Delayed Reaction: A Fire Alarm and the Consequences

BEEP BEEP BEEP. LIGHTS FLASHING BEEP BEEP BEEP.  I jump out of bed, fumble around for my slippers, put on a thin jacket, and miraculously remember to grab my room keys as I scramble out of the room. I do not know if I am screaming.

Sometimes, days do not go as planned. At around 3:30 this morning, a fire alarm went off. For most people, it’s an annoying grievance that can cause them to lose a an hour or so or sleep. When the fire alarm goes off,  an immediate jolt of adrenaline that leaves me terrified and disoriented. It feels like there is a cacophony of clattering rocks in my ears,  a strobing flashlight shining in my eyes, and my heart is pounding out of my chest. I need to escape, but my legs are shaking. There’s been times when I became frozen and unable to evacuate during a fire alarm;  I consider it an achievement if I manage to get outside by myself.

I stumble around outside looking for the other people evacuating. Seeing no one, I wander into the nearby campus police station. The alarm is going off in the police station too, and I am wailing and carrying my stuffed animal under my arm. It takes several minutes for someone to ask me what I was doing. “People, people– where are the people?”He doesn’t understand, and send me out to wait with the other people from the dorm.

I used to be able to tolerate fire alarms; I would cover my ears and obediently exit the building. However, my tolerance for sudden flashing lights and loud noises has drastically decreased in the past two years. My fight-or-flight mode is activated, especially when the alarm wakes me up from a slumber. I am not able to think much beyond escaping, and grabbing my keys.

In my disoriented state, I start running. I need to get away from the terror inside my dorm building. I don’t have a destination besides any place but here. I have been screaming on every exhale. Somehow, I realize I should call my friends, so they can find me. They pick up on the second call. I can’t explain where I am.

One of the first functions I lose in times of terror is my speech. My thoughts are racing, but when I try to connect my mouth to my thoughts, my mouth only gets out part of the message, leaving the listener to try to fill in the missing pieces. Sometimes I can’t verbally express myself at all.

A stranger approaches, having heard my screams from the next building. He asks me why I was screaming, and all I could respond was, “Alarm, alarm.” He leads me back to the main path, where I find my friend, who was searching for me after my call. She guides me back to my room, where I spend the next two hours trying to calm my pounding heart and fall back asleep.

Unfortunately, that is not the end of the story. For me, I struggle to deal with the ramifications of a fire drill for up to 24 hours after it happens.

I wake up groggy; today isn’t going to be a good day. I make it through my first two classes and lunch. During my third class at 2pm, my eyes get droopy. I flit in and out of consciousness. I look sleepy or bored, although I am trying my best to focus on the lecture. I leave the room for a water break, hoping that the movement and water would help me get through the next hour of class.

I sit in a chair next to the water fountain, then slip to the floor. My muscles clench, and I moan, hoping someone would hear me. My vision becomes increasingly narrow and blurry. I rock and twitch back and forth on the floor, going in and out of consciousness. I see someone’s feet approach, and I assume that they are calling for the campus police.

I had already explained to the campus police chief about my seizures when I first arrived on campus. He remembered me, and informed the responding officers of my seizure response plan, which is to take me back to my room to rest, and I do not need to go to the hospital.

It takes a while for the officers and then the EMTs to arrive. By the time they arrive, I’ve moved from lying down to sitting up, and I slowly begin to communicate again. My words are jilted, but they can understand me. They check me out, I sign some forms, then they take me back to my dorm to rest. I lean on walls for support as I walk out. My friend, the one who was there at 3 am, hangs out in my room while I recover more.

Fortunately, I do not experience fire alarms often, or as often as most people. I have accommodations at the college so I am warned in advance of any fire alarms, so I do not have to be in the building. This accommodation does not help in the case when it is not a drill, but police officers are instructed to check my room in the event a fire alarm goes off. I do not know if that happened today, as I managed to evacuate early, before they would have come looking for me.

