ABI? TBI? Let’s Demonstrate Awareness for ALL Brain Injuries

ABI TBI brain graffiti

Even if you’re on the right track, you’ll get run over if you just sit there.  ~ Will Rogers

March was Brain Injury Awareness month, which it is every year. Unfortunately, very few people know that. And even if they did and went looking for more information, they’d likely learn about only one type of brain injury rather than being made “aware” of all brain injuries. It’s a common and regrettable language problem in the realm of brain injury.

Brain Injury Breakdown

TBI does not equal brain injury.

TBI is not synonymous with brain injury.

TBI is not the only brain injury.

Traumatic brain injury (TBI) is one type of acquired brain injury (ABI).

And together, the month of March, and year round, should be about raising awareness about ABI and TBI – all brain injuries.

Brain Injury Terminology

From the Brain Injury Association of America and Brain Injury Network:

Traumatic Brain Injury (TBI) is defined as an injury to the brain (after birth) that causes an alteration in brain function or other evidence of brain pathology and was caused by an external force (e.g., a bump, blow, or jolt to the head).

Acquired Brain Injury 
(ABI) is any injury to the brain (after birth) that causes an alteration in brain function or other evidence of brain pathology and was not hereditary or related to a congenital defect or degenerative disease, such as Alzheimer’s or Parkinson’s diseases.

By definition, ABI includes TBIs. TBI is a subset of ABI.

Examples of TBI are easy to grasp. Causes of TBI are better known, thankfully, due to the increasing attention to TBI – which is great! Wide discussions are now occurring about concussions; about sports-related head injuries, such as in football, soccer, and hockey; and about U.S. veterans returning from deployments with various TBIs. TBI also occurs from falls, motor vehicle crashes, and the head being struck by an object.

Examples of ABI are not as tangible, but they’re no less dangerous, and in many cases, are more damaging. ABI causes include TBI; and also, aneurism or stroke; tumor; infectious disease; toxic exposure; electric shock; lightning strike; and oxygen deprivation, which may occur from near drowning, substance abuse or overdose, and carbon monoxide poisoning.

The difficulty arises because there is inconsistency in the understanding and use of “TBI,” “ABI,” and “brain injury” in the brain science field, the brain injury community, and now in the public vernacular, and this causes problems.

ABI, TBI – What’s In A Name?

ABI TBI brain hemispheres

Why does this labeling and language matter? Because it creates confusion and sometimes results in unintentional discrimination against people with brain injuries that are not TBI. People with nontraumatic ABI are often left out of research, resources, and consideration. Discrimination in any form is not good and ought to be corrected, if possible, especially when it may be as simple as a misunderstanding about terminology.

It will benefit everyone to use these complex terms accurately so that they can be used consistently across all medical, government, legal, public, and community venues. It’s worth noting that governments, scientists, and brain injury organizations in many other countries (e.g., Canada, the United Kingdom, Australia) routinely refer to all brain injuries as ABI, and list TBI as one type of ABI.

Brain Injury Un-Awareness

Even though “TBI “and “brain injury” are not interchangeable terms, I hear it and read it almost every day. From news media to social media, from the National Institutes of Health to the Centers for Disease Control and Prevention (CDC), the focus and information are almost entirely about TBI, and precious little, if any, about ABI.

I don’t believe people deliberately want to exclude those with other types of brain injury. I just don’t think they realize that not all brain injuries are TBI, and that brain injury should not be called TBI unless one means only TBI and no other type of brain injury.

For instance, a librarian on the news was describing a program at the library to assist people with a variety of disabilities and cognitive challenges to read books and enjoy the library. She stated they work with “people with traumatic brain injuries” in the program. Did she mean to exclude my sister who has a severe ABI from accidental carbon monoxide poisoning? Did she mean to exclude everyone who has an ABI but not a TBI? I don’t think she did.

When the U.S. Congress mandated the CDC to address, research, and provide information and statistics about TBI, did Congress mean to eliminate all research and studies that might include ABI? I hope not. But it’s possible that like so many others, the people in Congress who wrote the mandate to the CDC did not realize that “TBI” does not equal “brain injury.” When Congress stipulated TBI, it resulted in excluding people with nontraumatic ABI, who will, therefore, not be recognized nor benefit from the CDC’s work.

