Yeah, I have that too... Understanding Layers of Poverty

One of the common things I hear when I explain to folks that I can't do _____ because of my brain injury is  "yeah, I have that too." Maybe, but clearly not.

Yes, every symptom possible for a brain injured person is also possible for others to experience as well. But here's the thing: brain injury isn't about just one thing not working right. Brain injury is about numerous things not working right. So, my friend may well not remember the grocery list his wife asked hi, to pick up on the way home, but he DOES have the capacity to not be overwhelmed by the feedback of the PA system in the grocery store, so he can call her and learn his list.

The brain controls nearly everything about us, so damage to the brain can damage nearly anything about us as well. Many experience personality shifts, rage for apparently no reason (it's actually because of feeling trapped like a wounded animal by the bombardment of overstimulation), variable fatigue, weight gain or loss, depression, various loss of cognitive function, an the list could go on and on...

What most people thankfully don't have experience with is layers of poverty. By poverty, I mean a lack of _______ that make it difficult for us to co-create with God. Layers of poverty grow exponentially. I've I've simply lost my job, but have no other layers of poverty, that's a real challenge, but it's one I'm likely to be able to overcome. However, if I lost my job because I'm addicted to gambling, I have two poverties (at least -- it will like grow), but to overcome them I have to over come each poverty and the complications that happen because there are two poverties rather than one.

Here's a chart:

Between every pair of poverties, is another layer of poverty that has to be overcome to most freely co-create with God.

When it comes to brain injury, every symptom or area of damage is a poverty. If I just had memory loss OR variable fatigue, life would be easier. However, because I have both, they make the other harder to overcome.

In my experience, this exponential effect is something often not understood or addressed by traditional therapy. It is part of what Mind Your Head Co-op is working to both educate people about and help provide a long term means of addressing.

Note: This concept and other related ones are more fully explored in my Model of Catholic Social Teaching.

What a Fantastic Retreat!

Alpineglow from the cabin's deck. 

A friend gave me the gift of a retreat and pilgrimage with him. We spent a week at another friend's remote cabin around the Spanish Peaks near LaVeta, CO (Thank you!). Depending on the temperature and recent snow fall, I either ran in my moccasins or in my moccasins with snowshoes (which my feet really rebelled against, as the straps chaffed them raw a few places).

It was a grand test of my ear plugs, as they got quite a workout, with the long drive, in a new home with various noises, and then more long drives and even a few restaurants. They and I did wonderfully well, and the continued gifts and slurry of baby-step improvements from the Blood Type Diet, Primal Running, and Buteyko Breathing are clearly evident. Still waiting for my memory and cognitive capacity to improve. Perhaps with time and more running!

I did lose a few days to "short circuiting" -- requiring time to recover because of cigarette smoke in our non-smoking room at one hotel (apparently there's no such thing as no smoking rooms in even a brand new Casino. Who could have guess that one? Sardonic grin).

Running is cognitive therapy...

Since the first glimmer that I might be able to run again (last spring, so coming up on one year ago), I've intuitively known that primal running would be an integral part of my ongoing recovery for my bludgeoned brain. I had no idea of the extent (By God's grace, I still don't and this is just the beginning!).

For the past week, I've been testing out going for a run when my brain is fatigued. I'm not at all sure what prompted this, because it feels incredibly counter intuitive to my lived experience. But running has become so efficient for me, that I return from a run with more brain energy than I left with. I have no idea what the limits of this are, but I'm in the process of testing them out.

