Brain injury is the invisible injury and, while every brain injury is different, one very common symptom is the loss of the ability to filter out stimulation, so it hits our brains hard and full like an explosion. For me, very few things in nature overstimulate me (though I do not hang out around loud water falls often). A field of wild flowers in morning dew at 10,000 feet the summer? Amazing scents! The vanilla-rum scent of a water hole from several miles away alluring me in to the shaded niche in the scorching desert till it was a veritable symphony of scents as I ran through the surrounding horsetails with various subtle changes? Delicious.

No, it is the mechanized sounds and manufactured scents stimulations that impact my brain as weapons bento on destroying my capacity. And it works. But it does so, in part, by releasing adrenaline and friends.

Adrenaline is deceptive. At the rush of it we suddenly feel capable and able to handle the situation that triggered our fight or flight response. Do not be deceived! Get out, get away! To sanctuary!

This is, of course, the very purpose of adrenaline and friends. Fight or flight. Give us a short term boost of super power to handle the life-threatening situation at hand. But that boost is a debt against future capacity. Worth it so we can live rather than die, but when we are constantly accruing debt because of overstimulation, our functional capacity is diminished and may well be hard to recover.

In yesterday’s encounter with my doctor’s office (30 minutes, ending in a burst of TBI rage, aka adrenaline, out the office), the adrenaline gave me the capacity to overcome the deficits I’d incurred from the over stimulation (sound, scent, tactile). I was able to escape without having to be wheeled out. (Note, this gives the false impression to the ignorant observer, doctors often included, that I was making a bigger deal of the stimulation, and I really have a anger issue and need psychological help not brain injury help.). Education is essential!

Getting home at 9am-ish, I spent the rest of the day in my Hobbit Hole sanctuary, barely able to walk using the walls. Fortunately, I can often write in such a state, given a quiet enough environment, and my Hobbit Hole is newly fortified against more of the outside invasion of increased town noise, so I wrote about the experience as adrenaline coursed through me, giving me shakes, a racing pounding in my head, skull bones collapsing inward and exploding outward simultaneously, and a mind that is like a hamster on speed that can’t run fast enough on it’s little wheel.

I took my Adrenaline and friends protocol:

• 1000 mg Calcium Citrate
• 5000 iu Vit. D3
• 400 mg Magnesium Citrate
• 10,000 mcg V B12 Methylcobalamin, Sublingual
• 5 balls arnica montana 200CK
• 2 balls chamomile 12C
• Dark chocolate as desired (85% or greater)

Immediately after Bonk: Take 1 round of above 2 hours, 4–6 hours, 12 hours post Bonk: repeat.

Following day or two: take 4–6 rounds of arnica, chamomile, and B12 Methyl.

Return to aerobic, non-jarring exercise as soon as possible, even for brief periods. Aerobic = able to easily talk to someone next to you.

That protocol has cut the effects I feel from adrenaline dramatically. It still takes 2–4 days to recover from the small exposure I received yesterday. When we’ve made the mistake of continuing to car camp despite the fact that I was not doing well then was doing “magically” better (due to adrenaline), I’ve taken weeks or months to recover (generally 1–2 times the length of the trip).

At some point n the day or two after the adrenaline trigger has abated comes the adrenaline crash: I stop generating heat and can be cold no matter the temperature. I have no energy and no brain energy. I may sleep for much of the day or at least several hours (under heavy down comforters).

Then, in the days it takes to flush out adrenaline and friends, I always have a much shorter fuse to triggering my adrenaline again. So I have to lay extra low lest I dig myself into an adrenaline debt pit I need weeks or months to climb out of. That’s happened before. One big thing happens, then multiple little things kick me into the pit while I’m still recovering. The snowball effect, but with adrenaline rather than multiple concussions.

The silent price we pay for seeing doctors and being tested in environments that harm us is invisible, including to many of us because we are always paying it. To see the price, you have to escape out of overstimulation recover to whatever your actual capacity is, and then experience the sudden drop in capacity when again exposed to over stimulation. It is certainly invisible to the doctors.

I’ve found the best thing for adrenaline recovery is to use the above protocol, law low and quiet in my Hobbit Hole for several days, then emerge and begin doing aerobic activity in a quiet, natural setting.