Sometimes using accommodations start with myself. As time passes, I’ve learned more about what my seizure triggers are. Grogginess, shock, hunger, and pain are just a few. My next goal in seizure management is to respond to these symptoms with care, rather than ignoring the signs and pushing through. Looking back, I was already struggling with fatigue and grogginess by the time I trudged to class. Accommodating myself means taking care of myself now so I can function later. It means acknowledging that while not everyone is set off by fire alarms, I am affected and I need to take the steps to care for myself in response.

 

(P.S. This is where the Fainting Goat part of the blog title comes in; it’s a nickname my friends affectionately gave me as a result of my seizure episodes. If you haven’t seen the videos of fainting goats, go look it up, it’s a treat. 🙂 )

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What is Disability?

In the spirit of Disability Employment month, I am going to try to or share an article everyday about disability.

Today, being the the first day of the month, I am going to start broadly, and with the basics. I think about disability every day, through most waking moments. Therefore, it surprises me when I realize that others might go for long periods of time for thinking about disability, or may not have a good knowledge base for what disability is.

Disability is a general term for a condition, illness, or impairment that hinders major life activit(ies). This definition is adapted from the Americans with Disabilities Act, and covers the ways in which a disabled person cannot function independently in major life activities. What I find more interesting and informative is the ways in which a person with a disability does manage to do major life activities.

Some of the responsibility for adaption falls on society. Society is responsible for public access accommodations. Under the Americans with Disabilities Act, this includes ramps, elevators, closed captioning at movie theaters, braille on signage, and service dog access; there are many more ways in which public buildings and spaces must be accommodating to people with disabilities, but this is not the blog post to elaborate on that. Simply put, wheelchair users are not responsible for providing their own ramps.

Other accommodations are personal to the disabled individual; some people use specialized equipment such as mobility devices, oxygen tank, service animals, hearing aids, and prosthetics. Some autistic people and people with ADHD use fidget toys or weighted vests as a way to calm down in a stressful environment.

Disability sometimes means adjusting the society’s expectations that are unrealistic for a person with a particular disability. It’s not realistic for a dyslexic person who has trouble with spelling to handwrite a paper; a paper composed with speech-to-text software is an acceptable alternative. Blind people cannot be expected to read a handout in front of them; it is an easy accommodation to provide that document in electronic format to the person.

Society expects that people are capable of getting transportation to a store (whether public transportation, para-transit, driving, or walking), going up and down the aisles to find what one needs, getting through the check out line, taking the transportation home, unpacking the items, and then using them. A large task like that might be too much energy for some chronically ill people, some wheelchair users might not have access to transportation that works for them, or some autistic people might melt down in the bright lights and loud sounds of the store. For all of these people, it might be easier to buy things online. This is an example of an everyday process that non disabled people use for convenience, while disabled people use it as an accommodation to mitigate the effects of their disability,

In a roundabout way, I am trying to say that disability is more than an impairment or condition that restricts daily life; disability is a different perspective of how we disabled folks move through the world. The reason I think of disability everyday is because I am constantly asking myself: How can I fit in a world that was not built for my needs? How can I accommodate myself, and how can society accommodate itself for me?

Similarly, we must all be asking ourselves: What expectations of society are unreasonable? Which ones can be more lenient, and how can we make the world a little easier for everyone in it?

First Part of the Equation: Autistic

Hello, it’s me, Autistic Goat.

Most people in my life do not know that I am autistic. Up until a year ago, I didn’t know that about myself either. I knew the stereotypes of autism, and considering that I was always very verbal, did not have a strong preference for trains, and did not cover my ears for loud noises, I never considered that it would apply to me.

I’m not here to convince you that I am autistic; I already know that about myself. I’m here to present you with a series of vignettes that are examples of my autistic life. Retroactively, I see that these are autistic moments. Reader, I don’t want you to fall for the same tropes of autism that I believed before my diagnosis. I hope you leave my blog with a more nuanced view of autism. If more people knew about the spectrum of autistic experiences, then maybe I would have gotten my diagnosis earlier, perhaps people wouldn’t be as shocked when I tell them I’m autistic, and maybe I wouldn’t have to hide behind a username.