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.
Molly in May 2014 at Saybrook, her residential college at Yale.
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.
Molly and Karen, her roommate at Yale, at the reunion.
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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Was glad to read your update on Molly, your mom and you. You’ll be moving just down the street from us and just like your mom, you are amazing to move and fulfill the role of caregiver for Molly. I really look forward to your updates.
Thank you, Eileen. I’m looking forward to getting to know you and all my new neighbors. Mom raves about you all the time. Thank you for reading, for sharing with me and others, and for your support. It means a lot. Take care, Lyrysa
It is rewarding to feel Lyrysa’s energy for the task at hand. For too many weeks, I, the mother in this saga, have been hanging on for dear life and searching for new ideas. How much I welcome Lyrysa’s arrival. I plan to remain a very constant support and a very deep well of love and caring for Molly and for all members of Team Molly. Together we go on…and on….and on….;))
Thank you, Mom. Your support and love make all things possible–for Molly, for me, and Sara and Mary K., too. I’m proud to be a part of Team Molly and very proud to be your daughter.
Really appreciate the updates. It’s like another chapter from the book. I think it’s interesting that Molly can hold it together for others but lashes out more around family. I know this often applies to people without brain injuries. My question is– does she pick up those social cues from others? did she have hints of this before her brain injury?
Thanks, Susan, for your comments and great questions. I’m glad you like the updates. You’re exactly right that they are like “next chapters” in the book. It’s where the learning is as the odyssey continues. I believe, as do Molly’s doctors, that Molly becomes angry and harsh around her family more than with her friends and acquaintances because she uses her self-control better with those outside the family because she has reintegrated the socialization skills she learned in life. She doesn’t employ that control with family as much because most of us have more relaxed or fewer socialization issues with family. Especially for people with brain injuries, and certainly for Molly, she responds to family more spontaneously and doesn’t muster up and put forth the same level of control that she manages to present in public social situations. It is one of the most common impacts to families from their loved one with a brain injury–from CO poisoning, to Alzheimers, to TBI–the family takes the most abuse. You’re right that in a way, Susan, that Molly is responding to social cues when she is with friends and acquaintances. Also, like most of us, Molly “lets down her guard” and doesn’t use socialization skills when she’s with her family because in our lives we relax and let go when we are with family and those closest to us. This exists for all of us, and also for Molly both before and after her brain injury. Thank you, Susan, for raising these fascinating and complicated issues. They are a very important part of the story.
Thanks so much for the update. Praying that God will continue to give all of you the strength as you go through this with Molly.. What a loving family you are and I am mighty proud to be in this family. Love and Hugs!
Thanks so much, Nan, for your comments and good wishes. We certainly know in our big extended family that strength comes from supporting and loving each other. Thank you for being a part of it all. It means so much.
I have just finished reading your book, on loan from my mother, Beverly Brock Hatch, who lives in Mount Olive, N.C. She is your mothers first cousin. My mom told me of your moms visit last year & the reunion the cousins had. I am now retried from teaching school, so maybe if they do it again, I can attend with her & meet some relatives.
I remember us getting Christmas cards every year from your mom with interesting letters about events that took place every year with your family. I also remember hearing the horrible news of this tragedy with Molly. I am sorry this had to happen to you & your family. I am also amazed at how all of you have dealt with it. Through your book, it is easy to see the love you have for each other & strength it takes to carry through. Not many people would be able to do what your family has done, especially you and your mom. I greatly admire & praise you for it. Your continued work in this field surely has benefited many & will continue to do so.
Thanks for sharing yourself and your family with others.
Maybe some day, our paths will cross.
Terrie
Thank you so much, Terrie, for your thoughtful and beautiful comments. I’m delighted to know you better as a part of our wonderful family. I’m working hard to get out the important messages in the book to as many people as possible. I am a passionate advocate for teaching the dangers of carbon monoxide poisoning, raising awareness about brain injury, and creating more compassion for people with brain injuries and for their families. Please continue to spread the word in your community. Just send people to my website. I am very grateful for your interest and support. Thanks, Cousin! Best wishes to you, Lyrysa
Lyrysa: Where in Denver will you be living? I hope we’ll see each other sometime after you’ve settled in.