Yesterday, I ate something on my "avoid" blood type diet (4-5 bites was all). I asked my wife if it was on my avoid list because it just either tasted funny to me or I was beginning to feel "off." I dropped rapidly last night (perhaps I should have immediately gone for a run?! I may get brave enough to test that extreme at some point) and was still recovering this morning. It was a "hard" brain day. So I decided to test it out. I could barely make it out the house, but once I was running, I was doing better. Inertia limits the ways you can fall, so my brain was less panicked about that (at least that's the part of the equation I've figured out so far). I ended up running 5k, though it felt like 30k. (brain injury has a way of making life seem that way -- the expenditure of an ultra-marithon to accomplish a walk around the block.). I even "hit the wall" 3/4s of a mile in, and felt my body shift to fat reserves by 2.5 miles. Arrived home and I'm more at a "medium" day in terms of brain fatigue. Amazing stuff! And I owe it all to primal running and primal (Buteyko) breathing!

Baby Step Miracles!

Bathed in gentle alpine glow after a night's snow, this view looks down Ute Pass.

As I connect with, learn, and live the basics of "God's engineering" I am deeply humbled by how great we are made and how much we try and do things our way and simply gum up the works.

What do I mean by "God's engineering?" I mean that God, through evolution, designed us to be the most beautiful and efficient and gifted creature on the planet: mind, body, and soul. Learning how to listen to our body and what it's trying to tell us can make everything in life better. Two cases in point:

Primal Running:
When I first began going barefoot (last spring), my feet tingled as the blood rushed in, grew new tissue, woke up dormant neural connections and created new ones. My feet began giving the rest of my body input about where I as compared with the ground. My brain no longer had to struggle to figure this out. My body (from my navel down) just knew. As this awareness and reflex grew, I realized I could run. A few more months and constant testing to see if I still needed the 4 pound walking sticks, and I've shifted to 8 oz. trekking poles (Thank you, Mountain Chalet!). I'm now running and moving faster and more efficiently than ever (including before my brain injury!). I'm hopeful that running will help grow new connections and help me recover even more over time (studies show mice grown thousands of new brain cells when they run compared with when they don't).

Primal Breathing:
Using the Buteyko breathing method, my breathing is now keeping the maximum amount of accessible oxygen in my blood, increasing my body's efficiency throughout. I've even been able to run more in the afternoon and once in the evening (Mornings are my best "brain energy" time). I feel better more, have more brain energy, and my sinuses are not a constant presence in every moment of life. I suspect this new efficiency deeply contributed to my being able to go to lighter sticks, as it provides a better, more consistent oxygen supply to my brain.

Baby step miracles by way of learning how to listen to my body and the way God created me to breathe and move and eat (Blood Type Diet). I wonder what other aspects of life I take for granted that I'm actually doing things counter to how God created me? How else can I go primal? The search continues... Grin.

Plus 43.6 (Yes, I've been negligent in reporting them!)
Total mileage: 519.5 miles

Inexplicable "Hard" Brain Days

Not entirely sure why, but my brain continues to have "hard" days -- a measure of brain fatigue. For those of you without TBI, think of brain fatigue as being a bit similar (for clearly different reasons) to spending a hungover morning with a crying baby while trying to cook, do finances, and work all at the same time. That's how my brain feels without any of those things.

So I embrace the gift of a day or ?? recovering from who knows what, write what I can, and know that the trails will be there when my brain has recovered. There is, somehow, gift in everything.

Blessings,
Patrick

Why I run barefoot/primal (minimalist)

Photo: Catamount waterfalls at the Hondo bridge.

A good friend asked me why I run in primal mocs and barefoot when I can (which isn't often, as I need it 60 degrees or warmer, live at 8,000 feet and run in the pre-dawn to early morning). Also, I sometimes get comments from people who see what I'm running in like "How can you RUN in THOSE?" Interestingly, I can only run because of them. Here's why:

I have constant neurological vertigo, which offers me two axes of motion simultaneously, all the time, without exception. As a result, my brain has no idea which way up is. The only way to compensate for it is to "fly by instrument" -- like a plane on a foggy night. So I use two heavy walking sticks which help tell my brain which way up is (yup, I run with them).

