Brain injured survivors struggle with many symptoms. Some symptoms go away, others are permanent. Often, symptoms that go away come back with a vengeance. And even years after post-injury new symptoms can show up.
The classes I took at the Brain Injured Group (BIG) taught me the path survivors walk is never linear. I'm so glad I learned this early on in my recovery because I would have been constantly frustrated.
For the first four months after injury, my vision was significantly damaged. The floor and the ground were constantly moving. I couldn't accurately assess distance and my depth perception was totally off. I often tripped and fell.
By the one-year mark, these symptoms were almost gone. A month ago, they came back. I've fallen down the stairs a couple of times and fell on the driveway and shredded my legs. My nickname is now "Tumble Weed.” Humour has become my sanity saver.
Prior to injury, I was a quick thinker and words rolled out of my mouth. As the months went on in my recovery, I was able to think more clearly and able to speak without long pauses. Recently, I've deteriorated in these areas. I've gone back to having difficulties getting words out, frequently confused about what to say and sometimes drawing a complete blank. This reminds me of the struggles I had when I was learning English.
Like I mentioned earlier, healing from a brain injury is far from linear. Us survivors can be all over the map. Not only is this frustrating for us but also for the people in our circles. When symptoms clear up, survivors are happy and so are their family and friends. When symptoms come back or new ones show up, this is disappointing for everyone.
For me, because I'm currently challenged with stringing words together, answering people's questions can be overwhelming. "Diane, are you feeling better?"
"I thought you were over that."
"Why aren't you back to work yet?"
Lately it's just better for me not to talk to people. I find trying to explain myself utterly exhausting.
Stress can bring back symptoms or invite new ones. Depending on the severity of the injury, some symptoms may never go away. Survivors of brain injury can tolerate only a fraction of the stress we were able to manage pre-injury.This wreaks havoc in family and friend circles. Survivors who were always available to help their family and friends are no longer able to function on standby.
I have talked with brain-injured friends who, like me, are constantly having to advocate for ourselves, dealing with requests for babysitting, hosting holiday dinners, assistance with problem solving are unrealistic expectations.
Comments like "you're being selfish" and "you're using your brain injury as an excuse" are common responses to survivors who attempt to establish boundaries with the people in our lives.
Another misunderstood aspect about brain injury is the fluctuating energy levels. Sometimes survivors have good days or good periods during the day that we function quite well. And other days we can't manage anything because of fatigue, migraine headaches and depression which render us useless to be of any help to others.
It is a common assumption that survivors pick and choose when we feel like helping out and when we can't. The truth is we never know when we are able to do things and when we can't. When requests are made of me, I've learned to say "I can't promise you anything. I will have to see how I feel.”
I can't say enough about how vital it is for brain injured survivors to have support. There are days we are drowning in despair. We get it that our loved ones are suffering too. I pray every day that survivors and the people in our lives can build a bridge of mutual understanding.
