We recently spoke with this month’s Teach Believe Inspire honoree, Lyrysa Smith. Lyrysa is the author of A Normal Life, a book in which she uses her journalistic experience and her own heartfelt struggles to document the effect her sister’s brain injury had on the entire family.
‘Molly Has Helped All of Us Become Better People’
When Molly woke up from her coma, were you prepared for the possibility of a brain injury?
Not at first. We were told first she wouldn’t come out of her coma, and if she did, she would be in a vegetative state forever. Once she very slowly came out of a coma, she progressed very quickly both mentally and physically. However, we were told the damage to her brain tissue was extensive. We still believed for a longer time (several weeks) that she would get her full brain function back, as if her injured brain would heal like a broken leg.
When your sister was diagnosed with anoxic brain injury, she was treated with a somewhat controversial procedure. Do you think the hyperbaric oxygen treatment saved your sister’s life?
I think my family and I will always believe that HBO (hyperbaric oxygen) saved my sister’s life, especially in the beginning. Then other things continued to save her life (not a one-step process it turns out, at least not with brain injury). Importantly, the first physician she encountered—the brave and bold Dr. Takkin Lo—was the first physician to encounter Molly, at Loma Linda University Medical Center and he initiated the HBO treatments. He saw Molly’s dogged survival instinct even as she first arrived in the ER unconscious and believed, against objections from other doctors, that he could help her with HBO. It went against official and established protocols and he did it anyway. He said, “What do we have to lose?”
What can people do to protect themselves from carbon monoxide poisoning?
Primarily, people need to be aware and believe that CO can happen anywhere at any time to anyone. We must take care of our fuel-burning systems and appliances, know how to properly use them and maintain them and then, because not everyone or every place is doing these steps, we must know the symptoms of CO poisoning. We must have a CO detector in every location where we sleep, even overnight at a friend’s house. I advocate a small, battery-operated CO detector, less than $30 from your local hardware store. Mine is the size of two decks of cards. I never leave home for even one night without mine. (Mine has also gone off once in a hotel room.)
Learn more about protection against carbon monoxide poisoning at Lyrysa’s website.
How did you and your mother decide to become Molly’s full-time caregivers?
Mom made the choice to care for Molly in her home when she entered outpatient therapy—it simply made sense. Molly was doing pretty well and Mom was able to provide a loving, stimulating, healthy, safe and happy environment for Molly. Mom looked into some residential homes but felt that Molly would progress more if she lived with her at that time.
As Molly got better, she wanted to drive and to live in her own place near my mom, which she did successfully for years, but always with close supervision by my mom. Since I was always close to Molly and I was the daughter with much more flexibility than my other two sisters, I was made the next caregiver in line if anything should happen to my mom.
What we didn’t anticipate was Molly’s difficult decline over the past few years simultaneously occurring and further exacerbating my mother’s caregiver burnout after nearly 19 years of heroic caregiving. Thus, my arriving in Colorado to be Molly’s primary caregiver, relieve my Mom and help restore their relationship to a loving mother and grateful daughter.
What should family members of brain injury survivors know if they are deciding to become primary caregivers?
With TBI, ABI (Molly’s brain injury classification) and all other brain disorders, families should realize that no two brains are ever alike; therefore, no two brain injuries or outcomes can be compared. What we would give for a textbook or a wall chart! Brain injury is utterly unique for each individual and his or her family.
Treatment is a crap shoot. You try everything. Over and over again. What works on Monday won’t work on Wednesday, and might work a little bit or differently on Saturday.
It takes incredible creativity, determination, perseverance and devoted dedication from a family and caregivers. It takes knowledge of the person with the brain injury and it takes tremendous love. A family truly helps because we have love built in and know the patient better than anyone else. But committed therapists and medical staff can be fantastic help and caregivers, too.
The danger is that brain injury creates such mind-boggling difficulties and unpredictable, consuming situations and demanding, overwhelming emotional struggles. So caregiving burnout is intense, debilitating and frequent. Caring for someone with a brain injury is like no other caregiving. It is the hardest caregiving of all.
Why did you decide to write A Normal Life?
I’m a journalist. I tell stories. I wanted to document and share what happened to my sister, to me and to my entire family. For us, there is life pre-brain injury and life post-brain injury. The characters and world we live in are the same in name only; the world, the lives, the people, the relationships are all forever changed. I knew in my heart and soul that this story was important and I believed if I could share it, it could help others. I’ve always believed in advocacy journalism.
As a writer, was it more difficult to write your memoir than other assignments you’ve had, given the personal nature of the project?
It is the most difficult writing I’ve ever done. I’m used to 24-hour journalism and feature story articles. This book was a very different animal. I was also used to writing a story or article as a detached, perceptive, objective observer. I needed to step away from writing the book often to recover and regain perspective.