Going barefoot, or as close to it as I can get, helps in several ways:
Feet are "awake" (instead of asleep inside padded cells, er shoes), and thus provide a lot more usable information about where I have relative to the ground and gravity.
Most of these messages don't travel to my brain, muttling it's already limited capacity with an overload of   information to process. Instead, most of the feed back from my feet travels directly to the muscles of my feet, ankles, calves, thighs, hamstrings, glutes, back, and elsewhere triggering reflex responses to keep me upright. My brain doesn't have to know which way up is, because my feet and muscles are smarter than it when it comes to gravity.
Previously, when I could only walk, I lumbered along, intentionally falling from step to step, stick to stick. Yeah, I got good, and could hike for miles, but it exhausted me and my brain. Now, because reflexes mostly handle the positional awareness, my brain is ironically doing less work even though I'm running and accomplishing more.
Barefoot technique, in short is travel as tall and upright as possible while making as little sound as possible. Why? Because upright we're more efficient, an the less sound we make the more gently we are touching the ground and the more efficient each step is. There's a lot more to it (like short quick steps on the fore or mid-foot, no heel strikes, rapid cadence (180-230 steps/ min.). The end result is that running barefoot style energized my mind, body and soul, vs, walking the old way which took a toll on me. No longer are my back and shoulders all knotted up from lumbering about on my sticks. Yes, I still use them, but they are more to give my upper body gravity reference than the legs of Frankenstein's monster. Grin.



Plus 6.2 miles
Total milage: 271.8

Fifty First Viewings of Fifty First Dates

I just finished watching "Fifty First Dates," according to my wife for about the fiftieth first time. For many it's likely a cute movie, using the story device of memory loss for comedy. It is that. But it's also not so far off. There are several places in it, where Lucy is discovering the extent of her injury and of her life, that her raw emotion matches aspects of my own journey.

I don't have short term memory either. I don't remember experiencing things. For me it fades after a few days. I do have conceptual memory and a wide variety of other types of memory that I use to help compensate, including my computer and EverNote. while she discovers she has a daughter, I know I have three daughters (I can even sometimes remember their names!), but I've no idea how old they are. I don't know if I'll come around the corner and see them with play dough, a boyfriend, or a husband. It does add some adventure to the most mundane trip through the house! Grin.

Service Dog for Brain Bludgeoned...

I've mentioned him, but I don't think I've said much about my faithful and fearless companion other than his fondness for chasing bear, cougar, deer, and the occasional squirrel when naught more sporting presents itself. Sardonic grin.

Ardie, named after my favorite whisky, Ardbeg, is a Shetland Shepherd, weighs in at a spry 17 pounds when his fur is wet, and is kind enough to put up with me and my brain bludgeoned training that never ends (we don't do "official" training time, just training in real circumstances as they happen.).

Curious folk occasionally wonder, "what can such a wee lad do as a service dog?" Well, quite alot, actually. First, his job is to catch me if I fall. He can only do this once and fortunately hasn't been around to do it when I have fallen. Second, he makes car rides endurable. There is something about his weight and presence in my lap that helps with cutting through the vertigo, helping me last longer in more challenging circumstances (such as a car ride through winding canyon roads which are the only route to the big city round here). He also is a wonderful help when I am out in public, as people pay attention to him, rather than the odd guy with the big, great looking sticks. This allows me to ignore them and go about my business without getting overloaded with an interaction in a busy public area.

Aside from all those practical things, he is a grand companion who is daft enough to put up with me and my quirkiness and accompany me on all my adventures in the Colorado highlands.

 Plus 6.5 miles
Total Mileage: 209

On the Trail Again!

Ahhhhh! That was wondrous! It's been 8 days since I was last able to run. Why the break? My brain was recovering from something -- I suspect it was that I'd spent too much time in the hyperbaric chamber. It's like Goldie Locks and her porridge. Too much is a bod thing, too little doesn't feed the brain enough, so I need the baby bear's portion. Grin. Which for me right now appears to be less than an hour a week, more than an hour a month.

