Barbara, my wife, tells it this way: “One year ago today we got back from Mass on Christ the King and you asked me to watch you. You leaned your sticks against the garage and took off. My instincts from years of having to catch you when you fall had me diving. But you kept going. Down the road. Past the bridge. Out of sight. Tears streamed down my cheeks as I watched you go.”
For years I was unable to hold my daughters’ hands while walking. That all changed with the miracle of stick-free walking and running last Feast of Christ our King.
While praying Liturgy of the Hours’ Morning Prayer, I felt called to go for a run without my sticks. Prudence dictated I wait for Barbara to return from Mass in case I misunderstood and was stuck without sticks crawling back home. I ended up running 5k. Without sticks.
Deacon Patrick hiking (prior to starting to go barefoot and minimalist) with “bludgers” weighing 4 pounds each to help compensate for constant neurological vertigo.
I have brain injury, and with it constant neurological vertigo. I still do. Being neurological, it will be with me the rest of my life or until a miraculous healing. In the meantime, God has given me, and us, the miracle of being able to walk and run without sticks. How? God’s engineering. A miracle of God’s engineering. By going barefoot (which I began doing two and a half years before), my body has slowly regained the capacity to use proprioception to know where I am in space. My brain still has no idea where I am, though I run technical mountain trails. But being barefoot, or in huarache sandals or leather moccasins, GOd has given me the gift of walking and running without sticks, starting one year ago today.
May God startle you with joy this Feast of Christ our King.
I do everything I can barefoot. Why? Aside from the fact that it feel s free and fantastic, I have constant vertigo due to neurological damage in my brain stem (just to quell ally he loving suggestions that I investigate my inner ear. I have.).
Over the past three years, my body has learned to use proprioception (the body’s own ability to be aware of itself and it’s positioning in the world) that had been snuffed out by wearing shoes.
Recently I discovered I can ride a bike barefoot, and sprung at the chance to once again be self- mobile over longer distances. I chose a specific maker of bicycle known for building hearty, stable, smooth, well balanced, do-anything bikes. When he heard what I was doing, including riding barefoot, he mentioned some wood peddles he has and offered to send them my way.
The wood peddles have some story to them, I don’t remember what (no short term memory, and I didn’t write it down), but they were made as a custom gift for someone who then didn’t need them. So I get theyr wondrous, quirky gift. They are a picture of odd, clunky beauty in which function trumps form but form comes out quite well in the end. But perhaps I’m biased. Grin.
So, to whomever made my hobbit peddles, thank you! They are wonderful! My hobbit feet thank you too! As for the hobbit sighting, I can only say it was near a heartily flowing spring of ENT water. Perhaps that explains the creature’s height?
Looks like a toy bike, aye? Those are 26” wheels. I’m just THAT big. Of all the test bikes I’ve tried, a too-small for me (as yet too big for my daughters) cromoly frame made in the US is the best ride for me, beating out a closer to the right size cromoly frame made in China. No idea what the difference is, but my brain can tell the difference.
Yup. I have a cracked nut and many would say it shows. I prefer to view it as what it really is: trusting God with abandon. God’s once again startled me with abundant joy. With my recent burst of healing I’ve discovered I can once again ride a bike. Two wheels, the kind you can take on rough roads and trails. I had a trike a few years back, but gave it to someone in greater need of it because I simply couldn’t ride it where I needed to go (rough roads and trails, as well as the paved sort.).
I’m not recommending it for everyone with vertigo, but my plan for healing my vertigo is to go barefoot, run steep mountain trails, and now bike many of them and perhaps head off across the country.
I ride barefoot, of course. It gives me a LOT of vestibular feedback, so while my head continues to be clueless (about spacial orientation among other things), my body happy know right where I am and behaves accordingly.
