It’s been over a year!
Apparently, I’m in the group that some call the “Miserable Minority.”
I drew the short straw when it came to typical concussion recovery. All the reassurances from medical staff that it would just take a few days, or maybe a few weeks, possibly months, or no later than a year … here I am 20 months and counting.
I’ve seen different numbers when researching, but conservatively, 15% — 35% of patients don’t rebound from their injury.
What lies ahead for the Miserable Minorities are months, years, or a lifetime of suffering. Not only can the patient suffer, but family, friends, and coworkers may lose the person they once knew.
There is no magic pill. There are no magical exercises. The medical team has no choice but to treat the symptoms. New habits are needed. New brain pathways need development. As this happens, they’ll be a new “you.”
The good news is that the new you may end up being just as good as the old, maybe better. Maybe the patient will be more empathetic to others. They may shift what was important to them and become closer to certain people. There will be differences, that’s for sure.
On the outside, people may not know the hell your mind is going through. You may be more emotional. You may be thinking and speaking slower. You may get confused more often. You may need help driving. You may get defensive. You’re going to need to be comfortable apologizing a lot more because you’re irritable.
You may experience mental and/or physical fatigue from common tasks. You’ll be perceived as lazy. You’ll be judged. You’ll see it plain as day on other people’s faces. It may take days to recuperate from the fatigue. It will make you look even more lazy.
You may avoid brighter/louder environments. You can no longer multitask. You may no longer like the same music, much less listen to music while you attempt to do work or be productive.
You’ll cancel social requests. You’ll avoid social interactions because there is just too much stimuli and you can’t control as much outside of your home.
The mere act of showering can be exhausting. Need to shave? Maybe tomorrow. For now, celebrate the fact that you bathed.
Tomorrow, try to shower and shave. If not tomorrow, then the next day.
Build up your tolerance to common activities. Celebrate doing a load of laundry. That’s three big wins on the board now. You’ve cleaned your body and your clothes.
Maybe try to venture out and do some food shopping? Wear a hat and sunglasses to lessen the strain the fluorescent lighting is causing. Wear noise cancelling headphones to block the distracting music and announcements. You look crazy, but you don’t care. You’re doing this! You’re shopping. The bright marketing on all of the boxes slow your browsing. The math to determine what size box of cereal triggers your annoyingly slow basic math brain. You judge yourself and thankfully see the store has a per unit calculation for you. Reassure yourself that you’ll be able to do that quick math again, eventually. Go home. Celebrate. That’s another win on the board. Maybe next time, don’t use the headphones.
These are your challenges. This is your future. These are coping skills that will build the “new you.” They are small. You feel like a child learning the skills you had taken for granted. Many will not understand this.
You’ll likely categorize your social circles into three groups:
- People who don’t understand, nor do they attempt understanding. Generally, they are just judging you and being critical. Avoid this group.
- People who don’t understand, but are trying. Generally, they exchange pleasantries, ask how you’re doing, but never seem to get it. You have to remind them over and over that you’re dealing with a brain injury. Proceed with caution with this group. It can be draining.
- People who understand, remember and support. These are your lifeline to coping and recovery. These are the ones that understand you need help or time to process things. They may be your note takers at the doctor appointments. They’ll understand when you need space. They may help you identify triggers early to prevent “system overload” leading to fatigue. They are your cheerleaders, your motivators, your support. Hug these people, thank them, and tell them they mean the world to you.
My compassion for others has grown since my injury. I’m more emotional, in general, now. It’s humbled me and reminded me that you don’t know what’s happening in many people’s lives. I look forward to sharing more details with you.