I started off slow, with just three miles. My muscles are saying "Huh?" and feeling good despite themselves. Yes, lads, that's what we do. We run.

Plus 3 miles
Total Milage: 202.5

How I Organize my External Brain (Computer)

Matthew's comment that the desktop of his brother, who has TBI, is as cluttered as his brain (see this post) seems to be (I know the feeling!), helped me realize just how much I use technology to do the organizing for me.

I dump it all into my documents folder. I make no attempt at organizing anything, other than to label it with tags. It takes very little time and far less thought than navigating a file tree.

I use Leap and Fresh to easily find new or changed files on my computer. They work so well, I don't even realize I'm using them! The screen shot shows Fresh in action, appearing as needed above my desk top, vanishing when done. Beautiful. Also, uniquely Mac, I believe.

What Is Brain Fatigue?

Last night I wasn't doing well. My brain was overloaded and I was hiding out in my "hobbit hole." But nature calls and I worked my way to the bathroom, all of one room over. On my way out gravity was winning handily despite my leaning on the walls, so to get through the doorway I grabbed the vertical trim on the door.

Apparently I've done this before and it had become loose. It pulled out from the door, turned sideways, and broke, sending me sprawling into the hallway. It took about 45 minutes for me to make it the 15 feet into bed -- and that was with some assistance. As a result, today is a very "hard" day, a measure of brain fatigue.

Brain fatigue looks different for every person. Here is what it is like for me. My body stops producing head. Wrap me in all the blankets you want, unless one of them is electric, I will not warm up. Any noise from anywhere and I can't think. I have my ear plugs in now, just to block the sound of the fan on the computer and the heater blower when the dragon in the crawlspace does it's job. When the diesel trucks of the construction workers staying a the town motel a football field away start their rumbling, as they already have, I can't think at all without the ear plugs.

On days like this, in the quieter hours of the morning, I try and write and get a few things done. Beyond that, it will be a day of simply occupying my brain with the cognitive therapy of trying to follow TV shows and movies, and the occasional emails of the brain injury support groups I moderate.

By definition, very few people see this side of brain injury. Most folks only see me when I'm doing well enough to be out and about. They see the 10 minute miles I can run but not the 10 minutes it takes to make the bathroom, 20 feet, one way. Sardonic grin.

No wonder brain injury is misunderstood. The injury is invisible, hidden behind a few layers of my rock-thick skull. The primary effect as the brain becomes more fatigued is that, from my perspective, the world simply gets harder. From other's perspectives, if they don't understand what is going on and why, it looks like I've suddenly stopped wanting to do _______. They have no idea that the sudden flashing glare off the car windshield did my brain in for the day. THings like that don't even register as having happened for most people -- because their brains are able to filter out all that noise.

That's why so many people with brain injury have to endure ignorant and often arrogant claims that they are faking it, pretending, or simply aren't motivated enough. I've had neurologists yell such things at me in front of my family. Thanks -- that will help (even if you were right and not ignoring my brain scans). Why is it neurologists are 10+ years behind in understanding brain injury?

Keep me in your prayers as I recover from the epic journey to the bathroom!

Thank God for Brain Backup!

Sometimes things happen that just make you scratch your head, say "Huh", and be amazed that God is God.

The night before last (the morning of Friday the 13th -- do, do, do-do!) I discovered that my dreams can "short circuit me, which has never happened before. I dreamt I was turning on a light and the outlet jolted me with a surge of electricity. My brain literally and figuratively short circuited, both in dreamland and when I woke. I didn't think much of it, and struggled to get up and experience what I could of the day.

When I got to my computer I discovered it could not boot, though it worked just fine the night before. It needed a complete reformatting and reinstall of the Mac OS. Thank God for seamless backup from Apple! They made it easy for me to restore my external brain in a matter of hours.

Nothing else in our house was fried, the computer is on a surge protector that wasn't tripped. I've no idea what happened and it may be a coincidence -- but I tend to go with Anonymous who said "Coincidence is God choosing to work anonymously."

