This post is for the people who cringed when I started calling myself disabled and, more importantly, for anyone who is uneasy about calling themselves disabled (because of the people who cringe). I get the sense that some people cringe because I don’t fit their definition of disabled or they dislike the word entirely.

Do you know what makes me cringe? The thought of losing my job. The thought of losing my health care. The thought of being unable to pay my bills, and losing my home.

I don’t feel like identifying as a disabled person was a choice. I started calling myself disabled in order to keep my full-time job. This is confusing to some people, who believe disabled people cannot work. The truth is the majority of disabled Americans do not receive disability benefit payments.

The U.S. government has multiple definitions of disability. The Social Security Act defines a person with a disability as someone who is unable to work due to a medical condition. However, the Americans with Disabilities Act (ADA) defines a person with a disability as “a person who has a physical or mental impairment that substantially limits one or more major life activities, a person who has a history or record of such an impairment, or a person who is perceived by others as having such an impairment.”

I benefited from ADA before I considered myself disabled. In 2015, before my MCAS diagnosis, I developed severe arthritis in my hips. Sometimes I wished I had a wheelchair, but I was certain doctors would fix me soon (hahaha). Eventually, the three-block walk from my contract parking space to my office building became impossible. I started calling in sick because I couldn’t tolerate the pain. Finally, I asked my doctor for a disability parking permit. Albeit, a temporary one.

But I didn’t get better.

About the same time I was diagnosed with mast cell activation syndrome, I started having life-threatening reactions at work to fragrance. Panic attacks pummeled me before and during work, as I constantly feared for my safety. This was no longer a matter of pain; it was life and death. I had to request disability accommodations.

Fragrance sensitivity is a difficult disability to accommodate, because it often relies on the voluntary cooperation of others. My employer tried to enforce a scent-free policy in our open office, but a few individuals continued to apply fragrance in the office, as if my life didn’t matter. After months of deliberation and a few emergency room visits, I was moved to an enclosed office on a different floor. My employer added an air purifier and sealed the air vents. I keep the door shut and rarely have visitors. The bathroom closest to my office is designated scent-free, but sometimes I still have to dodge plumes of perfume in the hallway and wear my Vogmask. At this point, I know which people to avoid.

On Wednesdays, I work from home. ADA does not require employers to allow telecommuting, and my employer resisted this accommodation request at first. I needed to prove it was a reasonable accommodation–that I could still do my job for home. My medical documentation explained working from home reduces my exposure to triggers, and conserves my physical energy. I have since disproven my employer’s fears and demonstrated how working from home can decrease sick days. (Update: The pandemic has proven the one day a week accommodation limit was arbitrary. I now work from home every day.)

Sancho, my service dog, accompanies me to work every day. Under ADA, a service animal is defined as a dog that has been individually trained to do work or perform tasks for an individual with a disability. Sancho alerts and responds to my mast cell reactions. I am safer with a service dog, especially since I am alone in my office. ADA also allows Sancho to accompany me in other public places, such as the hospital.

One of the indirect benefits of having a service dog is visually reminding people that I am disabled. When my coworkers see Sancho’s vest, they are reminded I react to fragrances and have other invisible disabilities. Plus, people smile at me a lot more.

Finally, I fall down stairs. Vertigo, low blood pressure, and muscle weakness make me susceptible to gravity. Even if I manage not to fall, stairs can trigger mast cell reactions that last several hours. So, I avoid stairs with help of ADA-required elevators.

Disability is a non-negotiable part of my identity. When I say I am disabled, I simply mean I need accommodations to be able to function. I had to fight hard for these accommodations. They weren’t just given to me. I was met with skepticism and inflexibility. My doctor filled out loads of paperwork and I sat in countless meetings. So I don’t have much tolerance for people who get uncomfortable when I say I am disabled. Nobody wants to be disabled, but I am proud of my self advocacy. I proud to be redefining disability and accessibility.

Even though I read laws for a living, I wasn’t very familiar with ADA before I got sick, because I never imagined I would benefit from ADA. I never imagined I’d become permanently disabled. No one does.

Now I understand how critical ADA is for people with disabilities. Without ADA, I would lose my job, my health care, and eventually my home. I would get sicker and require more health care, but it would be harder to access. I am benefiting from decades of advocacy from the disability community. I am proud to be part of this community and hope I can make positive contributions as I continue to learn what it means to be disabled.