Update

It’s taken three days to reach the point that my head is no longer imploding and exploding simultaneously. It’s now in the “cottony” vacuous feeling stage. Experience says it’s another 2–4 days to recover fully, presuming my heightened adrenaline trigger doesn’t get triggered in the meantime, in which case I fall back into a deeper pit to crawl out of. Seven days of lost capacity is a ridiculously high price to pay for spending 30 minutes in a doctor’s office (and not even getting to see him) but instead be berated and belittled by him. The. System. Is. Broken.

Update 2

Day four. Still feeling cottony and vacuous in the head and now unable to generate heat, so I am quite cold.

Update 3:

Day 13. Och! I got sucked into the quicksand pit of hair-trigger adrenaline rushes. It goes something like this. Had I been able to go two more days after day 4 without adrenaline, I would have recovered to the point that adrenaline would not be triggered by the smaller things. Unfortunately, I had to leave town and go winter camping on day 6, but a minor event in that triggered my adrenaline, causing me to come out early (fortunately, we’ve been blessed with a newly fortified sanctuary, and so the construction noise does not incapacity me as it would have otherwise). So, I am home now, and the whole family being stressed by the construction noise and debacle with my doctors has everyone on edge and little things keep happening before I recover, triggering my adrenaline rush anew and deepening the pit from which I must crawl. It is very challenging to break this cycle, and that is with understanding it.

Update 4

Day 20. I’ve managed to get out on a few aerobic activities, and they are helping flush the residual adrenaline and friends out of my system. Of course, as that happens, I get the chills and crashes all over again, along with sinus activity (stuffy/runny nose). I’ve managed to not trigger my adrenaline for about a week now, so am hopeful that a few more days will see me through.

Update 5

It’s is now Mach 26, 2014, and I am finally out of the adrenaline pit and I have a bit of brain cushion building up again, so I am roughly where I was when I when to the failed doctor visit 36 days ago. It took 36 days to completely recover from an attempted 30 minute doctor visit. I’ve heard narry a peep from the doctor I fired and am searching for a doctor who will see me. (found one, a great General Practioner)

What is your experience with adrenaline and friends?

#TBI #howto #caregiving

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Entering life as fully as possible is the best therapy possible for healing our brain. This website offers tips and approaches quite different from what you may have heard from your doctors. This is because the medical world focuses on acute care, demanding rapid results, and it does not understand long term healing and living with a chronic brain injury.

If you wish to love life and simultaneously maximize the healing of your brain this approach may help you as much as it has me.

God's Engineering

A powerful way to maximize healing of chronic healith challenges like TBI is to remove any and all clutter preventing our bodies from functioning at their best. Go created us wonderfully, and this includes amazing engineering and functionality – but what we eat, wear, how we move, and how we sit and sleep deeply impacts our body and brain functionality.

These articles may be helpful...

What we eat can heal our brain (or harm it).

Exercise helps heal the brain

Prayer helps smooth the way

Floor Living Aids Brain Function and Healing

Understanding Brain Injury

These articles will help caregivers, family, and friends better understand brain injury and what your loved one is going through (if you have the brain injury and wish family and friends understood you better, send them the links!).

Family and Friends’ Guide to Brain Injury

Spend a Day on Planet TBI

Brain Budgeting

TBI Anger and Over Stimulation of the Senses

Connect with Others

Sharing the journey with others who understand is critical. If you are on Facebook, search for TBI groups. There are some excellent ones (and some less than, but you'll weed them out quickly).

If you prefer email (I find it far less “noisy” and brain draining), I'd love for you to join one of the email support groups I moderate. These links will bring you there:

Brain Injury Alliance of Colorado (BIAC) Email Support Group: for both caregivers and survivors.

BIAC Caregiver Support Group: for caregivers only

Grieve Your Loss

We have lost a lot. Grieving our loss is a critical way of freeing us to move forward, whatever that looks like for us now.

As Fast As I Can, As Slow As I Must!

To enter life as fully as possible we need to learn balance. Push too hard and we need a lot of recovery time, go too slow and we languish, miss out on life and don't make new connections because we aren't pushing our boundaries.

Focus on What You Love and Can Do

In the accute phase of healing, doctors focus on what is hard for us to do. This often means a lot of recovery time. As we enter the chronic phase (to varying degrees, likely for the rest of our lives), we need to shift to focusing on what we love to do and on what we can do.