Still having mostly hard days. Perhaps I need a break from the hyperbaric chamber (and shocking dreams. Sardonic grin). Will run when I can, but that's not today.

No Idea Why, Just Having Brain Fatigue Days

Part of the gift of living with brain injury is the realization (which I suspect is true for all of us) that I only have now. Any plans I may make are utterly contingent on my capacity to advance them, and when I can't they have to be flexible enough to go on 'pause.'

Every winter in the past I've had a "down swing" -- an extended period with fewer "good" days and more "hard" days. I hope this isn't the beginning of that -- I'm hoping that my following the blood type diet has leveled off some of those issues. Time will tell. In the mean time, I get to veg in the "hobbit hole" (my room/office we've sound proofed and where my computer is).

On the plus side, my youngest daughter of 6 weeks is now big enough to short-circuit me! I was trying to hum her to sleep, keeping my head on hers, but she was determined to stay a awake. To proove her point, she suddenly and strongly straightened her legs, unexpectedly moving my head and playing bonkers with my vertigo. Ahhhh -- they grow so fast! Grin.

As Fast as We Can, As Slow as We Must...

Today was one of those days. I head out, not sure how well I'll do. On days like this I either end up doing fine -- just had to get my brain and body working together, or it simply doesn't happen. The challenge is that over time, what it feels like to be "hard" (brain fatigue wise) and unable to go -- that changes. And not having memory - it can be tricky to figure out. The price for thinking I'm doing better than I am is getting stuck out on a trail with no way home except search and rescue (Thank God that hasn't happened in my 7 years of my own personal extreme sport! Grin.). THe motto "as fast as we can, as slow as we must" is essential -- as is the skill of listening to my body (including brain) and what they are telling me.

I made it a mile out before I realize this was not going to happen today. The good news is, I made it a mile back also! Grin.

The picture is of the sunrise looking up part of the trail. The wonderful, subtle hues of purple and alpine glow (which I was in when I took it) rarely come out -- so I digitally ramped up the saturation to try and somewhat come close to the look and feel. Go figure, it still falls short of the majesty of God's creation!

Plus 2
Total Milage: 191

Plus 8 and Ear Plugs that really help!

Today I ran along a road I've not been able to run before. Why? Because the traffic noise and wind chimes along the way were more than my poor brain could handle. However, I've found these ear plugs, which reduce all sounds evenly by 20 decibels, and cost less than $20 delivered.

Unlike my hearing aids programed to filter rather than amplify, these do not amplify wind noise and they do a better job filtering down wind chimes and traffic noise (which tend to be either high or low). It was a lovely 8 miles!

Plus 8 miles
Total: 185

Ahhhhh! Powder!

This morning's run was a luscious drifting and loping along through 8-10" of perfect powder!

One thing it reminded me of is that life with brain injury (indeed, any disability) is a bit like running ____ miles through the snow vs. running on a clear, dry day at your favorite temperature. And because brain injury is invisible, it's like I'm running through packed, sloshy snow but no one sees it because it looks to them like a clear, dry, warm day.

Plus 5 miles
Total milage: 163

Mind Your Head

Mind Your Head is a cooperative for brain injury survivors and caregivers to find support and therapy that promotes more fully entering life.

What does this look like? We're an innovative and living cooperative by brain injury families for brain injury families which uses physical locations, the internet, and home delivery to provide:

Ongoing, innovative, cost effective therapy (cognitive and otherwise)
Support of community
Business incubation and micro-loans for survivors and caregivers
Research via the above for better ways to accomplish therapy, incubation, and support
Funding for all the above

... all for TBI families by TBI families.

If you would like to be involved in creating some aspect of this, right now, please email Deacon Patrick! You can also help us create this vision by donating here (tax deductible).