When people describe brain injury as TBI, a whole group of people with brain injuries classified as ABI are pushed aside and pretty much ignored. As a result, funding, research, programs, and services are most often focused on and provided to those with TBI and not to those with ABI, despite their very serious brain injuries.

ABI TBI brain injury does not discriminate

Discrimination and Brain Injury

Although recent statistics about both ABI and TBI are lacking, the population of people with nontraumatic ABI is large, only a bit smaller than the group of people with TBI. But without research and data coming from places like the CDC about ABI (which could include TBI), there is less knowledge about ABI and fewer resources and less assistance available for people with ABI. I’m glad people with TBI are getting attention, funding, research, and services. It would be a vital advancement if ABI and TBI were not separated and could be treated alike.

Making resources available to people with ABI (which includes TBI) is consequential, too. As my sister’s caregiver, I have experienced her being excluded from research, resources, and services because she does not have TBI, even though her ABI requires a great deal of help and care. (My sister and her husband were in a hotel room with a faulty heater. He died of carbon monoxide poisoning, while my sister was in a coma for weeks and now has a severe, global brain injury and disability.)

For me, the critical characteristic of brain injury is not how the injury occurred, whether it is ABI or TBI, but instead the impact on the person and her life from the injury itself.

Illuminate All Brain Injuries

I want to clarify this language problem to help balance funding, research, resources, services, and attention for people with ABI and TBI – all brain injuries. Why should we distinguish between ABI and TBI at all? Why shouldn’t science, medicine, research, brain injury organizations, and the media be about ABI (which includes TBI)?

Let’s gather all brain injuries together by simply using the umbrella term ABI for all.

It’s my hope going forward that Congress, the CDC, science and medicine, and brain injury organizations – as well as people everywhere – can do more to help all people with all types of brain injuries. Then, perhaps, the month of March, and every day, will truly be about awareness of all brain injuries.


Have you heard the terms ABI or TBI used correctly or incorrectly or inclusively or exclusively? Please join the conversation by leaving a comment below so we can all learn together. Thank you!

Also, help spread the word by sharing this post with family and friends and on social media using the links below. Thanks again.

Photo credits from top: Chris Blakeley via Visualhunt.com, Internet Archive Book Images, and BIAA.


Marking Time with Brain Injury in Winter

winter bare tree

Winter is a season of recovery and preparation.   — Paul Theroux

I take pause this time of year.

Not just because it’s February and winter is long. Not just because it’s cold outside and the days are short. Many of us are affected by winter’s muted tones of gray and brown and bare trees. I’ve learned to find beauty and wonder in the starkness and toughness of winter.

I think many of us find winter a time for reflection. I certainly do.

It’s 22 years this month since a carbon monoxide poisoning accident left my older sister, Molly, with a severe brain injury and killed her husband, Walt. It’s mind-boggling to realize more than two decades have passed. I know that Walt’s family and my family mark this time of year in personal ways.


“Anniversaries” we observe each year, such as birthdays and holidays. Then some of us have “markers.” These are the events – some sad, some joyful – that create “pre-” and “post-” descriptions, and split the before and after in our lives. Markers also designate how our thoughts are shaped, many of the choices we make, and how we remember.

For Walt’s family and mine, our lives were cleaved in February 1995 – before the carbon monoxide poisoning and after. Before Molly’s brain injury and after. When Walt was alive, and after.

When I encounter other people and their families who’ve been impacted by brain injury, a pattern emerges; lives ruptured by brain injury and forever changed. With the uniqueness of each person’s brain injury and its imprint of a shift in personality, the divide is especially distinct. Add the challenge of ongoing caregiving for a loved one with a brain injury and the marker is monumental. My family and others have the powerful marker of brain injury in our timelines, and feel it every day.

Caregiving and Finding My Way

I’ve made countless mistakes in my post-brain injury existence – in my career, in my role as caregiver to my sister, and as a family member who tries to communicate and be helpful in the right ways. I know many family caregivers struggle and experience doubt. I question my abilities – and I’m the lucky caregiver with tremendous family support. And yet, my mistakes and misunderstandings go on—even with my heightened awareness and caution to act carefully in a tangled, far-reaching, brain-injury world.

forest thicket in winter

When I pause and find some perspective, I realize most caregivers to people with brain injuries and their families likely stumble through these thickets, too. It’s hard. I am reminded of why a caregiver needs persistence, patience, and reasons to push through.

