“Your brain injury isn’t real.” “You just do what you want.” “You use brain injury as an excuse.” These are the messages people with brain injury receive, overtly or covertly, from people (family, friends, ministers, doctors, aquaintences, anyone) who do not believe them. What effect does it have on a person striving and struggling to function as fully as possible no matter the obsticles to be told they are pretending, faking, or exagerating their brain injury? Devistating. Horrific. Sometimes life altering. Always, damaging.
No one understands brain injury. Not the world’s leading neuroexperts. Not the brain injured person. Not family or friends. No one. Yet my years of ministry to others with brain injury and their caregivers, as well as my own expereinces with doctors, ministers, family, friends, and aquaintences, have revealed just how common it is for people to believe they understand brain injury. They don’t, but out of their ignorance and arrogance they take actions, make decisions, and say things as if they do — and this can spread their ignorance and arrogance — aka prejudice — to others. Believe it or not, but the brain injured person really has physical damage and it CAN cause the oddieties you see that seem to make no sense.
Brain injury is weird. It is weird from the inside, and, from the outside, it looks weird and sometimes people mistake weird for “fake” or exagerated or psychological when it’s actually just plain head-scrach-worthy. While every brain injury is different and effects each person differently, there is a commonality (and folks with other brain challenges like stroke, brain cancer, disease, etc, experience much the same thing, though for different reasons): we all have to learn to stay within our daily brain budget. You may have received this link from someone, asking you to understand their brain injury. You may have stumbled on it yourself, or be the person with brain injury trying to understnad what is happening and why the “world just seems so hard.” If you want to understand the weirdness of brain injury in yourself or someone you love or care about, start by understanding the daily brain budget.
I am fifteen years into life aware I have brain injury. My eighth concussion in 2002 left with with cognitive deficits (memory, focus, attention, variable brain fatigue, sensory overstimulation, and more) and vertigo. My first concussion was 33 years ago. When I was ignorant I had brain injury, between the ages of 12 and 31, life had waves of times when it “just seemed harder” — especially in the weeks, months, and years after each concussion along the way. I unwittingly compensated — learned how to get around the deficits I didn’t know I had.
As with all of us and our caregivers, I am the expert on my brain injury and the doctors are my consultants. The doctors ran out of ideas years ago. I haven’t. And my ideas are working and helping, and they may help you also. They are not specific answers, but rather ideas that you and your caregiver together can examine and apply to your specific situation and symptoms and needs and learn together how to run forward more fully.
Brain injury raises a lot of questions. Some people aren’t comfortable asking questions. Other people are very comfortable knowing what they think they know have don’t see a need to ask questions (St. Michael defend us!).
There are many lists and guides out there the describe the symptoms of brain injury. There are not many that explore the weirdness of brain injury and what that does to family and friends or even bosses and co-workers. Educate yourself about the facts of brain injury, lest you be the equivalent of the person in 1853 not believing a blind man can use a stick to “see” and ignorantly proclaiming “They don’t need a stick, clearly they can see, even in the dark!”
This is what my wife asked me last night as I was in bed. It seems absurd. Yet with brain injury it makes perfect sense, and it well illustrates what families with a brain injured person do all the time to accommodate their brain injured member.
I’ll break it down for understanding. If light changes suddenly, unexpectedly, my brain short circuits. I’m done. In that instant, I no longer have the brain energy to ignore the constant vertigo. I instantly need help to walk or I have to slump to the floor. Thus, before anyone turns a light on or off, regardless of where I am in the house, they announce it, give time so I can cover my eyes, and then turn it on. This has become normal for us.
Though there are a rare few doctors whom I respect, I now know why the medical profession not longer deserves respect or high esteem. In 1964, the modern version of the Hippocratic Oath was written. It eliminates many of the safeguards for the patient and adds in responsibilities that are God’s alone. Let’s take a look at the differences and explore some of the subsequent and yet to come ramifications.
Barbara, my wife, tells it this way: “One year ago today (11–25–2012, this was first published, 2013) we got back from Mass on Christ the King and you asked me to watch you. You leaned your sticks against the garage and took off. My instincts from years of having to catch you when you fall had me diving. But you kept going. Down the road. Past the bridge. Out of sight. Tears streamed down my cheeks as I watched you go.”
TBI anger is unlike any other kind of anger. It taps into our primal instinct to protect ourselves, like any wounded, cornered animal, with a burst of adrenaline. This is the source of the raw, primal strength, energy, focus, and coordination. Once it hits, it can not be stopped, only redirected in a safe direction.
Learning. Och! How personal that process is. How wondrous we all are, each absorbing and processing information so differently. Yet another example of every brain is different, and thus every brain injury is different also. Here’s what I’ve learned about what I need to absorb, think, write, and draw.
Ketogenic simply means getting your primary energy by burning fat, as opposed to most people in the US today who get most of their energy by burning glucose. Science is showing us that when fat is our primary fuel we function much smoother and healthier — including multiple studies showing brain benefits of burning fat os our primary fuel. In essence we access God’s engineering by shifting to burning fat rather than glucose.
“Remember when you leave this earth, you can take with you nothing that you have received — only what you have given: A heart enriched by honest service, love, sacrifice and courage.” — Saint Francis of Assisi
The best cognitive therapy (activity that stimulates brain connections and healing) there is is reaching out sideways to help others. St. Francis’ prescription for eternal wealth is also a powerful prescription for brain health and recovery.
Brain injury bring about some amazing headaches. Some come with light shows and sounds of freight trains. They can leave us debilitated for days in ways we may never have thought possible.
Here is a description of the various headaches I have now with TBI and what I’ve found to be effective in treating them. I’d love to learn from your experience as well — comment away in the comments!
Blows to the head cause muscle and skeletal trauma in the neck, shoulders, and back because that’s where our rocks are anchored. Bash about the rocks, and their anchor point takes a lot of strain too.
“Life is pain, Highness. Anyone who tells you different is selling something.” – Wesley (aka the Great Pirate Roberts) in the film “The Princess Bride”
Life with brain injury is often compared to a “long hard road.” It is. It’s got extreme ups and downs plus all kinds of rocks and other challenges. The question is, what do we do about it?