There is an element of familiarity that comes with being a long-term brain injury survivor. The medical terminology used by so many professionals who serve the survivor community is no longer alien to me. Terms like neuropsychologist, neuroplasticity, and diffuse axonal injury no longer leave me looking like a deer in the headlights.
For the last six-and-a-half years, most every time my life intersected with the medical community, it has been because of something related to my brain injury.
All of this changed a month ago as a perfect storm of non-TBI medical challenges started rolling in. And for the first time in many years, my brain injury took that back seat as new life lessons were learned.
As the weeks progressed, I began to realize that this new experience has value, perhaps value to you. I want to share a few things I’ve recently learned that I feel are important. Though seen through the prism of a brain injury survivor’s eyes, these suggestions can apply to most anyone with a heartbeat.
Write it Down
Over the last couple of months, I’ve lost count of how many doctors I’ve visited. Not a week has gone by that I’ve not seen a specialist of one kind or another. Before I head out the door to an appointment, I make sure my spiral notebook is in hand. If it’s an appointment that I attend alone, my wife Sarah and I go over any questions that either of us has in advance. They all get written down. No longer do I get to the office and have that nagging feeling that I’ve forgotten something.
Bring a Trusted Friend
Over the last couple of months, I’ve put all my doctor’s appointments into one of two categories: either it is a solo appointment, or it’s a critical appointment, and I want a second set of eyes and ears to be there. Let’s get specific. One of my doctors ordered an ultrasound. As this was simply a look inside me, I deemed this to be a solo visit. There was really no need for a second set of eyes. A recent visit, however, to go over MRI results in detail was not a solo flight. Sarah sat by my side.
Why is this important? A couple of hours after that appointment, Sarah was capable of recalling important details that I had already forgotten. If it’s an important appointment with perhaps a lot of information to be presented, do yourself a favor and don’t go it alone!
Ask For It In Writing
Sitting with a doctor as he or she shares copious amounts of information can be overwhelming to those of us who have trouble taking in lots of information at once. While I take my own notes, I have asked every doctor for a summary of the day’s appointment in writing. Without exception, they have all been happy to do this. Much to my surprise, the printed office visit summary sometimes contains even more information than our conversations revealed.
Don’t be Shy About Your TBI
My “official” medical record shows that I have a brain injury. But that fact is buried deep in my records. I have learned not to assume that every doctor reads all of my medical history. If information is spouted rapid-fire from a new doctor, I am not shy. “Can you slow down just a bit? I have a brain injury, and it takes me time to process new information.” Recently, when the possibility of surgery was presented by another doctor, I let him know that I have both a brain injury as well as PTSD. No one is helped if I withhold information.
Don’t Believe Everything you are Told
You know that saying about not believing everything you are told? I have a long history with this. A year after my TBI injury, I was told that my recovery was over, that any gains would be minimal at best. I’m glad that I ignored that one.
A couple of weeks ago, a doctor looked me straight in the eye and let me know that if I moved the wrong way, I would be forever paralyzed. Sarah was by my side for that one and later said my eyes widened to the size of dinner plates. A week later, a spine specialist actually laughed when I told him that tale, letting me know that my damaged disk was incapable of paralyzing me.
Not to be outdone, a second doctor let me know that my ultrasound had detected a growth and that I needed a visit a local surgeon as soon as possible. This time it was the surgeon’s time to laugh as she shared that I was given misinformation. Having filter issues at times like this are fun as I asked the surgeon if I could give her a hug, such was the overwhelming relief. She accepted my hug with a smile.
The take-away is this, not every option or diagnosis is spot-on. Please know as well that this is NOT an invitation to differ with your doctor, nor am I dispensing medical advice. I’m simply sharing my own experience.
Navigating the medical waters isn’t easy for anyone, but it can be particularly complicated and overwhelming for those of us who live with a brain injury. By taking a few simple steps, and using a bit of common sense, I’ve found new compensatory strategies that have helped me in this new chapter of my life.
And if they have helped me, perhaps they can help you as well.