I’ve had to let go, learn as best I can, mess up again, get lost, and let go and learn some more. I’m trying to not let my blunders take up too much space in my head and to not let fear settle in my bones, like an icy chill. I realize that my work as a writer and a caregiver is both common and vital. And that’s why I try to exchange stories and ideas—to gain knowledge from others.

So, especially in early February, I mark time. I try to be mindful, evaluate, and focus. I am trying to be open and to learn, to be productive and create relevance. These are difficult, good goals. But for me to appropriate winter with these efforts feels energizing and hopeful, a way to carry me through to springtime.

icy branch in winter

Day to day, it matters when Molly laughs, when I help someone understand a little bit about brain injury, when I teach a stranger about carbon monoxide poisoning. When I write an effective sentence, when I sit with my vulnerabilities, when I share caregiving challenges and joys with those who know caregiving and those who don’t. It matters when I can support others and also feel supported. When I can be curious, move with purpose, walk with love, and even shiver in the cold. I take pause, recognize aliveness in my breath, and feel grateful. Even for winter.

Take care,


P.S. I’d love to hear about your winter coping strategies – with brain injury, caregiving, or other endeavors. Please leave a comment below and share this blog post with your family and friends so we can expand this conversation and continue to raise awareness and spread compassion—and warmth!  Thank you.



Caregiving for Brain Injury – Making Progress

Success is forward progress on a worthwhile dream.   

— bumper sticker on a carpenter’s van

Necessary tools for carpentry and caregiving

Leaning In on Brain Injury

Two and a half years ago I moved to Colorado from New York and began this chapter of my life as Molly’s caregiver. It’s not what I expected and it’s more consuming than I’d ever imagined. It’s hard. I haven’t found ease, but I’m gaining experience and taking it all one day at a time. I am also very clear about how fortunate I am. I’m extremely grateful for my good life and the opportunity I have to be a caregiver in my family.

I’ve discovered I’m pretty good at it. Caregiving, especially to a loved one with a brain injury, requires special tools: energy, motivation, lots of organizing, energy, resourcefulness, empathy, sacrifice, positivity, and energy. Hey! I’m just the gal for this job! Ha-ha!

But seriously, I am practicing with these tools and gaining new skills. Yet, I’m aware already that I will need new tools going forward. I have much to learn as I attempt to keep up with the ever-shifting nature of Molly’s brain injury. For now, I’m glad to be making headway in helping her to have a happy life.

Caregiving can be confounding and gratifying. The rewards are quiet and real.

Here now, an update about Molly, family, and caregiving. Next time, what caregiving, career ideas, and worthwhile dreams might look like for me.

Successes in Coping with Brain Injury

I came to Denver to be Molly’s primary caregiver and to relieve my mother of that job, which she’d done for almost two decades. Check, and check.

Mom is blooming, thriving, even, and enjoying her life fully and in lots of new ways. I jumped in to being Molly’s full-time caregiver right away, but Mom took time away from her new life to instruct me through the complex paperwork, finances, and logistics of being the manager of Molly’s world. And now, Mom keeps busy with other activities; from ballroom dancing to her Rotary group and Pilates classes. She has time to enjoy music, theater, opera, art museums, and films. She has a nice gentleman companion and many friends in Denver, and she loves to travel to visit other friends and experience new places. And when Mom spends time with Molly these days, it’s a sweet mother-daughter relationship again, and that’s a heartwarming outcome.

Caregiving includes quality family time

Molly and Mom are Broncos fans together.

Moving Molly

The biggest change I initiated as Molly’s caregiver is that she now lives in a wonderful home for people with brain injuries. I could never have dreamed that moving her out of her house would result in so many positive changes for her. It’s not always easy and it’s not perfect, but the benefits to Molly are remarkable.

Molly lives in a great neighborhood south of Denver in a modern, bright, spacious home where each of the five residents has a private bedroom and shares large common spaces. The home is staffed 24/7 with caring, trained professionals who prepare meals, help with house chores, monitor residents’ health, plan birthday parties, provide companionship, and offer a range of activities each week.

Molly enjoys her housemates, usually, and likes doing some of the activities with them. Molly also complains and chooses not to participate sometimes. She has a counselor who is working with her to get along better with others. When it’s Molly’s turn to choose an activity, she loves outings to the library (she’s become a voracious reader) and, of course, to Starbucks – her favorite home-away-from-home any time, any day.

