CONCUSSION:
Concussions are hard to understand for many reasons:
The central processing unit that would help a person with the injury understand it is the thing that’s broken. Anyone with a concussion will have a very hard time taking care of themselves or communicating what they need because their judgment is compromised.
The only person who knows how the concussed person feels is the person with the broken CPU, which means that it’s very hard for people around the person with the injury to understand what that person is going through. This means it’s really hard to help, it’s hard to know when to trust that person‘s judgment, and it can be hard to know when to suggest a change of course.
Any concussion that hasn’t resolved within four weeks will probably take 1 to 2 years to resolve fully, which is an incomprehensible amount of time and also quite dispiriting to the person who is frustrated that they can’t do anything to speed up their recovery. It takes a tremendous amount of patience and trust from everyone in the sphere of the concussion. My concussion took 25 months (that is when I could regulate my body temp again, at least) to heal fully, but I was relatively operational within a year. I have an extremely unforgiving job, so that made it abundantly clear how not-recovered I was.
There are things I found helpful:
1. Sleep--unlimited, unquestioned access to sleep whenever I needed it the moment I needed it: sleeping in, naps, sleeping for 12 hours at night, etc.
2. Medical therapist for dealing with anxiety, depression, and executive functioning (this is a psychologist who partners with my pcp's office and interfaces with the medical team to help with overall medical care. The appointments were short and regular and part of my medical record rather than privileged conversations.)
3. A partner who asked if I wanted to go lie down if he thought I looked tired or overwhelmed and I hadn't yet realized I needed a reset
4. Letting go of goals, outcomes, and deadlines
5. Being believed
6. Metaphors that others could understand: Infant brain, toddler brain, cellphone battery--when my brain was tired it would shut off like a phone that worked fine until it ran out of batteries.
7. Acceptance of the gravity of the injury and the total lack of control over recovery
8. Stable income
9. Not hitting my head again (even a tiny tap was excruciatingly painful)
10. Learning to recognize symptoms that my brain was getting tired before it was exhausted, and then honoring my brain's needs
11. Vision therapy; balance therapy; physical therapy for the other injuries to my body
12. A lot of time, a lot of patience
13. Embracing the opportunities that *do* exist
14. Sunglasses, night glasses, earplugs
15. Electric blanket (my brain couldn't regulate my body temp and when I got tired my whole body suddenly got really cold)
16. Every time I made a plan, I needed to have an alternate plan in place, too, in case that plan couldn't work out.
17. Not masking symptoms that helped me understand that I needed to allow my brain to recover (one doctor friend recommended anti-nausea meds to stop me from vomiting when my brain was overloaded, but the vomiting was a sign to stop immediately and give my brain a break, not a symptom to overcome)
Helpful actions from others:
1. Believe the person that their injury is real and massive.
2. Watch them for signs of overwhelm and help them step aside to take a few minutes/hours to recover *immediately* when their brain needs a break. Not in 5 minutes.
3. Helping them live in the moment, find opportunities, WITHOUT EXPECTATION
4. Limitless patience
5. Physical support: space to sleep, food to eat, shelter, peaceful spaces, rides to and from appointments (people with massive concussions should not be driving), access to fresh air and walking, no re-injury
6. Letting go of goals for them or from them: don't expect help, don't expect work, don't expect anything of them except a full-time job of recovering.
7. Support for the support team: it's hard to be endlessly patient and believe the person is always doing their best. Talk with each other, call me any time, but be sure to unload away from Anna. She can't be the support at this time.
One of the most useful ways I have found to describe my experience is to reference babies. We don't ask them to grow up faster than they can, we don't chide them for sleeping throughout the day or waking up at night, we don't scold them for crying. Treating a concussion like a baby is really helpful and also accurate: the brain broke and needs to grow, just like a baby's brain! Loud noises, bright lights, overstimulation of all kinds can literally hurt. Our bodies get shockingly cold when our brains are too tired to regulate our body temperature--wear more clothes! The baby metaphor is a good metaphor, but it's also an accurate window into the state of that brain--it's working overtime to grow and it's exhausting and painful. As the brain grows, the metaphor moves on: the concussed brain will start to look like a toddler brain! Sleep patterns will change, ability to handle stimuli will improve, and stamina will increase. BUT you will also overdo it, just like an oft-injured toddler, and those setbacks are part of learning what you can handle and what you can't. It's okay to have a setback. Allow your brain to move forward and grow up at the rate it can. It's ok to be sad at the lost opportunities. But it's also possible at the same time to see what new opportunities arise from this unique time. Learning to invest in what you can control and letting go of what you can't is useful in concussion and the rest of life.
It's a delicate balance to strike: allowing for the infant part of a brain to take what it needs to grow while not being infantilized. It's ok to make missteps, to receive grace, and to learn how magnificent brains are along the way.
My injury was a nightmare and I would never wish it on anyone, but beautiful things can come of awful things. There are many opportunities for growing brains to flourish during concussion recovery and for a person to gain a precious confidence from this searing experience, too.
Things I bought that helped me:
Blue blocking, over-glasses sunglasses that helped with day-time/bright lights, including direct light (wraparound quality was helpful)
Yellow-blocking, over-glasses sunglasses that helped with being a passenger at night, and eventually with driving at night
Earplugs
Things I read that helped me feel like I was not alone:
This article features a person with a really severe TBI, in which a full recovery is not expected, unlike mine, unlike most. However, I found this article extremely moving--so few people believe how compromised people with TBIs are and the author did a lot of work to internalize Abigail’s experience. It takes a long time to understand TBI from the outside. I also found the article helpful to share with people to help explain that when I was tired I wasn't just "tired," my brain was shutting down, that when something overwhelmed my brain and I threw up, it wasn't nausea you treat with meds, it was an indication that I was wildly overdoing it and needed to stop immediately. https://repeller.com/abigail-bruley-memory-loss/