I have what I hope will be a wondrously stable, well handling ride coming (it arrives on Tuesday, at which point I’ll have cognitive therapy of mechanical assembly. We’ll see who wins.). I settled on a Rivendell frame of Grant Peterson fame. When things like “You ride in a Rivendell not on it” and “for the first time ever I could ride no handed, it’s that stable and well balanced” get said about a bike, it’s a good way to sell to a guy with vertigo. Plus, I’m a Tolkien formed theologian going back to late elementary school when I first discovered Middle Earth, so I’d have gotten it just to own something from shop named after a fictional place, because I really am that shallow. Grin.
It’s called the Hunqapillar and has the Mammoth as it’s badge. That’s comforting for vertigo too. You can read one of the reviews of it here.
Anyway, Grant’s Rivendell shop is well worth the visit. His approach to bicycling is wondrously refreshing, and helped me bust out of the remnants of my poser race-touring days of high school and college. Thoughts like it’s better to arrive a few minutes later having enjoyed the whole ride and been comfortable, than gett there a few minutes faster having been uncomfortable the entire time, reward a good perusal of the “Learn” section.
My testing was interesting, and deeply influenced what I’ve needed up ordering. I first road a cheep (by quality bike standards) folding bike we have. I was able to ride it a quarter mile and return feeling better than I had. Any further, and I would have returned worse. Then a wonderful ministry, 3T, gave me a bike sized closer to my needs. I was able to ride that one three miles and return better than I left. That was enough to set things in motion. I ended up riding the wee pony you see in the picture, and have been doing daily rides with my eldest daughter of 8 miles, returning better than I left. It has been fitted with albatross bars from Rivendell and is much easier to ride than the old standard mountain bike straight bars with end posts.
Thus, on Tuesday, “Shadowfax” arrives, a Hunqapillar breed mammoth from Rivendell. Why “Shadowfax?” First, because a bicycle like this simply must be named. Second, Tolkien writes of Shadowfax:
“You do not ride Shadowfax: he is willing to carry you – or not. If he is willing, that is enough. It is then his business to see that you remain on his back, unless you jump off into the air.”
“Shadowfax knows the way through every fen and hollow… like a deer
that runs sure-footed in the mountains.”
Those are good qualities in a steed. Especially when you ride with vertigo. Grin. I look forward to having a means of transport that will once again take me anywhere I desire to go. It’s been years.
Annabel cruising across the creek, well dressed for the 15˚F hike.
For the past nine years I have walked differently because of my constant neurological vertigo. Initially, walking was all I could do and I learned to do it with heavy boots with beefy ankle support and walking “bludgers” 4 pounds each — all of which served to help my brain discover where it was in space.
Then, two and a half years ago, I discovered barefooting and minimalist footwear (I now wear Luna sandals or go barefoot year round). Once my muscles and tendons had strengthened and my neglected proprioceptive system began to wake up I learned that by running and landing on my forefoot (not toes) I could run. But this meant that I could no longer to the natural walking gate that involves a natural heel roll, instead needing the forefoot landing to tell my body where I was in space. I still needed walking sticks, but much lighter ones, and I typically ran with them parallel to the ground, with their weight giving my brain input as to my spacial orientation.
This is my discovery log continued.
Today, I went for a two mile hike with our middle daughter. She determined the speed, from walking to running. Mostly walking. She was stunned. “Papa, I went however fast I wanted and you were just right with me!” Yes, I was.
I walked across a small log bridge over a creek. I played hallway soccer with my two-year old, who also now comes to me with her arms out knowing I can pick her up (I haven’t been able to pick up our lassies in that way for nine years). I have walking back again!
God is a God of abundance and wonder and wild grander! Alleluia! As we prepare to begin Advent this year (which begins tomorrow), I am delighted by the wonder of the infant Jesus filling our lives with blessing.
May God startle you with joy!
Bear with me on this post. It is going to be a longer one.
Yesterday, for the first time and second time since my brain injury set in, I ran 5k without holding anything in my hands. See “No Sticks! Alleluia!”
On my first run, the biggest challenge for me was telling my brain to quiet down, to stop trying to figure out where I am in space, but instead to trust my body and my feet to know where I am. The obvious question to this is why could I do this yesterday, when my regal past attempts all failed with me unable to cut through the vertigo raging? What’s changed?
