2017 Maine Survivor Stories Archive
November 11, 2017
In 1951, at a mere six months of age, Debbie Salvador was sick with spinal meningitis for nearly two months and then suffered a cerebral hemorrhage. The injury left her with a weakened right side, including foot drop and a “lazy” arm. As she grew up, she also realized that she interpreted the world differently than other kids (upside down and backwards) and that she had to manually turn things right side up in her brain. Teachers felt bad for Debbie because it was difficult for her to move around with braces on her arm and leg, so she never had to go up to the blackboard during class and was able to keep her cognitive challenges hidden.
At around eight years old, Debbie had her first surgery to shorten her hamstring cord in her weak leg. She was part of a group of children undergoing experimental surgeries and they were first paraded in front of an auditorium full of people. Debbie was later molested by the individuals who prepared her for the surgery, and when she woke from the anesthesia she pulled the IVs out of her arm and pulled her hair out. Her father was so distressed by this that he then had a nervous breakdown. The surgery itself was also a disaster: they shortened her muscle too much, which left her with significant tremors. She was then put on Valium, which her mother told her was a vitamin.
In school, Debbie did very well in math and science, and very poorly in English. In high school, her short hand teacher caught her writing upside down and backwards and tried to have her thrown out of school. Fortunately, her bookkeeping teacher came to her rescue and she was able to finish high school.
After school, Debbie worked at Woolworths. One day, a man came in and asked for a corkscrew. Debbie didn’t know what one was and the man thought that was cute, so he asked her out. They dated for a couple of years, and Debbie hid her brain injury from him. After they married, her husband became increasingly abusive.
Over the years, they lived in Massachusetts, the Caribbean, New Hampshire, and Maine, all while the physical abuse escalated and Debbie’s abuse of alcohol increased in turn. At one point while she was drinking heavily and still taking the Valium initially prescribed to her as a child, she began hallucinating. She quit taking the Valium cold turkey the next day, but continued to drink heavily.
When they lived in New Hampshire, Debbie had to go to the hospital so many times (her husband continually blamed it on the dog) that the hospital notified the police. At that point, Debbie and her husband moved to Maine. Debbie tried to get sober, but her husband would not let her go to AA and at one point forcibly poured alcohol down her throat.
After 20 years of abuse, Debbie left her husband and got sober all in the same day when she ran away to Bangor in 1989.
Within a couple of years, Debbie’s body began to fall apart. Since 1990, she has had over 30 surgeries: she was wheelchair-bound for a year and at one point she had to be on antibiotics for nine months to fight a serious infection. Ten years ago, Debbie was taking 45 medications, barely knew who she was, and was taking weekly ambulance rides to the hospital. Eventually the decision to reduce her medications was made, and she has been doing great since then. She has been on crutches since 2008, but after the success of a recent back surgery made a tremendous difference in her mobility, Debbie has been working hard to get off of them.
Debbie is grateful to be alive and doing as well as she is. She continues to work on her rehabilitation at WestSide, often working to strengthen her right side with activities like coloring and playing Battleship and Mastermind. She is a member of AA and loves to give back through her volunteer efforts. Over the years, she has volunteered at hospitals, with battered women, and with the Brain Injury WINGS support group, which she has been involved with for the last six years. Debbie has overcome so much in her life and she is an inspiration to us all.
My name is Kelly Theberge, and I’m from Vassalboro, Maine. Every year in the U.S. 700,000 people are diagnosed with a brain tumor. Brain cancer is much different than other cancers: it’s very difficult to remove a tumor in the brain, and frequently the person is left with physical or cognitive side effects whether or not it’s removed and whether or not it’s cancerous.
The life expectancy after a brain tumor diagnosis is an average of five years.
Five years to say goodbye, five years to live, but most likely, five years to lose everything they ever had—their ability to walk, to talk, to see, to get themselves dressed or feed themselves, and the ability to remember their wife, their daughter, their parents, and the life they once had. They slowly lose everything they ever worked for, and at the same time it ends so quickly.
My dad, Bob Burns, died from a brain tumor at the age of 49. He had three years. He was one of those patients I just described. Not only did he lose everything and his life, but hundreds of people around us did too. He owned his own company. People lost their jobs, their best friend, their husband of 27 years, their son, their dad. I was 18. My sister was 19. My brother was 11. Our lives changed forever.
Everyone’s lives changed forever. It was like a brick wall was put in front of everyone I knew, and they couldn’t move past this devastating event. A piece of everyone died when my dad died. My grandfather developed depression, which manifested into shutting the world out, and actually losing his own ability to mobilize and communicate, which eventually lead to his own death. I can’t imagine losing a child.
