Last week we returned home after a week in Alaska. My brain tolerated the airports and flights beautifully. I shockingly felt good enough the day of our arrival in Anchorage that we headed out for a 25-mile bike ride up the Coastal Trail. There was a lot of hiking and running, and eating wild blueberries. We took a 6-hour glacier cruise, with some rough water, and I had no trouble…until afterward when I spent the rest of the day with my world rocking back and forth. By the evening, I was a disaster, holding on to walls and furniture to keep from falling over in our hotel room. Besides that little blip, my brain injury was mostly a non-issue for the entire trip. We arrived home at 10 pm and I was still able to work the following day!  It was fairly amazing.

Somewhere around six months into my recovery from brain injury, I started seeing a new physical therapist.  The truth is that I started seeing her because I was having a hamstring issue that was interfering with my running, and I felt that running was all I had. As I sat in the reception area, I stared at the forms they gave me to fill out. Full of words and lines and questions, I couldn’t even look at them, much less complete the forms. The fluorescent lights in the office made it difficult for me to even keep my eyes open, and I came close to simply walking out. The receptionist asked if I was done with the forms, and I told her I couldn’t fill them out, explaining that I had a brain injury. A few minutes later, Mary Finck, DPT brought me back into an exam room. Following a brief exam, she informed me that she was far more concerned about my brain injury than my hamstring, but brain injury happened to be her main professional interest. So began my frequent visits to Dr. Finck, spending half my appointment time working on my balance and vision issues, and half working on my hamstring to keep me running. She understood how much running meant to me in recovery, and she helped keep me going.

With every visit, I would check-in at the front desk, and then wait outside to avoid the fluorescent lights until it was time for my appointment. After several sessions, Dr. Finck called me out. She told me it was time to stop hiding, and I wasn’t going to get any better if I didn’t work on exposing my brain to stimulus. By avoiding everything that triggered my symptoms, not only was I not improving, but I was actually becoming even less tolerant of these stimuli. I was no longer allowed to wait outside, she asked that I wait in the reception area. She gave me increasingly more difficult balance and vision exercises. Most importantly, she told me that if something was hard, it was exactly what I needed to be doing. So began my brain injury recovery training plan.

As an ultramarathon runner and an obsessive planner, I like to set a goal and figure out how I am going to get there. I began thinking of my recovery as a race. If you try to run 100 miles off the couch, it is going to go poorly. The process of training for an ultramarathon is slow, calculated, and can sometimes be one step forward and two steps back, but it is a process, and it takes effort and dedication. Recovery from a brain injury is no different. If you are avoiding all the things that trigger your symptoms while you wait to get better, IT. WILL. NEVER. HAPPEN.  Every brain injury is different, and so is every recovery. What worked for me, may not work for you, but if you can create a plan, make yourself a calendar, write down your goals and break down steps along the way, you are giving yourself a better chance.

So what did I do? I started shopping, cooking, driving, and going to restaurants and breweries. Don’t get me wrong, it isn’t like I just suddenly decided I was fine. All of these things felt awful, but I made them a part of my training plan.

My Brain Injury Training Plan:

1. Go to the grocery store every day.
2. Follow a new recipe at least once a week
3. Visit a restaurant, coffee shop, or brewery, twice a week.
4. Exercise for at least 30 minutes every day (this was only walking at first).
5. Practice driving short distances.
6. Set aside time for vestibular therapy, cognitive therapy, and vision therapy exercises as instructed by your care providers. Over time I did less of these, and more work on everyday life experiences.

Dr. Finck told me to buy one or two things at the grocery store every day. It felt horrible. For those of you that do not have a brain injury, a grocery store can be one of the most challenging places for us. It is designed to be a place with eye-catching displays, bright and colorful signs, words and labels everywhere, and decisions to make. I have cried more than once in the aisles of grocery stores. I have been lost, confused, overwhelmed, and panicked just trying to buy toothpaste. It was at about two years into my recovery that I could occasionally make it through the store with a full shopping list. However, after 4 years, I still become symptomatic in some big new stores.