What are you passionate about? What do you love to do? Write? Draw? Run? Play? Sing? Dance? Whatever it is, what part of it can you do, right now, with the capacity you have? You never know what you'll discover and/or heal tomorrow because of what you do today.

The idea is simple. When we love something, we want to do it and find ways to do it. When we do things in a way we can, we discover new avenues to do more in ways we couldn't have if we frustratingly focused on what our incapacities are.

I've found I do more, spend less brain energy, recover faster, and celebrate the joy of life more by focusing on what I love and am passionate about.

Rather than bashing into a brick wall over and over trying to do what you can't (for now), do what you love instead and eventually you'll discover the wall crumbled.

Sanctuary

Create a sanctuary – a room where you can focus on what you love without distraction. This may mean soundproofing, simplifying clutter, changing out fluorescent lights to incandescent full spectrum ones, and more.

Set up your indoor activities so you can do them in your sanctuary.

When the world overwhelms you with barrages of sight, sound, smells, tastes, and touch, escape to your sanctuary to recover.

When your TBI anger flares, go to your sanctuary to avoid saying things you'll regret later, and start recovering. This post on TBI anger, and this one on adrenaline halflife may be helpful.

I have days where I can't get out of my “hobbit hole” at all. Other days, I'm in and out, spending five minutes with my wife and kids, and an hour or two recovering. Because my hobbit hole is so stimulation free, even while recovering I can create (write, draw, etc). As I write this, I'm actually a week in to recovering from an adrenaline crash.

Portable Sanctuary

When I do need to go out into the world, I don my armor. Ear plugs and noise canceling headphones are my main armor. Others find sunglasses (even glacier glasses, which block the sides) helpful.

This Crazy Approach Works!

Focusing on entering life as fully as possible while going “as fast as I can, as slow as I must” helps our brain heal. Through discovering and living this approach, I have been amazed and blessed by how effective it is. Despite my many challenges (I test 3rd percentile in short term memory, easy derailing of thought and focus), and constant neurological vertigo, I spend wonderful time with my wife and daughters, write, pray, engage in theology, and I even have learned how to (by going barefoot) run and bike mountain trails and back roads. True, I can't attend or serve at Mass or join my family when they go elsewhere (the overstimulation of the laundry scents, flashing, barrage of noise, and other over stimulation mean I have to shut down and escape after thirty seconds, and then need a week or so to recover), but the quality of life we experience as a family is dramatically higher because of this approach. I pray you find it does the same for you!

May God startle you with joy!

#caregiving #howto #advocacy #Godsengineering

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.

Why does Primal Rage Happen in TBIers?

Adrenaline on a hair trigger. Adrenaline (and friends, for as science is discovering there are a lot of other things our body releases with adrenaline) is a primal response we have to protect us from sabertooth tigers and other immediate physical threats. For most of us, those do not regularly exist in our world, but our biology interprets the onslaught of overwhelming input on our brain as an imminent threat. Our biological reaction kicks in, releasing adrenaline. But there is no immediate physical threat. So we often (and very wrongly) assume those around us must be the imminent threat. This is why some TBIers are verbally or even physically violent to those who love them. The truth is there is no threat. The “threat” is damaged neural connections inside our brain that make it so we can’t handle input from our own senses.

In essence, the lower my [brain budget], the less brain cushion I have and the more easily my adrenaline triggers.

How to Handle TBI Anger

First, it’s important to know that typical anger management techniques do not work. They fail to recognize that the anger happens because of damage to the brain.

Second, trying to reason with someone in a TBI rage only makes it worse. Why? Because in their focused “fight or flight” state, you are standing against them and are thus mistaken for the immediate threat. Not accurate, but still what happens.

There is, however, hope.

First: Make sure everyone is safe

If the TBI anger bursts get physically directed at people, get immediate help until the survivor learns to direct their rage in a safe direction. If you feel like you are in danger, you are. Getting safe may just be the motivation your TBIer needs to learn how to address their rage

Second: Create a Sanctuary

A sanctuary is a room set up to minimize the stimulation on the survivor. Mine has a sound dampening door, increased sound proofing between me and the rest of our home, and is where I do most of my writing and other creating.

