harder to elicit laughs. However, she did order the blood tests and fluids, and even offered Benadryl. I relaxed and the jokes thankfully stopped.

P.S. Yes, my local newspaper wrote an article about me. Check it out.

How to tell someone they smell

Based on my research, people don’t react kindly when you tell them they smell. In fact, it seems to be the quickest way to evoke paranoia.

Technically, everyone smells. Whether it’s from a fresh shower or natural body oils, even the cleanest people have a scent. Just ask my poodle.

However, I am specifically referring to people who drown their bodies in fragrance: perfume, cologne, lotions, deodorant, and detergent. These fragrances can be life-threatening for people with mast cell disease. Just a few seconds of exposure can destroy my health for several days.

Although I try to stick to scent-free environments where people understand my fragrance disability, inevitably someone forgets or doesn’t care. When I was first diagnosed, I tried to be Minnesota Nice and avoid the offenders, but avoidance only left me with two choices: never leave my home or destroy my body. After months of puking, pooping, and gasping for air, I began confronting people.

3 ways to tell someone they smell:

  • Yell “Skunk!” and run away
  • Slap a Mr. Yuck sticker on them
  • Start a game of “Duck, Duck, Smelly Duck”

“You smell” became my default declaration. Every time I sputtered those words, terror swept across the offender’s face, as if they were the one dying. I realize my delivery was not great. In my defense, it’s about all I could manage to say. When your body reacts to fragrance, your organs swell and your oxygen levels drop. Sometimes I become so confused that I forget to flee the room or take my medicine. I fumble for words.

“You smell” was never meant to be a personal attack. I hoped any embarrassment would convince them to respect the scent-free environment. It usually did not. They did not understand the long-term damage caused by their fragrances. I realized it’s easy to tell someone they smell, but it’s hard to explain the consequences.

When I say “you smell,” I mean you’re killing me.

Since my mast cell disease diagnosis four year ago, I have become braver about educating people about my fragrance disability. I have learned requesting scent-free environments is not selfishness. Spreading awareness does not just benefit me; it protects the health of other people with mast cell disease and conditions that cause fragrance sensitivities, such as migraine and asthma.

3 ways to tell someone they smell and it’s harmful:

  • Hand them your EpiPen and say, “You might need this.”
  • Write a passive aggressive blog post and send them the link
  • Email, text, or talk to them after you recover from your reaction. Specifically explain how fragrance affects your body. For example, fragrance reactions can permanently damage my kidney. Probably try this option first.

Of course, you always run the risk of finding out someone is a complete jerk, who doesn’t care if you suffocate or lose an organ. There will always be that one person who suggests you “just wear a mask” without understanding masks don’t block fumes, but they do reduce oxygen flow. It’s best to avoid assholes, whether you have a disability or not.