Ten strategies for the grocery store:

1. Plan to go every day.
2. Avoid the weekends and 5 pm rush! Mornings or mid-day is usually less crowded.
3. Plan to purchase only 1 or 2 items, and write these items down on a list ahead of time.
4. Go with someone.  In the beginning, it was easier to hold on to the cart with my head down and simply walk through the store as my husband shopped for a few items.
5. Wear a hat and dark glasses. This will help with the fluorescent lights, and block out some of the surrounding visual stimuli.
6. If you drive yourself, park in the same general area of the parking lot every time. If you are overwhelmed by the end, you will still know where to find your car.
7. Don’t use the self-checkout. Even with your one or two items, it is easier to let someone ring you up.
8. Nap in the car if needed before you try to drive home.
9. Set a timer on your phone. If it takes you longer than 15 minutes to grab one or two items, you should reduce your goal to simply walking to a department (such as produce or dairy) and walking back out.
10. When 1 or 2 items isn’t horrific, try three or 4 items, and then 5 or 6. The point is that when it becomes comfortable, you are no longer challenging yourself and there will be no further gains. 

Ten strategies for cooking:

1. Follow a new recipe at least once a week – this was my homework from Sarah Brittain at Colorado Brain Recovery.
2. Find a cookbook or cooking blog you like (Smitten Kitchen is my favorite) – this will allow you to spend less time scanning the entire internet for a recipe.
3. Start with recipes that have few ingredients.
4. One pan meals are the easiest, keep your plan simple.
5. Create a shopping list. You might not be ready to buy everything you need, so send someone else to the store at first, or look into grocery delivery options in your area.
6. Prep! Measure the ingredients, chop the veggies, and get everything set first. This will make the cooking process much easier, and reduce mistakes.
7. Cook with a friend and have them read each step and help if needed.
8. Give yourself at least twice as much time as the recipe says it will take.
9. Until shopping becomes easier, don’t plan to go to the store AND cook dinner on the same day.
10. Have a frozen pizza for backup just in case you measure 1/4 cup of salt instead of sugar.

Ten strategies for restaurants and breweries:

1. Pick a location that isn’t busy, and go somewhere different twice a week.
2. Coffee shops can be great small venues to start with.
3. Go alone or with one other person initially.
4. Seating on a patio (out of harsh lighting and noise) is a great place to start training.
5. Look at a menu online and decide what you would like to order before you get there.
6. Wear a hat, dark glasses, ear filters, or noise-canceling headphones, and don’t give a single care to what people think.
7. Start by ordering something fast – an appetizer, dessert, or a non-alcoholic drink, finish it, pay, and go home.
8. Even if it feels awful, even if you are overwhelmed, sit there for 10-15 minutes. Skip ordering, drink a glass of water, leave a tip.
9. Progressively work on louder environments and more people. You don’t need to participate in a conversation at first, just be present.
10. Over time, try not wearing a hat. Try taking out your ear filters half-way through dinner. Go to a busy Friday happy hour. Make it more challenging.

Ten strategies for driving:

1. Safety is more important than progress. The last thing you need is another brain injury.
2. Start small, depending on your level of impairment, an empty parking lot may be a good place to start.
3. Don’t start driving until you can keep your eyes open in the car while someone else drives.
4. Several short trips a day are better than one long trip. Drive around the block near your home several times a day.
5. Turn off the radio and do not try to maintain a conversation while driving.
6. For any “longer” drives plan a spot or two ahead of time to park and close your eyes for short breaks.
7. Have a friend or partner ride with you as a “student” driver would. Or consider taking a driving class.
8. Stay off the highway.
9. Don’t drive during rush hour, in the dark, or in bad weather.
10. Always look again. Double and triple check your blind spot.

Brain injury recovery can become a full-time job. During my running training, there are days when I am exhausted when my legs are not willing to push anymore. On those days, I let myself walk, and that is okay. There will be days when you can’t go to the store, or you instantly become symptomatic. It is okay to have a bad day. It is okay to stop, go home, and take a nap. What isn’t okay is not trying again the next day.

Avoiding things that trigger symptoms prevents your brain from adapting to those triggers. As I stated earlier in this post, if something is hard, it is exactly what you need to be doing. My running coach pushes me to run faster, to do one more interval, and it hurts, but I would never get stronger if all I did was go out for easy, comfortable runs.

My next goal is reading. I have yet to read an actual book. I listen to audiobooks, but I think it is time to work on that. The day Dr. Finck told me to stop hiding was a swift kick in the ass to get me going. Since that day I continue to push myself and have never stopped trying to get better. Stop hiding. Get out there and start actively working on your own recovery! Create a training plan on a calendar. Recovery is possible. It won’t be easy, it won’t happen overnight, and it definitely won’t happen at all if you don’t put in the work.

-Kristin