Here we are… day forty? This is probably the hardest thing I have ever had to write. Forget probably… definitely… is the hardest thing I have ever had to write. But, in my promise to keep it honest… here goes:
I saw Daniel briefly yesterday (and by briefly, I mean for a few hours, which isn’t nearly long enough for me at all). He was very, very awake. I walked into his room to find him sweating and agitated. I immediately set my things down and took his temperature with the thermometer they leave for us in his room. Hmm… 98.1. No temp. Why is he so sweaty? And when I turned around I saw why. Our friend was trying to raise his head and shoulders off the bed. He was struggling to move himself around and because he still doesn’t have the strength to do that, I think he had been trying for quite a while.
Using the thumbs up and thumbs down technique I quickly began to ask him questions.
Daniel, are you in pain? Thumbs down. He struggles with thumbs down, so I was surprised he responded so quickly. Thumbs up is much easier for him.
Daniel, are you upset? Thumbs down.
Daniel, are you ready to get up for your shower? Thumbs up.
Daniel, are you ready to be in your chair after your shower? Thumbs up.
So, I went out and asked the nurse if they were ready for him to go through his daily routine. She was about to come in to get him, so I walked back in and let him know they’d start getting him ready. He still seemed frustrated and was breathing hard. I noticed the oxygen mask was back on and that it was full of condensation. So, I started with the questions again finally hitting on,
“Daniel, is the mask bothering you?” Thumbs up. I explained to him that the mask is back on because the canulas were irritating his nose and ears. That we needed some ointment and some time to let that heal before we could switch back to the other oxygen method.
The nurse came in and took him off for a shower at that point. Bless his heart, he had a rough start to the day.
After shower, and getting him into his chair, I was able to take him out in the sunshine for a bit with his sunglasses on. I joked with him that it was a good thing I had his shades in my car because he constantly left them there whenever I drove. He ignored me. I guess I’m not that interesting. After about 30 minutes of him sitting quietly, staring at the traffic on the street and me babbling at him, we went back inside. He seemed more calm than earlier in the morning and was still alert. So, I thought I’d try the yes and no board his speech therapist recommended. He wasn’t interested. So, I tried other questions with the thumbs.
“Daniel, is it night time?” quick thumbs down.
“Daniel, do I have blonde hair?” he looks at me and thumbs down.
“Are you Daniel (I used his last name)?” Thumbs up
“Daniel, do you know who I am?” thumbs down and a confused stare.
This is where my heart falls into my feet and I want to throw up. But, I didn’t. Instead I asked him, “Daniel, do you want to know who I am?” thumbs up.
I explained that I am his girlfriend. That we’ve been dating for months. I explained how we met and that I love him very much. He looked at me like an alien. I tried not to hyperventilate. I held back the tears in front of him and told him very slowly:
“That’s ok Daniel that you don’t remember me. I hope one day that you will remember me. We love each other very much. I made a promise to you before this happened. One day we were talking and we agreed that if ever one of us needed the other one, no matter what happened in our relationship, that we would always be there. I promised you that day. And after you got hurt, I promised you again that I wouldn’t leave you. So, even if you never remember me and I’m not your girlfriend anymore, I promise I will always be your best friend.”
He stared at me and then looked toward the window, his favorite place to stare lately.
I squeezed his hand and told him I had to leave (I had another appointment during the day, but honestly, I had to leave because I needed to seriously lose my shit and bawl for a minute) but that I would be back to see him very soon. I kissed him on the forehead and walked out the door.
So…commence hysterical sobbing in my car for approximately thirty minutes and then a drive I don’t remember at all. Someone said to me last night that it’s not the end of the world, but I can tell you, it absolutely felt that way.
Last night I did what I always do when confronted with an issue I don’t have an answer for. Research, research, research. I googled the hell out of that mother f… ok, you get the picture. And…. Here’s what I know and really already knew before I spent hours researching:
Retrograde Amnesia is a very real and almost certain byproduct of TBI. It happens. It’s rarely permanent. Pieces of memory come back like jigsaw puzzles over time and rarely does that happen in order. Random bits of information get restored back to the brain in no particular sequence.
Antegrade Amnesia is something Daniel doesn’t appear to have. That’s a recollection of events or learnings post trauma. He remembers things he is taught now, so he knows I’m there. He just doesn’t know my significance in his life. Coupled with Mary’s constant presence, he never feels alone, and that’s the goal.
There are things called “Memory Islands” that happen to TBI patients. Certain areas of information that don’t make sense to them, even though they recall other events or circumstances related to a person or a place. The islands tend to fill themselves in over time. Usually triggered by a familiar smell, sound or place, they will suddenly have clarity about whom someone is or where they are spontaneously. I’ll keep singing to him. Maybe that will help.
Daniel’s neuro rehab specialist told Mary today that he is a 3 on the Rancho Scale. I would have sworn he was farther along than that, but I am wrong. Not surprising since I’m no doctor. I’m going to paste a link to the Rancho scale here for you so that you can see where he is and what may come next. But basically a three on the Rancho scale means he’s not doing things purposefully and we can’t count on him to remember, know where he is or who he is with consistency. I know I’ve seen him recognize people, let’s hope yesterday was a bad day.
Bottom line is that at this stage of his recovery… and I need to remind myself… from aSEVERE traumatic brain injury, we can’t expect him to know or do much. I have to remind myself that the type of catastrophic injury he has, says that statistically, he shouldn’t be with us right now. I’ll say again, he is a miracle. He is changed, but he is alive.
When relating yesterday’s events to a girlfriend last night she smacked me in the face again with a great question (she’s really good at that):
“Does his knowing you change the way you feel about him?
Of course not.
“You have your answer then don’t you?”
See, it wasn’t a question for me though. Absolutely I want him to remember me. I want my boyfriend back. I love him. But, would I leave him if he didn’t ever remember me? No!! Not because I would be holding out false hope, but because I love him and I made a promise. One I intend to keep. Because he needs me right now. Because I need him to get better and be a whole person again. Life won’t feel right if he doesn’t. No matter what happens between us, I am his and he is mine. In what capacity will be determined later. But for now, I’ll be here.
But if he calls me by another name when he does “wake” up… it’s totally over.