Rewriting the script of brain injuries, illnesses and diseases

I've been absent from this blog for waaaaaay too long. I've posted a lot on Facebook and am now getting back into the habit of making sure I do the same on this blog, while digging deeper into my passion, Turning Empathy into Action.

An online discussion group topic on traumatic brain injury had me typing in the middle of the night …

This reaffirms what I learn from TBI survivors and caregivers as I'm focusing on creating upcoming books and related materials on coping with the emotional and everyday challenges of TBI. It affects not only the person with TBI but everyone around them. This is true with virtually all brain-related injuries, illnesses and diseases. I've learned this from my writing on Alzheimer's and being a caregiver for my father-in-law a few years ago, when he was diagnosed with Alzheimer's, which we learned after his passing was actually vascular dementia.

I've attended about 50 Retreat & Refresh Stroke Camps as a volunteer — where I am this weekend in Illinois. I've been attending some TBI camps in the last few years and will go to at least five this year, including a children's TBI camp this coming week in PA.

I've heard just about everything as I lead survivor or caregiver discussion groups at Stroke Camp and interact with survivors and caregivers in other ways around the country … from the hopes to the frustrations, from the lack of public understanding to the intense social isolation, from pure love to the joys of the simplest things in life. The same is true for those affected by TBI.

We often hear and speak about the "new normal" after a brain "event." Most people don't get that that "new normal" is constantly redefined as the brain reconstructs or adjusts itself every second. And there is a great deal of impatience and misunderstanding about fatigue, often viewed as laziness or a way to command sympathy. I've witnessed the intense pain and tears of so many survivors whose families belittle or ignore them or focus only on their INabilities or DISabilities.

Though medication alleviates many of the challenges I face with the depression I've lived with for many years, I understand that my brain gets tired more easily, and my body does, too. God bless my husband for understanding that there are days when I just need to sleep or "chill" or I'm not going to be MY best … which is the "best" for him and everyone I love …

Brain injuries, illnesses and diseases ARE a human tragedy, and each of us has a chance to rewrite that script for better understanding and compassion. Communication is the biggest key to promoting that connection … survivors and caregivers and families talking, listening, observing and learning from each other the challenges each face in coping with the changes. That connection is a powerful force in healing bodies, brains and relationships.

Nearly everybody fears what they cannot control or fully understand, and the human brain is the one of the scariest unknowns in the universe. Even "normal" people have bad days when their brains are simply tired or are trying to process too much. We are surprised when the person who always has a steady positive attitude snaps at us. Alas, each of us is human …

Thanks for setting my brain "on fire" enough to write this in the middle of the night …