To travel is to take a journey into yourself. – Danny Kaye
Like many Americans, I took a trip Memorial Day week. In my case, I was traveling with my older sister, Molly, and it became a journey into myself. I am still discovering all that I learned along the way.
The logistics were remarkable. I made 12 visits to five different airports, flew on eight Southwest flights, did one nine-hour drive in a large rental car and two two-hour drives in a tiny rental car, and stayed in three different hotel rooms.
The purpose of part one of my trip was to pick up Molly in Denver, go to New Haven, Connecticut, and accompany her to her 35th reunion at Yale. For a few years, Molly has not been able to travel on her own due to her brain injury from carbon monoxide poisoning.
The second part of my trip was to go from Yale to Omaha with Molly to meet my family in a de facto reunion to celebrate my nephew’s graduation from high school. We even managed to celebrate my mother’s birthday a bit early, with the entire family present.
My primary mission was to watch over and care for Molly as we traveled. Her health, safety, whereabouts, social activities, clothing, food—all of her needs were my responsibility 24/7 for eight days on the road, from her home to Yale and back. It was my journey that went beyond.
I was apprehensive at first about this trip, but Molly and I did pretty well and accomplished everything we set out to do. I knew how important it was for Molly to be at her Yale reunion and with our family in Omaha. For me, the trip was exhausting, difficult, and rewarding, and also a great opportunity to learn about my relationship with Molly, as her sister and caregiver, and how I can best shape our future together.
If you’ve read my book, A Normal Life, you’ll recall that I’ve made many trips to Yale with Molly over the years, for homecomings and reunions, both before and after her brain injury. The last time we were together at Yale was 10 years ago for her 25th reunion. This time, everyone in her class had aged, as we all do, but Molly had substantially changed.
As I described in a previous blog post (an update on Molly and Mom), Molly has declined in the past year. She used to be able to walk into a room and no one would suspect she has a severe brain injury until she might say something a bit off or do something that hints of her disability. These days, however, Molly’s walking has deteriorated to the point that she appears to have a disability from the moment you see her. Her posture is often stooped and her walking is shuffling and unstable. Molly has regular appointments with a physical therapist, and she can do pretty well if she is standing still or really concentrates to walk correctly. But with her brain injury, her mobility breaks down quickly. No matter how gentle I was, she despised being reminded by me to stand tall and walk “heel first.” To her Yale classmates, she still has the bright eyes, brilliant smile, and sparkle they remember, but the evidence of her brain injury is more obvious.
And yet, as we would arrive at a class event, with dozens of Yale alumni present, Molly would call out classmates with their entire names. She not only recognized faces, she knew which college they lived in, which sport they played, who they dated, who their roommate was—her long-term memory is amazingly good.
While Molly was often angry and harsh with me when we were on our own, she was almost always in good spirits and friendly and sweet when she was with others at Yale–from her classmates to the shuttle bus drivers. She did have an outburst or two, which was unusual for her. Typically she has these meltdowns only around her family or people close to her because she’s let her guard down. I think in the situations at Yale, the fact that she might have been tired or hungry, had a glass of wine, and was in a noisy, boisterous environment did not help her to maintain control.
But each time Molly became upset, or loudly angry, or stumbled as a result of her troubled walking, a Yale friend would swoop in to help. Many of Molly’s classmates knew about her brain injury because they’d read notices my mom and I had sent to Yale alumni publications. They may have been surprised a bit by her, but without exception, everyone at Yale was incredibly kind and caring to Molly and offered wonderful friendship to her.
Since our trip, Molly has told people how much she enjoyed being at her Yale reunion. I know I made it possible for her to be there and I enjoyed seeing her remembering her friends and socializing happily.
Unfortunately, until Molly agrees to use a wheelchair, she will not be able to travel by air again. The amount of standing and walking required to navigate through an airport is too much for her these days, even as I encouraged her every step of the way. She was offered wheelchairs many times by airport attendants and I suggested she simply luxuriate and use one. But she’d get very angry and yell that she didn’t want one or need it, even as she’d complain about the distances to walk and also stagger and fall.
Even so, the most difficult thing I encountered with Molly was that she said, “I don’t care” many times a day, especially if I was trying to help her or protect her. It was hard to hear my big sister so full of resignation. Sometimes she said, “I don’t care” defensively to reject my assistance to her. Other times, she truly did not seem to care and it stung to feel her unwillingness. This self-defeat is a troubling aspect of her decline. She either really doesn’t care, or she’s so frustrated and down on herself that she uses “I don’t care” as an excuse to not even try. I recognize it comes from her brain injury, but it will make it immensely challenging to help her be her best if she isn’t able to care anymore.
So, Molly’s life skills trainer, Naomi, and Mom, my sisters, and I are focusing on improving Molly’s self-esteem. Our belief is that if we can help Molly be happier about herself, she will begin to care again. Naomi is working daily to remind Molly to not say things such as, “I’m dumb,” “I can’t,” and “I don’t care.” In my conversations with Molly, I’m trying to highlight her positive statements and actions. I hope our efforts to boost Molly’s disposition will improve her attitude and outlook on life.
One of Molly’s friends told me that when they were together at Yale, Molly was “beautiful, funny, and fierce.” She is still a powerful personality, and I want to steer her away from the anger and despair she often gets tangled up in so she can feel her vibrant spirit and zeal more often.
Finally, my weeklong trip with Molly points me in my direction on my new path. I expect to move to Denver this summer and take over from my mom as Molly’s primary care coordinator. I plan to bring new energy and as many fresh approaches to Molly’s care as I can find, while embracing the help of others—family, friends, therapists, and professional caregivers.
Helen Keller said, “Life is either a daring adventure or nothing at all.” My next journey is an adventure with purpose.
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