About Brain Injury
The best way to recover from brain injury is to enter life as fully as possible, going “as fast as we can, as slow as we must. These shifts in how we live help us access God’s engineering, which is the mechanism that helps us heal and function as much as possible, no matter what our capacity is. They are radical only in the sense that you won’t hear these ideas from most doctors or society in general. They are all based on the simple, profound idea that when we restore our bodies to the way they were meant to function God’s engineering helps us heal as much as possible, including our brain.
We are what we eat
Let’s start with diet. Perhaps the simplest way to describe the diet that has benefited me and my brain (much more stable brain energy and far fewer rage bursts, among other improvements) so significantly is I eat no processed foods, either in what I eat or what the animals I eat ate. None. The eliminates veggie oils, sugar, grains.
What do I eat? By calories, roughly 70-80% grass fed or wild caught fat, with the balance coming from grass fed or wild caught protein and safe carbs (potatoes, yams, white rice, veggies and some fruit).
In general, I eat once a day. When we fast for 16 hours or more in a given day, our body shifts into a ketogenic state, a fat burning state. Being in this regularly, daily if possible, gives our brains ketons for fuel, a fuel that is much better for the brain than glucose (sugar) for all but a small portion of our brain (which gets the glucose it needs from the body’s natural processes). So, if you can eat all your meal within an 8 hour window, then you are fasting for the next 16. THis ketogenic diet consisting of zero grain or veggie oils or sugar helps the brain heal as much as possible. I’ve been on a version of this diet for the last 6 years, and for the last 2 1/2 years on this exact diet. My brain and entire body function much better because of it.
A great source for understanding this diet, the source that helped me get onto it is the Perfect Health Diet.
Lose the Shoes
More and more studies are revealing the strong connection between our feet and our brain. Modern shoes block this connection in multiple ways. They are cushioned, which prevents the nerves in our feet from experiencing the world. They nearly always have a raised heel, which messes with our posture and our gait. They are not foot shaped, but have a narrow, constricting shape that binds our feet and prevents them from functioning properly. They usually have support of some kind, which further prevents our feet from being strong and functioning as God engineered them to.
For the last 4 years I have gone either barefoot or in simple, flat sandals or moccasins. Despite having constant neurological vertigo, I am able to run mountain trails and ride a bicycle, both of which help me recover when I am able to get out. How? A process called proprioception, in which my feet (unencumbered by the constriction and false support of shoes) tell my body where I am in space, so my brain doesn’t have to try and figure it out.
Taking off your shoes helps stimulate new neural pathways in the brain on throughout your body. Everything functions smoother.
Live on the floor
Furniture needlessly puts our bodies in positions they were not designed to be in and needlessly supports us. Cushie chairs and sofas and beds prevent us from feeling when it’s time to shift position and automatically doing so. The result is atrophied muscles, and patterns of movement that are unhealthy.
Floor live. All the time. Sit on the floor. Eat on the floor. Sleep on the floor. Work on the floor. It’s great! You always have a place to sit, because there is always floor. You will discover your body is both stronger and more limber and agile all the time.
What’s the brain benifit? Far, far less noise from the body’s disfunction. The less our brains have to overcome to interact with our own thoughts and the world, the more our limited brain energy can be spent on what we are doing, on healing, on living. We are much more free to enter life as fully as possible.
Most of us over breathe. At rest we should be breathing about 6 shallow breaths per minute. Breathing more than we need to ironically make our blood oxygen full by expiring out the carbon dioxide. The trouble is, we need CO2 for our cells to access the oxygen. CO2 is part of how the gaseous exchange happens at a cellular level. So when we over breathe, our blood is oxygen rich but our body (including our brain) has no access to it.
When I learned the Buteyko Method for breathing, I stopped having allergies and increased brain energy. My capacity to handle situations that overstimulated my brain increased. Why? Because my brain and entire body now had access to the oxygen I’d breathed in. The individual sessions are expensive. I learned simply by getting and reading their PDF book.
Animals do it. They find a nice quiet place to recover, rest, and in our case as humans, create. Our recovering brains need sanctuary to heal. Yes, we need to engage the world and life as fully as possible. That’s made significantly more possible when we have a place that is distraction free, noise free, and allows us to rest, recover, or create as we need to.
Set aside a room in your home. Insulate it from noise and distractions. Give yourself space to lie down (on the floor of course). Create a desk with a kneeler to work on the computer, write, draw, read, etc.
This space is were you go when you feel your brain getting tired or when the world is bombarding you. It’s where you go to create.
Accessing God’s Engineering
There are countless other ways we can access God’s engineering and maximize our brains capacity to heal and our capacity to enter life as fully as possible. What ways have you found effective?