First and foremost, the glory is God’s. He is healing me, step by step. Our God is an incarnate God, who works through the real and tangible mechanisms he created. The more we learn to access those, the more we access our natural God-given healing, demonstrate our faith that God is with us on the journey, and are open and prayer for additional miracles along the way, the more we will heal over time and in sudden larger steps. I am wondering just how large a step of healing this was.
Clearly my brain and body had managed to develop my proprioception capabilities deeper and broader than they had been before. However, as we shall see, this seems more than just another step of increased nerve networking and proprioceptive mechanisms body-wide. This appears to involve rewiring of the brain itself.
After my first run I intentionally tested out keeping my brain from trying to figure out where I am in space. I go barefoot in the house year-round, despite our cold wood floors in winter (we keep our house at 62˚F). Though last year my feet got cold and I wore slippers, this year, my feet do not get cold due to increased mitochondria and blood flow and adaptation of going barefoot all the time. Thus, walking about indoors, I have nothing dampening my proprioception. I “normally” walk about the house either touching walls all the time, or if I am doing very well, only when I change direction around a corner. The added spacial input through my hands meant I did not experience the vertigo in a way my brain could not handle.
Briefly, to describe the vertigo, is is neurological (not inner ear) and due to damage in my brain stem, which can be seen on my SPECT scans. It is constant, happens in two axes of motion (like being in a random speed and direction rotating “Da Vinci Man” gyroscope seat in a random speed and direction roller coaster. It is ever present. The only way I “compensate” is to distract my brain from paying attention to this unending, screaming, torrential motion hurricane raging inside the rickety boards of my head. Life can look somewhat normal when that happens.
Yesterday, walking around the house, I intentionally did not touch any walls when walking. Not even when turning a corner or changing direction. I fought hard to prevent my brain from jumping in to “protect” me from the vertigo by trying to figure out where I am in space, instead telling it to trust my body and feet.
This began a process I can feel continuing this morning. My brain is changing its neuroplasticity, it’s normative pattern of function. And I’m already seeing some remarkable results. While out with my family, without my noise canceling headphones on, I heard a lawn mower (really, late November in the Colorado mountains and you’re mowing? But that’s someone else’s brain injury, not mine!). I didn’t realize the significance of this until this morning, but this would normally cause me to immediately get up and go to my hobbit hole/sanctuary and put on my earphones. I did not. Though I was sitting on the floor (not on my feet), the pattern of thought of my brain not seeking spacial orientation was still in place. My brain was capable, for untold minutes (20-30 my wife thinks) of filtering out that noise. Wow. That is huge.
We’ve seen small signs that the same effect may be working with other types of overstimulation as well. My 2 year-old launched a stuffed toy at my face (usually ends me for a long time), and I still stayed out with them longer. How will it handle smells, other sounds, flashing lights, and other stimulation that tend to “end” my brain capacity rapidly? Time will tell. It will also tell the extent of what I am able to handle now, but even having a brain cushion of 20-30 minutes with the neighbor’s lawn mower is a dramatic improvement in life. I’m even beginning to see the possibility of serving at a regular Sunday Mass without needing to have less music. God willing (and that seems like the kind of thing he’d go for. Grin.).
What has led me to this point? God’s glory. Persistence. Entering into life as fully as possible, with the motto “as fast as I can, as slow as I must.” Diet. The nutrition I get on the Perfect Health Diet is amazing, and ensures as few toxins enter my body as possible while providing the building blocks I need to rebuild what is damaged. Running, barefoot and in Luna sandals, which builds and strengthens my proprioceptive capacity. God’s grace. God’s grace. God’s grace.
By my second run, as the glorious time of sunset, this pattern was already comfortable and familiar (comparatively speaking) to my brain, and I did not need to wrestle with it to get it to stop trying to do a job that is normally, rightfully, its, but which it has no capacity to accomplish anymore. This new pattern seems to free me and my brain in ways I’m a long, long way from grasping, but I’m grasping as fast as the wee squirrels can crack stones inside my skull. Grin.
