Writing A Caregiver’s Tale

Donna O’Donnell Figurski’s nightmare began when the neurosurgeon said her husband, David, would be a great organ donor. David had suffered a traumatic brain injury and over the following two weeks, he survived three brain surgeries, defeating desperate odds. For the next 13 years, Donna took on the often-overlooked role of caregiver to her husband, who never fully recovered.

In her debut memoir releasing on Nov. 1, 2018, Prisoners without Bars: A Caregiver’s Tale, Donna recalls the moment she was thrust onto the path of caregiver for her best friend and love of her life.

Why did you write this book? What was your motivation?

When my husband, David, had a traumatic brain injury, I entered a new world, which I knew nothing about. I was lost.

I scoured the Internet for books that would let me know that I was not alone in this terrifying new world. There were a few books about the topic, and I devoured them, but I couldn’t get enough. I wanted to know other people’s stories. I wanted to know how they made it through their journeys.

I never intended to write a book about our journey through the traumatic brain injury maze. (I usually wrote children’s picture book manuscripts.) But, after I put David to bed at 8:30 p.m., I continued to write detailed email updates to inform family and friends of his daily progress. After all, he was hanging by a slim thread. Writing helped to release my pain. Eventually, after a year of updates, I realized that I had a story to tell and that our story could offer hope and inspiration to others following in our path.

My husband and best friend was given little chance to survive any of his three brain surgeries. I was repeatedly told not to expect him to live on, and, yet, he did. He defied the slimmest odds. So, I wrote to offer motivation and encouragement to others walking this scary path. I wrote to let other survivors and caregivers know that there is hope. There is always hope! And, I wrote because I could.

“Prisoners without Bars: A Caregiver’s Tale,” is not only a story of our struggle, but it is also a love story. Though “Prisoners” addresses a dire topic, it is peppered with comedic situations. I believe that laughter is the best medicine. David and I thrived on laughter. The journey of brain injury is difficult for both the survivor and the caregiver, but David and I are journeying together – one step at a time. And I hope anyone joining us on this path finds encouragement and hope between the pages of “Prisoners.”

Why is your book titled “Prisoners without Bars?”

My book, “Prisoners without Bars: A Caregiver’s Tale,” evolved and transitioned through an array of titles from “Surviving Traumatic Brain Injury” and “Conquering Traumatic Brain Injury,” which I decided were too generic and boring, to just “Prisoner without Bars.” It transformed into “Prisoners without Bars” (notice the “s”) when an agent I was speaking with insisted that the book was about me too. When I finally resolved that I would retitle it to “Prisoners without Bars,” David and I discussed it and I added the subtitle, “A Caregiver’s Tale” to better characterize the book for readers.

But, why is it even titled “Prisoners without Bars?” Brain injury strips so much from survivors’ lives – and from their caregivers’ lives too. The part of the brain that is injured dictates what sort of challenges a survivor will have. David’s brain injury left his cognitive functions intact, but he is physically disabled. Among other problems, David’s balance is severely damaged. He is not able to leave our home environment without me assisting him. Essentially, he has become a prisoner in his own life. At the onset of David’s injury and for many years after, I too was a prisoner. I was a prisoner of David’s life.

How have your lives changed since your husband’s brain injury?

Our lives have flipped like a coin. The consequences of brain injury seem to impact every minute of our lives. Because of David’s many disabilities, including balance, compromised vision, both bladder and swallowing issues, his ataxic right arm, and his inability to do many normal activities, his life has become slower and much more difficult. My duties have doubled as I take on the responsibilities that David once oversaw. Yes, doing the bills. Yuck! And…even taking out the trash. Double Yuck!

There are more than 65 million caregivers in the United States, yet so little is known about their lives and daily responsibilities. Why do you think that is?

