“My Struggles” by Layla Jeffery

Developing a disability as a middle schooler felt extremely similar to the two deaths. That first death, the exit from life, similar to the new changes and obstacles. The second death, the final one, much like the newfound separation from my peers. First the self I would have been was gone, and then the self I was before. At any age, disability makes you different, but I believe teen development might be the worst. We aren't young enough to roll with the punches but still too young to be seen by the average person as "properly sick". It's interesting, teen disability, because it fundamentally changes your relationships and life experience before you have the chance to connect with peers. I do believe, however, that sometimes the person you become when faced with those types of challenges has the chance to be better than the hypothetical "healthy" person you could have been.

Before I was twelve I was mostly normal. Although asthmatic and nearsighted, I could play with the other kids normally. It wasn't until puberty that my various hereditary medical issues would show up. First came hypermobility, then POTS, then EDS, and then hypoglycemia as a high school freshman. That sounds quite intense from the outside, but my mother was like that. These weren't new unexplainable phenomena. They were just inconveniences my family was familiar with. But I kept changing. It happened slowly at first; I would misunderstand something my mother said or lose information during a presentation. The kind of behavior expected from an inattentive fourteen year old. So I attempted to focus more and pay more attention but I still struggled. I wasn't deaf, I could still listen to music and understand conversation clearly, right? If something was wrong I wouldn't be able to understand those talking behind me (I couldn't). If something was wrong I would have to read lips (I did). If something was wrong, I would struggle (I have). Nothing was wrong but I was disconnected from the world around me and it ached. Over the span of the year I lost the ability to understand the people I loved.

Once I finally convinced my parents that what looked like disobedience was actually struggle , we started going to doctors. The original plan was to find out if I was going deaf. Deafness would be easy, leaving me with a hearing aid or other device. They sent me first to some local office in a strip mall in a strange part of town. Local, but not very sophisticated. The office specialized in adjusting seniors with hearing aids, so if the loss was profound it would be effective. Nothing was found, so we were shuffled to some bigger, better, facility. Over the span of two years we did this. A few months would pass, I would get tested, results would be inconclusive, I would wait. Most recently to this essay being written, I was told to wait for my next test until after my eighteenth birthday. I hope soon those tests are helpful, but all I can have is hope. Until then, I will just live with some undiagnosed hearing or audio processing issue. All

we know is that it is real. It's real when I'm in a crowded room or family dinners where the conversation is just out of reach. It's real when nothing feels wrong at all. Often, my hearing issues manifest in the little details. Look away and I lose track of a conversation. It's frustrating, struggling to do what others have deemed simple, but those are the good days. Those other days, the bad ones, leave me missing simple sentences. I wake up knowing that I won't have a chance. So much effort is required to listen and understand that I gain migraines that could last for days on end. Along with the migraines come the frustrations of those around me. Although I'm trying my best, it is uncomfortable for the people around me when I "suddenly" lose my listening capability. I wonder how they think I feel when I lose my tether to the world around me?

Luckily I have people around me who help adapt to my needs. One friend of mine has a sixth sense for bad times and will, without asking, lean closer and enunciate more so I may understand her. Another friend of mine will write down what she wants to say in loud spaces so we don't have to wonder whether or not I can hear it. They aren't perfect, and sometimes accidentally make it worse, but I cannot hope to have people love me more perfectly than that. That care, plus that of the hard of hearing or deaf communities, means more to me than I have ever been able to properly express.

While I hope nobody else must face the struggles I have, I do believe it has changed me for the better. Without facing difficulty, I wouldn't have developed compassion and empathy the same way. Being forced to confront the ways I am different from those around me has given me a newfound ability to help others do the same. I still wonder, sometimes, about the person I could have been if I never became disabled. Would she have the same friends? The same interests? The same soul? I have no way of knowing. However, I do know that the person life turned me into is someone I am proud of and want to continue being.