Today, Molly is in a better place than when she lived alone in her house where she increasingly became less independent and needed more assistance with everyday tasks. She is safer, better socialized, and does not isolate herself now. She is also stronger, healthier, and walking better.

Best of all, her attitude towards me and all of her family members has turned arouCaregiving to Molly can be funnd. I spend a day or two a week with Molly and speak to her by telephone nearly every day and her disposition is cheerful, not angry, as she was almost all the time before. She is grateful, not grouchy and mean. She can even be empathetic, occasionally. I’ll often try to prompt this from her when we’re talking because her conversation is limited and on the surface only. Still, she’ll observe I’m wearing the earrings she gave me or see that I bought her favorite hand lotion or realize I mended the hole in her sock, and she’ll surprise me with a kind comment or a “thank you.”

These are qualities we rarely saw from Molly in the past few years before she moved. And Molly is delighted and encouraged when she receives pleasant reactions from others—family and strangers alike. When she tells the barista how nice her hair looks, Molly beams when the barista stops and smiles to say thanks. Molly even enjoys laughing with young children these days and seems to connect with their wonder of the world.

The Value of Family Caregiving

Another benefit for me and my family with my being Molly’s caregiver is that for the first time in decades, my mother and all four of her daughters – Molly, me, Sara, and Mary K. Family caregiving – live in the same state. Mary K. and her family moved from Omaha and purchased Molly’s house after she moved out, so they live just down the street from my mother. I bought a small condo around the corner, just a short walk away. And Sara and her family still live in Glenwood Springs, one of Colorado’s nicest mountain towns.

Being Molly’s caregiver is full-time work, as most caregivers well know. Yet, the caring I do for Molly and other family members, too, is satisfying and joyful to me. It’s my priority. And with a salary from Molly’s trust, I’m in a position to make the time to do the best I can. I know I’m a lucky caregiver to have these advantages. In addition to caring for Molly, I’m able to do other related tasks for my family. For example, I’ve done lots of house repairs, packing boxes, and moving furniture. (I did 11 moves in 17 months of either myself (four moves) or a family member.) I also care for my family members when they need a helping hand, and when they travel, I care for their pets (our four-legged family members).

My family members express their gratitude generously and I’m glad to be helpful. I’m also benefitting by learning to be a more creative problem-solver and more compassionate — tools I will need more and more going forward.


Share Your Thoughts

We can learn a lot from each other. If you have suggestions, ideas, or questions about caregiving or helping someone who has a brain injury, please share them in the comments below.

Also, sign up on my website with your email, and I’ll send you the first chapter of my book to read. Meanwhile, please check out my easy-to-read blog post about carbon monoxide. It’s a quick primer about how carbon monoxide occurs and how to protect yourself and loved ones from carbon monoxide poisoning. Thank you!

Take care,


P.S. Do you know someone who might benefit from or be interested in this openhearted conversation about brain injury and caregiving? Please share this blog post using the social media links below or forward it via email. The more voices, the better. Thanks again.


A Reason to Smile: Even with Brain Injury and Hard Changes

It’s tough to make predictions, especially about the future.    ~ Yogi Berra


Hello. It’s me.

Thank you for reading this blog. I haven’t posted here in a long, long time, and I have catching up to do. One good way to cover a lot of ground with simplicity is a list.

1. Gratitude

I am grateful to all of you who read my emails and blog posts. More to come! I really appreciate your participation and support.

2. Apologies

I am so sorry for not being in touch with you recently. It’s been frustrating to be away from writing emails and blog posts more frequently than I’ve been able to. I intend to do better and I’m planning to share new information and developments, plus plenty of good news and positive stuff, too.

3. Commitment

I aim to make amends: I’ll provide a bit of worthwhile reading regularly and, hopefully, add a few useful thoughts and ideas to the mix. I want to reconnect and nurture our conversation. We have lots to share and learn from each other. It matters to me.

4. Good News

At the end of July, I was honored by the Brain Injury Law Center as their “Teach Believe Inspire” award recipient. I was selected for this award because of my book, A Normal Life, about my older sister Molly’s brain injury from carbon monoxide poisoning and its impact on her and our family, and for my presentations and other efforts to raise awareness about brain injury and CO poisoning. The Brain Injury Law Center posted a short article and Q&A on their website. You can also use this link to take a look.