Curious, huh? I guess most folks focus on the care-recipients. After all, they are the ones who are hurt or have experienced serious illness. Frankly, I never thought of myself as a caregiver for many years after David’s injury, though I was his right hand woman. He relied on me. Still does for many activities in his life. I just did what had to be done. A caregiver and author friend of mine, Rosemary Rawlins, says that caregivers are unsung heroes. And, she is so right.

Similarly, why is it important for the public to know and better understand the lives of caregivers?

I think it is extremely important for family and friends to understand the complexities of a caregiver’s life with their care recipient. Caregivers are often on duty 24/7. They are ever-alert. I know I was and still am. When David is sleeping, I wake in a flash. I don’t know why, but I have an inner alert system that triggers for the least possibility of danger. Think about how parents are immediately vigilant and at crib-side the moment their infant whimpers. I think caregivers are equipped with that same alarm system. Being always on-call can leave a caregiver weary and overwhelmed. If others realize a caregiver’s needs, perhaps they could help out sometimes. I know even a little help would be greatly appreciated. There are millions of caregivers, more than 65 million in the United States alone, so the chance of becoming a caregiver someday is great. Pay it forward. You may need someone else’s favor someday.

Caregivers of brain injury survivors are in it for the long haul. Brain injury cannot be compared to a broken bone, which given time will heal. Brain injury simply does not heal. Few survivors ever return to their pre-injury selves.

In what other ways are you helping the brain injury community besides your book, “Prisoners without Bars: A Caregiver’s Tale?”

In 2014, I created a blog called Surviving Traumatic Brain Injury (https://survivingtraumaticbraininjury.com/). On the blog, I shared the story of our lives in the brain injury world. Then, I got a great idea – to give other survivors and caregivers a platform to tell their stories. So, Survivors SPEAK OUT! and Caregivers SPEAK OUT! were born. The blog continued to grow and now has more than 20 categories, including Brain Injury Resources and Itty-Bitty GIANT Steps. The blog currently has over 100,000 views.

I also am also a radio host for the Brain Injury Radio Network on http://www.blogtalkradio.com/. My show, “Another Fork in the Road,” features brain-injury survivors, caregivers and medical personnel in both single-guest and panel forms. My 80-minute show airs twice a month. Here is a link to all my shows: https://survivingtraumaticbraininjury.com/category/on-the-air-show-menu/. I recently created a new website, https://www.donnafigurski.com/, which features my book, “Prisoners without Bars: A Caregiver’s Tale.”

 

DONNA O’DONNELL FIGURSKI is the author of “Prisoners without Bars: A Caregiver’s Tale” released on Nov. 1, 2018. She is the host of Another Fork in the Road on the Brain Injury Radio Network, and is the creator and writer for her blog, Surviving Traumatic Brain Injury (.com) and her website, Donna O’Donnell Figurski—Author at donnafigurski.com. She is a frequent contributor to both print and online journals and magazines, including Hope Magazine, Lash and Associates Publishing Blog, The Mighty, BrainLine, and Disabled Magazine. And to lighten things up, Donna pens picture-book manuscripts for children and has published four children’s stories with Scholastic.

About PRISONERS WITHOUT BARS: A CAREGIVER’S TALE

This heart-wrenching and triumphant love story is a tale of advocacy and caregiving. Donna’s husband, David, stumbled into their bedroom, his hand covering a blood-filled eye from a brain hemorrhage.

Donna called 9-1-1. David slipped into a coma. At that moment, Donna was thrust onto the path of caregiver for her best friend and the love of her life. In her debut memoir,

Donna shares how a neurosurgeon said that David would make a “great organ donor.” She writes of arrogant doctors, uncaring visitors, insensitive ambulance drivers, and problematic nurses. She also tells of the many compassionate doctors, nurses, therapists, staff, strangers, family members, and friends who helped them on their journey.

Donna compellingly describes her ability to appear positive as she experiences the horror of making life-or-death decisions. As her world crashes, she credits laughter as her lifesaver. More than thirteen years later, Donna and David are living a “new normal” together.

 

Tags: featured, women writers

Category: Interviews