Changing Relationships

Along with our changing personalities after a brain injury, our relationships with others change as well.

When one sustains a brain injury and the neurons in their brain are torn, twisted, or sheared, they have the ability to rewire themselves. This process is known as neuroplasticity. Neurons reroute themselves around where the damage has been done. Rerouting involves creating an alternative neural pathway by deleting damaged neurons and forming a new pathway between active neurons. Resource: What is Neural Plasticity emotive.com This creates a whole new personality.

Some people think you will return to the way you were preinjury, but that has not been our experience. When our personality changes, everyone that knows us must get to know us all over again, and so do we. We are strangers even to ourselves. It can take years before we get to know our new selves, our personality, and capabilities, which seems ever changing for years after our injury. Our family and friends are often surprised by our new behaviors, as are we. Many of our friends don’t know what to do with “different”. It can scare them because they don’t understand it. And many people do not want to understand it, so they leave our lives. This is a very common theme after brain injury. Veronica sustained a severe traumatic brain injury and I, a moderate tbi in the same car accident 15 years ago.

Where Greg and I used to share parenting, for a long time after my injury our older daughter, who was 17 years old at the time of our injuries, took over the mother role. I resisted every step of the way. It doesn’t feel good to have your child making the rules and telling you what is and is not a good idea to do. She was the one cooking meals, taking Veronica and I to therapy sessions and telling me, “No mom. It is not a good idea to go to Walmart. You get too tired.”

You must allow yourself to mourn your loved one who lived. I did not really do this until around three years after Veronica’s injuries. That is the first time Greg and I talked about her lost dreams, and I really understood. We were swept up in surviving and I couldn’t see reality. I cried and cried but got through this process quickly. This is not to say that occasionally I do not lie in bed at night and cry when the realization of Veronica’s losses become apparent and as a parent, we want everything for our children. My biggest hope for Veronica is that she can find happiness through it all. And she assures me frequently, she has and does. I couldn’t be more grateful for that. One thing I have always known was that if we did not show we accept Veronica just the way she is now, as her parents, the ones she looks up to and loves most in the world, she would not learn to accept herself. And that we did. I believe you can be sad for what was and for what might never be, and at the same time, show your loved one acceptance. And we have done that right from the start. I am proud of that in a big way. It took Veronica about 11 years to fully see and accept her deficits and even understand, this is her. She cried about her losses for many years. That is one thing that is very different in our relationship. She was very confident preinjury and now we spend a great deal of time lifting each other up and reassuring each other that we are ok. I had a hard time looking at myself as injured because Veronica was so much worse. Then for many years I thought I was stupid. My relationship with myself suffered greatly because it was hard to accept my own deficits. Veronica and I cannot work. It took a long time, but I now know that money is not what makes a person’s worth greater and you can find joy and your own worth when you concentrate on what you can do instead of what you can’t do.

Greg, to this day, cannot talk about the day of our accident, the things he saw, and our hospital stay. Something broke in him that day. He is a changed man with severe anxiety. The pressure on him to take care of his family and keep us safe is almost too much. He is worried every time we leave the house. On rainy or snowy days, he will say, “I prefer if you stay home.” And we do. Our relationship is very different than it used to be. The beginning couple years were the roughest for us. I remember one morning he asked me a question and I so often write myself notes, I ran to the kitchen to see if I had written the answer down. I forgot my glasses and ran back to the room to get them because I could not see what I wrote. Then once in the kitchen again, he yelled something to me, and I couldn’t hear him. He yelled at me, “You can’t see. You can’t hear, and you can’t remember. He was angry. My feelings were deeply hurt. I know I’m different. I talked to him about it later and he said he was joking. Well, I did not think he was. I spoke to a counselor about this because none of it was going to change. I asked her, “What can I do?” She said next time he says these things to you, you say, “And you chose to stay.” That one little sentence did make a difference. We talked about it, and he didn’t say things like that anymore. It’s frustrating living with a brain injured person, much less two.  My husband is a Saint.