A recap how ADA helps me every day:

• Parking
• Workplace accommodations
  • Working from home
  • Scent-free, temperature-controlled office
  • Scent-free bathroom
• Business accommodations
  • Fragrance relocation or removal
  • Delivery or drive up
• Service dog
• Elevators

 I also use FMLA leave intermittently. This is separate from ADA accommodations. The Fair Housing Act is another important law for disabled people, prohibiting discrimination in housing.

(Photo by Paul Battaglia.)

I have no money. Initially, when I was diagnosed, my bank account grew. My mast cells reacted to everything: shopping, eating out, socializing, eating in. My sole hobby became staying alive in the security of my own home. Gone were the days of Target receipts as long as my arm.

However, soon enough cocktails at happy hour were replaced with IVs in the emergency room, costing me a couple hundred dollars a month despite insurance. Add in a few hospitalizations and pharmacy bills, and I’ve been teetering on the edge of financial ruin ever since. I’d donate blood to help pay off my debt, but of course, no one wants my mutant blood.

Anyway, while my world and bank account shrank, I sought solace in library books. My local library is one of the ten buildings I can enter safely without a mast cell reaction. It has high ceilings and good airflow, but the best part is minimal social interaction! I can peacefully check out my reserved books without having to talk to or smell anyone. (I think my disease might have turned me into an introvert.)

At first, it was hard to find a book I could enjoy. In addition to brain fog, all I could think about was my pain and fears. When I was able to concentrate, I couldn’t relate to most characters. The stakes mocked my real-life struggles. Every happy ending seemed suspicious.

One day, I picked up Behind the Beautiful Forevers by Katherine Boo. It’s a nonfiction book about the daily life and struggle to survive in a slum near Mumbai. The story is a series of horrors: poverty, heat, hunger, and violence, to name a few.

For the first few chapters, I tried relate in the only way I knew how. I imagined myself living in the slum and counted how many pages into each scene until I would inevitably die from mast cell disease. I died a lot.

I began to think about the book when I wasn’t even reading it. In the bathroom, I thought about pooping without a toilet. At night, I thought about sleeping on trash. In the morning, I thought, “If that child gets up every day to scavenge for garbage in sewage, then you can get up and take your pills.”

It was exactly the therapy I needed. This book changed my life, not because it reminded me to be grateful or that others have it worse, but because it unlocked my empathy. It stunned me into thinking about someone other than myself. I realized my grief and anxiety had driven me to self-absorption and I embraced it under the guise of self-preservation. It felt good to leave my body for a few minutes and imagine I was somewhere else, someone else.

Since then, I have regained my love of reading and acquired new problems. I’m constantly browsing the internet for new book releases and placing holds before my library even receives the copies. I obsessively check the statuses of my requests, trying to calculate whether the ebook will become available before the hard copy. Without fail, several holds usually become available all at once and I have self-induced anxiety trying to figure out how to read them all before the due date.

I prefer ebooks, especially in the winter, because I still struggle to get to the library. Hard covers often trigger my tendonitis. I love my fourth generation Kindle, which I regularly stuff into a Ziploc for Epsom salt baths. Sometimes when I’m having anxiety about due dates, I turn my Kindle onto airplane mode and hold an ebook hostage.

But then I have anxiety that an angry librarian will show up at my door. It’s totally unrealistic, but I let the ebook go.

Although treating prostaglandins has helped my brain fog, I can’t always concentrate. In the hospital, I managed to downloaded a free trial of Audible high on pain medication. I don’t remember the book title, let alone the plot; sometimes the goal is just to relax. For moderate brain fog, I recommend young adult and comic books.

Here are some books I enjoyed in the months after my diagnosis:

Easy to read

• Miss Peregrine’s Home for Peculiar Children by Ransom Riggs
• The Graveyard Book by Neil Gaiman
• Heart and Brain: Gut Instincts by Nick Seluk
• Adulthood is a Myth by Sarah Andersen

Humor

• Furiously Happy by Jenny Lawson
• I Feel Bad About My Neck by Nora Ephron
• Dress Your Family in Corduroy and Denim by David Sedaris

Calming

• O’s Little Book of Happiness
• Why I Wake Early by Mary Oliver

 

Which books have helped you through a hard time?