Brain Injury and Controlling the Environment

My Lamp Post post brought in this comment:

Have you ever thought about wearing sunglasses and ear plugs when you know you will be in a situation that might cause you problems?

I don't know if sunglasses would help at all, but I'm sure ear plugs would. I like the silicone type for sleeping.

I love Anonymous' confidence in being sure ear plugs would work and deeply appreciate their good intentions. Thank you.

Yes. I tried sunglasses and ear plugs years ago. Both help but also cause other equal or greater problems. Instead, I always wear a hat to block out direct light both indoors and out. Earplugs don't work because when my ears are completely blocked I'm completely unable to cut through the vertigo. Nearest I can figure I use some sort of primitive eco location to help compensate for the vertigo. Whatever the reason, I need at least a small hole for direct sound transfer. I have custom hearing aids programed to block out, rather than amplify, sound, but they don't work on various tonal ranges and wind whistles loudly in them. I plan on trying a decibel blocking ear plug (rather than a solid one) in the near future, though I'm not sure if it will block my ear too much.  


All this points to one of the challenges of life with brain injury. It is common for people, including doctors, to dismiss survivors as faking or exaggerating our brain injuries simply because they don't understand how we can do _____, yet we can't do _______. (In my case, despite brain scans and neuropsych tests clearly showing the extent of my brain damage). I'm sure people in my town are baffled that I complain about wind chimes yet can run and hike for miles on the trails. For them it's the exact opposite -- they can't imagine running for miles and they don't even hear the wind chimes. Clearly something must be wrong! (It is. My brain is bludgeoned.). "You LOOK fine!" is one of the most frustrating things we brain injury survivors hear, because it echos of the implicit condemning, ignorant, arrogant judgement that we must be making a bigger deal of this than it really is. By definition, people only see me when I'm doing well enough to get out (unless the lamp posts of the world have gotten to me, in which case I'm slumped against a wall waiting for my Beloved to haul me off the battle field), so in their minds I'm always doing that well. If only.

A primary way of compensating for brain injuries' tendency to leave the survivor easily overwhelmed by sensory stimulation: control the environment. Because every brain injury is different this needs to happen differently. We have created my "hobbit hole" sanctuary room, where I go when I need less stimulation. It is fairly soundproof from the rest of the house, I can easily open or close the shades. It allows me to push my boundaries (necessary to create new neural pathways around the damage), while also have a place to recover when I've pushed as far as I can.

I am not yet good enough to be out in public places with lots of people. When I serve at Mass (about every 2-3 months), my parish wonderfully accommodates me by having a silent processional and recessional and minimal singing.

The farther we brain bludgeoned venture from a space that we can control, the riskier things get for us. The one exception for me is the wilderness. Nature has yet to short circuit me.

Street lamps flicker when they go out

Street lamps flicker when they go out. Sounds like the title to a murder thriller, doesn't it? In a way it is. This morning a street lamp went out as I was running under it. Not cleanly, it had to flicker as it went out. My brain instantly overloaded and I couldn't take another step. Had to call and wake the wife for a ride back home.

It's an amazing gift that I can run mile upon mile on the trails -- if only I can make it safely through our wee town. Sardonic grin.

Plus 1/2 mile.
Total miles: 137

Alpine Glow Embrace

Bathed in purple glow

Gliding through waking earth's soft

Hard embrace. Primal.

Plus 5.5 miles
Milage total: 124.5

It seems truely odd that I can run 15 miles yesterday, 4 today and have them seem like I'm just loping along and yet while on a walk through town with my wife and new wee one, wind chimes ended my day in a matter of seconds.

That's one of the hardest things for people with brain injury -- coming to understand just what we can and can not do, while always pushing the envelope. It's also one of the hardest things for family and friends to understand. "How can you do _____, yet you can't _______?" From the loving and understanding ones, it's simpy an effort to understand. From the rest, it's an accusation with judgement dripping off it. My prayer for such folks is that they never have to learn first hand what I'm talking about. Sardonic grin.