2015 Maine Survivor Stories Archive
December 31, 2015
My name is Catherine Breese I am a 37-year-old woman. I was a dental assistant for over a decade. I have a life partner named Mike; we have been together for nine years. We own a home together and have two children, a son who is 6 and a daughter who is 8.
Have you heard the Wizard of Oz story? Did you know that story was about me? I was home in Kansas with my little dog Emma. A storm was coming. I had a sense of dread and panic come over me. I collapsed and when I woke up, I wasn’t in Kansas anymore! My house, my dog and I were in Oz, a.k.a. the hospital. The house had landed on the first witch, which was aortic dissection, which is when the largest artery from the heart splits apart. This happens mostly in men ages 40-70 with high blood pressure and smokers. I am not a male or smoker, nor do I have high blood pressure. In fact, I ate very healthfully and ran every morning with my dog.
My aorta was repaired and that’s when I met the Tin Man. I received a new heart valve, which was metal and ticked like a clock. I embraced the Tin Man and we traveled along the yellow brick road for a while. I thought the Tin Man and I were doing great on our journey together. I thought he and I would be together forever, but the witch had other plans for us. She sent off some flying monkeys, a.k.a. strep bacteria, to stop us on our journey of recovery. Those flying monkeys ripped us apart! Attacking joints and my new heart valve, a piece of infection came off this valve and made its way to my brain, which cut off blood supply and caused a stroke.
This was when the Tin Man and I met the Scarecrow, which was my stroke. He couldn’t walk well or remember things. He was a good-natured fellow so we welcomed him to join us on our road to recovery. My metal ticking heart valve was removed and replaced with a donated, real-person valve, so it could no longer collect flying monkeys if they were to attack me again. We met another friend on our journey. He was trying to be brave but he was getting overwhelmed. I embraced the Cowardly Lion and asked him to join us on our journey. How could he be afraid in our little group of friends? We helped him to be brave and together we skipped and sang along the yellow brick road.
I was Dorothy who just wanted to go home but we ended up in the poppy field that put us to sleep delaying our journey of recovery. On the Fourth of July, my family and I were going to watch the parade. Mike was pushing me in my wheelchair and we hit a bump and I flew face-first into the sidewalk! One of my front teeth came out! I was horrified! Blood everywhere! Luckily, I am a professional and knew exactly what to do! I oriented my tooth the right way and put it back in! Emergency room here I come again! I had a broken nose and they stabilized my tooth by putting some putty on it to hold it in place. I went to the dentist later and needed two root canals because two of my teeth died. I got my root canals done, plus they bleached the inside of my teeth to match my other ones. My other tooth reattached itself.
After Glinda the good witch woke us up from the poppy field, we continued on our yellow brick road of recovery. Being happy and positive is very helpful in your journey. You are with yourself all of the time. Recovery doesn’t stop when you go home. It can continue there as well. Many of the stretches that are shown to you in therapy can be done at home. Think about all of the things that you would like to do again and ask your therapist how you can reach that goal. Think about your recovery and get involved! I like to test drive my new body to see what it can do. It does not perform the same way my old body did, but with practice, I can make it work.
Traveling on the yellow brick road, the witch appeared again! She set the poor Scarecrow on fire! I had been feeling great and confident on my feet. My little dog Emma had ripped up some paper and made a big mess! Me, with my stroke brain, a.k.a. Scarecrow, went to vacuum it up Thinking I could use my vacuum as a cane I fell on my left side and broke my hip. The witch had set the Scarecrow on fire but Dorothy threw a bucket of water to put the fire out and melted the witch, defeating her. Another trip to the hospital! This was wonderful! More therapy! I got a walker, which forced me to continually weight bear through my left arm and hand.
After my stroke, I had a choice to make about what to do with my left side. I could ignore it or believe in it. I chose to believe in it! I called it my sleepy side when I have heard many people call it their dead side. Calling it dead leaves no hope for recovery, but sleepy means it will wake back up. Word choice is important. Since day one, I have used my left hand to steady my toothbrush while putting toothpaste on it, or putting silverware in it while washing dishes. I talk encouragingly to that arm and leg. Doing things one-handed is hard, but it can be done! The first time I tried putting on my socks was extremely frustrating! It probably took me an hour. I cried with frustration, but I learned little things along the way, like your feet must be very dry and baby powder works great to make slippery feet and legs! I broke down a lot in the beginning, but I eventually got better and faster. Practice and patience are needed in abundance! You only have one body so you have to make it work for you.
