Читать книгу HOPE BEYOND TRAUMA - Cynthia Smith - Страница 8

Emergence of the Invisible Trauma

Every defeat, every heartbreak, every loss, contains its own seed, its own lesson on how to improve your performance next time.

–Og Mandino

As Tanya’s rehabilitation progressed, her doctor decided it was time to take her off the Amphotericin, the potent medication that fought her yeast infection. I quickly concluded that the yeast infection must be gone. Another success, YES!! We’re on a roll!

Hold on … the doctor stated that he didn’t know that the yeast infection was gone, but to continue with this medication would threaten Tanya’s life once again. It was a calculated risk: to keep her on it could kill her, and if we took her off, she could die if the yeast infection was still present. The doctor’s gut told him it was time to take her off the drug. We would just have to wait and see if this was the right move. Even though I was scared that Tanya could die, I understood the doctor’s reasoning and agreed with his decision.

As it turned out, the doctor was right to follow his instincts. The yeast infection was in fact gone, and Tanya’s rehabilitation continued on course. Thank God the doctor had the courage to follow his gut instincts!

Richard finally received his long-awaited promotion. We held the ceremony at Rio Vista so Tanya could pin the stripes on her Dad’s uniform. It was a great day of celebration. Family, friends, coworkers and hospital staff joined in with a big cake and punch. Richard was beaming and Tanya looked so proud as she pinned the stripes on her Dad’s uniform.

Our evening routine included a goodnight call to Tanya. Out of the blue, during one of these calls, she asked me if she played the guitar. I was caught off guard and amazed, as we had not mentioned her guitar since the accident.

I enthusiastically replied, “Yes, you do!” Tanya asked me to bring her guitar the next day. I was in for a pleasant surprise, as she placed the guitar on her lap and quickly started playing as if nothing had ever happened. Her playing skills had been totally unaffected by the accident. It felt like a miracle, another beam of hope in those dark days.

I learned much later that our body often retains “muscle memory” much longer than other memories stored in our brain. This may explain why Tanya still remembered how to play guitar. Early on in the rehab process, she had gotten into the pool and started swimming proficiently with no coaching or new training.

As we conquered each step on the road to a new mobility and dexterity, it became more and more apparent that our daughter’s social skills had also been wiped out by the accident.

The executive function of her frontal lobes was severely damaged, and now that she could walk and talk with some confidence and appear normal, her lack of social skills became increasingly noticeable. Her invisible injuries were becoming more prominent than the physical ones, and far more difficult to deal with.

It was much easier for me to accept Tanya than it was for family members and friends, because I had attended all of her therapy sessions and educated myself about brain injury. I was more informed about what could be expected from a child in this condition, as I witnessed her daily progress and learned from the professionals.

It was more difficult for others to relate to her. This lead to enormous frustrations and created stress in her relationships with people she knew before the accident. When friends and family members visited her, unknowingly, they put a lot of pressure on her by expecting more from her than she could ever deliver. Tanya was not aware of their disappointment and continued to act as though everything was just fine. She had no clue things were not the same. It took quite some time before the reality sank in that she no longer fit in with her social group.

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.