The Others: Being Disabled and Not Sleeping

Brian Rivera
May 10 · 4 min read

Being disabled, a lot of the time, is about being sick because you’re disabled, sure, but also being sick when you don’t have to be. I’m not going to go on about how insurance is broken. Everyone knows that bit and, if you don’t, just give it a few years.

People that aren’t disabled are just people that haven’t lived long enough yet.

But here’s the actual thing of it. I actually am properly disabled. See?

That’s me in my wheelchair holding my new puppy. Part of me wanted to show you I’m disabled. Most of me wanted you to know my puppy’s cuter than your puppy.

A little over a month ago I moved to Denver. In the move, the moving company lost my oxygen machine. Generally speaking, moving companies damage things, but how exactly they could lose a big baby blue piece of medical equipment, I will never know. Without the oxygen machine, the world has become a little bit … hazy. It’s sort of like the feeling of having a beer in you but with none of the positive side effects.

I called the moving company and they referred me to a website to file a claim. Their website actually has a section for lost oxygen compressors. How is that even possible? Is there a secret black market wherein people are secretly selling oxygen to one another? How is this a common problem?

Anyway, one of the reps contacted me to let me know they’d look for it. In the meantime, he wanted to know if I could send him pictures of my oxygen machine. Who are these people that just have pictures of their oxygen machines? Like just sitting at home, chilling, taking selfies like …

#oppositeOfSexy

To make things more fun, due to the lack of oxygen, my bi-pap (a breathing machine) goes into alarm every thirty minutes. That means I wake up every thirty minutes to a beep that is is only fixed by blowing really hard into the machine to make it think it has pressure.

Incidentally, I found a waver to allow me to obtain an oxygen machine for thirty days if I was willing to pay $900 for the device. Sure. Why not? I had the machine delivered. And on that night, I would sleep.


Okay so apparently that thing I said earlier was wrong. The breathing machine wasn’t alarming because it had no oxygen. It just happens to be broken too. And you can’t just obtain one of these particular devices (that I know of … new black market scheme emerging …). You have to get a prescription from a respiratory therapist. But, in order to speak with this particular kind of human, you have to get referred by a more general practice doctor. However, the only doctor I could find in all of Denver that was accepting new patients was about a thirty minute drive away. Did I mention I can’t drive?

Actual conversation I had on the phone with a nurse:

“Hey, so my bi-pap is broken and I can’t sleep,” I said. “Is there any way I can visit you today?”

“Well, we can schedule you in today because we have some openings and … oh wait you’re new? We can get you in a month from now,” she said.

“But I can’t sleep and no one else is accepting new patients,” I explained.

“You should definitely get some sleep because that’s really not healthy,” she said.

“So can you let me make an appointment?”

“Well it looks like we have an opening a month from now.”


Eventually I did find a doctor … a day later. Not too bad but, as I said … thirty minute drive. I called the highest rated transportation company in Denver for an estimate.

$275.

I decided to risk a taxi. These rides are risky because they aren’t dependable. For example, I was at a party with my company and we called at about 10PM. At about 3AM, my dad ended up picking me up from my COO’s house because no taxi ever arrived. That’s not the only time that’s happened either.

The good news is the taxi arrived. The bad news is it ended up costing $200 round trip.

Here’s the point of the thing. It took me about a month to get to this point. I have an oxygen machine ($900), I got to a doctor ($200) that was able to refer me to another doctor ($…?) and I still can’t sleep.

How does any of this make any sense to anyone?

Brian Rivera

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I work at Amazon as a Software Development Engineer. I have a passion for digital strategy and development.