Five years ago today...

Five years ago today, my dad survived cardiac arrest--a very rare thing to survive, for those of you who know. He was substituting for a bass player in a "battle of the bands" contest, a completely spur of the moment thing...and it saved his life. I have never written about that day/time on the blog (except for one brief post in July of 2006), and it is still difficult to do so now. But, today is a celebration. And I am going for it. (And, this post, long as it is, isn't even the entire story. There are so many moments that I can't record...just because they are still too painful/emotional to relive, or because they are too private to talk about.)

I remember everything about that day.

I was working for the Institute of Reading Development in Birmingham and got home around six or so. I was so tired and I was sitting at the kitchen table when dad kissed me goodbye and told me he loved me.

That evening, as I tried to unwind from the day, mom and I were talking about how it probably wouldn't be long before dad had another heart attack. I know. That sounds too weird to be true, but that is what we discussed. He usually lasts about two years before needing to go back into the hospital for either an attack or for more work. It had been over two years, by then. We just sighed and talked about how we needed to be on the lookout for signs.

I went to bed early, and the next thing I knew mom was opening my door and telling me to get dressed because dad was being taken to the hospital. No one gave us many details and it was horrifying because it was the first time we had not been with him when something happened. Also, I just felt that something was different.

We made it to the hospital (after I broke every traffic law known to man) and waited in the emergency room. He wasn't there. We must have waited close to fifteen minutes before an ambulance pulled up. It was dad, but no one would let us see him. For me, that was the real indication that something was different. They also put us in that scary room off to the side--the one where they put families when someone is dying or about to die. Somewhere in the middle of all of this, I panicked because I had forgotten my cell phone at home and I couldn’t reach people.

But people started showing up, including my dad's friend who was with him (and actually caught the whole thing on video—one I still have not watched to this day, and I never will). He told us it was really bad, and that dad just collapsed without warning. According to our friend, dad was in the middle of playing a song and just collapsed. He was also having a seizure, because they had a hard time getting the bass out of his hands.

But being at that contest saved my dad's life, because he was right downtown, close to a fire station. And the people around him in that moment...wow. These are the things I heard happened: One lady, a stranger, popped a nitro in his mouth, in case he was having a heart attack. Everyone cleared the space and they remained silent, out of respect for him. A huge security guard did chest compressions and mouth to mouth, his strength at least keeping oxygen flowing through dad's body even without a heartbeat. The firemen all worked on him, shocking him four times.

But most amazing was this: a fireman's intuition. After the fourth shock didn't work, they tried to cover my dad with a sheet. One fireman, a man who showed up to my dad's hospital room several days later, terrified that he had done the wrong thing, said that he had to try one more time. He got out the really big paddles and shocked dad one last time.

He got a heartbeat.

From there, they rushed him to the hospital, but dad was still unconscious and in a constant state of seizure.

The doctors came out and told us that he wouldn't live. That if he did live, he would be in "a vegetative state."

Finally, once it became clear that he had made it past the immediate moment of death (though by no means out of the woods), they let mom and I go back and see him. His coloring was good, but he was still seizing and he was on life support. As horrible as seeing all of that was, I was glad to be with him, even for a moment. The worst part for me during that time was knowing that he was all alone back there. And even if he wasn't alone, he was with strangers. Even if he was going to die, I wanted to be there with him. The separation was torture.

But they only let us stay with him about two minutes and then they moved him to a room. Up in the trauma unit with the glass rooms, where they took him, a nurse, who had worked three straight shifts, told us to go ahead and make our decision about continuing life support. We should consider just turning it off, she said. She didn't have a great attitude, but it really wasn't her fault. She was exhausted and overworked. We told her we couldn't do that at this point. We had to know more. She kept telling us that he would never wake up, and that even if he did he would never speak or function in any normal way ever again.

We just let her talk, but my mom was close to losing it. Again, we told the nurse we weren't prepared to discuss that at this point and she finally left us in the private room meant for making that decision.

For twenty-four hours, dad was in a seizure. I can't even tell you what a relief it was when that stopped. But, it couldn't be a good sign that he had been doing that for so long. The brain damage from the original event coupled with the damage accrued during the long seizure...well, you get the picture.

But the next day, a man came along and did a brain scan. He couldn't give us the results because he wasn't a doctor, but he pulled us to the side and said that the results looked surprisingly good in his opinion. There was definite damage, but it wasn't nearly as bad as expected. The doctors thought so, too, but they still weren't hopeful that he would wake up.

What made me incredibly angry during the first 48 hours is that so many doctors would come into the room and speak as if he wasn't there. They would also say such horrible things in front of him. I don't know what he heard or didn't hear, but I became upset that there was the possibility that he was hearing such things.

