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

“Your brain injury isn’t real.” “You just do what you want.” “You use brain injury as an excuse.” “You’re not brain injured, you’re mentally ill.”

Horse Hocky n’ Monkey Muffins!

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 experiences with doctors, ministers, family, friends, and acquaintances, 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.

First, if you are a loved one, or doctor, or minister, or healthcare worker, or simply someone wanting to understand what doesn’t seem to make sense about brain injury — please, please, please, choose to be humble. Recognize that you do not know about brain injury no matter what you think you know. Realize that there is only one “expert” in any given person’s brain injury — them (the second being their caregiver). Realize it is virtuous to not understand rather than misunderstand.

If someone sent you this link it may be because they thought you should see that you aren’t alone in encountering prejudice from people who do not understand brain injury but believe they do. Or, it could be they are attempting to tell you that you are prejudice about brain injury in a way you do not realize and are asking, begging, you to choose humility instead.

Millions of people every year are effected by brain injury. Of those, some small percentage are not able to return to normal activities after 1-2 years. Of those unable to return to normal activities, some small percentage are “high functioning” in whatever way is unique to them. These are often the people that make no sense to many folks who encounter them. The higher the functioning, the greater the apparent discord between what they can and can not do. These folks struggle and strive to engage with the world despite the obsticles their brain throws in the way. They often focus on what they can do, learn to manage their “brain budget” and do amazing things, even as they can’t do seemingly simple things. It looks weird. It doesn’t make sense. Get over it. You are not the expert you want to think you are. Please, please, please be humble.

If you choose to persist in saying things and making decisions based on your prejudice that people with brain injury don’t _____ or do ____, therefore this person must be exagerating, faking, or gaming the system … you become yet another (and very unnecessary and very harmful) barrier to them healing and functioning as fully as possible. You are telling them that they should be a good little brain injured person and not function to their full capacity. You are teaching them that because they enter the world as fully as possible and do what they can do, however weird it looks, you will always judge them as “faking it” “doing only what they want,” “using their brain injury as an excuse”. Would you say that to a blind person who can walk through a dark room with rearranged furniture without barking their shin? Or a paraplegic who skiis down a slope? Or a deaf man who writes symphonies? Be humble, and admit you do not understand brain injury. You’re in good company. No one understands brain injury. Get over yourself.

Sometimes the things people say that convery their prejudice are subtle. I’ve had people tell me (multiple people, occations, throughout the years) that they understand I feel I can’t do ___, while I feel I can ___. This is subtle, but just as ignorant and arrogant as “you’re faking it!” What I can and can’t do has nothing to do with how I feel, or what I decide, and everything to do with the price I pay for various activities in the world because of my brain injury. I can’t negotiate with my brain injury, or decide to push harder — any more than a person making minimum wage can decide to purchase a Ferrari and a mansion today. They may decide they want a Ferrari and mansion and work to be able to do that one day — and in effect that is what I and every other brain injured person is doing who do things that don’t make sense (to us or to others) — because that is what we have to do to manage our brain budget and thus our brain healing (a brain can only heal if it is not in debt). You see us pushing boundries in ways that make no sense (and we often know it but do it anyway) because we are investing in healing our brain. Support us rather than punish us. Or at least get out of the way.

How do you proceed, be you family, friend, minister, doctor, or someone else, when someone’s brain injury doesn’t make sense? Presume they are the experts in their brain injury. Believe them when they tell you how things effect them, even if they don’t make sense. Read the post on brain budget. Be humble, and be willing to not understand. No one else does. Anything less than this and you are likely harming someone who sacrifices in ways you can’t see to do the simple and the extraordinary that they do. And remember, you are only seeing them when they are doing well enough to be out and about and be seen. You do not see the hours and days of lesser capacity, recovering to once again emerge.

If you’re the person with brain injury encountering the arrogant and ignorant, realize that you can’t change minds and hearts set on not being changed. I am a slow learner, but I’ve learned to find a way around or through or otherwise not interact with people who are arrogant and ignorant. The image I have for this is water off a duck’s back. For me, the altarnative is slamming into their brick wall of ignorance, which triggers my adrenaline, and I and my family are the ones who pay a price for that — a price the person will never see. The problem with ignorance and arrogance is to them, every interaction proves them right. Enlist an advocate who can help, if you have no choice but to work with the person. Pray. Forgive them. Move on, focusing on what you can create rather than the pain and harm they have caused.

I’ve been amazingly blessed that most family, friends, ministers, and some doctors have believed me, accepted what I tell them about my brain injury and how various situations effect it and why I can do what I can and can’t do what I can’t. Because of this amazing support I have been able to serve at Mass, minister to thousands with brain injury and their caregivers, write stories and novels with complex theology, and be an active father and husband — though all those activities look different than they would without brain injury. Thank you to all to support me. You are a blessing! May God startle you with joy!

#advocacy #howto

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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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