I want to skip ahead a bit because I want to get to the present moment. For my readers who do not know, my husband survived his injury. He fully recovered physically, but mentally he had (and still does) some significant, though invisible, issues with his brain. For awareness, I think it is important to highlight the beginning, which was horrific, as well as what it looks like now. Those who struggle with this type of injury, be it from an accident or football or military service, are wrestling with effects which are invisible to those on the outside. However, those effects are very real to the families who deal with TBI on a day to day basis. These next two days, I will transition from the traumatic months in the hospital, to where we are now. Next week, we will switch to Bill’s section of this book.

During the time we have been in our current location in Cleveland, Ga., there have continued to be some significant challenges in our lives. In 2006, I was diagnosed with Uterine and Ovarian cancer. I cannot tell you how Bill stepped up to the plate while I was sick and going through treatments. 

One of my nurses said, “You take such good care of your wife. It is sweet to watch. Not everyone does that.” 

He replied, “You have no idea what she has done for me. It is my turn to take care of her.” 

And he did. Changed packing in my gut when my incision came open. Cleaned up bodily fluids. Held my hand. Dried my tears. Carted kids. Cleaned house. Really too many things to list, most of all he provided emotional support in the midst of my fear and kept me focused during my medical nightmare, until I heard those beautiful words “cancer free.”

Two years after my cancer, our house burned, not to the ground, but it was completely unlivable and we had to move out until it could be rebuilt. It was a major hassle, but compared to cancer it was only material things, a pain to deal with, but not life or death. We like to think of it as a 6- month vacation on the lovely Mt. Yonah, during the fall. The mountain is visible for miles around.  It is distinctive, with a granite face that rock climbers drool over.  It is dotted with vacation rentals, which are completely furnished and therefore, excellent places to go when you have nothing. In the fall there it is a kaleidoscope of color and the view from our porch was spectacular. I could think of worse places to be. It was another house to live in while ours was being rebuilt.  The theme of our lives continued to be new places and rebuilding. 

When the economy crashed in 2008, it crashed real estate development companies like the one Bill’s dad owned and Bill worked for. It left Bill jobless for a couple of years. Financial pressure quickly caught up with us, as it did for many, many families. Sending kids to college while dealing with bankruptcy of the company compounded stress significantly on all of us. 

About this time, Bill’s mom noticed some memory issues of her own, which eventually resulted in a diagnosis of a brain tumor. Seeing her decline was unbearable. For Bill, who was close to his mom, it seemed to trigger some changes in his personality. It was as if the events of everything over the past few years were compounding in his brain.  He became more withdrawn, short tempered, both things that happen to TBI survivors when they are under stress. I noticed these changes, but chalked it up to our circumstances, his mom’s illness, and constant life pressure.

In reality, I buried my head in the sand. I did not want to acknowledge the differences I was seeing in my husband. We were so many years post-injury I had thought his recovery was over, as good as it was going to get. However, when each of my four children came to me independent of each other with concerns I could no longer deny  things were changing. 

When Bill’s mom died, he took a drastic turn and became emotionally explosive for a time. For a brain injured person, emotions are hard to control anyway, add in the grief of losing a parent and it makes it nearly impossible. For me, it was like going back in time. For the kids, who had never witnessed Bill’s former outbursts, it was scary. They were not accustomed to the emotional roller coaster which now accompanies stressful situations. Others, outside of the family, noticed it as well. Then headaches started. Seeing as his mom had just died of a brain tumor, and we were seeing memory issues, headaches, and roller coaster emotions, I decided at the urging of my children, to take him to the doctor.

“Mom, something is wrong with Dad. I am worried.” It was that conversation which moved me to action. Action, I was scared to take  because I didn’t want to hear whatever a neurologist would say. Which was likely to be ‘time will tell’ and ‘I don’t know’. 

Bill downplayed the idea because he did not fully see what we could all see clearly, but he agreed to go to make sure the headaches were not caused by a brain tumor. We went to his mom’s doctor since he would know the recent family history.

The doctor asked lots of questions and Bill answered them with, “I don’t know why they say I have personality changes.” 

The doctor asked if he had ever hit his head. I laughed out loud as Bill said, “I was in a car accident once.”

The next question was “Did you ever lose consciousness?”

I spoke up and said, “Does a coma count?” 

I then explained he was in the hospital for months. From that point on the doctor addressed all his questions to me. 

Bill explained, “Everyone seems to think I am changing. I think that is ridiculous.” 

The doctor kindly explained, “Sometimes the people around a head injured person know better than they do. If the whole family has noticed differences there is probably something to it. I am going to order a scan and some other tests, to make sure there is not a tumor.”

We went back for the results of all the testing and he said, “No tumors showed up at all. But there is significant damage on Bill’s frontal lobe, which of course we knew, but it is quite a large area. I am very surprised that  Bill is functioning on such a high level with the substantial damage I see evident on the scan.” This was not a surprise to me. I had known my husband was a miracle for years. 

But then the doctor continued, “There is what we call “white tissue” surrounding the injury. As we age our brains soften, add into the mix a traumatic injury, and the tissue surrounding the injury degenerates more quickly. It is called encephalomalacia, and it can cause the symptoms you have observed. At this point, it is surrounding the injured area, meaning that part of the brain is the only part affected. This will cause regression back to his head injured state, since it is around the same area of the brain. How far, we do not know, but at this point, it is an age-related condition which cannot be stopped.”

Not the kind of news I wanted to hear.