May God startle you with joy!
Last night I dreamed I ran without my sticks. This morning started off a “hard” brain day. I did a “recovery” run of two-tenths of a mile. When My wife returned from Mass, I asked her to watch me, as I was going to run without sticks and I’d have no way back of I couldn’t do it.
I ran 5k!
To put this in perspective, I have constant neurological vertigo. in 2003 the vestibular therapist told me he’d done all he could for me and the best thing for me was the hiking I kept insisting on doing (which he’d be extremely cautious about). In 2009, I discovered barefoot hiking, which led to barefoot running, which led to running with my simply carrying two light bamboo poles (instead of 4 pound bludgers) within a few months.
I’ve tried every now and again to run without the sticks. No doing. Today, on what looked like the least likely of days to go on a run let alone one that chucks the sticks — a miracle for the Feast of Christ the King!
Alleluia! May God startle you with joy!
To a healthy brain this looks like a gentle kiddy ride. To a brain injured brain its a massive barrage of motion blur, flashing lights, sound axes to the head, and much, much more. Want your ticket to ride?
For those who want or need to understand what it is like (sort of) to be blind or deaf, that is relatively easy to accomplish. Block those senses. It doesn’t give an appreciation for what it is like to live without sight or sound day in and day out, but you get an excellent taste.
Understanding what someone with brain injury experiences is a big challenge. Brain injury puts us on a different planet, where sound, light, smells, gravity, thought and more are all amplified, thicker, stickier, harder, and otherwise completely different than you experience on Earth. Trouble is, we look like we live on the same planet you do, so what we experience is very hard to understand.
The following list is not as close a duplication of what daily life on planet Traumatic Brain Injury is like; however, it does come far closer than not experiencing anything. Here’s your ticket to Planet TBI:
- Do not sleep at all the night before you begin this. Being sleep deprived mimics some of the stresses we live with all the time.
- Wear at least one sound magnifying earbud (like hunters use), turning them to greatest amplification. Keep this in and on for all interactions. Many with brain injury experience intense sensory overload as our brains can not filter out sensory input. Things you normally ignore without realizing they are there are loud and disruptive, visually distracting, headache inducing smells, and more.
- Wear on-ear headphones and iPod playing a type of music you find grating and stress inducing playing at a low lever (actually a medium level when amplified). Keep these in and on for all interactions. The constant barrage of stimulation we can’t filter out grates on us, much like always listening to music you hate. Also the stress of overstimulation creates difficulty not getting angry when seemingly small things happen (but to us, on our planet, they are huge weapons of attack).
- Wear a magnifying lens over one eye (or a pair of high powered reading glasses with one lens removed). Every 5 minutes (see timer below), switch which eye the prism is over (you may need two pair for this). This helps mimic visual overstimulation very common for us.
- Set an alarm to go off (loudly) every 5 minutes. When it does, stop whatever you are doing. Stand up. Turn around 20 times one direction, then 20 times the other direction while saying the alphabet backwards. We struggle to focus on anything we do, doing well to half task. This attempts to mimic these distractions, and show how hard it is to pick up where you left off. Also, many people with brain injury have some form of vertigo, so you get to taste that too.
- If you’re warm, wear extra clothes. If you’re cold, wear too few clothes. Our bodies often experience difficulty regulating temperature, needing to huddle under a down blanket in the middle of a summer day, or wear shorts on a winter evening.
- We could easily add more, to simulate a “hard” brain day (wear ankle and wrist weights, scratchy wool underwear, and more), but this will give you a taste, and we want your understanding, not your anger!
- Live life as normally as you can until your normal bedtime, attempting to do all your normal activities.
- End with a prayer for all with brain injury, that we be given healing and that we and our caregivers receive the graces of strength, courage, perseverance, and patience and love.
Everyone’s brain injury symptoms are different. This experience is meant to give a taste of what living with multiple deficits so common with brain injury is like. If you have a specific person in mind, you may want to ask them what they experience specifically, adding to this list to mimic some of what they live with.
