I don't live the brain injury but I live with the brain injury. And honestly, sometimes I wonder what's worse. It's tough and I hate that these things happen daily and families need to live this. It's hard everyday and what is worse is that is usually gets worse before it gets better. Troy and I have really tried our best to journey with people who are entering the brain injury world. We have made many trips to Spectrums Neuro floor, introduced ourselves to strangers and really tried our best to love on as many people who get to join the "Brain Injury Club",
A few days after Troys accident I had a couple come to visit. I had never seen or heard of them before this. I actually told the nurse they were at the wrong room :) Both of them, along with their son had been in an accident and all suffered severe head injuries. They came and just offered to help me on my journey whenever I was ready. They left their number and I never called. However, I talked about their visit for days. I told everyone about them. They gave me HOPE that there was a future for not only Troy but for me and for us. Just seeing them and hearing their story gave me more than I ever could expect at that time. That is the moment I decided I was going to be them. I needed to be that for everyone who needed hope when they feel like there is none.
As we started visiting we realized how truly frightening it was to visit a family who is new to this TBI journey. For many reasons but mostly because of the unknowns. I feel anxious thinking they might not want me there or they may feel like I gave them false hope if things don't turn out as good as what's a Troy's did.. So many thoughts go through my head.. I'm so acutely aware of the high emotions that run wild in times of trauma. It took many months of therapy for me to balance myself again. Trauma breaks you; emotionally and mentally. There's the question of, what's too much information?. I'm always so careful to stay focused on the now. For me, my story got worse before it got better. I went from literally willing to give anything for an eye to open to literally willing to give anything for one eye to shut, just for one minute! But is that the worse part or was it when he said "I hate you for letting me live. You did this to me."
Have I told you yet, how much head injuries suck?
What's too much? What's not enough? I look back and try to think if I really wanted (my) full story when I was in their shoes. I don't think I would have. It's too much and really quite overwhelming to think that your situation could be any worse then it was at that exact moment. Also, who's to say that every person with a TBI will act the same? They may never need a posey bed or restraints. They may never blame anyone for their injury. It would be unfair of me to "warn" them of a future that may not be theirs.
Also... what are the right words to say? I wish I knew. Having lived this I should know. Which leads me to believe there are no "right" words. It is what it is whether you say your sorry for me, whether you try and crack a joke or talk about the weather. Hugs. Hugs will do.
There is so much that goes into this. It's a journey that isn't measured in days or weeks, but rather, months and years. And that's something I'm just now understanding, two and a half years later. I prayed so hard for time to fly. At that point I was desperate, desperate to know the outcome. Desperate to not feel the way I did. I just wanted everything I couldn't have then. My thoughts were killing me. I asked myself every possible question under the sun about my future. I'm sure I didn't miss one. It hurts me to know this though. I can almost see people's wheels a turning when we visit; Will I ever see my daughter or son get married? Will I ever sleep next to my husband or wife again? Will my kids ever know their father or mother, sister or brother? No matter what the circumstance, piles upon pile of questions are being asked. And they don't need an answer, or opinions they just need to pass through your thoughts here and there. The biggest thing that has changed for me is that I rarely ever leave Troy while either of us are upset. That was one of my biggest questions: When was our last fight and what was it even about? Stupid, I know but you have a whole lot of hours to sit and drown in your thoughts . Whatever it was, it wasn't worth it knowing it may have been the last time I talked to him. Yes, i think that way and still do at times. Some say it's that crap called anxiety. I like to call it a new appreciation for life. I got a second chance. I may not get that again.
I often times give the people we visit, a journal. Writing for me was therapeutic. It helped take my mind off of all those questions. You never know how much it will effect you when you are no longer able to talk to a loved one. You miss them, immediately. I started talking to Troy through writing in my journal. I left nothing out. The good, the bad and the ugly. It became like homework. I took notes throughout the day just to be sure I had everything right for my journal entry for that day. I'd date and time each time I started and stopped. There were times I'd laugh thinking of how Troy would react if I had actually been telling him these things. Anything to help the days go a little faster. It's hard waiting for something, let alone not really knowing what that "something" is.
So, hows that for a jumble of thoughts for the night?
I usually go back and try and piece things together so it makes it look like my mind works in an organized fashion but truth is, it is what it is! No true direction with this post other than reminding you how much head injuries suck. Because... THEY DO!
Hope you all had a great Memorial Day weekend!