Your experience with your sister reminds me of a conversation we had with one of my children’s teachers in elementary school years ago. We were surprised to learn of the contrast between our daughter’s good behavior at school when we experienced more difficulties at home. It was explained to us that kids often do expend so much energy maintaining a more pleasant attitude in public, they often have to let down with family. We see a similar pattern with my father in law, who is reportedly very pleasant in his assisted living facility, but can be more emotionally labile with family on visits.
Hi Brad,
It’s great to hear from you. Thank you so much. I’ll be arriving in Denver in early August and will be living at my sister’s house (a few doors down from my mother’s house). I’ll be looking to find an apartment close to where they live to move into as quickly as possible. We will definitely be in touch once I catch my breath.
It’s so interesting about the shifts in your daughter’s behavior. I’ve been fascinated to read new research that discusses the similarities between the child or teenager brain and a person with brain injury, which both involve the frontal lobe part of the brain. This is where the majority of my sister’s difficult behavior comes from and it’s also why particularly teenagers can be “trying” at times. Many behaviors are similar between them. Behavior shifts in your daughter, my sister, and even your father-in-law, all have to do with their developing or injured or declining frontal lobe section of their brains. Even though all of us do the “letting down” around family, those with frontal lobes that are not quite developed or are injured or are declining often don’t have the judgment or ability to maintain good or kind behavior once they are in a “letting down” environment. Incredible stuff. And I’m learning more all the time.
You are an Angel Lyrysa. And you will be rewarded…
Thank you, Terri, for your kindness. My reward is great people like you in my life and your help to spread awareness of CO poisoning and brain injury. Thanks so much.
Dear Lyrysa,
Well its been a couple weeks since you and I talked in person. I’ve been vacationing in the lovely Northeast Kingdom of Vermont for the last week and will be here for several more days. I’m staying in a beautiful, remote cabin nestled in the pines more than a half mile away from the closest neighbor. There’s a spring fed swimming pond outside the back door where I swim and cool off every day . In this peaceful setting on these picture perfect sunny days I’ve had the luxury of long walks, waterfall hikes, hours of uninterrupted reading, lazy days and insightful epiphanies. You have been occupying my daily thoughts ever since I finished reading “A Normal Life” in April on Cape Cod.
Lyrysa, I admire you for all the sacrifices you have made and will be making in the future. You have unselfishly accepted moving across the country to devote your future to supervising Molly’s care. I applaud you for this decision when its so apparent that today’s society tends to ask first “What’s in it for me?” I know that you are a special, very gifted lady and this path you’ve chosen will,ultimately, bring you joy and satisfaction. I’m confident that you are wise enough to remember to nurture yourself with your yoga, meditation, running, massage and, yes, alone time with a glass of good wine. Our lives are journeys with many different roads and paths and ultimately the end of a successful journey depends on the paths we choose. You’re gonna’ do all right Lady!!
I’m honored to have met and befriended you. You have reaffirmed my belief in humanity. Thank you for that. Take good care, Lovely Lady Lyrysa. I’ll stay in touch.
Love and Hugs, Phyllis
Thank you so much, Phyllis. Your trip to Vermont sounds sublime. Your comments about my grand adventure ahead are incredibly kind. Believe me, the honor is mine to know you and call you my good friend. No matter where I am that will be true.
Love to you, Lyrysa
Thanks Eunice for your suggestion. Please keep reading and sharing. Thank you.
It was so great to see Molly at the reunion this summer. Thank you Lyrysa for bringing her. And it was great to meet you and get to know you and your journey. I’m so glad I stumbled on this beautiful post about the trip and the experience for Molly.
Hello Anne, Thank you for all the kindness and friendship you shared with Molly at the reunion. Have you signed up with your email on my website? That will make it even easier to stay in touch and you will get a quick email every time I put up a new blog post. I have a lot to share in the upcoming weeks. So much has been going on. Lots of good blog posts to come. Thanks Anne. You’re an inspiration!