15-Year Living Ataxia

I am making this video because I have seen others who had a similar experience with vivid dreams. Like many others, I am talking about it a year later. In the beginning, I spent hours contemplating whether it was real and how it could be. A year later, I don't spend hours, but I do think about it every day. It's just a moment here and there. I also think about how scary it was for my family to see me like this. I wonder what my boy was thinking. And my poor wife who was there everyday morning to night. I was looking over every test result and writing her questions down. My wife Dana knew how to organize updates from family, friends, and co-workers. By sending one group text to critical people, they passed it along. She even set up a weekly family meeting with my doctors so anyone with a question could ask. My nieces and nephews and my brother-in-law Doug were there. That's when I knew this had to be serious

I had a slight heart attack and needed a stent put in. Everything went well. I was out walking around at home two days later, and the next day stood Just the average day.

I had coughed up blood, not ordinary, and went to the ER. They ran a bunch of tests and released me. ……… just very odd….. the next day, I started again coughing up blood. I mean filling small cups. On the ER ride, and I was filling a bag…. Remember, I look at the people working on me. They needed to put me out for a couple of days the most. ……my thoughts at the time?? Two days later, I woke up…. In short, they didn’t see anything. That’s good but not really for my mind. I was released.

A day in a half later, I had just started to eat and drink again. Then I coughed and saw the blood on my hands. I just froze and didn’t say anything to my wife. I wanted to process a moment. I coughed again, this time more blood…. It wasn’t just a flew ok. I still remember telling and showing my wife. Very few times in my life I was afraid.." this was out of my control, and I still remember telling my wife we had to call the nurse. Within moments, there had to be 7 or 8 people from every department around me. This voice said out loud. Mr. Mauro, we must put you under for a couple of days. Your lung is filling with blood. We need to save your breathing airways. Are you ok with that…….. I said ok…… there was so much confusion. I talked to my wife for a few minutes…. I never thought there was a risk I wouldn’t wake up. ….. they said you ready? I felt so sleepy I didn’t even remember what I was speaking to my wife.



Four weeks passed, and I was still in a coma. I can't even imagine how it had to be for my sons and family that came weekly, and words couldn’t express what my wife was going through. I learned Dana held all the pieces together. She was always advocating for my life. It’s been weeks, and they can’t stop the bleeding. During this time, I had no brain activity. This is one of the stages of a medical induced coma. Between fentanyl and other combination of hard drugs to keep me still. The day came, and they stopped the bleeding. They were in the process of slowly taking me out.



This is where thing’s getting out of my control. I think as soon as my brain started to function where it got challenging not knowing the difference between a dream and being authentic. My dreams will call them. Where so vivid. The smell, details, everything about them was so natural. I didn’t know what was real or fake. At one point, I kept pulling out my IV lines to stop the meds I was on. I was scared for my life. I had dreams I was coming home on weekends sitting at the wrong house Seeing people stacked on top of each other connected to all these wires Thinking one of the staff had taken me to his home by tunnel from the hospital From seeing a life policy hung up on my wall and a counter running to zero, I had to stay alive after the time ran out.



Watching others who made a video of what happened to them helped me put some of these ideas or what I thought was really to rest. There are a few things a year later I still can’t shack. I have even sat out my window, seeing if I saw the same things. But one was f the problem I couldn’t even walk, so how could I possibly see what was outside my window

I want to thank a couple of nurses because they would come in and put their hand on me and proceeded To tell me something about the day, the weather, or just something. Not that I could respond. I felt recognized as being in the room. Compared to those that came in, did what they needed, and walked out. As slight as it seems, a person looking at you and talking to me was a huge difference. At this point, you have no control over privacy. You feel like a young child.



#knowataxia