Version 2

Me and Molly together with Mom at Christmas time.


5. Circumstances

I’ve had big changes and all kinds of new challenges demand my energy and attention over the past few months. I try to focus on just doing the next right thing each day. It’s been hard, though, to find time to call my own. Those of you who are caregivers will know this refrain.

6. New Beginnings

I will get on with it. And we’ll catch up along the way.
This bullet list is a summary of the past few months. I’ll tell these stories and share the lessons I’m learning in future blog posts. It’s been an amazing time.

  • August 2014
    I moved from New York to Colorado, with my two cats in the back of my Honda Civic. We move into Molly’s basement, and I take over day-t0-day caregiving for Molly. Mom finally gets some much needed and well-deserved relief.
  • September 2014
    I move in to a small apartment with bright sunny windows, which my cats and I really needed after our basement stint. The apartment is just a short walk or run to Molly’s house and I continue to be with Molly every day.
    I begin regular attendance at a support group for family members of people with brain injuries. It’s a great resource and a lifeline.
  • October 2014
    After a four-day trip back to New York for some book signing events, I begin researching and visiting residences for people with brain injuries around Colorado.
    The time was right to take the initial steps to move Molly from her house and in to a new home with better and more care than I or my family members could (or should) provide.
Two of my sisters, Sara and Molly, with me at Thanksgiving.

Two of my sisters, Sara and Molly, with me at Thanksgiving.

  • November 2014
    My cat, Utah, dies near the end of the month. My other cat, Pablo, and I do our best to comfort each other in our grief and pull through the loss of our longtime family member.
    My family visits and spreads lots of support and love to me and Pablo on Thanksgiving weekend.


  • December 2014
    My search for an appropriate home for Molly continues. I put Molly’s name on the waiting lists at all the possible places, and I’m told the wait could be long. Months. Years. I remain motivated by Molly’s declining abilities to function safely or happily in her house and by her increasing frustration and anger at me and everyone. I speak honestly and carefully with Molly about my search for her new home. We even visit one place together, which she handles surprisingly well. But she remains grouchy and angry much of the time. I try to understand her fear and frustration and push ahead.

Coming Up Next…

2015 arrives and big changes are in store for Molly and our family. Stay tuned for the story of Molly’s move to a home for people with brain injuries and how we not only survived it, but how Molly is thriving.

And forward we go! Please leave a comment, ask a question, or share your ideas. I’d love to hear from you.

Thank you for your interest. It means the world.

P.S. If you know of someone–a family member, friend, colleague, client–who enjoys inspiring stories, please tell them about my websitemy blog, or my book. Also, it’s easy and wonderful (and super helpful!) to connect and share on social media. Thanks so much.


Reading and Gathering about Brain Injury

Just a quick update. There’s lots going on and I’ll be adding new details to this blog over the next few days and weeks. For now, here are a few highlights. Thank you for reading and for sharing!

Molly and me at a family gathering.

Molly and me at a recent family gathering.

Article on A Normal Life: A Sister’s Odyssey Through Brain Injury

On Sunday, 31 August, the Times Union newspaper is running a feature story about me and my book, A Normal Life: A Sister’s Odyssey Through Brain Injury. Click here to link to the article. The article is presented in a Q&A format so it feels like a conversation about my family’s story, carbon monoxide poisoning, and brain injury — with all its challenges and hopefulness, too.

Upcoming Book Signings

Please come out and join me at one of our wonderful independent bookstores — and bring your family and friends! I’ll be very happy to see you, sign a copy of my book, and hear what’s on your mind.
Thank you for helping me spread the word and to raise awareness.

Thursday, 23 October, 7:00 p.m.
The Book House at Stuyvesant Plaza
1475 Western Avenue
Albany, NY 12203

Sunday, 26 October, 11 a.m. – 12:30 p.m.
The Open Door Bookstore
128 Jay Street
Schenectady, NY 12305



To Yale and Back, and Beyond

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.

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.

You can share this post using the email and social media links below. Thanks. Also, please leave a comment or ask a question (comment link at top under title). I’d really like to know your thoughts. We can learn from each other and keep the conversation going. Thank you.


Creating Brain Injury Awareness

BI Awareness

Share Your Mind

March is National Brain Injury Awareness month and I’ve been busy trying to spread education and awareness in a variety of ways. I’ve listed links below to a couple of my efforts, including my article in the Huffington Post and an interview with WAMC Northeast Public Radio. Please check them out and share them with your family and friends. (Links for email and social media are below.)