Sanctuary is where I go to recover when TBI rage hits.

Third: Learn to Direct your Anger Safely

This is challenging, but as we’ll see it cooperates with our natural biology

Pay attention to what it feels like immediately before an anger burst. When you feel it coming on, drop everything you are doing and get to your sanctuary as safely and quickly as you can. Do not engage the people or animals around you or who happen to be in your way. If you must hit something, hit a wall or slam a door. Doing these things gives your adrenaline somewhere to go. when you get to your sanctuary, crash and recover.

Why this works: This is your fight or flight response you’re experiencing. It either wants to fight the immediate danger, or flee to safety. Your sanctuary is safety, so its natural to direct your rage toward safety and away for harming others. Trying to stop the rage (you, or those around you) only makes it worse.

This is something you can learn to do fairly quickly. It is also the stepping stone toward learning the next step, which can take years to learn. In the meantime, whenever your rage hits, directing it’s purpose toward getting you to safety will keep you and those you love safe.

Forth: Learn to “Shut Down” rather than Rage

If the last step was hard, this one is even harder. The previous step at least had biology on it’s side

Once it starts, there is no stopping a TBI rage other then letting it run its course. I know. I tried for years. THe trick is to stop it BEFORE it starts.

We only get one shot at this with each anger burst. The window of opportunity to stop the rage is when I know it’s coming but before it arrives. Typically this is far less than a second.

Remember how step three above was a stepping stone to this step? Learning what it feels like immediately before the rage burst is key.

That feeling of impending rage is my “trigger” to shut down. Like a robot. whatever I’m doing, I simply slump to the floor and turn off. I do not move until help comes to help me to my sanctuary.

Doing this is a pure act of the will. Nothing in our biology tells us it’s good to shut down in the face of danger. But the benefits of doing so are numerous.

First I don’t verbally or physically threaten anyone when I’m shut down. I’m a completely non-threatening lump on the floor.

I’ve taken years to reach the point I can feel it and choose to “shut down” rather than let the rage hit. This takes a lot of work and effort to learn what it feels like immediately before the rage, and choose to make that a trigger that always, without question, causes me to shut down. If I think about it, it fails. And sometimes the rage is too fast for me. But for the most part I am able to now shut down.

Why is “shutting down” better than a rage? First, rage doesn’t benefit anyone. Second, the rage never happens. The adreniline is never released. I don’t have any burst of energy to deal with, no “crash” after the adreniline wears off, and no 2–3 days or more of recovery from the rage itself (let alone whatever overstimulation caused it). My muscles do not constrict, lmiting blood flow to my brain, causing more things to overcome to recover.

Shutting down is the right thing to strive for. It’s also amazing hard. It took me years to reach the point that it is my natural response to impending rage. As soon as I feel my brain getting overwhelmed, I shut down. I do not think about it because if I do, it’s too late, and I’m back to fleeing to my sanctuary in a rage. Hard as it is, shutting down is well worth learning.

What is your experience with TBI rage? How have you handled it? What have your found works for you or your survivor?

#howto #caregiving

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I’ll use my brain injury as an example. For years, despite constant neurological vertigo (essentially feeling like gravity is constantly shifting in direction and strength), by accessing God’s engineering I am able to run and bike mountain trails, yet I have great difficulty being in crowds, among other environments. This has often led to the question: “How can you ride your bike but you can’t attend Mass without accomidation?” Here is how:

First, every person, whether they know it or not, gets a brain energy deposit for the day. They spend that brain energy throughout the day. For people with healthy brains, they get a deposit of say $10,000/day. A car ride costs $0.50, a conversation in a loud room costs $0.75, and so on. By the end of the day, they haven’t approached spending $500, let alone $10,000. They have no need to budget their brain energy and may not realize such a thing even exists.

Then a healthy-brained person hits a stressful time in life. Illness of themselves or a loved one. Job loss, move, family issues … whatever the stressor, suddenly the cost of everything goes up. That car ride, now costs $5. That conversation in a loud room, $15. The more a person is stressed, the higher the cost. Still, $10,000 is a lot of brain energy and even a stressed out person with a stressed out day doesn’t usually exceed that. But they feel it as they spend $9,000. They are more tired. Depleated. Need more sleep to recover.