My mother, at first, woke up every day to take care of her children, but with the empty expressions day after day, it was obvious she would wake up just to fall back asleep. She would say she already lived the best part of her life. I can’t imagine losing my husband.
My brother didn’t engage in regular conversation or express any sort of feelings for years. I can’t imagine losing my dad at the age of 11. My uncles became angry: angry at my dad for leaving them, angry at the world, maybe angry at themselves? I can’t imagine losing my brother.
I was angry as well. I was 18, and in my first semester of college. I stayed close to home for college, while all my friends got to move on, and live “the college experience.” I continued to stay at college close to home for about another year after my dad died, and then moved on as well (only an hour away), and eventually, probably lived “the college experience” too much. I appeared to live to a normal life of going to school and working, but often expressed my feelings clearly through anger or tears. The entire family drifted apart. My dad was the piece that we all needed to be a family. My dad’s friends disappeared. The people who were like my own family were gone forever. Or so I thought.
Eight years later, after finishing my Master’s degree in Occupational Therapy, meeting my husband, getting a job, and finally having stability in my life, I decided to turn it around. There was still one piece of me that wasn’t stable, that wound still felt unhealed, and I had unfinished business to attend to. I have one life as well, and I wanted to live it like my dad lived his—making a difference, and living every single day with a purpose. I wanted to finish my dad’s fight. He never failed; he never lost.
My husband and I joined the National Brain Tumor Society, and have been going to Capitol Hill since 2015 to advocate for more funding and treatment for brain tumors. I am now the Maine State Lead Advocate for this cause with the National Brain Tumor Society. I also created The Bob Burns Memorial 5K – the only fundraising event for The National Brain Tumor Society in the state of Maine. 2017 will be the 4th annual Bob Burns Memorial 5K. Combined, my committee and I have raised nearly $25,000 so far.
With this event, I reunited with my dad’s friends after eight years, and continue to see them regularly. As a matter of fact, on my wedding day this past year, they were the only people I could keep my eyes on as my brother walked me down the aisle. My brother grew up into a respectful, outgoing, funny, handsome man, and my hero. He joined the United Stated Marine Corps. My mother is my best friend. She travels, dates, volunteers, and supports me from behind the scenes. She encourages me to be independent with this journey. As far as the rest of the family, we’re probably as close as most normal families.
I continue to look for fellow advocates, voices, sponsors, and constantly raise awareness in my community, the state of Maine, and as much of the world as I can possibly reach. The more people I can reach, the more people that can be involved, the better our chances are for being the change we need in this world – a cure for brain cancer.
So, I’ve decided not to stop until there is a cure, or at least proper treatment for these patients, and their families. You can’t fund something you have no awareness about.
To become an advocate or help Kelly in any way, whether it’s by phone, computer, joining her in Augusta at the 4th Annual Bob Burns Memorial 5K on July 20th, 2017, or joining her on Capitol Hill – please contact Kelly Theberge at: Kelly.Theberge@MaineGeneral.Org or go to Kelly’s Cause for Brain Tumors Facebook page.
Have you ever felt trapped, unsure, and lonely? Well, I have felt that way for the past nine years. Envision being unable to speak, move your body, or express your feelings. This is how I spent three months of my life. When I was 13, I was in a terrible accident, crashing the compact car I was driving into the turn two wall at Beech Ridge Motor Speedway on August 8, 2007.
What would you do if you just woke up from a coma with a broken left shoulder, paralyzed vocal cord, paralyzed stomach, cracked left pelvis, and a traumatic brain injury on top of everything else?
I have spent these past almost 10 years reinventing myself. Imagine waking up one morning and having to figure out who you are all over again. Add to that learning to walk, talk, and manage your emotions.
My brain injury left me with left-sided neuromuscular weakness. I also use a knee brace on my left leg to assist me in walking because without the brace my knee hyper extends. I have limited mobility in my left shoulder, making tasks such as washing my hair very difficult. Think about this: you have a nice bowl of cereal and your belly is rumbling from hunger and you dig deep into the bowl with your spoon and get a heaping spoonful of “scrumdilliumptious” cereal, but by the time it reaches your mouth you have nothing but the shiny spoon you started with.
Let me tell you something about those darn intention tremors. Intention tremors affect my fine motor skills when I desire (intend) to do something as common as writing a note, picking up a cup, and, yes, trying to eat my favorite cereal. My hand starts to shake. The more and harder I try, the shakier my hand gets, resulting in scribbled notes, spilled coffee cups, and ending with the contents of my spoon all over me, leaving me embarrassed and defeated.