From the Denver Post’s blog on the Denver Broncos:
On first and goal from the 2, Broncos halfback Rob Lytle, the rookie from Michigan, went off the left side, was hit by Jack Tatum, lost the ball, and Oakland’s Mike McCoy — of course, the defensive tackle from Notre Dame, not the younger man of the same name who now is the Broncos offensive coordinator — recovered and took off the other way with the ball.
But hold on…
Linesman Ed Marion ruled that Lytle’s forward motion was stopped and the whistle had blown before he fumbled. Replays, though, seemed to show he fumbled the second he was hit, before he was knocked back.
There’s a story here, and it didn’t come out after the game.
First of all, when I asked him to go through the “fumble,” Lytle asked, “What fumble?”
We both laughed, and then he explained.
“Honest to God, I don’t even remember the play,” he said. “I told you what happened to me the week before. [He was nailed in the Pittsbugh game.] So I must have had a bad concussion. I had headaches and stuff, but those were the days that you didn’t … well, it was a different era. You didn’t think anything of it. I didn’t play after that in the Pittsburgh game. They must have known enough to do that. I was out.
“But the following week, we’re down on the goal line again and we run pretty much the same play again I scored on [against Pittsburgh]. I went over the top and Tatum hit me. I can’t tell you other than what I see on film, because I was out. You get one hit, and another good hit to knock you out is that much easier, you know. I was out.
“The only thing I know that happened is that when you’re out, you go loose. The ball just stayed on my stomach. If they have instant replay, it’s their ball. But in that day there’s no way those referees could have seen that. I ended up landing on it but I was out cold. I wasn’t grabbing at it. As soon as I was hit, it probably squirted out a little bit and they were able to recover.”
As someone who has had numerous neurologists deny the fact that having one concussion increases the likelihood of having a second, which increases the likelihood of a third, and so on, AND deny that a small impact can appear to cause greater damage after a concussion, you are idiots. So many of us have paid for your stupidity with loss of brain function. If you do not know better now, in 2013, you are malpracticing. Learn your craft better. For our sake.
One of the aims of running the Colorado Trail is to raise awareness for brain injury and how it effects those of us with bludgeoned brains. I got the question “How does the sound of a rifle make it so you can’t walk?” Excellent question! Brain injury is such a mystery and is mostly invisible that unless we ask questions and happily give answers, people will continue to not understand that what we live with and experience is real and happens because of physical damage to our brains, even though it may not make any sense to them.
In short, the filters everyone has that allow you to not get overwhelmed by the myriad of things always happening around you no longer work for many with brain injury. So flashing lights, scents, loud or sudden noises all go directly into the brain and hit it like a spear or go off inside it like a bomb.
Read here for a few ideas on how to “blindfold” yourself to experience the world like a brain bludgeoned person for a day.
The rifle was shot about a hundred yards away. I lost much of my ability to cut through my vertigo, making walking a slow going challenge, and it only got worse from there.
To a healthy brain this looks like a gentle kiddy ride. To a brain injured brain its a massive barrage of motion blur, flashing lights, sound axes to the head, and much, much more. Want your ticket to ride?
For those who want or need to understand what it is like (sort of) to be blind or deaf, that is relatively easy to accomplish. Block those senses. It doesn’t give an appreciation for what it is like to live without sight or sound day in and day out, but you get an excellent taste.
Understanding what someone with brain injury experiences is a big challenge. Brain injury puts us on a different planet, where sound, light, smells, gravity, thought and more are all amplified, thicker, stickier, harder, and otherwise completely different than you experience on Earth. Trouble is, we look like we live on the same planet you do, so what we experience is very hard to understand.
The following list is not as close a duplication of what daily life on planet Traumatic Brain Injury is like; however, it does come far closer than not experiencing anything. Here’s your ticket to Planet TBI:
- Do not sleep at all the night before you begin this. Being sleep deprived mimics some of the stresses we live with all the time.
- Wear at least one sound magnifying earbud (like hunters use), turning them to greatest amplification. Keep this in and on for all interactions. Many with brain injury experience intense sensory overload as our brains can not filter out sensory input. Things you normally ignore without realizing they are there are loud and disruptive, visually distracting, headache inducing smells, and more.
- Wear on-ear headphones and iPod playing a type of music you find grating and stress inducing playing at a low lever (actually a medium level when amplified). Keep these in and on for all interactions. The constant barrage of stimulation we can’t filter out grates on us, much like always listening to music you hate. Also the stress of overstimulation creates difficulty not getting angry when seemingly small things happen (but to us, on our planet, they are huge weapons of attack).
- Wear a magnifying lens over one eye (or a pair of high powered reading glasses with one lens removed). Every 5 minutes (see timer below), switch which eye the prism is over (you may need two pair for this). This helps mimic visual overstimulation very common for us.
