Monthly Posts

One Year Later…

This month marks one year. One year since I almost lost my life.

I don’t like to say that—almost lost my life. I would much rather say could have. I could have lost my life. I feel like could have doesn’t sound as scary. But it’s still scary, no matter what I say.

I think about one year ago all the time. I think about how it all happened. I only get snippets of the before. Vaguely. Barely. Maybe just one memory before I was intubated.

The clearer memories always start with a question: “Where are you?”
I answered this, but my answer was wrong. I thought I was in New York because that’s where my mind was when I was asleep. I had dreams about it. A lot of them.

The second question was “What year is it?”
I answered this, but my answer was wrong. I remember thinking really hard about it. Thinking we were in January of 2019 because…it should have been. I don’t know. I thought it just had to be. But, it was May of 2018.

The third question was directed toward my husband: “Do you know who this is?”
I peered over at him and I knew, but I was skeptical—but less so because he had played a hero in my horrible, nightmarish dreams. He saved me on more than one occasion, so I knew who he was. I was sure of it. I got that answer right.

The next three weeks were foggy and confusing. I was there, but not really. Friends and family were visiting me and talking to me, but I didn’t know if it was real. I wasn’t sure.

The pain felt real. The frustration from not being able to move felt real. But I still didn’t understand, fully, what had happened to me.
I remember feeling very lonely one particular night. I couldn’t sleep, restless because I was tired of being in the same room, in the same bed, in the same position. I wanted to move and I wanted to do it by myself. But, I just couldn’t.

And I was angry because my sister and my husband were sleeping feet away from me, but I didn’t have a voice loud enough and I didn’t have the strength to shake them awake. Even though I didn’t want their help, I was mad that I didn’t have the option to wake them if I wanted to. And I didn’t want to nurse to come move me. No way.

I stared up at the ceiling and cried because I would have given anything, in that moment, to just stand up. To just get out of that bed. I wanted to go to the bathroom all by myself, without any help. I wanted to roam the hallways. I wanted to go to the snack machine, even though I couldn’t eat because of the NG tube.
But I could barely move my arm on my own and I felt so very alone.

The following weeks and months were the hardest I hope I ever have for the rest of my life. If there is anything harder, I would probably wish I were dead.
Someone recently asked me what motivated me through recovery. One thing was jealousy. I watched the people around me and I was jealous of them. Envious of the fact that they could stand up on their own, go to the bathroom on their own, leave the house and do what they wanted on their own. I wanted to be them more than anything.

I wish that I had the ability to convey exactly all of the thoughts, feelings, and emotions that I have dealt with over the past year, but I can’t. Quite honestly, I don’t even think I want anyone else to truly know my struggles. It’s a part of me, something that I live with every single day, a reminder of how grateful I am for this life.

There are times when I question if this is all a deep sleep dream or real life. There are times when I feel fuzzy or foggy, just as I did in the hospital.
I sometimes wonder if there is an alternate universe—the one where I didn’t wake up.

It’s been a year and I don’t know if it has gone too fast or too slow. It still feels so fresh to me and I think it will for a very long time.

For those of you who don’t know, I was in the hospital for a month with
Pneumocystis jirovecii pneumonia (PJP) and acute respiratory distress syndrome (ARDS), having been intubated for 9 days. The “deep” sleep caused my muscles to atrophy, and I had to regain the strength to do everything again. I couldn’t walk, stand up on my own, use the bathroom alone, or even lift my arm to my face for a long time. Recovery was a bitch, to say the least, but I am now as healthy as I can be and fully recovered, physically.

My condition was a complication of my chronic autoimmune illness. I am followed and monitored very closely by several doctors who are currently working together to get me back in remission.

As of right now, I’m doing great. And I have every intention of staying that way!

🖤, Jo

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