One positive aspect of recovering from a TBI is the people I get to meet. I’m referring to my survivor friends. I find comfort in knowing other survivors have been through what I am going through and their successes are my hope. Most kids go to college or work. My work has been my continued work on myself. I thought I would be in college, driving, dating, and busy like all my friends. I’m working on getting there too, but like everything, it’s just going to take me a lot longer.
Life is definitely hard, and one of my driving desires that inspires me is to educate people about how damage to the brain affects personality, thinking, and physical abilities. For example, did you know that another common struggle with living with a traumatic brain injury is initiation? Many people may not realize that the brain helps us become motivated. When that part of the brain suffers trauma, motivation can be difficult at times, which makes it extremely difficult to want to do anything.
Please join me as I continue my journey through TBI. It is my hope and ambition to become a local spokesperson for the general education of the public to what TBI is and how people are affected by it.
Please friend me on Facebook, follow me on Twitter (@thecomebackkid), or email me.
(*A version of Jordan’s story originally appeared in the Windham Eagle.)
As a reward for earning my Eagle Scout rank at the age of 15, my father and grandmother gave me a new car—a brand new silver Monte Carlo SS. It was the year 2000. On the afternoon of October 4 of that year, I went for a drive with two friends, Mike and Jared, Mike in his Saturn and Jared with me. As 16-year-olds too often do, we got involved in a game of chase that would change my life forever. Coming out of a curve on a narrow country road, I tried to pass Mike, but went off the opposite side of the road, over-corrected and slid sideways into a large tree, with a direct impact on the driver’s side door, and my head. The accident report said I was traveling at approximately 108 MPH when I lost control. If there was one fortunate outcome to this accident, it was that Jared was somehow not hurt.
I was transported to Maine Medical Center (MMC) where the trauma team, including my neurosurgeon, did not believe I would live, however, after 15 days in the ICU I was stable, but in a coma and dealing with the onset of meningitis and a fever so high I required ice packs and a cooling blanket. Five and a half weeks after the accident, I developed life-threatening hydrocephalus that required the implantation of a shunt, and which also was the beginning of my emergence from the coma
Almost immediately, I began acute speech, occupational, and physical therapy, which occurred twice every day for the remainder of my three-month stay at MMC. All that I remember from my stay in Barbara Bush is asking the physical therapist why he was helping me. I thought he was working with me as punishment for a crime. During my hospitalization I experienced my first tonic clonic (grand mal) epileptic seizure, which further complicated my recovery, and remains with me to this day, though fortunately it is under control and I have been seizure-free for several years.
Following discharge from the hospital, I began a year of outpatient therapy at the Brighton Rehabilitation Hospital, which towards the end included learning to drive again, a goal I had set for myself and which kept me focused throughout those long months of rehab work. On the day before the first anniversary of my accident, I passed the Maine driver’s road test and received my new license. During my outpatient rehab, I was able to return to school on a limited basis, and thanks to credits already earned and the incredible support of Windham High School’s teachers, special education staff, and my mother’s tireless commitment, I was able to graduate with my class in May of 2002.
I attended the University of Maine Augusta’s art program for a year. Then I enrolled at Mitchell College in New London, Connecticut, to take advantage of their special programs for students with disabilities. I returned to Maine after a year there and enrolled in the UMA’s art program again, with a concentration in photography, and in 2014—12 years after starting college—I was awarded a bachelor of fine arts degree. I have also taken classes in video production at Southern Maine Community College, and continue to look for opportunities to further develop my skills in photographic and video art.
Throughout this long journey I have had to deal with periods of breakthrough seizures, depression, frustration, and disappointment, but also uplifting successes and joys. I am thankful for the support system of my family, but worry about having my own independence from them, and at the same time, what will happen when they are gone. One of the most difficult things at this point in my life is my inability to find employment that is both rewarding and at the same time accommodating of my disabilities.
I have memory problems, especially short term, and have to learn things at my own pace, often several times before I can get them down. But unfortunately businesses today do not seem to have the time, patience, and understanding that is necessary when working with TBI survivors. I continue to look for meaningful employment through State of Maine Vocational Rehabilitation Services, but in more than two years of trying, nothing has yet worked out.
I also participate in programs at the Krempels Center (a brain injury survivors’ program in Portsmouth, New Hampshire), Maine Adaptive (formerly Maine Handicapped Skiing and other outdoor programs), volunteer with the Windham Historical Society, and pursue my photography. I recognize that my recovery would not have been as good, and I would not be where I am today, if not for the hard work, dedication, and support of dozens of teachers, medical professionals, TBI survivors and friends, and of course my family.
