How a Meltdown Changed My Life for the Better

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by Kevin Schaefer |

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I was about to wrap up my freshman year of college when I found myself absorbed in a whirlwind of emotions. Tubes surrounded me as I sat in my room attached to my Vest Airway Clearance System, a device I’d been using since my sophomore year of high school. I wasn’t sick. It was just another day of treatments and adaptive equipment, an ordinary day. Then all of a sudden, I allowed my mind to tumble down a rabbit hole of what-ifs and hopelessness.

There wasn’t a single catalyst that sparked my meltdown. It was a culmination of frustrations and simmering emotions that had been sitting for too long. Before I knew it, I was sobbing uncontrollably in front of my parents and unable to articulate anything that I wanted to say. I wanted to tell them that I wasn’t mad at them, but I couldn’t even form words. I stayed in my room for a while to let as much out as I could.

By the time I came out to the kitchen and saw the look of concern in my mom’s eyes, I managed to get out the words, “I’m just frustrated.” I was frustrated with the circumstances of my life, my physical strength steadily declining, and the limited amount of independence I had. I felt like a burden at times, trapped inside a sphere of having to rely on others. Meanwhile, friends were out experiencing college life to the fullest. Time was slipping away. I felt terrified that things would never change.

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Existential woes and piercing anxieties overtook me. And yet this catastrophic meltdown changed my life for the better.

When I had my meltdown, my parents were my only caregivers, and I wasn’t doing anything to acquire more independence. Within a year, I was enrolled in a government assistance program and spent that summer interviewing and hiring people. I had also started asking friends for rides and recognizing that there was more I could do than I’d realized. None of this happened overnight, but I’d come to a point of dissatisfaction, and I was ready for things to change.

Over the next few years, I did a series of practical things to enact change. I hired caregivers, gained work experience, and tested different assistive devices until eventually discovering the JACO robotic arm to compensate for my declining upper-body strength. But I also became more focused on tending to my mental and emotional health.

Before my meltdown, I wasn’t vocal about the things that frustrated and scared me. Even the day it happened, I was sitting in class a few hours later like everything was fine. It was only after this incident that I started talking more openly with friends and mentors, as well as strengthening relationships with people in the SMA community. I realized that the first step in improving myself was recognizing that I wasn’t OK and wasn’t where I wanted to be.

Now, nine years later, I’m in an infinitely better place than I was. I have more independence, more confidence in myself, and more room to give myself grace when things are outside my control. There are still daily challenges, setbacks, and frustrations that stem from living in an ableist world. But now, I’m OK taking things as they come.

So yeah, I’m glad my emotions exploded that morning in spectacular fashion. Letting it all out set me on a path toward liberation.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.


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