New scientific knowledge about brain injury as well as improved prevention and recognition techniques are helping to address brain injury as an important public health issue. I believe that with greater understanding and awareness, we can better care for people with brain injuries and help their families and caregivers, and ultimately have more compassion for all those coping with brain injury of one type or another in their lives.

Thank you for reading and sharing. Here’s to expanding ideas, generating hope, and opening minds.

Click here for my article for the Huffington Post.

Click here for my interview on WAMC Northeast Public Radio with Joe Donahue.

Click here for information about TBI from the Centers for Disease Control and Prevention.


Catching Up with Molly and Mom

Here’s a question: What was going on in your life 19 years ago, in early February 1995?

Walt and Molly

Walt and Molly

As you know, if you’ve read my book, A Normal Life, or the first chapter after signing up here on my website, it was this week 19 years ago that my family’s world was turned inside out and shaken up badly. This week, 19 years ago, my sister, Molly, and her husband, Walt, became victims of carbon monoxide poisoning. Walt died in the accident. Molly barely survived and sustained a severe brain injury. Everyone in my family helped Molly during her rehab and has helped her in many ways over the years, but my mother has been and still is Molly’s primary caregiver and greatest supporter.

With this 19th anniversary in mind and because many people are now reading Molly’s story, I wanted to provide an update on Molly and Mom since I finished writing the book more than a year ago. Much has changed since the last chapter; in fact, new chapters of this odyssey through brain injury are occurring each week.

These changes over the past year were challenging on their own, but also impacted each other in the ways that difficulties in life often do.

  • Molly has declined some, especially cognitively;
  • My mother’s longtime companion, Glen moved out of my mother’s house and they are no longer partners; and
  • Mom has had increasing caregiving needs for Molly due to her decline, and after 19 years of truly heroic work as Molly’s primary caregiver, she’s experiencing some caregiver burnout.

Mom and Molly

Update on Molly

Even though there are still days of improvement, overall Molly has declined in the past year, particularly with her cognitive functions. A decline was predicted by her doctors and is typical for people with brain injuries. However, Molly did not decline as soon nor as much as her doctors thought she might at this point. In fact, she continues to amaze her doctors with her high functionality, especially given the severity of her brain injury.

But these days, Molly is more forgetful. She struggles to find a word she knows and wants to use and can forget what she’s doing in the midst of doing it. This is frustrating for her and she becomes angry quickly. She can be grouchy and sharp-tongued and might throw to the ground whatever is in her hand, maybe her jacket, a book, her cell phone, or the TV remote.

Molly is also no longer driving. She was still physically capable of driving, but not safely because she would forget where she was going or how to get there in the midst of driving down the road.

At home, Molly also needs to be prompted for some activities of daily living, such as taking her medications, preparing a meal, dressing appropriately for an activity or the weather, and planning her time to maintain her schedule of appointments. Happily, once Molly is prompted, she usually does most of these tasks well, even though she can be grumpy at times about being coached into exercising or eating healthfully, or asked to hurry up or wear a coat.

However, without any prompting at all, Molly dotes on her two cats and is always on time with their feeding. She gives them excellent care and spends hours playing with them. Molly still adores her cats.

Molly had a hip replacement this past August so she no longer has pain when she walks. With physical therapy and plenty of reminders to stand up straight, she is walking better, especially when she uses her trekking poles.

Molly looks wonderful and she’s almost always charming and cheerful at social events or with others in a group, even with family. She enjoys Rotary meetings, going to the hair salon, and seeing movies or theater performances. She also enjoys reading and reads the newspaper every day and cat magazines that arrive each month, and she’s well into the latest Stephen King novel (544 pages!) Molly is also still devoted to Starbucks and goes every day for a coffee or cider. She loves to socialize at Starbucks with the baristas, other regulars, and customers new to her, too. She still has a crackling good sense of humor, and can be lively and fun when she’s in a good mood.

Update on Mom

Glen and his family decided he would no longer live with Mom and he now lives with one of his daughters. Mom had asked Glen to get the medical care that his doctors were recommending, but he didn’t want to take their advice and his daughters agreed that the care was unnecessary. Glen was also beginning to have some dementia. Mom was very sad to see him go, but knew that she couldn’t insist on what she thought was best for him.