- Set an alarm to go off (loudly) every 5 minutes. When it does, stop whatever you are doing. Stand up. Turn around 20 times one direction, then 20 times the other direction while saying the alphabet backwards. We struggle to focus on anything we do, doing well to half task. This attempts to mimic these distractions, and show how hard it is to pick up where you left off. Also, many people with brain injury have some form of vertigo, so you get to taste that too.
- If you’re warm, wear extra clothes. If you’re cold, wear too few clothes. Our bodies often experience difficulty regulating temperature, needing to huddle under a down blanket in the middle of a summer day, or wear shorts on a winter evening.
- We could easily add more, to simulate a “hard” brain day (wear ankle and wrist weights, scratchy wool underwear, and more), but this will give you a taste, and we want your understanding, not your anger!
- Live life as normally as you can until your normal bedtime, attempting to do all your normal activities.
- End with a prayer for all with brain injury, that we be given healing and that we and our caregivers receive the graces of strength, courage, perseverance, and patience and love.
Everyone’s brain injury symptoms are different. This experience is meant to give a taste of what living with multiple deficits so common with brain injury is like. If you have a specific person in mind, you may want to ask them what they experience specifically, adding to this list to mimic some of what they live with.
Not sure you can handle a full day on Planet TBI? It’s the wimpy kiddy ride poser experience, but do the above for an hour and you’ll still get an appreciation for what someone with brain injury lives with all the time. Just make your hour at least in the afternoon after being up all night the night before, to get a better idea.
Do you have what it takes to taste what life on Planet TBI is like? There’s two ways to find out. I recommend the one that provides a two-way ticket. Grin.
Know someone you wish understood your brain injury better? Send them a link to this post, with the challenge to visit Planet TBI for a day!
Were you brave enough to ride? Share you experience in the comments below!
Yesterday my youngest daughter, heading for 2 years old, short circuited me by flinging a basket in front of my face. Usually, I would “shut down” rather than enter adrenaline rush which leads to a deeper crash and longer recovery. But this time, I was holding her while standing, leading against a wall. I couldn’t just “shut down” because doing so would mean dropping her. My adrenaline was triggered because I did not shut down fast enough (it’s a very small window), and in sluggish, brain addled slow motion I thought things through.
“You’ve got to gently set her down and not fall on her. Good, now you’ve got to somehow get to the floor without falling on her or hurting yourself. Good. Now you’re crumpled on the floor, the baby is safe and it’s safe to shut down.”
I have no idea how long I lay there, unable to respond. I could not move anything. My brain was so overloaded it took a long while just to be able to open my eyes. I couldn’t move them in any coordinated fashion. I was locked in a body I had no control over. This had never happened before. This was new.
I continued to lie there. My family figured I had shut down as usual and let me lay there quietly. But it went on longer than usual.
Eventually I was able to move large muscle groups. Not fingers yet nor speech, but I could lift my hand at the wrist and allow it to drop to the hard wood floor with a knock. That got their attention.
Then we had to play 20 questions after learning the code for 1 knock is “Yes,” two knocks is “No.” I eventually wormed and was dragged back to my study, the door was closed and I received sublingual B-12 Methyl, 10,000 mg. By the time midnight rolled around I was able to talk minimally again and “wall walk” to the bathroom and to bed. I took extra Resveratrol and grape extract, which helped open my head and reduce my blood pressure, which had gone up into the lower side of high making it so I could not lie down. Then I took additional Magnesium Citrate and Calcium with some Vitamin D-3 (which I need to write about but have not yet).
This barrage of extra nutrients, vitamins, and minerals helped me recover to a point of functioning that has never been possible before I began taking them both regularly and supplemental when I “crash.”
In someone like me with long term brain injury, the chemicals that get released into the brain at such times of overload have a damaging cascade effect. These supplements help my body flush those hormones and chemicals out before they settle into place (that’s my theory, anyway).
It’s similar to a technique shown to stop the brain chemical cascade in the first hours after someone has a brain injury.
So, here I am, writing this down while I still remember it (tomorrow I won’t, without reading this). My fingers are working again. I can talk. Last time I had a crash somewhat similar to this, it took me a few days just to reach this point, then two months to recover most of my previous capacity (I am still more sensitive to some things than I was).
Because of the barefoot running, I am able to hold my daughter while standing at a wall, something I would not have done until recently. This has gone fine, until I short circuited while holding her — which revealed a flaw in my plan. I need to be doing well enough to set her safely down, and I can’t when I shut down.
People who see my wife after a long time ask how I’m doing. She says we’ve had many baby step miracles and life is much easier. But they are baffled as to how I can have so many improvements without being able to do more (from their perspective). “Pray you never lose so much capacity that you get to find out,” she tells them with a smile. That tends to leave them scratching their heads but silent.
