This is the biggest challenge faced by many people with brain injuries. When their disability is invisible, people are unaware of it until it reveals itself in sudden and often unexpected ways.
Tanya, like many survivors of brain injury, was unable to edit her thoughts. She would say whatever came to mind impulsively, without any ability to control herself. This quickly became very embarrassing and frustrating. Friends, family and strangers alike would meet a 15-year-old who looked very normal, with impeccable language skills. She could at any given moment say something that was totally inappropriate and insulting without any sign of awareness of wrongdoing.
Looking back, I remember how painful it was to witness my daughter’s inability to speak appropriately. These embarrassing situations were so frequent that I learned to let them go. There is one story that I recall vividly that well exemplify the challenges we faced.
I never had any fashion sense and always relied on my sister Carolyn, Richard and then Tanya to help me purchase stylish clothes. Tanya loved to help me shop and made the process bearable. She did a terrific job of selecting great outfits for me.
While she was in the rehabilitation hospital, I had a military social function to attend and needed a dress for the occasion. Very reluctantly, I ventured to the stores. Without her, it felt very lonely and painful. I missed Tanya’s laughter and sarcasm when I selected something awful. After some time, I found a dress and was confident I had made a good choice. I decided it would be a good idea to show it to my “fashion consultant” and seek her approval.
I went to the hospital with a friend who had praised my purchase. (Yes, I was on the right track!) We were looking forward to showing it to Tanya. The dress had a white pleated top with a high neckline, three-quarter length sleeves and a knee-length black skirt. It was very conservative, by most people’s standards.
I took the dress out of the bag and proudly showed it to her, anxiously awaiting her approval. She first looked at the dress, then at me and announced, “Oh, you’ll look like a REAL SLUT!” I had never heard Tanya say the word “slut” before, let alone referring to me! I was mortified and could see that my friend was embarrassed. We were speechless, then we found ways to keep the conversation going, trying to ignore Tanya’s hurtful comment and pretend it hadn’t happened.
Unfortunately, other people did not have my day-to-day conditioning with Tanya to know how to respond and react to her inappropriate comments. This created many socially awkward situations. We were on continuous alert, trying to anticipate her words and explain her condition as one of the socially debilitating and invisible effects of her trauma.
At first I found this very hard, but with time I realized how important it was to explain to others what was going on so that they could put the situation in the right perspective. Then there were other times I just had to let it go. Sometimes people understood, but more often they did not.
Tanya continued to learn how to take care of her personal hygiene and dress herself. She was now able to walk without assistance and attended many therapy sessions. Improving her social skills while playing games with other patients became a major focus. Card games and poker with “the guys” gave her the greatest reward. The guys didn’t know how focused and competitive Tanya could be. She was the only girl in the group and they were all caught completely off guard when Tanya tried to cheat to win. She thought it was great fun. I was happy they weren’t playing with real money!
One morning the physical therapist approached me about the possibility of Tanya speaking, along with a group of brain injury survivors, at local junior high and high schools. Each survivor would talk about how they had sustained their brain injury and the issues they were facing. These speaking engagements would begin soon after school started in the fall. She asked me to lead this group, and I was thrilled.
The time finally came for Tanya to be released from the hospital.
The staff had been wonderful in the way they had worked with Tanya. They had become part of our extended family. They celebrated and cheered along with us as she achieved each milestone along her difficult road to recovery.
One chapter of life after the accident was ending and a new one was about to begin. I stood, relieved, happy, exhausted and ready (or so I thought) for the next phase. I had attended almost all of Tanya’s therapy sessions and had been at the hospital almost every day from April 11 to August 15. I had read, listened and learned more each day about brain injury.
My mind raced with questions now. Would Tanya be able to adjust to living at home? How would we adjust as a family? Would Tanya try to wander away from home? More importantly, if she did, would we be able to find her? Curiosity and fear accompanied my thoughts.
Once again we ventured into the unknown.
As a caregiver … I learned to
Reach out. Talk to people, find books, websites and support groups that can help me.
At Home in the World
Do not fear the winds of adversity. Remember: A kite rises against the wind rather than with it.
–Unknown
The much-awaited day had finally arrived when we took Tanya home. We said our goodbyes to our hospital family and to the world that had become so familiar. As our car left the premises, I rejoiced at the thought that my daily commute to the rehabilitation center would be finally over.
While that chapter was coming to a conclusion, I knew that another one was just beginning. I wondered, How would Tanya behave out in the “real world?” How would Tanya cope with the normality of a life that had been so suddenly taken from her?
I had come to terms with the fact that life would never be as it was before the accident. There was no turning back now; the new reality was sinking in and it was full of uncertainty. As we headed toward home, I was deluged by an array of contrasting emotions, a strange mix of relief, doubt, excitement and fear. Suddenly I felt very inadequate outside the protected environment of the rehabilitation center.
In preparation for our return home, I had spoken with many people in the hospital. Both hospital workers and relatives of other patients had warned me that it would take time to reach some sort of normality, to establish routines and build a life around our new Tanya.
As I cared for her in the hospital, I had come to accept the hospital environment. We were not prepared for how difficult it was to deal with Tanya at home. From the very outset, it had been clear that life as we knew it would not come back any time soon. Now Tanya would be a 24-hours-a-day, 7-days-a-week commitment.
There was a bit of celebration the day we arrived home. At first, the transition seemed to be fairly smooth. Tanya was quite unaware of her deficits and believed things would get back to normal very easily. She quickly got together with her high school friends. Unfortunately, her friends soon discovered that Tanya was no longer the same person. Gradually, they started to fade away, as they did not know how to relate to her anymore.
Despite her efforts, Tanya was unable to fit in with the peers who were close to her prior to the accident. She couldn’t keep track of conversations and would respond with off-the-wall comments, or make hurtful remarks without realizing it. Sharing a friend’s confidential information with others did not bode well either. To make matters worse, another fatal accident took place, claiming another young life. Tanya insisted on attending the funeral of her school buddy. This proved to be too much for her to deal with, and it took us quite a long time to get her back on track.
Tanya wanted so much to be normal and to fit back in the environment she had left behind, but it proved impossible to resume her teenage life as she once knew it. This was something I had learned was very common after a brain injury.