You and your caregiver are the expert on your brain injury
I am fifteen 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.
I use Might 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
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.
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?