I can't tell you what a relief it was when Dr. Anne Lewis, my dad's heart doctor, came in and started talking to him. She was upbeat and cheerful and kind, telling him her plans for treatment and what she was going to do. Dad lay unresponsive, but she kept on. That was love, people. Love of profession. Love of humanity. Whatever. But it was love. She has my respect until the day I die. Yes, I have told her all of this.

Three days post the original event: I am in dad's room by myself while mom goes to a room to take a shower. We are all exhausted. I have spent so much time in hospitals over the years that I can read monitors and do all kinds of minor things, so I stayed with dad and watched him, along with the nurse, who sat in the little chair near her own monitor outside of the room. I kept talking to dad, telling him about God knows what. I know I was laughing about nearly fainting earlier that morning, as I watched a nurse draw his blood. It was funny because I had never had that reaction before.

I held his hand as I talked to him. I rubbed his fingers. And, then, I felt something. I felt his index finger just slightly move across mine. I remember not being able to breathe and trying to convince myself it was just a reflex. I asked him to do it again. Nothing. But a few minutes later, there it was again.

I continued to watch him closely, and every few minutes I asked him to open his eyes. I watched so closely that my head hurt. I didn't feel or see anything again.

The next day, I walk into the room and see my dad's friend Dave talking to my dad, who is also named Dave. Dad was still seemingly unresponsive...except that he had his hands in the air in a strange position.

Always in the background of our lives for the last couple of years was Dave. Over six feet tall and outweighing my dad by at least one hundred pounds, they shared many things, including the same name: Dave. Dad was "Big Dave" and the friend "Little Dave"--kind of like naming a miniature poodle Zeus. But the names only referred to age difference. My dad, significantly older than "Little Dave," was a music teacher, mentor, and friend to "Little Dave." And "Little Dave" had been there with him the night all of this happened. Three days later, he hadn't gone to sleep yet--he was completely traumatized.

When I walked into the room, Dave looked at me and asked me what was going on with dad's hands. At that point he got a page or something (he worked at the hospital), and left the room for a moment. When he did, I tried to get dad to lower his hands. He did, but it was a struggle to get him to do it. But the minute Dave walked back into the room and started talking, dad lifted his hands again. We both jumped and then I realized what dad was doing. He was holding his hands in position as if he was playing the bass. Obviously, hearing Dave, his bass-player student/friend/brother, caused a reaction.

Later, that day, I was alone with dad again, and asked him to open his eyes. And then I saw it: just a tiny bit of blue peeking out, so fast and then it was gone.

The nurse came in and I told her what had happened, but she said it was only reflex. "They do that."

But I knew what I had seen. He did it in response to command, and, as the hours passed, he did it more and more until his eyes were fully open. Now, when I say "open," I don't mean focused. There seemed to be nothing there. He wouldn't look at me or squeeze my hand, but he would open his eyes and sort of look ahead...but it was an empty gaze.

But there was something else going on during all of this...

Amazing friends and family showed up and provided for us in ways that I couldn't imagine. I have never seen such support. Food; hours and hours of waiting for us in the lobby, not caring if it took hours to see us; coffee; hugs; prayers; love.

Incredible doctors and nurses. Custodians who were so kind. Strangers coming by to offer help.

...

By day four, dad had come out of the coma. He fought the breathing machine and was eventually taking more breaths on his own than the machine was doing for him. He would open his eyes on command. Everyone was amazed, including our exhausted nurse who cried and cried, and she apologized for trying to get us to turn off the machines (which, by the way, we would have done if necessary). Doctors, specialists, strangers: all came to see the "miracle."

Even more amazing? Dad started to talk--well, once he was off the ventilator. (And, he really hasn’t stopped since then…which is really funny because he was always so quiet!) He made sense and asked questions. He was confused because he thought he was living about thirty or forty years in the past, and there were some hard moments (like when we had to tell him about several people being dead, and the fact that he didn't know me and thought I was his sister). But this didn't last long.

Around this time, the paramedic--the one who decided to shock him one last time--showed up. He was in tears, feeling as if he had made the wrong decision and that dad was in a vegetative state. He was terrified to go into the room to see what he "had done." My mom put her arms around him and convinced him to go in, where dad smiled and said hello and thank you to him (once mom told him how the man had saved his life).

After several more days, the fog started to clear, at least in terms of knowing who people were. I don't break down easily in a crisis, and the only time I cried was when my dad didn't know me. I remember sobbing in the hallway, feeling so ungrateful because, even though dad had beaten the odds and we had so much to be thankful for, I was sad because dad didn't know me.

And you know who pulled me through that moment? The nurse. The one who knew she had been wrong. She held me and told me that he would know who I was. And, she was right. The next day, he greeted me and she was as excited as I was.