People with brain injury not only have high stress constantly, so pay a lot for every activity they do, but they get a much smaller daily deposit. Instead of $10,000/day, they get only $500, or even $50. For a whole day.

The brain only heals when it is in the “black” — in budget brains heal, in debt brains do not.

A person with brain injury has to learn their individual “price sheet” — what their brain budget is, so they can usually stay within it in any given day. Over time, this price sheet can change — to their benifit through small mini-miracles of healing with time and entering life as fully as possible, or to their detriment if they take too much of a brain energy hit, have another concussion, or other harm. When it changes, for the better or the worse, the world can seem very confusing until the new price sheet is learned. It’s hard to stay in budget when you don’t see price tags. Grin.

It is very common for people with brain injury to be able to do almost anything they want (just as you can buy anything you want), but they have to consider the total cost to their brain budget. I can cook a meal, but doing so costs me a day and a half of brain energy. That doesn’t help my family at all. In fact, it harms my ability to function and heal, so it actually harms my family and myself if I cook meals. We’ve found other activities I can do to help. I love doing them. I do them when I can — and we’ve found ways I can do them in budget.

One thing I can do is pick up groceries. We call ahead, the store has everything ready and paid for, and I load it on my bike and/or trailer and ride it home five miles down the mountain pass.

Double your income! Exercise!

Here’s a little secret that if your loved one with brain injury doesn’t know, they will love to learn from you: regular exercise done in a way the brain budget can handle, can pay you extra brain energy every day you exercise. For example, I am able to ride my bike, and on those days I ride, I get an additional day’s pay because I ride. Say that’s $100. The ride I do needs to cost less than $100 most of the time for me to be able to do it. On a loud highway? Very high a cost. Too long and I’ve blown my budget. On a trail next to the highway? Far less cost, and I can do it. This actually helps heal my brain. Yes, I occationally have rides where “friendly fire” of a person honking softly as they pass startles me, triggers addrenaline and I have to head for home immediately. But the routes I ride usually have me well below budget.

Exercise is often a profit center for brain energy. If we can engage in exercise it triggers healing mechanisms in the brain and body that help us have more brain energy today and that helps us heal more for tomorrow. Many studies show this reality, though not any I’m aware of specific to brain injury (stress, other health, etc).

Most activities, however, are cost centers. They do not pay us brain energy, they cost us.

Brain Debt

If the brain takes a “hit” and pays more than it has in it’s brain energy account, it goes into brain energy debt. It can’t function well when in debt. It can’t heal. It has to pay back the debt before it can begin functioning more again. In fact, before a brain injured person learns to manage their brain budget it is common to live life constantly in debt. Brain debt also explains why a person can, from one month, day, or moment to the next not be able to do what they were doing before.

So, why can I ride my bike but not attend Mass without accomidations? The ultimate answer is God’s grace. God has given me this challenge and allowed me these capacities, however weird they look, for a reason. Yet, so often the “reward” I get for doing what I can, using the gifts God gives me is that I hear things from well meaning people like “I understand you feel you can’t attend Mass but can ride your bike.” Oh. No. If only it was how I felt! Then I could choose to go to Mass. Much as I hunger to go to Mass, I need accomidation to be able to. My personal brain budget pays me to ride a bike, but I pay dearly for echo-y spaces, music, smell of laundry detergent and perfume and soap and shampoo, traffic noise outside while focused on another activity, and so many other layers of sensory stimulation — without accomidation, attending Mass costs me months or years of brain energy at a minimum. With accomidation, I hope to get that down to a few days. But those are years, months, and days I have to pay back before I can function as fully as possible again. It has nothing to do with how I feel. It’s the very real price I pay in brain energy, and my budget simply can’t afford it without accommodation.

The bottom line is that if you encounter someone with brain injury doing things out in the world, celebrate that they are out, engaging in the best therapy possible for long term brain healing. You are actually seeing them in brain therapy — and it costs far less than in the hospital!

If you want to learn more about brain injury and accessing God’s engineering (simple, often free, things you can do to help heal your brain over time), this “Start Healing” post is a great place to continue. May God startle you with joy!