His departure was hard on Mom. She loved Glen and enjoyed being with him. He was helpful to her and provided an important balance in her life. With the demands of caregiving for Molly increasing, and Glen no longer present to provide companionship and comfort, the burden of caregiving and the toll it took on Mom became much heavier.

With Molly not driving and having greater caregiving needs, and Mom trying to do it all on her own, she soon felt overwhelmed. Mom took to heart the all-important first rule of caregiving—you must take care of yourself first before caring for others. Mom tracked down and hired excellent health professionals and caregivers to spend time with Molly through the daytime hours on most days of the week. Another wise and loving action from Mom, and it’s been a big improvement for everyone.

This vital action on Mom’s part gave her relief from caregiving constantly and some much needed time for herself and her own life. Molly also seems better as she works with her new caregivers. Molly considers Naomi, who spends most days with Molly, to be a close friend. Hiring some help has also improved Mom and Molly’s relationship, making their time together on Sundays and every evening for dinner much more pleasant. Mom is still Molly’s primary caregiver, but now she has supportive colleagues who work with her to help Molly. As a result, Mom can focus on her most important roles with Molly–being her mother and friend.

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Help Prevent Carbon Monoxide Poisoning

Carbon Monoxide concept.Warm winter greetings to you for good health and happiness.

In this season of joyfulness with family and loved ones, I have been so sad to read that eight people died from carbon monoxide poisoning as a result of the severe ice storm that hit parts of the U.S. and Canada in December. Then in February, one person died and many were injured by carbon monoxide poisoning in a restaurant in Huntington Station, in Long Island, New York. Still more people were injured in a time-share resort in Ogunquit, Maine. We don’t even know how many others this winter may have fallen ill or been injured from carbon monoxide poisoning, potentially suffering brain injuries that will change their lives and their families’ lives forever.

It breaks my heart because I know that most incidences of carbon monoxide (CO) poisoning could be avoided if people only had CO detectors. Then, even if generators, heating systems, or other machines are misused or fail to operate or vent properly, people could be warned of the danger of CO in the air they’re breathing.

The appendix of my book is a brief primer on CO poisoning–what it is, where it comes from, and how to avoid it. I’m presenting the appendix here in the hope that you will read it thoroughly, share it with everyone you know (you can use the links below), and please, take the message to heart that we can save lives–and beings–by preventing CO poisoning.
Thank you for sharing this important information and for protecting yourself and others.

A Normal Life: A Sister’s Odyssey Through Brain Injury

Appendix: A Primer on Carbon Monoxide Poisoning

Carbon monoxide exposure sends an estimated 15,000 Americans to emergency departments each year, and causes 500 unintentional deaths, and this is likely an undercount. CO poisoning remains the leading cause of poisoning deaths in the U.S.

CO emissions are produced whenever a fuel, such as propane or natural gas, oil, kerosene, coal, wood, or charcoal, is burned. CO levels can become hazardous when the fuel-burning source is not functioning correctly, used correctly, or vented correctly.

At low levels of exposure, CO causes symptoms such as headache, dizziness, fatigue, and nausea, which might at first be mistaken for the flu. But beware. If symptoms get worse (confusion, drowsiness, chest pains, fast breathing or heart beats, vision problems) or more than one person in the same area has similar symptoms, get outside in fresh air immediately and get medical attention. Don’t ignore the symptoms and go to bed. Continued exposure to CO can cause loss of consciousness and death.

Recent studies show that a large proportion of the public remains unaware of the risk of CO poisoning. Most people I’ve spoken with are astonished at the number of potential sources of CO. Gas- or oil-fired furnaces and hot water heaters; gas stoves, kitchen ranges, and clothes dryers; wood stoves and fireplaces; fuel-burning generators, space heaters, lanterns, and barbecue grills; and internal combustion engines—cars, trucks, powerboats, ATVs, snow mobiles, snow blowers, lawn mowers, portable generators; and gas-powered garden and construction tools. Electrical appliances are generally safe, unless through careless or faulty wiring, they start a fire.

