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Facing Disability as an Adult Who Wants to Work

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Eric Church seems to put it best:

It’s over when its over
Ain’t it baby, ain’t it
Rips ya like a dagger,
Can it baby, can it
Wish we could do it over
Damn it baby, damn it
We had it in the air, we just couldn’t land it

So. Here I am.


As I rolled over yesterday morning, I sent my standard “not coming in today” text off to my boss. The pain just got worse and worse. I slept a few more hours, then forced myself to get some food in my stomach. Luckily, the sun wasn’t out as the rain was hiding those undesired bright rays. But here I was. Another Sunday (for whatever reason Sunday is becoming a pattern) that I was left calling out of work. Another Sunday morning meeting I wouldn’t be a part of. Another day where I know my boss was just wondering if I was OK and if I’d be able to be an adult who could actually hold a job.

The pain didn’t subside. By the end of the day I was drained. It didn’t matter that I hadn’t done a thing but be in pain all day. I showered hoping the steam would help. It didn’t. I went to make ice cream, but the peaches I bought weren’t ripe and I didn’t want plain ice cream. So I just sat on my floor.

All those intrusive thoughts came flooding back into my mind, but this time they wouldn’t leave. Nothing about my situation screamed that I could get through.

So it’s over when it’s over. It finally came to be. The day I knew I could either drop out of school and work part time to at least try and survive, or I could quit my job and hope to god I could find funds here and there to get by.

It’s kind of a milestone. I’m 20 and disabled.

Not 20 and planning my fabulous 21st. Not 20 and falling in love. Not 20 and successful. Not 20 and average college kid.

20 and permanently facing a long term reality that’s been eight years in the making. 20 and sending off emails to my doctors asking to sit down and go over what this disability entails. Going over if applying for disability is worth it.

20 and having to text my retired parents basically informing them I can’t support myself and I can’t maintain a job, so I’m just going to have to leave it behind and hope for the best.

20 and crying even though I know it means relentless pain on top of the existing sharp stabbing pains.

And so, I went to bed. Defeated. Knowing I’d have to get up in the morning and go to work, regardless of how I felt.

I’ve never woken up feeling so utterly worthless. It was like every ounce of who I am as a person no longer existed.

But my head wasn’t throbbing like I expected, so I got up. I made my coffee. Switched out my oils to something uplifting. And I got ready for god knows what.

But I knew what.

What 20-year-old do you know that knows exactly how to confront their able-bodied boss and go to work surrounded by able-bodied people, looking like an able-bodied person, and simply explain that my health is so bad I can’t do this anymore? I certainly wish this wasn’t a skill I’ve gotten fairly good at. I mean, I’ve had that conversation with half the people in my life. Teachers. Friends. Family. They’ve all heard some version of how my health will no longer allow me to do “x,” and this was no different.

I sat down with my boss. I worked out the wording so I wouldn’t be saying I’d finish out this next month but that would be it. I presented my concerns. I expressed that I valued my job and loved what I was doing, but that I couldn’t keep calling out of work. That I couldn’t handle the amount of days I was being scheduled. I asked for an accommodation, not all that accommodating to anyone but myself — two and a half days, three tops.

The job description says part time employees must work 25 hours in a week. I was asking to work between 15-20.

And my boss’s response was “Absolutely.”

It took just about every ounce of self-control to not burst into tears right then and there. Here I was, ready to accept that the job I’d fought so long to have for the perfect company in my field that pays pretty well, would have slipped through my fingers, far from my control. But here my boss was, saying what I was asking for was 100 percent doable. Saying we’d put me down for two-and-a-half shifts a week starting in August and if I was up to coming in on days I was “off” I’d be more than welcome to, but that we’d work with the two-and-a-half days. After I pushed back my start date to be hospitalized. After I called out within my first week and half. After I then called out about four more times, and left early a few other times.

I spend so much time reading about all the people in this world who don’t understand. The bosses who simply fire their employees. The coworkers who poke fun and envy days you get to “sleep all day” rather than come into the office. Companies that won’t allow lighting adjustments because LED lights suck. So many people won’t ever understand. Won’t ever care. Won’t ever look to see what potential someone brings to the forefront. Won’t ever try to work through tougher times.

So last night, when I started this post, all I could write were the song lyrics. This evening, I may understand Mr. Church, but just because it was in the air and I may not have been able to land it alone, I still landed on my feet.

Getty image by Seb Ra.

Originally published: August 7, 2018
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