(A note on Mass: Mass is a gift and grace and healing for the soul — the source and summit of Christ in our life — it is healing to attend Mass. However, for a multitude of people with sensory input challenges, usually due to some from of neurological issue, the “price” of attending Mass is more than they can afford — all the more reason we, the Church, should strive to understand this invisible need of people on the fringe facing chronic challenges and seek to offer accomidations for a “quiet” Mass, so they may experience the healing grace of Eucharist at Mass.)

#advocacy #caregiving

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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!

#advocacy #caregiving

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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!”

Truth about brain injury

• Most brain injuries are invisible. There is no cast or visible scar. The injury is to the neurons inside the skull. It is real and because the brain effects everything about us injury to it can effect anything about us.
• Every brain injury is different.
• From the outside looking in you might wonder how a brain injured person can do x and y, but not z. Ask questions, but without making presumptions. Guaranteed that the brain injured person has been told they are making this all up, and may even wonder it themselves, perhaps years later. Please, be humble rather than ignorant and arrogant.
• Brain injury is weird. Different days can have different capacities because of varying brain energy. Things you think would be simple for you are not for the brain injured person, for reasons they may or may not understand but definitely experience.
• Brain budgeting. People with healthy brain get thousands of dollars a day in brain energy. Brain injured people, in contrast, get a dime a day in brain energy, and have to manage their day so they don’t go into debt and need days, weeks, or months to recover. Non brain injured people get so much brain energy a day they don’t have to budget it and, if they do (because stress in life makes everything cost more), it is a Park Avenue budget rather than a refugee camp budget. Thus, if a brain injured person avoids certain things it may not be they can’t do it, but that doing it costs them fifty cents and they’d rather spend five days of brain energy doing things that don’t cost them so much.
• Presume they are telling you the truth. Reference everything above. Can brain injury be faked or exaggerated? Possibly. But brain scans can’t be. The challenge of having days on days of not being able to venture outside despite loving to wouldn’t be. Presume they are telling you the truth and ask them how you can help them enter life as fully as possible.
• There is a lot we don’t know about brain injury, and the truth is each survivor and/or their caregiver is the best expert on their brain injury. Listen to them. Ask questions, especially if things don’t make sense to you. Presume they are doing their best to explain what is going on and that they are genuine and truthful in what they can and can’t do when (again, this can vary by day and even minute).

Here’s another post with a similar approach.

#advocacy #caregiving

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As of now, 2019, I am seventeen 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.

My brain injury is more akin to a football player sustaining multiple big and small concussions and head impacts over years than it is to someone in a single traumatic accident. My brain has sloshed back and forth inside my skull many times and this creates a lot of axonal diffusion injuries throughout my brain.

Acute v. chronic brain injury Healing

The medical world often says healing slows or even stops at six to eighteen months. They are right and they are wrong. They are right that acute trauma healing slows or stops, but they miss that there is a shift to long-term, chronic healing and the rules for long term healing are different. The medical world doesn’t focus on chronic healing so it really has no grasp of what is involved. As a general rule, when the other bodily injuries are healed (or would be if you had them, in the event you didn’t) as much as they will, the shift from acute brain healing to chronic brain healing as also occurred.

There are rules I’ve found very helpful for guiding me through the healing I’ve experienced so far. They are:

God is a God of wild abundance

Faith matters. We are never alone. We are always loved. And God so loves us he always gives us exactly what we need to do what he calls us to do. The challenge is to accept it. Even when it includes brain injury.

How can brain injury be a wild, abundant gift? That answer will be different for each of us, because we are different people with different brains, different brain injuries, and different challenges because of our brain injuries.

In my case, I’ve learned the gift of having to ask for help, of reaching sideways to help others, and receiving that help and seeing others be helped by what I could do. My faith has deepened in a way that is only possible with the challenge of suffering and accepting with abandon that I am not in control.

No matter your challenges or their severity, you are made in God’s image, and you contain a unique breath of God that only you can share with the world. You are a gift to those around you, and God will help you do and accomplish beautiful things that are beyond understanding — some you’ll know about, others will simply be invisible to you. That’s how God works.

Consider praying daily, reading sacred scripture, participating in your faith community however you are able. This will deepen your journey and be part of your ongoing healing.

