Caregiver Visionary Award Nomination
Visionary Award Nominee: Donna O’Donnell Figurski
Nominated by: David Figurski
Tell us about the nominee’s caregiving story.
Donna, my wife, was having a typical morning getting ready to leave for her first-grade classroom. I was also getting ready for work and doing exercises across the hall. Because of my 13th chin-up, our lives changed radically and instantly. That last chin-up caused my brain to bleed. I was very lucky Donna was still home. I went to her, and she immediately went into her high-responsibility mode. She knew
something was seriously wrong and was ready to dial 9-1-1. But, even though I was in pain, I made her wait a minute because 9-1-1 seemed so grave. She had me tell her what happened and what I was experiencing. It was good that I did because, when the paramedics arrived, I was slurring my words and I lapsed into a coma that lasted three weeks. That was the instant Donna became my caregiver.
A subarachnoid hemorrhage occurred in my brain on the morning of January 13, 2005. Because I went into a coma, Donna managed my medical treatment, and I’m convinced she saved my life. I had three brain surgeries in two weeks, none of which I was expected to survive. But, I did. During my hospitalization, she managed my medical care and therapy. She was by my side 12-14 hours a day and, by herself, had to approve all my surgeries and procedures, deal with my being dependent on a respirator, allow the installation of a tube that fed directly into my stomach and a tracheotomy so I could be on the respirator longer, talked constantly to me or played music, massaged my legs, etc. She caught errors in my care by nurses; dealt with recalcitrant doctors, one of whom wanted to “pull the plug”; and lobbied all my doctors to get me the most aggressive therapy.
After almost three months, I was discharged from the hospital. But, I clearly wasn’t ready for home―I still needed hospital-care. Donna learned as much as she could from the nurses before I was released. She alone took care of me at home, but the job nearly overwhelmed her. It was five years before she felt I could be left alone for a short time. Even then, she called me frequently.
It’s now fourteen years later, and I do more to take care of myself, although I am disabled. I can shuffle around the house with its level floors, but my balance is so poor that Donna and I must walk arm-in-arm when outside. She is constantly looking out for my safety and cheers every small improvement. Both of our lives have changed radically. We were going to travel in retirement, but that became impossible. We now live our “new normal,” and we’re simply happy to be together.
Tell us about the support the nominee provides. What makes it innovative? How has the support made caregiving easier or better?
After the hemorrhage in my brain in 2005, the major focus of Donna’s life became to provide people with information about brain injury, to help survivors of brain injury and their caregivers, and to make the general public aware of brain injury. She has several significant platforms to spread the word–fourteen years of experience being a caregiver for her husband, several published articles and book chapters, a book just released in November, a radio show (“Another Fork in the Road”) two Sundays a month on the Brain Injury Radio Network, a blog dedicated entirely to brain injury, and speaking events about caregiving. Nevertheless, she emphasizes that her most important activity is being my caregiver.
Donna didn’t know anything about brain injury when I was taken to the Emergency Room for mine. Against the odds, I survived, and Donna has cared for me for the past fourteen years. Even in the hospital waiting room, Donna was aware of the lack of information about brain injury. (It was the time before social media and the abundance of support-groups on the Internet that are so useful now.) Donna resolved then that she could use her writing skills to draft a desperately needed and informative pamphlet on brain injury. She ended up writing and publishing a book instead. Her book informs the reader of her terror and all the other emotions that she, loved ones, and friends experience. She explains in simple terms procedures to expect. Some seem frightening, but, in fact, are commonplace in the treatment of brain injuries. Donna’s book also explains how she was an aggressive advocate to get me the best medical care and therapy. (On November 1, 2018, Donna’s memoir, “Prisoners without Bars: A Caregiver’s Tale,” was published by WriteLife Publishing.)
In 2014, Donna began a brain-injury blog (https://survivingtraumaticbraininjury.com) “for Survivors, Caregivers, Family, and Friends.” Currently, the blog covers all forms of brain injury, not just TBI as the name suggests. This blog has become popular, having over 103,000 views. It has also been honored with an award (Top 30 Brain Injury Blog Award). Donna takes considerable pride in this blog because it gives voice to the brain-injury community.
The blog has several interesting categories (including SPEAK OUT! interviews of survivors and caregivers; Resources–information; NewsBits–research news; Guest Blogger for a different perspective; TBI Tales–brain-injury stories; Itty-Bitty GIANT Steps–small, but significant, accomplishments; So, Whaddya Think? –opinion; On the Air! Show Menu–descriptions and links for podcasts of all Donna’s radio shows–see below; and Faces of TBI–short stories of brain injury). Her flagship posts are the SPEAK OUT! interviews for survivors and caregivers. Anyone can complete one. Donna has written twenty questions specific for a survivor or a caregiver. People complete them, and Donna posts them. It turns out that survivors and caregivers are eager to tell their stories. The stories are amazing and inspiring. Readers often discover others who are going through what they are, and sometimes they learn of new strategies for coping.