Before her brain injury, Shara Lawhorne was the picture of health and activity: she was very active, a vegetarian, and rode her bike everywhere. She worked with fire and safety patrol, coordinated shows and art festivals, attended University of South Florida, climbed Machu Picchu, managed a health food store, and was a gymnastics coach.
One day while riding her bike to work in the pouring rain, Shara was hit by a motor vehicle. While she doesn’t remember much from the immediate aftermath of the accident, she remembers the rain on her face as she went down the hill and then she remembers floating through the air and people all around her in the street. The driver of a minivan had struck her head from behind – with the vehicle’s mirror – at 45 mph.
As she lay in the road, Shara had what she describes as “an experience.” Though prior to the accident, she didn’t really believe or not believe in Jesus, she clearly remembers being at the bottom of the hill and seeing Jesus to her left. She doesn’t know exactly how she knew it was him because it didn’t really look like him, but she was climbing the hill with a backpack and he wouldn’t let her go by. He kept telling her to go back down the hill and so she walked down switchbacks to get to the bottom of the hill where there was an enormous clearing the size of 20 football fields. There people were standing like a choir and they were different beings, different colors, and they vibrated and she heard the most beautiful music. She felt reassurance, peace, and bliss for just a second in her gut and then she woke up.
Shara was in paralyzed and in a coma immediately after the accident. She then had a stroke while in the coma and lost function on her right side (which was, of course, her dominant side). Shara had to relearn everything, and eventually transferred out of the hospital to a transitional living center.
Living in New Jersey after the accident was way too much stimulation (there was so much traffic, rush hour, strip malls everywhere) and Shara felt like she could no longer live there. She had family in Maine and decided to give life in Maine a try. For many years, she lived up on a 40-acre, self-sufficient property in Lincoln. She has lived in Bangor for the last eight years.
Shara continues rehabilitation and is working on a degree through the University of Maine Augusta in Bangor, a Bachelor’s in Science in mental health, with just an internship left to complete.
One of her biggest current projects is Pets for Farmer Vets, which is operated by United Farmer Veterans of Maine, a volunteer, non-profit organization devoted to supporting veterans in Maine. They are located right next door to Shara and one day she contacted them about volunteering. They had just started the program and needed someone to oversee it, and now Shara is the primary contact for the program.
Pets for Farmer Vets works to match companion dogs (these dogs are not service dogs yet, but they can become service animals in the future if desired) with veterans who have post-traumatic stress disorder (PTSD) and traumatic brain injury (TBI). Veterans interested in participating in the program go through an intake process, get interviewed to determine the best match, and then are connected with the Bangor Humane Society. All of the dogs are rescues and the adoptions are provided free of charge for the veteran: the dogs are spayed/neutered, vaccinated, the adoption fee is waived, and the veteran and their companion dog are also provided with six weeks of obedience training.
Since November 1, 2016, Pets for Farmer Vets has matched five Maine veterans with companion animals. In March of 2017, the organization held a successful fundraising event, which raised $2000 to build a storage locker for all of the pet supplies needed for the program.
Interested in the Pets for Farmer Vets program? You can reach out to Shara at 207-431-0472 or visit the website: http://ufvme.org/pets-for-farmer-vets/.
I can’t be more thankful then I am right now! It has been just over a year now since my brain injury happened. I have been through many ups and downs as a result of this experience. Thankfully, I have had the most amazing support system: from taking me to therapy, to doctors’ appointments, to parties, playing games with me, going on walks with me, or just a friend to talk to.
Over the past year, it has been a learning experience. Before my brain injury, I would work to keep myself busy. Since my favorite thing to do was work, I worked three part-time jobs as a bartender and a server. I loved being able to talk to tons of people. I believe this is what made me love my job so much. Unfortunately, with the brain injury I received, talking to people I don’t know has been difficult. It is now hard for me to just talk to someone I don’t know or don’t know too much about.
So what happened? I got into a severe car accident, and I lost my license due to the accident. Thanks to this experience, I have had to rely on my family and friends to bring me wherever I need to be. This is hard because before my accident, if I got tired of the place I was, I would just go for a drive. Now I have to wait until whoever is driving me to be available to bring me wherever I need to be. It’s hard because I never had to wait on anyone before and I could go or do whatever I wanted. Although it has been a traumatic experience for everyone who knows me, I would like to give a special thanks to my family, friends, boyfriend, boyfriend’s family, and especially my bosses.
I can’t even explain how lucky I am to still be here and not only that, but how well I’m functioning. The doctors didn’t even think I would be doing this great. I had to learn how to eat and drink again, how to walk again, and I still struggle a little with my left arm and left leg, but it’s much better than it was. I cracked just about every bone in my face, including my nose. I broke my foot, my ankle, my leg, my pelvis, a bunch of ribs, and tore the skin off my left knuckles. And, I got this brain injury.
