“She Looks Fine” | Reflections from a Caregiver
Categories: Being a Caregiver
By Kelly Lang, Brain Injury Association of America Advisory Council Member
If only I had a dollar for every time I’ve heard those three words. Of course, I am thrilled my daughter does not have scars or other physical signs following her traumatic brain injury, but that doesn’t mean she doesn’t have challenges. Surprisingly, her appearance has become an issue.
Olivia’s injury is the result of a horrific motor vehicle accident that happened in November 2001, when she just was three years old. She was not expected to survive; her pediatric neurologist called her a “miracle child.” After reviewing the MRI, the doctor commented to me he had seen many brain injuries over the years and that hers was catastrophic. He’d worked with patients who had less severe injuries and never learned to eat, walk, or talk again. I’m proud to say that she has learned all those things and more.
She does not remember her “before.” This, too, is a curse and a blessing. At three, she just started attending preschool two mornings a week and loved to play with figurines and Barbie dolls. She had just begun learning her letters and the concept of sharing. She does not have any memory of those times now, and I am not sure if that is due to the injury or the fact that she was only three.
While in kindergarten, following two years in the special education preschool, Olivia did not stand out amongst her classmates. She was in a program for kindergartners who needed a bit of extra help learning, but other than that she fit in. Issues began once she reached first grade and her learning difficulties became more apparent. Her processing issues slowed her down and the social issues started escalating. As the years went on, these issues would continue and, in some cases, get worse before any improvement.
I always made a point to meet with her teachers before the beginning of the school year for the purpose of explaining why she had an Individualized Education Plan (IEP) and how her disability affected her. A number of these teachers and case managers approached me during the year and commented on how helpful it was to have that information given that Olivia walked into classrooms trying to blend in as much as possible. Once they got to know her, the issues became more apparent.
She graduated high school in June 2017, which was a huge accomplishment. She has taken a few classes at the local community college, and many of her professors have asked her why she has accommodations. We had to meet with the director of disability services at her school. After Olivia left to get to class, the director said, “Wow, she can communicate so well!” I did not have a response. I walked out, incredulous that the director of disability services would make that comment – especially to her parent.
Unfortunately, having an invisible disability has been a detriment to her over and over throughout the years. Peers have a difficult time communicating with her because she cannot process the information. She becomes forgetful and does not respond to messages, she will not be able to drive, she is fearful of loud noises, etc. I could go on and on.
When a doctor or therapist comments about her “looking fine” after an appointment, I am bewildered. These are the “experts” and I need them to understand her ability and disability. I realize they only see her for a fraction of her day and she is on her best behavior, always eager to make a good impression. I need them to listen closely for the clues that indicate she is not fine. She is struggling; her family is struggling.
During a recent family vacation, we hiked in the Smoky Mountains. The climb to a waterfall was beautiful and the trail was not very crowded. The descent was a different experience. The trail dropped off a bit to the right if you walked a few feet from the path. Olivia was afraid to walk. I walked on the right side giving her more room to navigate away from the drop off. Our system was working well until another hiker or group came along walking up the trail. It was narrow and only allowed for two or four people, depending on the width. Olivia did not want to move to her right for fear of falling down the cliff. I tried to help, but we received a lot of dirty looks. I wished we had something to indicate she has a disability and could not walk securely.
I am eternally grateful Olivia did not suffer any noticeable physical impairments. There are some but not any visible to someone who does not know her well. My goal is to educate others about brain injury and the effects it has on the survivor as well as the family. I hope others will learn things are not always as they seem.
Three Tips from A Caregiver’s Perspective
- No one knows your loved one as well as you do. Follow your instincts and listen to your gut – it’s often right.
- Doctors do not know everything. As we all know, each brain injury is different. Medical professionals can give you a prognosis, but it is only an estimate.
- Keep advocating for your loved one. If you think something isn’t working, speak up, get second and third opinions, and ask questions. Speak to other caregivers to get support and guidance and never give up.
Visit biausa.org/caregiver for additional information and resources.
This article originally appeared in Volume 15, Issue 4 of THE Challenge! published in 2021.