Lyrysa’s Smith’s sister, Molly Smith Weber, was a publishing executive with Houghton Mifflin Co. She held degrees from prestigious universities Yale and Stanford. She was an extraordinary athlete.
Most importantly, she was a beloved family member, who enjoyed a close relationship with her sister Lyrysa.
All of that changed after a freak accident during a weekend vacation in February 1995. Molly and her husband Walt traveled to Mammoth Lakes, Calif. for a skiing trip. When they checked into their hotel late the first night, neither they nor the hotel staff were aware that the room was lethally infused with toxic carbon monoxide gas from a faulty heater. They went to bed that night and were not discovered until 36 hours later. Molly’s brain was severely injured by the carbon monoxide. Her husband was dead.
Molly was rushed by helicopter to a hospital where she received hyperbaric oxygen (HBO) treatments. Because Molly had already been declared clinically brain dead, the HBO treatments were considered experimental. But her doctor soon realized HBO might give Molly a fighting chance at life.
Molly had suffered what’s called an acquired brain injury, or ABI. Unlike TBI, ABI is not caused by a blow to the head or an impact to the brain. Molly’s ABI was a global brain injury resulting from a lack of oxygen to her entire brain, with life-altering consequences.
Lyrysa writes in detail of this harrowing experience in her book, A Normal Life.
In a recent Huffington Post article, she summarizes it in a way that anyone supporting a family member or loved one with a brain injury will understand:
“After nine days in a coma, Molly emerged. But not the Molly I knew. That Molly is gone.”
Lyrysa’s writing on the subject of brain injuries is both compassionate and rigorously intelligent. By approaching the subject from the alternating viewpoints of an objective journalist and a personal advocate, Lyrysa is able to provide vital information and deep empathy at the same time. This is no easy feat for anyone personally affected by a brain injury.
We at the Brain Injury Law Center are very proud to feature her as our Teach Believe Inspire honoree for this month.
Trying to ‘Think Straight’
Lyrysa goes on to recount the feeling of watching Molly, in the days after emerging from the coma, struggle to regain her acquaintance with her own body, the outside world and the relationship between the two.
Molly was very lucky, in many ways. She woke up able to recognize her family and friends, to read and to speak — she could even type. What did not come so easily was identifying and using everyday objects. She had to re-learn how to swallow, how to walk and even how to distinguish her right hand from her left.
Molly was not the only one whose cognitive skills were impaired by the injury. Her attempts to cope with the strange new world of everyday life were a metaphor for the way that Lyrysa’s entire family found their judgment impaired, their communication challenged and their ability to plan and make decisions suddenly thrown off kilter.
Lyrysa remembers watching Molly struggle to identify an array of household items on a table in front of her.
“As I watched her then stare at those items on a table in front of us, she was almost unrecognizable to me. A queasy feeling swelled in my stomach as I dared to ask myself for the first time if I was right to have wanted so badly for her to live.”
‘Better, Then Worse, and Then, Simply Different’
A Normal Life deals powerfully with themes that arise for every family member and support network of a brain injury survivor. Themes like what “normal” really means, what constitutes a good and happy life in the face of the enormous difficulties brought on by the injury and how loved ones gain the strength to keep fighting on behalf of the survivor despite great personal sacrifice.
For Lyrysa, the sacrifices included lost friendships, the breakup of her romantic partnership and a reordering of her close-knit family. The new set of priorities in her life that centered on caring for her sister meant a seismic restructuring of her entire life and, as she learned, not every relationship can withstand that kind of change.
Throughout these immense changes, Lyrysa was faced with the daily task of mourning the loss of her big sister as she knew her, while at the same time getting to know the woman that Molly was becoming in each new day of her rehabilitation.
Previous to her injury, Molly had undergone a tremendous amount of formative and difficult experiences. She had overcome a physical disability as a young child, slogged through teenage emotional issues and was the survivor of a rape that occurred in her 20s. This was the woman that Lyrysa knew and was close to; in A Normal Life, Lyrysa frequently “flashes back” to scenes from their shared youth and early adulthood to anchor her understanding of who Molly is today against the knowledge of who she was before.
The experience through Lyrysa’s words is immediate, heart-wrenching and cathartic. It is not a book for the faint of heart. But anyone who has close experience with brain injuries will find versions of their own experience expressed in the pages of A Normal Life.
‘This Most Damaging and Mysterious of Injuries’
About a month into Molly’s rehabilitation, a social worker said one of the most valuable things Lyrysa would ever hear: that when one member of the family gets a brain injury, the entire family gets a brain injury.
This has been borne out by Lyrysa’s own experience up to this day.
As she says, “this is not a story about recovery. Molly was not recovered. She was rehabilitated.” Molly’s injury still shapes their family dynamic and much of their daily lives, with Lyrysa and her mother working as Molly’s caregivers.
Lyrysa is frank about the fact that this role as caregiver, while not always an unmitigated joy, proves to be strangely life-giving: “Molly baffles, delights, and frustrates me, and continues to inspire me with her courage.”
Lyrysa’s blog picks up where A Normal Life ends, detailing the challenges, the humor and the unexpected blessings that come with being “her sister’s keeper.”
In a recent blog post, Lyrysa writes about accompanying Molly to her 35th college reunion at Yale. For eight days, Molly’s health, safety, whereabouts, social activities, clothing and food were entirely Lyrysa’s responsibility, 24 hours a day. It was not the first time Lyrysa had traveled with Molly — they had even been to Yale together before, for previous reunions — but this time, Molly had declined noticeably, both in her physical abilities and in her social behavior. She also was less gracious about accepting help or correction from her sister.
As a result, Lyrysa was apprehensive about attending the reunion this year. And in many ways, her fears were borne out. Molly had a number of outbursts during the trip, even one or two in public at the reunion.
But, as Lyrysa writes, even these moments came attended by unexpected blessings:
“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.”
One of the hardest parts of being a brain injury caregiver is the feeling of aloneness — that you must navigate this strange new realm without guidance or partnership, especially when the closest relationships in your life have shifted as a result of the brain injury.
Lyrysa’s book and her blog provide a place where caregivers can find the companionship, guidance and fact-based insight that give them the strength to carry on. Readers of this book have left glowing reviews on Amazon, such as:
- “Any family member who has become a caregiver will relate to the smallest triumphs and the overwhelming agonies that this story relates.”
- “The experience of the Smith family is a testament to how tragedy can bring a truly close family even closer, and perhaps that is the silver lining in this story.”
- “We picked it up and couldn’t put it down, it’s a factual and educational book that reads like a great story. It’s full of lessons about life. A must read!”
‘Brain Injury Changed Everything For All of Us’
Lyrysa’s book does much to reveal the details of brain injury and rehabilitation, disclosing statistics and facts that many support networks will not learn from a doctor. She discusses certain controversial treatments that contributed to her sister’s rehabilitation, and does not flinch from the touchy issues that come up in every caregiver’s mind — even the thoughts that some find hardest to express.
“When brain injury enters your world,” she writes, “it will flip upside down everything you thought you understood about your loved one and yourself.”
At its heart, A Normal Life is a love story that shows how a brain injury can be the catalyst for a renewed bond of love, and how surrendering to life’s most traumatic changes can cause not only loss of self, but also its rebirth — not only for the survivor, but for those who love him or her the most.
The Brain Injury Law Center is overwhelmed by Lyrysa’s gracious vulnerability, and grateful to her for sharing her story with the brain injury community.
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