I began looking to Greg for more reassurance, advice, and answers because I became very unsure of myself. To this day, 15 years later, it is still often this way. My comprehension is slower, I think slower. So often I need him to repeat himself because I cannot keep up with what he is saying. I do my best to take care of him, although he does so much to take care of Veronica and me. There are two things he really appreciates being done on a daily basis. One is having the dishes done before he gets home from work and the other is having dinner made shortly after he gets home. I have learned that with all the things we are unable to do after our brain injuries, as a spouse, it’s good to talk about what is most important to the other that we can accomplish to help them. I used to expect Greg to leave me notes when I needed reminders. Now I write my own reminder notes. I’m capable.

We had the beloved opportunity to raise Veronica twice. Who wouldn’t want to raise their child twice if given the blessed chance? I am her caregiver, and we spend every day together. I have watched her grow and change and change some more. We have always been close and are even closer now. Something happened when she was in the hospital. After being told she would show inappropriate behaviors I decided right then after experiencing it just a few times, that I would never be embarrassed by her behavior. That took a weight off my shoulders to not care what other people thought. I know what she has been through. Seeing her come so close to death, and then coming back to us, although I struggle with patience, I rarely do with her. She does things wrong sometimes and makes poor decisions, but it’s like she is perfect in my mind. Not perfect, but perfect to me, just the way she is. I’m able to give her so much leeway in behaviors I don’t think I could give to anyone else. We correct her, but for me, it is not with anger that I do this. We spend every day together. She is capable of everything physically, but still needs a lot of guidance as far as the decisions she makes. We are the best of friends. We support each other through everything. She cries, I cry. I cry, she cries. When I make mistakes, she lifts me up and helps me know I’m still ok, loved, and worthwhile. As does Greg and Kylie. Our family, our relationships are closer after our injuries. Although Veronica and I are definitely different than we used to be personality wise, Kylie and Greg were just so scared we would die that they just wanted us to live even if we are different. Kylie still occasionally says, “I miss my sister.” It breaks my heart, but at the same time, she is grateful Veronica is still here. We all decided from the beginning that we would love and accept Veronica in any condition God left her with us. From the day we thought we may lose Veronica I thanked God for the 15 beautiful years I got to have her in my life. My relationship with God changed. It became stronger and I became more faithful. When Veronica came out of a coma, we saw the positives every single day. We did not look at what she was unable to do. We looked at the new things she was able to do with joy and excitement. When in a vegetative state, I laid in her bed, touched her gently,  loved her. I laid in her bed every single day of her hospital stay after she came out of a coma; and her stay was three months long. A new thing for Greg as a father was, he shaved her legs and armpits with an electric razor for her when she couldn’t. We felt that she needed to keep her dignity. We knew if she could, she would do those things for herself. So, Greg took care of it.

Oh my Kylie. We are so close, more than preinjury. Our relationship has grown over the years. Something very different with us is she is extremely protective of me, still mother’s me at times. My dad was dying, and she went with me to another state to support me. I told my family I could go by myself. I was adamant about it. They wouldn’t let me. I am so glad. I get lost so easily and Kylie drove us everywhere we went. She held my hand everywhere we went. She asked me 100x if I was ok. It felt like she held my heart gently in her hands to make sure I would be ok. We held hands on the airplane on the way home. We did not have a great relationship when she was a teenager, but growing up is hard. Now we are friends, mother and daughter. I still have deficits. She knows I think slowly, and she can see it when we are in a crowd. We had people over and she saw me struggling to find my words. She winked at me from across the room reassuring me that I was ok. She does that now. It feels like a hug. I know not everyone, but in fact many, have such difficult relationships with their family members now, but we have become closer to each other.  I thank God for that every day.

If you are interested in hearing more about our trials and triumphs, please read my book titled,

A Miracle a Day, One Day at a Time: Hope After Traumatic Brain Injury

https://store.bookbaby.com/book/a-miracle-a-day-one-day-at-a-time

Press the blue link above. It is one place you can purchase my book. It is available many places they sell books online. You can also purchase it on Amazon right here from my website by going to the menu, press book, scroll down, and there you have it.

May you all know many blessings and concentrate on them instead of the trials.

Not next week, but the week after, in my next blog, I will talk about a new treatment for tbi’s and concussions.

Have a beautiful week.