The rest of the hospital stay was great (except for the nerve-wracking morning where they put in his defib. and pacemaker...I knew it had to be done but was terrified for anyone to touch him or put him under anesthesia again...he came through fine).

Dad was moved to a regular room, where he excelled in his physical therapy (no one could believe that after what had happened he was walking down the hall after only six days since the original event). He could do things for himself and could recognize family members.

His only problem: short term memory. Wow, I remember those early days! Repeating myself every couple of minutes, telling the same story over and over.

Things weren't a bed of roses once we left the hospital: we all slept in the same room downstairs for days, because dad would get up and wander around. There was the stress of preparing and giving medications. His mood swings (dad was always the calmest person in the world...this was a new challenge). His memory loss. My shattered nerves. Ugh.

And life has totally changed. He isn't the same person, so I don't want to imply that he magically woke up and all was well.

No, he isn't the same. But that is okay. The first year was really rough, especially with the alterations in mood and how his brain damage revealed itself in strange ways. But there were beautiful moments, too, like:

1. Helping dad each night with his cognitive therapy homework, and him doing such a great job that they "graduated him" out of the program much faster than many others.

2. Holding his arm and walking with him through Target, getting "our exercise," as we put it. (Too hot outside to walk in the neighborhood.)

3. Taking him for coffee at Books-a-Million, where the employees, knowing what had happened, never lost patience with him and always were so nice to him.

4. The acceptance of friends and family of the new Dave...and even those who didn't accept him and faded away.

5. The million little things people did in acts of kindness. Only a few mentions and thank-yous: Melanie bringing me Starbucks and being there for me in countless ways...I was never so happy to see someone in all my life; Jeff and Jess giving me bear hugs and going with me to feed my dog; my Grandmother Frances and Larry rushing to the hospital and staying with us all night; Denny and Ronna, though I haven't seen them in so long, rushing from Huntsville in the middle of the night to be with us; Wayne and Melanie Foster showing up at the hospital in the middle of the night; John Hall and his wife, for staying with dad when it happened, too...and his wife, especially, for riding with dad in the ambulance; for Dr. Anne Lewis, for giving us hope and making my dad her personal mission; for my dad's neurologist, Dr. Potts, for understanding; for James Stephens, for bringing food and remaining my dad's friend, even after all of the changes; my Aunt Ginny and Uncle Ron for coming down and helping and visiting so much; my cousin Laura for coming to the hospital and calling me so often--and T., too; for my Grandmother Jean and my Uncle Chuck, for rushing out and keeping calm; my dog, Casey, for staying with me every night when I would go home to take care of him while mom stayed at the hospital...for staying by my side all night when I was too traumatized to sleep in my own bed and, instead, slept on the couch for eight nights in an empty house; our neighbors who brought food over and who still have such patience with dad; for everyone at Books-a-Million in Tuscaloosa for being so great to dad; for my Aunt Jeanne and Uncle Theron for rushing up and keeping us laughing and comforted; for the nurses that helped us in difficult and frustrating moments; for my Aunt Mary, for bringing food and fun; and for everyone else...I haven't forgotten you...believe me. I am just running out of time.

6. Personal to me: seeing that everything that happens in life is connected. That all of my experiences up until this point had prepared me for this phase. It has been extremely difficult--I won't lie. I have had times where I wanted to run away. But, I have also gained far more from this "life event" than I ever lost.

7. I also realized that I have an incredible amount of strength and will. I have tried all my life to be respectful of authority, but I realized that I do have the power to stand up for myself and those I love when I need to do so. Others may not like it, but I will always do what I have to do to keep those around me safe and secure. (This lesson in particular played out in my actions at the hospital at times and since then. It bothered me to do some of the things I did, but I wouldn't change a thing.)

So, things are different. It has been five years and I now find it hard to remember life before this happened. It altered my way of living forever, but that is fine. There have been challenges and heartbreaking moments and anger and all of that. But we are human.

Still, above all, there has been love. A hell of a lot of love, too. This didn’t just happen to dad. It happened to all of us. And we have come out better for it.

Comments

Amy said…
So beautiful and very brave! Best wishes to you and your family.
Susie said…
Oh, thank you, Amy! It has been quite the journey! I appreciate your kind words! Hope you are well!

Susie
James said…
I am always thinking about how fortunate he was for things to have lined up like they did that night. He could not have been in a better place. He is a wonderful man and couldn't have a more wonderful family.
Susie said…
James, I am so sorry for leaving you out of the thank you section! I just added you. I was crying the entire time I wrote that entry, and it doesn't read well...but I just can't go back and edit it! We love and appreciate you so much. You are one of the great friends who didn't abandon dad or treat him differently when all of this happened. THANK YOU. You will never know what that means.

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