Because of the early success of her brain-injury blog, Donna was recruited to become a host on the Brain Injury Radio Network. Her radio show (“Another Fork in the Road”) is broadcast in all 50 states and in 36 countries. Donna’s 80-minute show airs on the first and third Sundays of every month at 5:30 Pacific Time. Furthermore, because her show originates on the Internet (blogtalkradio.com/braininjuryradio), it can be heard anywhere in the world. The live show is archived, so it can be heard at any time. The easiest way to access an archived show is through the On the Air! Show Menu category on Donna’s blog (https://survivingtraumaticbraininjury.com/category/on-the-air-show-menu/).
The significance of Donna’s show on the network is huge. Donna is the only caregiver on the network; all other hosts are survivors. Consequently, Donna is the only host who frequently has guests and panelists who are caregivers. Donna gives a caregiver’s perspective to any discussion. Her perspective often includes helpful tips for caregivers learned from her fourteen-year experience as a caregiver. Donna has talked about a caregiver’s need to take care of himself or herself. She recently discussed how it’s nice for a caregiver to hear overt appreciation from the care-recipient for even a small thing that the caregiver is doing. A survivor’s appreciation should not just be assumed.
Donna’s voice of support for caregivers is strong and is being heard by thousands of people– through her blog, her radio show, and a deeply personal memoir.
How does the nominee inspire others?
Donna affects others because she is keenly thoughtful and compassionate.
I see it constantly through my daily personal interactions with her. She is optimistic, sensible, and sensitive. For example, she understands when I need to do something myself, even though it may take longer, but she can sense when I need and am willing to accept help.
Her deep understanding of my condition makes her careful not to embarrass me. As an example, she will subtly indicate with a finger to her face that I have a particle of food on my own unfeeling face.
And, she is cheerful–constantly finding aids that improve my life and becoming excited about any small gain I make.
Donna is also a gifted writer (she is a recipient of the HOPE Hero 2019 Award) and a talented radio host. Through her written and spoken words, she is able to reach and move people. From her book, blog posts, published articles, and radio show, people get the same sense of her compassion that I do from personal contact.
Please provide testimonials of family caregivers or former family caregivers who benefit from this support.
Here are some comments from people, mostly caregivers, who have been touched by Donna’s book, by her blog, by her radio show, or through personal contact with her.
As an example, Donna met Judy Thau in the hospital. Judy was going through the nightmare of the treatment and prognosis of a spouse who experienced a brain bleed. Donna was only a couple of weeks ahead of Judy, but, even though she was living her own nightmare, she felt she could be of help to Judy. Donna did help Judy understand and prepare for what was coming. They remain close friends.
Another friend, Sharon Collar Bornhoeft and Donna met long before Sharon was thrust into the role of caregiver for her husband. Even then, Sharon was impressed by Donna’s compassionate and sensitive caring for me. When Sharon later became her husband’s caregiver, she talked with Donna and realized she could manage the work required of her.
Testimonials from both are included among those given below.
1. A year ago, my husband lost his leg, and I became his caregiver. By the end of the first month, I was exhausted. One day, I sat in my car sobbing, not wanting to go into the house. I couldn’t seem to soar above what was happening in my life. I later ran into Donna and her husband after a political meeting. She sat and listened to me. And, I went home knowing I was just a normal caregiver under stress.
Recently, I attended a get-together where Donna was talking about her book. I kept interrupting, asking for more information. There were thirteen other caregivers there, and, soon, we were all asking her to help us understand more. Donna immediately left her planned format and turned the gathering into an open session for all of us. Our questions ran from medical to financial and emotional. Her knowledge is amazing. It was wonderful! In just that day, she not only helped me, but also thirteen other worried caregivers. Yes, it was a big deal!
Sharon Collar Bornhoeft, caregiver for her husband, retired actor
2. Most stories about tragedies or medical journeys focus on the patient. Donna O’Donnell Figurski’s “Prisoners without Bars: A Caregiver’s Tale” is such a compelling read because it looks at traumatic brain injury through the caregiver’s lens. I related to so much of what Donna describes―from the low moments of despair to celebrating the small and large victories.
Lee Woodruff, caregiver of her husband, Bob Woodruff, who received a brain injury in Iraq while preparing a story for TV; author with Bob of “In an Instant: A Family’s Journey of Love and Healing”
3. Donna O’Donnell Figurski has inspired me in so many ways and through nearly every medium: radio, books, and articles. Donna has that rare mix of being able to create an emotional connection that arises out of deep understanding while also offering hope and practical strategies to caregivers and survivors alike. She has been an enormous support in helping me better understand relationships as they navigate the murky waters of head injury.
