Here we are in 2018. I meant to kick off the year with a blog post, but I hit a rough patch, and here we are halfway through the month. At the end of the year it is fun to look at running statistics on TrainingPeaks, and last year I logged more miles in one year than I ever have before – 2,106 miles! Now here we are in 2018, and I’ve already completed a 50K, which is the earliest I’ve ever been at ultra-marathon mileage. Winter isn’t stopping my time on the trail, and the running continues to help with my recovery.
During the two years of writing this blog I have talked a lot about my symptoms, but recently I was asked “how do those things actually affect you?” This made me realize that although I throw around words like light and sound sensitivity, cognitive fatigue, mental fog, or task initiation, that maybe it is difficult for people to understand what that means in terms of daily life. So here are a few moments from my recovery I will share as examples to help people understand what living with brain injury can be like.
Standing in the grocery store, I blankly stared at the shelves of shampoo. Josh was reading the list I had made – shampoo, lotion, deodorant, toothpaste. I asked him to read it again. It didn’t make any sense. He kept saying words that had no meaning, and I stood there staring. There was a part of my brain that was still functioning well, and that part was alarmed because this was a very simple task and I should be able to do this, but I had no idea how to take that list and walk down the aisle to find the things he read out to me. I remember the scientific part of my brain clearly thinking, “I wonder if this is what Alzheimers feels like.” There is actually a term for this, “grocery store paralysis”, and it affects a lot of people with brain injury.
In the car, every tree we pass casts a shadow across the dash, then the sun is back, then another tree and shadow, then sun. The next time you are in your car, take a minute to notice the light reflecting on the dash. It becomes a strobe, and every single tree causes a flash that I feel as a physical blow. I wear a hat, and sunglasses, but it isn’t enough to block out the flash. At night, this becomes every street light or car passing us. I have put my hands, a coat, eyemask, or a pillow over my head, and sometimes all the above to try to block out the flashing, and the nauseating disorientation that results.
There have been so many days where I sat crying on the floor of my closet for 30 minutes, or an hour, because I couldn’t figure out what to wear. Many times I would simply give up and never change out of my pajamas, or wear the same thing day after day.
Sitting with a group of people, someone sitting near me might try to strike up a conversation, but with all the talking around me, I have no idea what they are saying to me. It is like they are speaking Spanish, and I grasp words here and there, but I can’t follow anything, and I want to tell everyone to be quiet.
At times I would be hungry, and I would look for food in the refrigerator and the pantry. They could both be full, and I would walk away still hungry because I couldn’t decide what to eat. I might go all day, and not eat anything until Josh came home and made dinner.
There was a morning when I tried to make myself oatmeal for breakfast, but the package had instructions for 4 servings, and I only wanted one serving. I tried to take some deep breaths, and tell myself that I got an ‘A’ in AP calculus, surely I could figure this out. A few minutes later, Josh came in to find me crying over the stove, because in fact I could not figure out how to make that one serving.
Walking the dog through the neighborhood while the snow is falling, I struggled to control my anger because the dog was in heaven, and I was miserable. Things were spinning, and while I was trying not to fall down, he was wanting to play and run. I begged him to hurry up and pee, so I could go lay down or vomit, or both.
I could go on, and on, but the point is that beyond the “big” things, like not being able to return to work, it is all of the small things that really add up. And as far as I have come in my recovery, I still have some very bad days. That oatmeal incident I mentioned earlier – that was only a month ago, the snow incident was last week, and on bad days I still struggle with every single one of those other things.
Overall 2017 was better than 2016. I’ve been able to do more, and thankfully the good days outnumber the bad, but that doesn’t mean the bad days are gone. I think that is the hardest part for people to understand about brain injury. Being able to do something one day doesn’t mean I’m fixed, it means I had a good day. The next day, I might not even be able to make oatmeal. Overall, my recovery continues to trend upwards, and I know that 2018 will bring even more good days.
Here are my goals, hopes, and events for 2018:
- Start stringing my good days into good weeks!
- Be able to read a book – actually read a physical book, not just listen.
- Get a consistent part-time job. (I’ve been doing some projects here and there)
- Grow Like Minded (the support group & yoga class we started) into a larger resource.
- Be able to drive myself an hour on the highway.
- Ride 50 miles on my road bike.
- Quad Rock 25 miler , Fort Collins, CO- May 12
- Family trip to Hawaii – May 25 (The potential effects of this long flight terrify me, but I’m going.)
- Black Hills 50 miler – June 23rd (Josh’s first 50 miler!!!)
- Supported Wonderland Trail circumnavigation – 3 days, 93 miles – August 1-4
Some of these goals might not be realistic, but I can try. I’m not planning on doing a 100 miler this year, but I realize that is what I said last year, so we will see…maybe Josh and I can do one together…right honey?
Here is to 2018, and hoping that we can all make our own oatmeal, walk in the snow, and have more good days than bad.