There’s so much out there that beckons—family, friends, ethnic textiles, and, more recently, the writers’ world. I am compelled to answer the call—all the calls! I reject the invalid role that my bloody brain repeatedly tries to thrust on me.
In order to live a full life, I’ve had to learn to set up safety nets wherever I go.
Before the brain injury, I had no difficulty living a fast-paced life. I combined a full-time job with a variety of extra curricular activities including time-consuming hobbies, such as weaving and dragon boating. Travel was an integral part of my life, with trips to conferences, workshops, and with family and friends at home and abroad.
Now, in the wake of my injury, I can’t do nearly as much. Tasks that in my past life were a matter of course, such as grocery shopping and driving, deplete my resources. Travel now drains me, especially when it involves flying. Contending with the high volumes of sensory input streaming in at airports and in flight wears me out.
I’ve had to learn to apply coping mechanisms and compensation techniques to function with my damaged brain. Though pacing myself to prevent debilitating fatigue would seem easy to apply, for me, it is one of the hardest adjustments I’ve had to implement. When I travel, it’s especially difficult.
When I’m outside my home territory, having less control over the agenda hampers any attempts to slow down. Also, I don’t want people to worry. I don’t want to call attention to myself. I don’t want to miss out, and I don’t want to slow others down.
Another obstacle in my way is that future events, including possible sources of trouble, now mean less to me. As far as I’m concerned, much of the future is abstract. It’s as if the wiring between cause and effect, between my notion of past and future, is faulty.
Trips often don’t seem real until I actually land at the destination. As a result, planning and preparations don’t make sense. I usually pack for an upcoming trip at the last moment, and when I finally get to it, I have to force myself to do it. In my mind, there’s no good reason for me to undertake a task that now feels so overwhelming in its complexity. Since the injury, poor organizational skills and the difficulties in managing high volumes of data—figuring out what I need to pack, how to arrange it in my luggage, what bags should I take—are daunting.
In time, as I healed, I became better able to manage my bloody brain. I learned to set myself a list of unbreakable rules that help me prepare for trips. A side effect of my brain injury, a strong OCD (obsessive-compulsive disorder) streak, has a surprising benefit: I have a list of basics I need to pack that I follow religiously, plus a set way to organize items in my suitcase.
My rules also include arranging for safety nets.
I knew the trip to visit my family in Israel would be grueling. I knew better than to trust my own judgment. If I hoped to convince my bloody brain to cooperate, I needed someone to watch out for me, to keep me out of trouble.
Before the trip to Israel, I spoke to my sister about my anxiety. She understood and empathized—she’s walked in my shoes. She too has cavernous angiomas that have bled. Like me, she is often tempted to outpace herself. But unlike me she is assertive, and when all hell breaks loose with her bloody brain, she knows to take it easy and to rest despite outside pressure. I, on the other hand, have trouble protecting myself, no matter how bad shape I’m in.
During the trip, she shielded me from ambitious plans from well-meaning family and friends who wanted me to participate in activities that would drain my resources. And she also shielded me from myself; I was excited to spend time with my family, not wanting to cause concern, reluctant to disappoint, and too willing to go along with the crowd.
Unfortunately, the safety nets don’t always work. Some of the changes that the bloody brain brought about get in the way. I am more emotionally volatile now, and often, my emotions drive me instead of reason. In addition, my impaired memory and poor grasp of the connection between cause and effect often results in me downplaying potential difficulties.
During my first couple of days in Israel, I didn’t listen to my sister’s advice. I was sure I knew better and that I would be fine. Even after the bloody brain lashed out at me with a crippling headache, I felt that she was being overprotective. I did finally listen to her—not because I fully agreed with her, but because I didn’t want to upset her.
As my brain rewired post-injury, my memory and my ability to make connections improved. As my self-awareness grew and I became more in-tune with myself and the bloody brain, planning ahead was easier.
But even now, more than a decade since the surgeries, when I realize that common sense says, “wait a bit, take a break, don’t do so much,” there is still a niggling little voice inside me telling me that it’s not really necessary. I still overstretch myself, though nowhere near as much as I used to. I’m doing better now, I’ll be fine.
Now, where did I put that safety net?
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