A lot of people ask me why I’m not as emotional or upset with life. Yes, I am stressed I can’t drive or work, but I’m extremely lucky to still be here. My car accident was a life lesson but part of me is happy it happened. I feel like I learned a lot more than I would have before. I realized my support system is amazing and I have made new friends. Seriously, I can’t thank everyone enough.
If I have learned one thing, it is that drinking and driving and speeding is not worth it. I always drove too fast, and I’ve cracked up my car a few times before. I had bought a brand new car the year before and now it is totaled. I will never drink again, because of the problems I have gained from the experience. I gained a brain injury, one of the many things I received, but I have relearned how to do everything. It has been a long and hard lesson, but worth the experience to me.
The biggest thing I have learned from this is I am going to share my story with everyone. If I can help someone change their decision about drinking and driving and about speeding, I am going to do it. It is not worth the lesson. I know in high school they told us not to drink or drive, but they didn’t really tell us or show us why. I am going to be that person! The main thing I hope you get out of my story is if you need help or a ride, call someone!
In 2003, Rorie Lee and her husband Ross Goldberg realized their dream of moving to Maine and buying a house in Scarborough as Rorie started a position as a medical education specialist and family medicine residency assistant program director.
Rorie grew up in northeastern Pennsylvania with six siblings. Her father was an elementary school teacher and principal. She herself has always been involved in education: she has taught in public schools, graduate education programs, and has over 20 years of medical education experience. In addition, she holds a bachelor’s in English and a Master’s in Education from the University of Pennsylvania, and a Master’s in Public Health and PhD in health studies from Temple University. Rorie was always well organized, high functioning, and spent her life meeting and exceeding expectations.
On March 12, 2008, Rorie was supposed to head to Gorham for a presentation. Before leaving, she went to take the dog out and grab the paper. Despite wearing ice traction devices over her boots to prevent slipping, both she and the dog fell. Rorie woke up lying in the driveway, unable to move. She could hear the dog and feel him breathing on her face, but she couldn’t see anything. It took her a long time to move and roll over. Her entire focus was on getting back to the house because she knew Ross, who is self-employed, was on the phone and would have expected her to have already departed for work. If she didn’t make it back to the house, it could have been hours before she was discovered.
Rorie followed the dog and crawled up the driveway, struggling to open the front door. She told Ross that she had hit her head. Her left hand was black and blue, she couldn’t find her glasses, and as she sat on the couch she kept sliding to one side, unable to sit up straight. In her mind, she tried to go through everything she would need at the hospital (ID, insurance card, etc). She spent the day in the Emergency Department, where they told her that she “just” had a concussion and should go home, rest and to follow up with orthopedics regarding her broken fingers.
Pressured by her supervisor, Rorie returned to work two days later. She struggled immensely and doesn’t remember much of that spring. She had to type with one hand due to her fractured fingers, and she remembers spending long hours at home trying to catch up on work projects, but never managing to get there. She could no longer prioritize tasks, getting dressed was difficult, and trying to initiate work projects was extremely challenging.
In December, Rorie’s neurologist sent her to New England Rehab for a neuropsychological evaluation. The test was painful, frightening, and overwhelming, but at the same time it was comforting because the results validated all of the challenges she was having. She could not walk in a straight line, she had residual balance and vision issues, hearing challenges, trouble with initiation and attention, and more. Where she had always been highly organized, she now couldn’t pay bills, had to check and recheck everything, and became obsessive about reviewing things over and over again. Rorie’s whole sense of self had been tied up in her professional identity and she was having trouble reconciling these changes, so she started seeing a psychologist to help her come to terms with her new life.
At the time, Rorie was one of the instructors for the University of New England and Maine Medical Center’s online master’s program in medical education. She worked part-time on short-term disability and a couple months of long-term disability before the insurance company declared that she could work full-time with accommodations. Rorie continued going to speech therapy and the local brain injury support group while trying to manage work. After her employer discontinued her accommodations without notice, started the disciplinary process for dismissal, and hired someone else with the same position description but a different title, Rorie left work permanently. She was told she could apply for unemployment and was kept on as an inactive employee for a few months while she looked for another job within the organization. Eventually Rorie and Ross were unable to afford the COBRA insurance payments.
Losing so much of her self-identity and financial security as a result of her brain injury was a humbling experience that shook Rorie to the core, but she has come out on the other side with a different and positive view. She is a better and happier person now, she says. Joining her local support group enabled her to connect with other survivors, which allowed her to understand and move forward.