Getting better?

On August 20th I went to see my doctor. He is one of the leading brain injury physicians in the U.S. We had a great session. I told him about my vacation experience and how confident I have been feeling. We talked about how much I have been learning from my new cognitive therapist. The doc pointed out that while I was seeing my previous cognitive therapist, I was still working. He pointed out that if getting through the airport was so difficult, there was no way I was going to get better while I was working.

It left me thinking about the phrase "get better." I am getting better. I have more self-control during non-stressful situations. My coping strategies have improved. Acceptance of my leaky brain is improving my relationships due to increased trust and fewer arguments. As I floated down the street, I allowed myself a little fantasy. What if I get so much better that I can teach again? It's true that I donated all of my math and gifted education books to a good cause. No matter because I would be walking into a new situation where I would need to be told what to teach. It's also true that I dropped out of my master's program. Also, not a problem since I could use the credits towards certification in New York.

cloudy vision

Then I imagined getting through one single 45 minute class and I my stomach cramped up. Some aspects of my brain injury are pervasive. I'm not fatalistic but I need to take it slowly. I did walk around in the lovely cloud of denial for awhile.

Case in point:

1. In the last ten days I have lost:
1. my favorite new hat
2. the keys to my storage room
3. a check
4. my mini voice recorder
5. my iPod touch
6. a prescription I was supposed to get filled 
2. In the last ten days I forgot:
1. to bring checks to my doctor's appointments
2. to pick up laundry from the basement
3. to put milk back into the refrigerator
4. to mail a letter and ended up carrying it around for days
5. to take the remnants of a sandwich from my purse
6. the point of this blog entry
7. to eat lunch twice, leaving me cranky and confused until dinner
8. to feed my dogs one day
3. In the last ten days I found:
1. a gift certificate that I keep misplacing
2. two checks that I never deposited, one 18-months old and the other 3-years old
3. three prescriptions from 2010
4. four doctor's bills from 2 years ago that I never submitted for insurance
5. and no golden rings - "Engagement ring, I miss you so much!" 
4. In the last ten days just out of anxiety I bought:
1. knitting needles that I do not need
2. 3 new bags that I do not need
3. pounds of candy that I should not be eating
4. four poly-cotton t-shirts online for Brian, absolutely certain they were 100% cotton
5. articles of clothing that do not fit from the thrift store to alter
6. a cheese quesadilla 

I also double booked appointments twice causing last minute scrambling. I have not made two important phone calls I was supposed to make. I spent a whole day trying to mail one reimbursement form. I went back home several times because I forgot something I needed. This caused me to be late or unable to complete tasks. I yelled at a sales person. I tripped and fell down in the subway. I screamed when someone walked too close to me. I called my pharmacist stupid because he didn't fill one of my prescriptions. I interrupted every single person who tried to talk to me. I misunderstood at least a quarter of what was said to me. I argued with my neurologist about how to read my MRI. WTF!

All of this is not so unusual for a ten day period. In general I note my limitations and keep working. I guess it just hurts now because I kind of thought I was "getting better." 

Traveling with a brain injury

or any sort of invisible disability can be a nightmare.

For me, the problem begins with packing. This was one of the first signs that there was something wrong with my brain and one of the most difficult problems to explain. It has something to do with prospective memory, remembering to remember. Planning is one of those "executive functions." You have to remember what is needed for a trip and then follow through with gathering the correct items and then make sure all of those items (and not a bunch of others) make it into the bag. 

I just got back from a week long trip to my beautiful and most favorite place in the world. It left me feeling that I was capable of change. I actually packed the night before. I gave myself permission not to bring any crafts or my laptop. For entertainment, I brought only a book of Sudoku on my carry-on. It was liberating. Although it was scary by limiting myself to the essentials, I eliminated a lot of the cognitive energy it takes to keep coming up with alternatives. 

I prepared for this trip for weeks with my cognitive therapist. We reviewed all of my packing strategies, role-played going through the airport security, and developed a list of phrases I could use to reassure myself under worst-case scenarios. I made a short list of helpful suggestions to share with my sister. I know how much she loves me, but sharing a room with me for a week even before my brain injury was difficult. My tendency to perseverate, fixate, get stuck, or over-react put a strain on all of my relationships. As an exit strategy or to put an emergency brake on any potentially explosive conversations, I shared the phrase my husband and I use: Enough said! Although she modified it slightly, tempering it with I think that is... I still heard "enough said" and responded like a Pavlovian dog. I am so grateful that she is open and understanding. 

All of this was great and made the whole vacation experience much more relaxing. The number one and most helpful part of airport travel was the use of a wheel chair. I broke a bone in my foot in June and was still in a cast for this trip. I rested with my foot compressed, elevated, and iced for the whole month of July. What little walking I did required a cane and a slow and steady gait. When I found out that I would still be in a cast for my trip, I called the airline and asked for a wheel chair. They never asked me what was wrong. They just picked me up and whisked me through the whole confusing, overwhelming experience that is post 9/11 international travel. 

For a person with a brain injury, at least this person, getting on an airplane is like navigating an obstacle course. The fluorescent lights and abundance of signs, the crowds of people and bags, the number of personal, important items to juggle, and the gigantic new place to navigate without a map or help are all part of a giant recipe for brain freeze or, more likely, a catastrophic reaction. Besides all the external obstacles, my brain injury gave me a new bunch of hurdles I need to tackle cognitively. I have to keep telling myself that my perception of the world may be distorted. I have to use my training and hope that my reframe is correct and that I will respond appropriately. If this system breaks down, I start crying. I can be completely aware that this is not an appropriate reaction and still unable to control it. The more embarrassed I become, the harder it is to control.

The wheel chair transformed my experience. Everyone was immediately helpful. Nobody expected me to do anything and even stopped me if I tried. A guide provided by the airline whisked me past all the lines and navigated all checkpoints fielding and repeating questions for me. At every step there was someone to tell me exactly what to do. I was constantly reassured and given frequent information about what to expect next. The guide waited to make sure I put the appropriate documents where they belong. I cannot tell you the number of times I have lost my wallet or all my money during situations where my attention is divided. I wasn’t great pre-injury but after forget it. I stopped being surprised. The wheel chair service was like a magic carpet ride. Nothing could go wrong. Nobody minded if I was slow or confused. I was met with patience and respect at every turn.

Now you may be thinking, wow, everyone should get that. The difference is that my injury can render travel impossible. Brain injury is far more crippling than the broken bone in my foot. The problem is that it does not show. There is no giant bandage around my head to remind everyone that I have a problem.

I strongly advocate that everyone with a disability that affects their ability to travel to request a wheel chair. I think I will be doing it as long as I am still having trouble. It is truly an accommodation that makes airplane travel accessible to me. I would never take a wheel chair spot in a parking lot. Someone else needs it more than I do. The wheelchair service at the airport is not the same. There is no limit on the number of people allowed to use them. (Not that I know of anyway.) There is no equivalent for folks with an invisible disability. 

I googled “TBI and travel” and there is a dearth of information on the Internet. I got to the gate all by myself. It was the first time traveling since my injury that I arrived at my destination feeling as capable as when I walked out my door. So, there it is.

Look at me in my favorite place in the world!

A great message for the ones who stuck around:

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