Rosemary Rawlins, caregiver for her husband, Hugh, who has a brain injury from a bicycle accident; author of “Learning by Accident”; editor for BrainLine Blogs
4. Only someone who has been on this journey could ever begin to understand that, with all the pain, we are still so very grateful for our new life. Donna O’Donnell Figurski tells her story of grace, love, frustration, anger, disappointment, strength, joy, and, above all, hope. I believe Donna and David’s beautiful, painful, and inspiring story will bring comfort, insight, and the hope that all does not have to be lost, even for a “prisoner without bars” and the person who loves him or her.
Judy Thau, caregiver for her husband, Steve Thau, who has a brain injury
5. I feel that Donna and David’s story reflects the heart of what many families experience during a critical, life-altering event. Stories such as theirs help others facing these events to better understand that life can go on―be it a new and different life―but you can move forward.
Lisabeth Mackall, MS CCC-SLP, caregiver for her husband, Frank Mackall, former police officer who suffered a brain injury in the line of duty; speech pathologist; author of “27 Miles: The Tank’s Journey Home”
6. Donna O’Donnell Figurski’s story is a true expression of dedication not only to her husband, but to herself as well. She clearly demonstrates the emotional roller coaster we caregivers go through in our journeys from the beginning of the injury to our new life. As a fellow caregiver, our journeys are each unique—but our mission and drive are similar. Donna’s passion for caregivers and brain injury is felt in the pages of her book and in the life she leads.
Jeannette Davidson-Mayer, caregiver for her husband, DeWayne Mayer, who has a brain injury from serving in Iraq; former Elizabeth Dole Caregiver Fellow
7. I’d like to forward my critique of Donna O’Donnell Figurski’s book, “Prisoners without Bars.” I reacted to this book on several levels. It tells us about how a brilliant man and his loving wife overcame a terrible trauma. This wife, who had no experience with a tragedy, became a fighter for her husband’s life. In addition to caring for him, she continued to teach and still find time to be by his side. She became pro-active—standing up for his care when others would do less. She found the best possible care and insisted he have it—a lesson learned by all who would accept in their hearts care that isn’t good enough.
Every man or woman who is caring for a loved one can identify with the problems that develop with a severe illness. Donna’s husband was fortunate for her having the relentless determination that he survive. If you’ve been through or are going through such an issue, you will feel it in her story.
Donna’s glorious continuous struggle for David and the strength of spirit he possessed along with the determination of his wife and family constitute a lesson for all who despair. I felt the joy of learning that he came through the dark side, mentally unimpaired and going forward with his life.
In addition, Donna has found a new niche in life and continues forward using her talent and creativity in a new enterprise. It’s such a lesson for others to learn that it is possible to find new things and not to despair. A lesson for all.
B.J. Homchick, caregiver for her husband (now deceased), fellow theater-worker
8. In January 2005, Donna O’Donnell Figurski’s husband, David, sustained a traumatic brain injury. Donna steadfastly chose to not be defeated by this tragedy. Donna has emerged as a powerful voice within the brain injury community through her radio show and has recently published a memoir about her experience.
David A. Grant, TBI survivor, publisher of HOPE Magazine
9. In my darkest days, I was praying I would meet someone like Donna who understood the life of being a caregiver for a brain-damaged husband. It’s not an easy task. Donna has been a great teacher and example for me. I appreciate her zeal for knowledge and her helping others through their hardships. The brain-damage world is such a mystery to many. I appreciate Donna for all she does to help educate others.
Cyndy Feasel, former caregiver for her husband, deceased former Seattle Seahawks lineman Grant Feasel, who suffered from a brain injury; author of “After the Cheering Stops”
10. Reading “Prisoners without Bars” brought back all the shock and joys of being a caregiver for a family member who lived through a traumatic brain injury. Donna O’Donnell Figurski shared her story with so much of the history of herself and David (her husband) that I felt I was one more of her close friends filling our time with love and laughter. She brought me through the horrors and despair of the immediate incident. She renewed in me the power of the trust in love and the power of believing and pursuing that, no matter how long it takes, there are always improvements. Some improvements are huge and observable to everyone. Other improvements are so subtle that Donna shared she felt she was almost imagining them. This book will give all the caregivers of TBI survivors a chance to find solace and support in their loving care, time commitments, and changes to their lives.
Grace Mauzy, MA, former caregiver for her daughter, Jamie Crane-Mauzy, former professional skier who suffered a brain injury during competition; Teen Counselor; self-esteem expert; certified in: personal-fitness, nutrition, reiki, yoga, and skiing instruction.
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You can learn more about Me at my blogs:
Surviving Traumatic Brain Injury
Donna O’Donnell Figurski’s Blog