Brain injury is weird. It is weird from the inside, and, from the outside, it looks weird and sometimes people mistake weird for “fake” or exagerated or psychological when it’s actually just plain head-scrach-worthy. While every brain injury is different and effects each person differently, there is a commonality (and folks with other brain challenges like stroke, brain cancer, disease, etc, experience much the same thing, though for different reasons): we all have to learn to stay within our daily brain budget. You may have received this link from someone, asking you to understand their brain injury. You may have stumbled on it yourself, or be the person with brain injury trying to understnad what is happening and why the “world just seems so hard.” If you want to understand the weirdness of brain injury in yourself or someone you love or care about, start by understanding the daily brain budget.
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.
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.)