I Almost Died… Again

Going to the hospital is always an adventure. I had made the decision to go to the ER because I had been having trouble breathing for upwards of two weeks. I would wake up with a dry throat, dry mouth and hacking up a lung. It gets especially bad on Sundays, when it’s only my mom or dad with me and my brother for 16 hours of the day. Usually, my brother has a day nurse, but he was running low on hours so he won’t get her back until next week. At that time, however, all I knew was that something was wrong and I needed to find out what it was before it got worse.

When I’m home, I get to make all the decisions. If I need suction, I just ask for it. If something hurts, I ask for medicine. I have complete control over everything that has to do with my body. It’s not like that at a hospital. At least not for me. They’re not used to dealing with someone, in my condition, that’s completely in charge of their care. So they assume that I’m not capable, that I don’t know what’s going on.

“Has he fallen in the last month?” They ask my mom as they admit me. Now, I understand that they have paperwork to do and that they have to adhere to certain procedures, but the least they could do is acknowledge that I’m capable of answering that question. But they don’t. They repeatedly asked my mom questions without even looking at me. It didn’t matter how many times I spoke up they almost always looked at my mom. After about the fifth basic question I gave up and decided to just let my mom answer everything. I figured, it was just easier to let them do what they want to do. After all, they couldn’t fuck up too bad, right?

“All right, we opened up a bed for him. We’re going to move him up to the ICU”. Said the ER nurse as she walked in. If you have never been escorted from the ER to the ICU, let me tell you what it’s like. You have a team of nurses and respiratory therapists hauling you and all your life sustaining equipment down a corridor. They take you on a humongous medical elevator only to let you out at another long corridor. The lights are all fluorescent and there’s a distinct lack of windows. It doesn’t matter what time of the day you came in because time is irrelevant. The only context in which time matters is what time you have to get your medicine. At the end of this long corridor are two remotely operated double doors that make a loud clicking noise every time they open. To open them, you have to pick up a phone that’s mounted on the wall and identify yourself to the nurse inside. I don’t think it is an exaggeration to say that it feels like you’re walking on death row.

Once you’re inside, all you hear is the constant beeping of heart and oxygen monitors. They don’t go silent based on what time of day it is. To the monitors, the sun and the moon don’t exist. All that exists is your beating heart and your vital signs.

There’s a nurses station right in the middle of the floor, but you rarely see the nurses in it. They’re always going from room to room giving medicine or checking vital signs. All that matters to them is that their patients vital signs are okay and that there’s nothing visibly wrong with them because, to be fair, that’s all they have time to worry about.

“We will take it from here” says the ICU nurse to the ER nurse. Immediately, I’m surrounded by a gaggle of people ready to transfer me from my chair to the bed. They ask my mom what the best way to do it is. When she tells them that she just needs help carrying me their eyes widen, “Are you sure?”

“Yeah” she says nonchalantly. They’re not sure what to make of it, but they figure she knows what she’s talking about, at least about that. They got me on their bed and shoved my mom aside so that they could do what they do.

“I need to turn you to look at your back, okaaaaaaaaaaaay?” Said the extremely tiny nurse in her most condescending voice. The reason they wanted to turn me was to check for bed sores on my back. They assume that I can’t feel anything so they have to check in order to cover their asses.

Now, before I go any further I need to explain something to you. There are two kinds of trach’s: cuffed and uncuffed. When a trach is cuffed it has a little balloon inside of it that helps keep it in place. Doctors and hospitals like it because it’s generally safer for the patient. The problem with them is that it makes it almost impossible to talk. Because of that, I like to keep mine uncuffed. It’s a little riskier because there is a higher probability of it getting pulled out, but, as long as you’re careful it will stay in. It’s a fair trade off for me: make sure that people are mindful of the trach and keep the ability to talk. The problem is that hospitals don’t usually deal with uncuffed trachs.

I’m not exactly sure how to describe what happened next. I know they turned me and I know that I could immediately tell that they hadn’t given my trach enough slack. I can also say that I could tell right away that the trach had come out. I wasn’t getting any air and I watched the young nurse on my right look around, confused. It was obvious that he knew something was wrong, but he couldn’t quite figure out what. The tiny nurse on my left was dutifully inspecting my back and it wasn’t until the other nurse started yelling for help that she noticed anything wrong. I watched as everyone around me panicked. All they had to do was put the trach back in. My mom knew as much and started trying to push everyone out of the way.

It’s weird, everyone around me was panicking. There was lots of screaming. Lots of, “We need some help over here”’s. I was turning blue and my oxygen was dropping. I knew I was in trouble, but… I wasn’t scared. It felt as if I was outside of the situation, just watching everyone panic. It was… cathartic. I know what you’re thinking, “You almost died and you say it was cathartic?” Short answer?Yeah. For a few seconds, I could just sit back and watch the unmitigated chaos around me. Everyone was reduced to their most primal instincts. The mother, trying desperately to save her son. The young rookie nurse, who’s really just a kid my age, screaming for help. His hands shaking as he tries to put the trach back in. He really shouldn’t be there, but he is, so he’s dealing with it as best he can. He doesn’t realize how much we have in common. The tiny, mild mannered nurse pushed aside by my mom… desperately trying to figure out what to do. And then me, just calm as a cow. Not worrying about anything but watching it all unfold. Everyone was playing the role they were supposed to, and, just for a brief second, everything seemed okay.

I don’t remember who put it back in or how it happened. All I remember is my mom hugging me tight and asking me if I was okay. I looked at her with furrowed brows as if to say, of course I’m okay… why wouldn’t I be?


  1. Geigs says:

    Holy facepunch batman. I think i would lose my shit instead of calmly watching the drama unfold.

  2. Jo Riley says:

    May 22nd? Today is may 21st … ha ha (voice of Nelson from The Simpsons).

  3. Chuck Stemke says:

    You are a very brave young man, Raul!

  4. Nick Dupree says:

    Our stories are eerily similar, Raul. I also wrote a post called “I almost died again” http://www.nickscrusade.org/hey-everyone-i-almost-died-again/

    “Nick’s Crusade” http://www.nickscrusade.org/about/ was my campaign 10 years ago that introduced a bill in the Alabama state senate and ultimately sued Alabama Medicaid to stop them from cutting off all my care at age 21. I hope you are eventually able to sue MediCal under the precedent set in Olmstead decision as I did. The federal judge hearing the suit was able to force them to create a new waiver for those on ventilators turning 21, and that covered my younger brother Jamie (also on a vent, another eerie similarity in your case and mine) when he turned 21.

    More info on Nick’s Crusade here: http://en.wikipedia.org/wiki/User:NickDupree/About

    Please contact me if I can help in any way.

    Fight on,


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