The critical point is that CO poisoning is almost entirely preventable. The first line of defense against CO is to make sure that all fuel-burning appliances are correctly installed, operated properly, and cleaned and maintained regularly. Annually, before cold weather sets in, home heating systems, including chimneys and flues, should be inspected and cleaned by a qualified technician. Make sure vents aren’t blocked or leaking. All appliances that burn fuel and their mechanical and electrical components and thermostat controls should be checked, too. Never run internal combustion engines or fuel-burning space heaters, generators, or barbecue grills indoors or in enclosed areas. And still, appliances deteriorate with time and problems can occur anytime, anywhere, and without your knowledge.

The surest safety measure is to put a CO detector in your home and take one with you when you travel. Unlike odorized propane, smoke, or fire, you cannot smell, see, or taste CO, and it doesn’t cause skin or eye irritation. Without the aid of a CO detector, it’s nearly impossible to know if CO is present at harmful levels until you start to feel sick or worse. CO detectors measure CO in the air and sound an alarm before dangerous levels of CO accumulate. In small amounts, CO can hurt you slowly over time; at higher amounts it can have deadly effects within hours or minutes. Some people never experience symptoms, they just go to sleep and never wake up.

Often, people mistakenly think that smoke detectors are also CO detectors. They are not. People need to equip their homes with both smoke detectors and CO detectors. Specialized units that are dual smoke/CO detectors are available.

At a minimum, install a CO detector in or near sleeping areas. Better still, put one on each floor or end of your home. Electric CO detectors can be hardwired or plugged in and have a battery back-up that kicks in if the electricity goes out. I recommend having at least one CO detector that runs solely on battery power. Mine fits nicely on my nightstand and I never take a trip without putting my CO detector in my bag.

Congress mandated smoke detectors in every guest room across the U.S. in 1990. The distressing fact is that only a few states have a law requiring CO detectors in hotels and motels, and not a single state has a law requiring CO detectors in all guest rooms. So I carry my own. Extra cautious is part of who I am now.

A CO detector costs between $20 and $50 and should usually be replaced every five years or according to the instructions.

Don’t think it can’t happen to you; a carbon monoxide detector can save lives and beings.




An Introduction

Untitled1 Welcome to my Blog!

Hello everyone! This is exciting! My blog is up and running. I’m ready to reach out and share useful news, interviews with experts, and all kinds of interesting information with you. And I’m looking forward to “meeting” you–the readers of this blog. My hope is that together we can create a helpful community that presents bright ideas, supports brain health, and offers inspiration.

Look to this blog for updates on my sister and her brain injury and on my family. A lot has happened since I finished writing my book, A Normal Life, and this true-life adventure continues to be an ever-changing and fascinating story. I am frequently asked, “What’s going on now?” So I’ll let you know about the latest ups and downs and twists and turns. My family learns new lessons in brain injury care and brain science nearly every day. We put our heads together and do our best. And although no two brain injuries or caregiving situations are alike, we benefit from each other’s perspective, persistence, and creativity, as well as fresh energy and new ideas from others.

I believe the information and experiences I’ll share here will be helpful to you, and your comments will enrich our discussion. In this blog, I’ll also write about:

  • family
  • sisters
  • caregiving
  • long distance caregiving
  • acquired brain injury (ABI)
  • traumatic brain injury (TBI)
  • head injury
  • brain injury care and treatment
  • brain science
  • hyperbaric oxygen (HBO)
  • neurology discoveries
  • concussions
  • veterans
  • athletes
  • and more.

(Suggestions anyone? What topics would you like to read about and discuss? Your input is welcomed! Just leave a comment on this blog or email me.)

I’ve also put together a collection of resource links I hope you’ll find useful. Check it out–there’s something for everyone. Click here or on Resources in the top right corner of this page. This is a good place to learn about, explore, and tackle a variety of challenging brain issues and other healthy life topics head on.

Looking Ahead

My goal for this blog is to offer readers useful information, ideas, and insights. Your questions and thoughts will bring the conversation full circle. Please feel free to leave a comment on the blog or contact me. We can brainstorm solutions, exchange resources, and, best of all, find inspiration. If you’d like to receive an email when I post to this blog, please sign up in the box to the right. And if you sign up, I’ll also send you the first chapter of A Normal Life for free!

Please share this blog with your family and friends via the social media links below. Lots of readers will generate more useful information and lively discussions. I hope you’ll check in and read this blog often and join the conversation by leaving a comment. Your contributions are valuable and help make it all worthwhile.

Coming Soon: Catching up with Molly and Mom, my brain injured sister and her primary caregiver.