My AVM Story – Part 31

Below is another part of My AVM Story: the recounting of the discovery, removal, rehabilitation, and survival of an arteriovenus malformation. To read from the beginning of the story, click here.

First Day at MFB

I don’t remember too much from my first day at Mary Free Bed because I was exhausted.

I remember being wheeled around the foyer and to the elevators. As I looked around, it seemed like there was so much going on, so much detail, so many rooms, so many turns, so many floors, how was I going to remember how to get out of here? It didn’t seem possible that I had been able to recall such things with ease just a few weeks before.

When we got up to my room, I had a roommate. Bummer. I had requested a private room. How was this going to work? Would Dan still be able to stay with me?

My roommate was watching TV and didn’t pay too much attention to me as the van driver wheeled me in and stopped me beside the bed.

“Do you need help getting into the bed?” asked the van driver.

“Yes” I answered.

So off she went to find a nurse to help me.

My roommate ignored me.

I got helped into the bed, and Dan and family arrived.

I think various staff arrived then too to do some intake evaluations. My picture was taken to post above my bed (just in case someone tries to swap me out with a phony!), the social worker goes over details with Dan and my folks, the occupational therapist is talking to me…blah, blah, blah…

I nod off to sleep.

The Bathroom Incident

I’m not sure how long I sleep, but I’m alone in the room when I wake up. My roommate makes a comment about how I’ll never get better if I sleep all day. I can’t even come up with a response to that. I got out of the hospital today. What should I be doing right now? My brain is so fuzzy though from exhaustion (and medication but I didn’t realize that) that I just ignore her.

I need to go to the bathroom, so I buzz for the nurse. My roommate makes another comment about me not getting myself to the bathroom. I tell her that I cannot walk nor get myself up. I don’t remember her saying much else, so hopefully she got the idea to keep her mouth shut.

The nurse comes to help me to the bathroom. I tell her that my left side is my weak side. She say ok then proceeds to drop me onto the toilet. I land really hard and nearly fall to the floor. I’m shocked; flabbergasted that she didn’t guide me or help me more.

She immediately starts to explain how it is my fault that I fell.

I GOT OUT OF THE HOSPITAL TODAY, PEOPLE. I CANNOT WALK, SIT UP ON MY OWN, OR MOVE MY LEFT ARM/HAND/FINGERS. I CANNOT EVEN GET MY OWN TOILET PAPER. I NEED HELP.

Fragile Emotional State

Angry and hurt really doesn’t begin to describe my first feelings about Mary Free Bed after my first few hours there. Looking back I’m not sure where the communication broke down. Was it the hospital’s responsibility to tell them what condition I was in? Was Dan or my parents supposed to fill them in? Had they already done so and were ignored? Was I supposed to tell them? I could barely keep my wits about me to ask for help going to the bathroom. I was in no position to be explaining my physical condition. My brain simply could not put that many logical thoughts together and then verbalize them.

Once back in my bed, Dan came back. I have never been so happy to see his face. I felt utterly alone, helpless, and like a total failure.

Dan gets me in my wheelchair and we go for a walk to familiarize me with the floor. We walk around the common areas, and he points out the different things there are to do. There are soft seating areas with games, TVs, foosball, video games, and toys to play with. He tells me that I can visit with family or whoever out there.

Honestly, it looks like the worst place in the world to me. I didn’t want anyone to see me in the condition I was in. I had just had it reinforced a couple times by the nurse staff and my lovely roommate that I was already far behind in my healing process. Why would I ever want to hang out in these open areas where everyone can see me? I wanted to crawl into a hole and hide.

Dan and I continued our walk around the floor until we reached the end where it was a little bit concealed from the rest of the floor, and I lost it. I started sobbing. Dan had no idea what had happened, and all I could get out between tears and gasping for breath is, “She dropped me!”

I’m tearing up as I write this. My emotional state was so fragile then. Failure or the thought of failure has never been easy for me to take. Given the hospitalization I had just gone through, I couldn’t handle the “harsh” treatment I was getting. Already, I didn’t know how I could continue therapy there, which technically hadn’t even started.

Dan held me and promised he wouldn’t let them help me to the bathroom anymore. Just like when he held my head when I was transferred back and forth from my hospital bed to the stretcher chair. He would protect me and help me.

A Private Room!

We got back to the room with news that a single room had opened up. Praise the Lord! Goodbye crabby roommate; hello privacy!

Each room, single or double, has its own bathroom. Dan was allowed to stay in my room with me so it was a lot like staying in a hotel. He slept on an air mattress on the floor beside me, and I slept propped up in the hospital bed (there was still a chance for fluid to collect in my lungs which would lead to pneumonia).

Day 1 had come to an end. Dan was super excited to sleep lying down as he had been sleeping upright in a chair for the last four weeks.

Sleep, sweet sleep…

Next: My AVM Story – Part 32