Not sure you can handle a full day on Planet TBI? It’s the wimpy kiddy ride poser experience, but do the above for an hour and you’ll still get an appreciation for what someone with brain injury lives with all the time. Just make your hour at least in the afternoon after being up all night the night before, to get a better idea.
Do you have what it takes to taste what life on Planet TBI is like? There’s two ways to find out. I recommend the one that provides a two-way ticket. Grin.
Know someone you wish understood your brain injury better? Send them a link to this post, with the challenge to visit Planet TBI for a day!
Were you brave enough to ride? Share you experience in the comments below!
Several people on one of the email support groups I moderate have mentioned their success with Vitamin B-12 MethylCobalamin for addressing their brain fatigue and over stimulation in a startlingly wonderful way.
Here is some information on brain fatigue.
The only possible side effects listed are possible acne. I’ll be starting this when mine arrives this week and report how it works.
If you are using it or are starting to use it, could you please share your experience in the comments section? Thanks!
Here are the details: Vitamin B-12MethylCobalamine, sublingual (under the tongue), up to 20 mg per day (spread throughout the day, but reports of it hindering sleep mean you may want to not take it later in the afternoon or evening.
Perhaps together we can compile the collective results of our individual experiments.
Here is a description of the various headaches I have now with TBI and what I’ve found to be effective in treating them. I’d love to learn from your experience as well — comment away in the comments!
Blows to the head cause muscle and skeletal trauma in the neck, shoulders, and back because that’s where our rocks are anchored. Bash about the rocks, and their anchor point takes a lot of strain too.
When I “short circuit,” my muscles tense up, thinking they can protect me from impending disaster (the birds are chirping or the heater came on). When they do not let go, their constriction decreases blood flow, and spreads up my neck and to my skull, which then feels like a vice clamp is making it implode.
If unchecked, this will lead to a migraine headache in conjunction, and then I’m out for days, both getting rid of the headache and then recovering from it.
If I enter an adrenaline rush, then my muscles instantly clench up as part of the fight or flight response.
Migraine headaches are triggered by various things in different people. In my case, direct light, flashing lights, reflecting lights, and many and various smells are a direct triggers. I also get them (most often now, as I avoid the direct triggers as much as possible) as the “second stage” of tension or sinus headaches, when the migraine joins the party and makes for a doozie of a whop-banging headache that makes the battle scenes of Braveheart feel like they are happening inside my head. Spears, swords, axes, hammers, oh my!
The only thing that helps my migraines is sleep in a dark and quiet room and then days of recovery. I avoid these beasts as much as possible and have not had one in a very long time.
Pressure in the cheeks, behind the eyes or in the forehead is most often the result of sinus pressure.
Why do people with TBI, who did not have sinus issues before, suddenly have them after their brain injury?
Stress. Stress increases our breathing, causing us to cast off too much CO2, required to exchange oxygen at a cellular level. By over breathing from constant stress, our body tries to protect us by swelling our sinuses. Unwittingly most of us get around this by breathing through our mouth. Buteyko Breathing is the best way I know to learn how to breath properly all the time, eliminating sinus headaches completely.
Here’s what’s worked for me (in no particular order), and the types of headaches I’ve found them effective against:
— dangling on my inversion table as soon as I short circuit. Increases blood flow to my brain and helps relax the muscles. (All types)
— Cacao Nibs. Helps relax my head when it is recovering from implosion due to either muscle tension or adrenaline rushes.
— ResGrape red wine grape extract. Increases blood flow by dilating blood vessels. Opens up my head and makes it feel far more normal than it has since before I became disabled 8 years ago.
— Barefoot running. My entire body moves better and more efficiently, my posture is improved, and my back, shoulders, and neck are far, far looser all the time. It increases blood flow, and releases the body’s natural healing that science does not understand but is beginning to know is there.
— Advil, taken in prescription dose (800 mg). as a muscle relaxant. This helps with the few tension headaches that I can’t treat in other ways.
— Buteyko Breathing. Helps decrease the frequency and severity of muscle tension headaches, and eliminates sinus headaches all together.