Focus on what you can do

Acute cognitive therapy focuses on what we find difficult. This is good early on. But the way chronic healing works is long-term. What we do must be sustainable. Focusing on what I can do allows me to spend less brain energy doing what I do and thus allows me to enter life more fully and thus heal more.

It also helps my brain recover the things I can’t do over time, so occasionally test out the “hard” things to see if they are still hard. Because of my vertigo, I couldn’t ride a bicycle. But I discovered barefoot running and the gift of proprioception compensating so my body knew where I was in space though my brain had no idea. It took four to five years, but in stages I was able to use lighter walking sticks, then no walking sticks, then ride a bicycle, though I still have constant neurological vertigo as strong as ever.

Manage your brain injury budget

People with brain injury are on a brain budget. We get a daily allowance of a dime. Non-brain injured people get so much brain energy they rarely have to budget, and if they do it’s a Park Avenue or Hollywood budget rather than a ghetto budget.

With this dime a day we have to do everything we are going to do. Different activities or occurrences cost us more or less and only experience can teach us what costs us what. We have to be brave enough to try new things and push the envelope, yet cautious enough to recover as we need.

A “brain overload” happens when something costs you more brain energy than you have that day. Say I’ve already spent $0.06 of my dime, and as I put down my four-year-old she unexpectedly lifts her legs instead of standing. I slump to the floor, my brain having been suddenly charged $0.09, putting me in half-a-day debt. I need half a day without brain stimulation to recover (I do this in my sanctuary, described below).

Depending on your brain injury different things will cost you differently. For me, I am very sensitive to sensory overstimulation. Focusing on details or doing things in a new way is very pricy. Activities and methods that remove the “noise” and clutter of much of the modern way of doing things costs me less, and in the case of running and bicycling it is possible I return home doing better than I left, so I get $0.12 that day because I rode my bike and didn’t get overly wholloped by the constant bombardment of the world. Some rides end early, and some rides my wife has to pick me up. But for me, the chance that I get a 20% bonus in brain injury is well worth the possibility, especially as I’ve learned back routes that minimize stimulation.

Give yourself permission to go: “As fast as I can, as slow as I must!”

Type “A” personalities need permission to slow down, give themselves time to recover before bursting out into the world. This takes patience and humility to instead focus on recovering. Read, write, paint, create on the computer, if you must, watch TV or play video games, but I suggest they be last resorts as they aren’t the cognitive therapy creating is.

Conversely, type “B” personalities need permission to push the envelope, get out of their sanctuary and engage the world. It takes courage and persistence, especially where there is a world-wide conspiracy to be noisy and have flashing lights, and everyone puts stink in their laundry. But your brain needs to be pushed if you are going to enter life as fully as possible and heal over time by making those new connections through neuroplasticity.

Choose and control your environment to limit sensory overstimulation

Sensory overstimulation is behind many of the symptoms the medical world sees and understands. Variable brain fatigue happens because of brain energy debt (and recovery) and it is often sensory overstimulation that puts us into debt. Learn to choose and control your environment to limit sensory overstimulation and you’ve gone a long way to maximizing your capacity to enter life as fully as possible, day in and day out rather than one over-loaded day followed by a month or two of recovery.

We accomplish far more by allowing ourselves to focus on what we do well in an environment that we do it at the least cost, in the way that is easiest for us and stopping when our brain begins to get tired.

For you whole home, are you effected by cleaning and laundry and dryer sheets, soap, shampoo scents? Get rid of them and use simple chemical free and fragrance free alternatives (scent free is just more chemicals added on top of everything else to cover up the scents, and it is actually worse).

Simplify clothing, both so you don’t need to spend brain energy figuring out what to wear but also so your clothing doesn’t constantly move over your skin, which can unwittingly sap a lot of brain energy if you are sensitive to touch.

Sanctuary

Create a sanctuary in your home that minimizes your exposure to any stimulation that costs you. Mine has sound proofing, a rock wall between me and my family, blinds to keep out flickering sunlight but let in indirect light, silent heat for winter.

Mobile Sanctuary

I use Mighty Plug ear plugs. They are inexpensive and for me the most effective as they form to my ear (I’ve tried the pricy custom silicon ones and them clicked in my ear when I moved). I have them on my bike for loud areas and stop to put them in if needed crossing a busy intersection or near construction. I also wear

Exercise heals

I’ve found that both long and slow aerobic exercise, breathing through my nose to ensure I don’t over do it and am at a “conversational pace” as well as a few times a week full on all out efforts help my body feel and function better and over time my brain has fewer hard days and down swings.

