Saturday, August 18, 2012

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!


Clinical Negligence Solicitors said...

What an inspiring and happy life you got there! Keep that high spirit! And oh, double like for the picture! :)

Pat Vega said...

It works for me!