I started writing the book about five years before I actually wrote it. I discovered I just couldn’t do it then. It was like standing too close to an impressionist painting. It’s just blotches of paint with no distinguishable form. I needed time to digest more.
However, I did begin refining my journal notes, taking notes from interviews with family members and medical staff people who were involved. I did interviews with experts and began intense research into brain science, HBO, CO poisoning, brain injuries, etc. Then later, I was able to piece together the parts of the story and to write.
I wrote six different endings to my book. As soon as I would finish one ending, something else would happen that needed to be told. Along the way, friends would ask if writing the book was therapeutic. I said, “No, it’s cathartic.”
Your blog post about the most recent Yale trip is a great read. Was it Molly’s idea to attend these reunions? Despite the difficulties, do you think your sister benefits from social events like that? (In other words, are those activities that TBI patients should seek out?)
Since Molly’s injury in 1995, she was always interested in doing the stuff she used to do before her injury (work and career, reunions, travel, sports, pets). Whatever she wanted to try to do, we worked hard to make sure she got opportunities to try to do them. Over time, she and we have learned what she could and could not do, and how to do what she can and still keep her safe.
Attending reunions was a way of connecting with an important and significant part of her past, as she received friendship and support from her Yale classmates. I also believed it helped her brain to connect to those people and to places and memories. This is true for many of the activities she has engaged in since her brain injury.
How does your family try to keep Molly going when she suffers setbacks or gets frustrated?
We focus on loving her and reminding ourselves that it is her brain injury causing the problems. Almost always, with Molly and her brain injury (and this is somewhat typical for people with brain injuries, but especially for Molly) if she is feeling frustrated, sad, demoralized, confused or fearful, she gets very angry and sometimes just mean. If she is having a hard time doing a small task like tying a shoe, she will throw the shoe across the room and say “I hate this shoe.” (It’s one way I know she needs help with something. She won’t ask for help; she’ll just start yelling that she hates something.)
Often it’s best to try to solve the problem, explain it simply to her, and then back off. In a matter of hours or the next day, Molly’s anger is completely dissolved and she doesn’t even necessarily remember it at all. Meanwhile, we are still stinging and raw from her painful, angry outburst. This is when we have to remind ourselves that our hurt feelings are real, but that it’s Molly’s brain injury; it is not personal. It is still hard to not to take it personally when your big sister is really bitter and really angry—directly at me! But in time, I let go and go on, just as she has done so much more easily.
One other thing I do is I use myself as an example—sometimes I have a hard time tying my shoe. I remind her in humorous ways that little difficulties happen to all of us and she often appreciates knowing that I also get frustrated or have hurt feelings over something, but I solve the problem and laugh at myself. Molly is still quick to laugh and she loves to laugh at me and my foibles.
Since Molly recently moved to a home for people with brain injuries, she has fewer anger outbursts with me and her other family members. She sees us as family, not as caregivers. Interestingly, she doesn’t get angry and have outbursts with the staff members, either. I believe that Molly is relieved and happy to be in a place where she is cared for and safe and healthy.
[socialObu shorturl=”http://ow.ly/QbHwS”]Our July, Teach Believe Inspire recipient Lyrysa Smith gives an incredibly insightful interview. [/socialObu]
What advice do you have for families who have recently had a member sustain a brain injury? Is there something you had to learn yourself that you wish you would have known?
Families and loved ones need to know their loved one with the brain injury is most likely to have a different personality and therefore may be a different person. Therefore, their relationship will change. I encourage others to learn to love anew, appreciating the person who used to be and accepting the new person in their family. The person with a brain injury is valuable, challenging and vitally important in life, to help us learn, grow and be compassionate and grateful. In our family, Molly has helped all of us to become better people.
You work very hard to not only care for your sister but to tell her story. What keeps you going when you start to feel burnt out?
Awareness of carbon monoxide is so important and the level of ignorance, even still in our country, is amazing. People will put their barbecue grill in their living room or turn on their oven when they lose heat; they’ll sit in their car without knowing the car’s tailpipe is in a snowbank. There is no federal statute for CO detectors. And there are still no federal laws that say every hospital room, hotel room and residence must have CO detectors.
That’s why I love telling my sister’s story. Her former life went out the window with the oxygen. And the ripple effect on not just her family, but her friends, people at Yale, the people who operated the hotel—there were so many far-reaching consequences of this one accident.
There are so many brain injuries that are unavoidable. You drive really safely, but there’s always some jerk on the road. You love playing football, but the injuries are going to add up. Carbon monoxide is an utterly avoidable brain injury. It’s the brain injury that doesn’t have to happen!