the truth
Some truths of traumatic brain injury…
The unpredictable memory loss that comes and goes—one moment here, the next moment gone. This roller coaster of absence and presence is a very stressful kind of loss - an ambiguous loss. Unlike death, there is no closure, no official validation, and unless you are the survivor or live with the survivor you really don’t know what it’s like. You may have done a little research and feel like you know - the truth is, you don’t.
After a year you would think that I probably more than anyone, would understand the tremendous impact that short term memory loss has on a person’s life. I thought I did too but the truth is, I didn’t. Watching Mike digress over the last month has allowed doubt, confusion, helplessness and hopelessness to affect my ability to deal with his injuries. I don’t know the Mike that wants to give up and it has been difficult to stay positive…it is painful, it hurts to see him so tired of trying. I keep my emotions in check most of the time but one morning after he couldn’t take our rehab routine more than 8 minutes, I had a ”come to Jesus” meeting with him. We talked (I talked mostly) for about 45 minutes. We talked about how far he’s come in this last year; learning to feed himself, learning to walk, navigating a computer again, etc, etc, etc… we shared feelings, we made new commitments to each other and based on the conversation, Mike was there. He knew he needed to be present, he knew he wasn’t done, he was ready.
Later that afternoon when we were going over the events of the day I made reference to something he said that morning. He looked at me puzzled and said “I don’t know what you mean, what are you talking about?” I reminded him of our conversation that morning and gave him cues to help him retrieve the memory. Nothing. He had nothing. And then it hit me…Oh, my God, what it must be like to not remember what just happened. How that must feel…how do you get through the day and have a sense of accomplishment? Ask Mike any day, any time what he’s doing…he’ll answer “nothing, just sitting here at my house”. It finally clicked with me. He doesn’t realize how much work we put in to his recovery, he doesn’t know how amazing his recovery has been because he doesn’t remember how he was this morning, much less how he was last month or last year.
We diet, lose a few pounds and we start to feel good. Energized by remembering how we felt before we began seeing progress. We can see the end in sight, our hard work is paying off. Our memory allows us to measure success, what we looked like, how we felt but Mike doesn’t have that ability to measure success, he can’t remember. No wonder depression rears it’s ugly head after a brain injury.
The truth. The journey recovering from brain injury doesn’t get easier, I thought it would somehow. Mike had a neuro psych test during this past summer and during the review the neuro psychologist told us that the nature of Mike’s brain injury would result in a loss of friendships. He said the ramifications of that void would greatly effect Mike and we should be prepared for bouts of depression. Mike’s attitude had always been so positive, he was determined and driven, I couldn’t imagine that was just around the bend. There were quite a few details of that review I didn’t agree with or believe and this was one. I knew these friends, I knew how strong they were bonded, I knew they would not abandon Michael when he needed them most.
The truth - I believe in my heart that what was written to Michael on this blog was the truth, that everyone that visited him in the hospital truly cared about him, that there was truth in the hopes and prayers for his recovery. But I am finding this is also the truth; survivors do see changes in their relationships after the injury. They may not hear much from friends and previous co-workers and feel alone. Michael is feeling the change, feeling the void - Michael, I know you’re going to be upset so let me apologize for posting this but I think it’s important to share. These are some of the things Michael has said to me…
“I don’t know what to talk about - I’m not working, I can’t drive, I’m not hanging out anymore and it makes it hard to know what to say. It’s easier just to be by myself. Nobody has any idea what I am going through. They don’t understand how hard this is or how hard I try. I’m tired. I don’t want to sound like a &@%%#! or weird, “I’m lonely, can I go hang out with you? I wish you would call me?”…I’m not going to say that Mom.”
One of his closest friends stopped by the other day. Mike was so excited about him coming over but I watched as Mike struggled to stay in the moment, a challenge not to retreat. When his friend left, Mike said “I thanked him for coming over, do you think he knew I appreciated it?” Brain injury is forever and Mike is forever changed. Old friends may feel uncomfortable…they may not know what to say, how to act, or how to help. It may be harder for them to relate to Mike - the same in many ways, but an injury to the brain changes who we are. He inhabits the body, he shares the history but he is not the friend they knew. It’s complicated. This is uncharted territory for all of us…it’s no one’s fault. The truth is they haven’t turned their backs on him. The core friends reach out, they call when they can, they come over when they can, they try and they feel the loss just like I do. It is not easy but we ALL give what we CAN.
With the frontal lobe damage Mike sees only how matters relate to himself unless you bring it to his attention. Most of the time he’s not aware of how his actions and words effect others. When he does spend time with someone, he doesn’t realize that keeping his face locked on his phone or computer, not participating in or initiating conversation might be viewed as anti-social or perceived as though it didn’t matter if they were there or not. He knows how happy he is to spend time with them and he believes people know that it means alot without having to say a word. He says “mom, we’re not girls!”
That same frontal lobe injury also causes a lack of awareness about impairments. Over time this gets better but is this increased insight possibly creating a negative reaction to the new “self?” Possibly. I know the change in awareness is a positive sign of improvement, but dealing with it emotionally can be quite challenging.
The truth? Michael injured just about every part of his brain; the cerebellum, the pons area of his brain stem, the occipital lobe, the parietal lobes, and the very important frontal lobes. He not only survived these devastating injuries, he has recovered more function in this one year than anyone thought possible. I don’t ever forget how far we’ve come…I thank God for giving us such a wonderful loving support group, and for giving us the strength and where with all to handle this trauma with grace and dignity.
The truth? Recovery is a continuous evolution of change and adaptation with the ever-present tug to slip into the denial mode of expecting life to be as it used to be.
It’s going to be ok.
xxoo