Introduction

MY STORY STARTS at age 20 when I passed out, hit my head, and lost memory of my entire life up to that point. Only a few minutes before, I had received a phone call from my sister telling me that one of my brothers was in the hospital in critical condition, so I immediately went to see him. As the medical staff was telling my sister and me the status of our brother, he was wheeled into the room. He had no skin on his back and was otherwise not in great shape. This led me to pass out. Instead of crumpling to the ground as is typical, I fell straight back hitting my head on the emergency room floor. My sister describes the sound as the loudest crack she had ever heard. Blood immediately started to come out of my ears and nose as I went into a 40-minute seizure. My parents, who were still on their way to see one child in critical condition, got a second call that another child was in critical condition in the same hospital. Both kids were possibly going into surgery, and all they could do was continue driving.

One of the three times my mom has seen my dad cry was while I was still having seizures after my parents finally arrived to the hospital. My brother ended up being released in six days, while I remained in various hospitals for three months. I went in with the brain of a young adult and left with brain function that more closely resembled that of a child's. In addition to the physical damage and related behavior changes, I lost all memories from before the brain injury and didn't develop or retain any memories for weeks after. Everything I told you up to this point and everything I know about my childhood, history, and social norms is what I have learned secondhand from others. While this part of the story matters for you to understand what happened, it is the least significant part of the story as far as my experience, memories, and perspective are concerned.

The Aftermath and What I Learned

The most significant part of my story isn't the fall itself but the aftermath, relearning the world through the understanding of a child but with the mental capacity of an adult. Infants come into this world free of stigmas, learned biases, and most fears. They don't care about judgment or the expectations of others. I forgot everything, so I came into the world as an adult free of stigmas, learned biases, and fears that typically accrue by this age. I wasn't yet hindered by external expectations and judgments. Because I didn't have those influences, I saw the world in a completely new way.

Lesson #1: Needs Are a Priority

Because my first memories were in a hospital where meeting my needs was literally the priority, I learned that I was entitled to my needs getting met. I learned to communicate my needs and was actively asked what my needs were. I was taught how I could meet my own needs and what to do when I needed external support to get my needs met. All of my needs were respected by doctors, nurses, family, and visitors because my life and health depended on it. As far as I knew, the world revolved around me. If people were in my room, it was to visit me. If doctors or nurses were in my room, it was to check on me to support meeting my needs. Since this was the only experience I remembered, it became deeply instilled in me to ask for my needs to be met and to expect that they would be met. Nurses would even support me when I was getting tired or overstimulated and tell people to leave the room if my asking wasn't enough. Even after I was discharged from the hospital, my family continued to meet my needs without question and helped advocate for me when necessary.

Later, I learned that having my needs respected to even a fraction of this degree was not the norm. I learned that many people do not have families or environments that are this accepting of their needs. I learned that having my needs accepted directly related to having my difference accepted, which directly related to me feeling that I belonged. I don't remember any disability-related judgment from my parents or siblings ever. They may have had judgments, and may have even voiced those judgments away from me, but they never treated me differently. They never treated me as if I were inferior in any way. I didn't realize it until years later, but I think this was the most significant difference in my disability experience and the common disability experience. I lived the first few years of my life after the brain injury completely accepted. Because I was treated as if my needs mattered no matter who I was or what I was capable of, I didn't question if I was enough. I didn't question if I was too much. And that is a rare trait in the disability community.

Lesson #2: All the Rules Are Made Up

I left the hospital and learned that all the rules I learned about behavior in rehab were made-up rules that were only followed in certain situations. In rehab, I worked with occupational therapists, physical therapists, and speech therapists, who all supported me in learning how to better engage with people and society. I had no tact, no sense of respect, no idea what should or shouldn't be said, how it should be said, or how to interpret or consider others' feelings.

I remember using flash cards of facial expressions and the corresponding emotion the expression portrayed. I remember the matching games where I was to match emotions to certain scenarios. I learned the rules of "please," "thank you," and "you're welcome." I learned that you don't play on your phone while people are visiting. I learned that you don't just say, "I don't want you here anymore" but should make it a bit kinder, to consider the other person. Even when I don't understand it, I can accept that it is a rule to be followed.

Then I went out into the real world and learned others weren't applying these rules. When I would raise the question of why someone wasn't following the rules, they would explain why that specific situation didn't merit following the rule in the same way. They would explain that because of an imperceptible (to me) nuance, a completely different rule applied. I learned that trying to follow the rules just for the sake of following the rules led to me applying them inappropriately. When I didn't catch the nuance of the situation (or I caught the nuance but was completely wrong in my interpretation), I would apply the rules inappropriately. Either way, I seemed to be wrong in my behavior no matter how hard I tried.

I then learned that expectations of following certain rules changed depending on the person. I learned that what one person perceives as respectful and kind another could perceive as invasive. I learned that people love to project their interpretation of the rules onto everyone else with the assumption that their own rules are right.

What this experience taught me is that all of the rules are made up. Even the rules that seem very clear aren't. Even rules that seem to always apply, don't. There is always nuance that can change the applicable rule, or the interpretation of the applicable rule.

So I stopped following rules except the ones that I made up for myself based on my needs and values.

Lesson #3: People Settle

When I met new people and learned to listen about their life, it was more common than not to hear complaints. When somebody would talk about being unhappy in a job or marriage I would say, "Just get a new one." The person would explain to me that isn't how the world works. You can't just do what you want when you want. This confused me significantly because I did what I wanted every day. Sure, I was limited in some ways by my health and my circumstances, but within my control I did what I wanted. I didn't know enough to know that my situation was unique, but it just didn't make sense why so many people were living a life they didn't like and not making the basic changes to improve it. People were settling-and explained it with the assumption that it's the way it had to be.

Tie in lessons one and two, and it explains why. People don't prioritize their basic needs. People don't ask for their needs to be met and often don't even know their needs. The reason why typically lies in prioritizing the external made-up rules over their basic needs. When an assignment is due in school or work, it is expected to risk sleep to finish it. Somehow deprioritizing sleep and risking the very real health consequences is more acceptable than not prioritizing a made-up deadline with made-up consequences. When a marriage is full of unhappiness, stress, and fighting that leads to health issues, there is often an expectation to stay in it. Staying unhappy and unhealthy is more acceptable than getting a divorce if your family or religion or culture looks down on it. Attitudes around this have relaxed since I initially saw the pattern, but the point remains. People have convinced themselves that external expectations and judgments are hard rules that must be followed. They further convince themselves that those made-up rules take priority over the very real needs of the human body and mind. So, although I learned that rules don't matter at all, I also learned they simultaneously matter all too much.

Lesson #4: Society Itself Is Disabling

People with disabilities were very obviously treated "less than." I realized I was different pretty early on and started to feel the stigma before I even knew...