On July 2, 2005, Betty Santohigashi enjoyed a day that those of us fortunate enough to live in San Diego, take for granted. She joined a few friends at La Jolla Shores for her first surf lesson. A definitive break from her busy professional life as an attorney, a summer Saturday on the waves was a much needed respite from her extremely demanding schedule. Betty got up on her board a few times and was thrilled with her accomplishment. The only thing clouding that day was an unrelenting headache that pounded in her head as rhythmically as the waves hitting the La Jolla shore and didn’t seem to be relieved by the Tylenol she kept taking.
A few days later, Betty visited La Jolla again but this time by ambulance on her way to Scripps Memorial Hospital. She had experienced a CVA (cerebrovascular accident), a hemorrhagic stroke that caused a bleed in her brain and resulted in spastic hemiplegia – paralysis of one side of her body – and cognitive problems involving memory and planning functions. Betty spent a few weeks in the hospital in La Jolla and was then moved to the brain injury rehabilitation center at Scripps Hospital in Encinitas.
Betty’s journey of recovery is documented in her book Islands of Calm in the Chaos: Thoughts on Recovery from Brain Injury and Stroke. A collection of personal essays, Betty’s book began as short pieces she wrote for her Expressive Writing class at the Acquired Brain Injury program at Mesa College. “As the pieces grew in number, scope and (as I would like to think) wisdom and insight, I developed the idea that they might be a useful collection for other survivors, their families, and the professionals who help both” (page 10).
The book gives the reader a deeply personal insight into what it is like to experience a brain injury that has a profound impact on the survivor and their family’s lives. The struggles of coping with the immense changes in day to day activities due to the results of a stroke are poignantly described in details that take the reader into the world of brain injury recovery and rehabilitation. Betty’s sense of humor is prominent throughout the book as she writes about her dealings with doctors, hospitals, family, and how the outside world interacts with a brain injury survivor.
Islands of Calm in the Chaos was written under the pseudonym Billie Jo Waters. Betty explains why she chose to publish under a different name:
“Even though it has been five years now since my bleed, I am very much in the middle of my recovery. That was even more the case when I was writing the book. I reveal so much of my private self in the book, and I don’t know where I will end up in terms of my recovery… After talking it over with a few people, it just seemed the best way to go at the time. Now that the book is out, most people who know me who read it can figure it out anyway. I…have no problem using my real name… Since I’m trying to get the world to have a better understanding of what it’s like to live in my shoes, I might as well let the world know who I am.
I picked the name (for the book) by using the initials of my maiden name and using the first name of a woman who was a wonderful friend and mentor to me when I was in my early 20’s. The last name is from an ancestor on my mother’s side, Dr. David Tarwater. Also, bodies of water of all kinds (lakes, rivers, and the ocean) have always been important to me.”
Through very personal journal entries, Betty openly describes the struggles that she experienced during recovery. Her insightful details illustrate the difficulties that a brain injury survivor must weather that are unique to their specific kind of injury. In “What’s My Arm Doing Over There Anyway?”, Betty examines her strange experience caused by her brain’s alteration of proprioception, the sense where the various parts of the body are located in relation to each other.
“Without sensation on my left side, weird things happen. For example, sometimes I feel like my arm is somewhere when it’s really not there. I think, perhaps, it happens like this. My brain is getting no input from my sense of touch about where my arm is, so it calls on any other available senses to give it a clue. When my eyes see my arm on the table, even though it can’t feel it there, the visual clue allows my brain to deduce that my arm is on the table so I ‘feel’ like it is on the table even though I can’t actually feel it on the table or anywhere at all.
Why do I think this is what’s happening? Because, sometimes the visual clue is wrong, and that’s when things get pretty weird. Let me give you an illustration.
About ten months after my brain bleed, I was having lunch with my daughter, Katie, and her former violin teacher, Jill. We were sitting in a restaurant booth, with Katie beside me and Jill across from us. Katie had just come home from college for the summer, so I wasn’t used to having her around at meals. Throughout the entire lunch, I had a hard time concentrating on the conversation, because I was distracted by an odd sensation that my arm was out in space moving around on its own.
I eventually realized that what was happening was that every time Katie lifted her arm up above the table into my visual field to gesture in conversation, I felt like it was my arm moving and gesturing, even though my arm was actually under the table in my lap.
So, here’s a benefit of life after brain injury. There’s less need to ponder Zen koans because suddenly your whole life becomes a Zen koan. If my daughter’s arm moves in space and I feel it, who actually moves and who actually feels it?” (Page 43).
In an interview when asked what she felt is the number one thing that she would tell brain injury providers that she feels is important for them to know when dealing with survivors, Betty responded:
“It’s hard to limit it to just one, so here are three, I guess in order of importance.
1. Communicate with us and touch us with kindness, caring and respect, focusing on what you are doing at the time. Please don’t be somewhere else mentally when my safety, security, or health depends on you because I’ll sense it and this will frighten me or make me uncomfortable.
2. Earn my trust and guard it well. The professionals, who have consistently done number one, have always accomplished this with me.
3. Believe in neuroplasticity (the ability of the human brain to change as a result of one’s experience, ed. note), and don’t set limits on what I can accomplish with the right amount of time and practice.”
Betty was also asked what she would say to the public, who are unaware of how to interact with brain injury survivors, regarding the best strategy for connecting with someone who is recovering from a brain injury.
“Don’t be afraid of us and just take it slow and easy in terms of moving in and getting to know us. Smiles are wonderful ice-breakers! Be genuine, caring, and honest, but not overly intrusive. For example, it’s not your right to ask me the details of my medical condition when I’ve just met you.”
Betty’s tough, funny, and insightful voice in her book Islands of Calm in the Chaos is an inspiration to anyone struggling with the effects of a brain injury. Purposely written in a format that is conducive to readers who may be dealing with cognitive difficulties, Islands of Calm is a unique gift not only to brain injury survivor and members of their families, but to any reader.
Betty ends her book with three things she has identified that help her over the rough spots and keep her from giving up:
– Focus on the positive
– Stay in the now
– Enjoy the small things
This is a message that is even more powerful coming from someone who has survived a brain injury and a reminder that our lives can change in an instant. We can be surfing one day and struggling to tie our shoes the next.
I asked Betty about her recovery since she published the book in 2009: “I’m still in the middle of my recovery even though I’m five years out. I’ve made tremendous gains from where I started (completely paralyzed on one side and with no memory of anything that happened to me for over a month, but I still have many things to work on. I currently use a walker or power wheelchair for mobility except at home with walls or counters nearby for support, or unless I’m walking with a therapist who is cueing me and spotting me. As long as I keep challenging myself appropriately and have the kind of support needed, I see no limits on what I can accomplish in terms of my mobility or my cognitive or emotional recovery, which have both improved since starting at ABI” (the Acquired Brain Injury program at Mesa College, ed. note).
Islands of Calm in the Chaos: Thoughts on Recovery from Brain Injury and Stroke by Betty Santohigashi (writing under the name Billie Joe Waters) is available at www.lulu.com where you can search for it by author or title. She also has copies that are available for purchase directly from Betty. She brings them to ABI and SDBIF meetings.
Betty lives in San Diego with her husband and has one daughter, who is now living in the Los Angeles area attending medical school.