My next step? Recover enough I can get outside for a run, no matter how short. That always accelerates my recovery.
May God startle you with joy!
Dixie Coskie explores her journey as the mother of a young man with TBI, 10 years after his brain injury. There is gift in sharing the journey — thank you, Dixie, for so poignantly and beautifully sharing your journey and Paul’s.
May God startle you with joy!
Life with brain injury has a way of showing just how little control any of us have. Last night, for example, I went to bed with plans for what I was going to do today. I woke up to realize my brain had other plans: for it, today is a recovery day.
I’m not sure what I’m recovering from. I have guesses, as I am currently testing out a new level of vitamin D and magnesium. They help flush and cleanse the brain, and are beneficial in preventing Alzheimer’s I’ll post more on that later. But the way I feel, feels similar to when I am recovering from an adrenaline rush and my body is flushing out all the fight or flight chemicals and hormones that washed through my brain. Perhaps the new vitamins are doing their thing, enhanced by my series of 9-10 miles days running.
So, I’m sitting here in my hobbit hole, struggling to stay warm enough in a house set at 68˚F, wrapped under layers of blankets, drinking hot tea and eating warm porridge. The teutonic plates of my skull of imploding in some places and exploding in others. Thoughts move through various layers of thick pea soup and January molasses. THis has taken me several hours to write, including correcting for dyslexic typing. to gvine you anidea of w hat myt ying looks like wihtou editng, this sentancei s typde withtou corrcteion.
Based on some of the odd looks I get from neighbors who see me out running, they do not understand how I can run for mile upon mile, and yet not be able to do the things my wife asks for help with occasionally. There is so much that is so hard to understand about brain injury, how do I explain it to those who only see me when, by definition, I am at my best, doing what I can do, and what is the most therapeutic thing I could be doing (running) to heal my brain.
I’ve no idea if this is coherent enough to make much sense, but that in itself helps paint a snapshot of what life with brain injury is like.
The challenge, as ever, is to focus on the gift rather than the pain. It is a beautiful day outside my window and my family takes wondrous care of my pathetic brain bludgeoned carcass on days like this! They are an amazing gift.
May God startle you with joy.
In the support groups I moderate, we often compare life with brain injury to running a marathon (or, as I prefer to , and ultramarathon). Here is a beautiful example of the triamph we each achieve when we make it through a day with brain injury entering life as fully as possible. Thanks to Zero Drop blog for the heads up, and in tribute to the film maker, Bud Greenspan, 84, who died Christmas Day.
I have friends I can’t talk with on the phone. They simply do not understand what my needs are (quiet background). And if I do talk with them, I invariably hang up on them simply to keep from short circuiting. So they think me rude.
Reality is that brain injury is hard to understand. I live with it every day and I do not understand it. How hard is it for a loved one or friend?
First, I can do some things one moment and can’t the next. I can run mountains, but not easily talk or be around others. Lots of things do not seem to make sense, at least until someone understands about brain energy levels, how they affect capacity, and how my brain can’t process sensory input very well.
If someone really wants to learn, how can you help them?
Education is the first step. Encourage them to poke around this site, starting here. Invite them to poke around the net. Invite them to ask you or your caregiver any questions. I commonly tell people, “I know this doesn’t make sense and it causes a lot of questions to come up, like ‘Why can I run mountains, but can’t help more around the house?’ (it’s all about managing brain energy and spending it wisely and avoiding short circuiting). Ask me anything you’d like.
Be a Temp Caregiver
Spending time with you, as your temporary caregiver, giving your regular caregiver a break, teaches them a lot. One friend said to me after doing this: “I know you explain things to me, but I really had no idea. Now I understand better what you live with every day.” Being a temporary caregiver not only teaches them about your brain injury, it also gives your caregiver a much needed break!
Ask Questions, Don’t Judge or Assume
Some folks take things personally. If I can’t be out with them when they visit (because I pay a high price in brain energy, and risk short circuiting for a myriad of reasons), they seem to conclude I must not want to be around them. Yes, folks, my brain injury is all about you.
Others (or even the same ones), are completely baffled as to why I don’t (work, help out more, just get over it, etc…). They do not understand why I am making this up or at the very least making it worse than it actually is. Who knows what is going on here, but a general rule is that it says far more about them than about you if that’s what is going on.
Many people are afraid. If it happened to you and is so hard, it could happen to them. They don’t want to face their own demise. Better to blame you and avoid having to handle something tough.
Focus Your Efforts
You will have people you would like to keep relationship with, but who make choices that you and your brain injury can’t overcome. Their loss.
You need to focus your very limited brain energy on what you can do. Those who are interested in learning can be a powerful support network that helps bring out the joy in the long hard road with brain injury.
How do you help family and friends understand your brain injury?