Access God’s engineering

God made our bodies to move and function in specific ways and modern living often gets in the way of this. This modern “noise” weakens us, making us believe we need support to function when we simply need to get rid of the crutches. Shoes, nearly all of which have a raised heel, cushioning, poor shape, and arch support, are an excellent example that is easy to understand. Our feet become weak because of these supports and cushions, then they hurt, and we think we need more support and cushioning and they become even weaker. However, take off the shoes, take things slowly to give feet time to strengthen and adjust, and hey presto, most people’s feet become strong and are capable of far more than they realized and at far greater body and brain effecience than before. This “leakage” of body and brain energy adds up. Other things that weaken us: chairs, beds, motors replacing what we could do on our own energy, and much more.

Nutrition Matters

Food is amazing medicine or horrible poison. Research high fat diets, including paleo. At a minimum, eliminate processed foods and notice how much better you feel. I am on the ketogenic version of the Perfect Health Diet.

Find Gift in the Challenges of Moving Forward

Every brain injury is different. The brain controls or influences every physical aspect about us, so any aspect of our being that is physical can be effected by brain injury.

Common deficits to people with brain injury are variable brain fatigue, cognitive issues, sensory overstimulation, among others. Even among these, there are nearly infinite “flavors.”

My “flavor” is unique even among the unique. I have been blessed with higher functions despite scans revealing these parts of my brain effectively being like the legs of a paraplegic.

Some of how my brain injury works I have an understanding of and some of it I do not. The simplest way to explain the concept involved rather than dive into the weeds is this:

I can do almost anything. Thus, to someone like you looking at my outward activities I appear “normal” yet say there is a lot I “can’t” do. “Choose not to do” is more accurate, for everything I do comes at a price. The question is what price do I pay for doing it? I don’t get to set the price I pay in brain energy. I have to try and navigate the world as best I can with the dime of brain energy I get per day. Non-brain injured people generally get so much per day they don’t have to budget. So I choose to do what allows me to do the most possible with the capacity I have.

My approach to long term brain injury healing is this: Life is therapy. I strive to enter life as fully as possible, focusing most on what I CAN do — that has lead to healing and increased capacity so I can do things now that I couldn’t before.

It is a razor thin line. I still have not recovered from being “stuck” at the altar at Mass when the priest at OLW failed to understand and heed my need for no music. I used to be able to attend Mass, but I can’t now. Why? Because my brain has no filter against stimulation. This has slowly been improving over the past seven years, in part because I push my capacity by being stupid enough to venture into the world on a bike (which is also vestibular and cognitive therapy in other ways).

Most rides I return home better than I left (more brain energy). Some rides something happens, and I get “charged” $0.50 in brain energy. That takes a while to pay back. But the charge for some things is coming down — and I am recovering from things sooner than I did even just a year ago.

There are details I could delve into about why I ask for the accommodations I ask for. Do we really need to do that? If you think I am lying, then you are accusing me of putting my family through a living hell for years. Have I been pulling the wool over their eyes, Bishop Sheridan’s, my formation teams, your predecessors, and our faith community for years? There is another possibility: God is a God of wild abundance — who gives gifts oddly wrapped, with amazing blessings wrapped in suffering and challenge. Our God is a God who gives me the grace to do things I shouldn’t be able to do. Yet I must be a wise steward in how I manage my brain energy in order to do them. Is your God big enough to allow that possibility?

To specifically address your question about what I do for my ministry, websites, etc., every app I use is far simpler and more intuitive than anything by Microsoft. Without that I would not be able to do what I do.

The reality is a blind man can walk through a dark room he’s never been in before without injury, while a seeing man is likely to harm himself. An ignorant seeing man might accuse the blind man of being able to not only see, but see in the dark. In a sense, that is true, but the blind man “sees” through the stick in his hand, accommodation to help him navigate the world in a way to looks odd to the ignorant. Can you please trust me to know what my capacity is? Can you trust me to only ask for accommodations that I need so that I can focus my limited brain energy on what I can do most efficiently?

#caregiving #Godsengineering #howto

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