After my stroke, I would increase my stamina by not taking naps and standing as long as I could, once I started standing. I was exclusively in a wheelchair for a long time. Then, the therapists started putting me in the standing frame. I hated it because it was scary; I used to call it the rack because I thought it was torture! I remember the first time I moved my left leg. I cried because I was so happy! It was an amazing day! I told EVERYBODY! I was the happiest girl ever! Moving my leg was my first big accomplishment. All of my therapists told me that weight bearing would make it move and it did! I had decided that this would work the same for my left arm! What better way to weight bear through my left arm than to get on my hands and knees? My poor therapists were like, “What do you want to do?”
That was when the looks they gave me changed for the better. I started taking a more active role in my recovery. Being on my hands and knees isn’t just about getting my arm back; it’s about getting up from the ground or floor after a fall. I fell in my kitchen on May 6 while I was making a sandwich. I sneezed and lost my balance and fell on my butt. I got on my hands and knees and managed to get my feet under me and stood up. Not hurt at all. Although I am a professional faller, I am also a motivated patient!
Recovery is my job now. I am with this body all of the time and think about all of the things that I used to do and try to do them now. Always believe in yourself; you are your own biggest fan and supporter! Don’t let little things discourage you from your goals.
I am Dorothy who has finally made it to the Wizard. The Wizard didn’t give us anything that we didn’t already have. The Tin Man, aortic dissection, was the most sensitive and he was easily repaired. He rusted stiff a few times, but was quickly put back on his way with the use of the oil can. The Cowardly Lion was much braver than he thought. The Scarecrow learned how to get along without a brain and his walking remained awkward but he managed just fine. I returned home with the joyful memories of my traveling companions. There is still a lot to do to bring my new friends up to speed on life on the farm. The Scarecrow will live with me for the rest of my life, I just need to find a way to incorporate him into my world. Luckily, the Scarecrow is a positive fellow and willing to try new things and different ways to do them. The Scarecrow is my stroke and I look at him like a new friend, not like a burden. You have the choice. Get along with your new friends or fight with them. Choose friendship and love for a smooth, happy road to recovery.
At the age of six, Troy Morgan suffered a ruptured aneurysm, spent six weeks in a coma, and was left legally blind. Three years ago, he suffered a stroke and he has utilized poetry as a healing tool. Here is one of his poems:
My Journey to The Top
I must have been lost
When trying to heal,
While making a change
I was cut a raw deal.
We all have our barriers
When trying to climb,
Mine knocked me down
I then fell behind.
But with my attitude
Positive, no doubt,
I began to wonder around
To think things out.
There must be a reason
I can’t climb to the top,
Once I’m half way
Someone yells, “STOP!”
Even though, I was blind
And now I can barely see,
I know somewhere in my pocket
I must somewhere hold the key.
That will unlock those doors
So that I can find my way,
To where there are no barriers
That will be the day.
It all started in 2005. We had just gotten engaged and I was noticing a flashing in the lower left-hand corner of my eyes, known as vision seizures. My PCP sent me for an MRI and found that I had a brain tumor. I was sent to Mass General in Boston to see a specialist. The tumor kept growing and we were told it needed to be removed before it was too late.
I mentioned to my new wife-to-be that if she wanted out because of circumstances unknown, that I would understand. She said, no, that we were in this together and she has been there right along the whole way. We married August 23, 2006, and she is the most loving, caring wife and caregiver I could ever ask for. And I know it was harder on her than I. A caregiver and support system is of most importance to get through a TBI or ABI.
On April 9 2009, I had the operation that changed my life forever. The following evening I developed two brain hemorrhages, one each, on the back left and right side. I was in the Boston hospital for ten days, and for the first three, I was completely blind. I didn’t know where I was, who was there, or what had happened. It was scary, for sure. I later learned that my loving wife was there all along.
I was transported to a local hospital where I had only a week of rehab. In that week I saw or imagined there were large holes in the hospital floor, things flying around, and the tops of tables peeling and so on. It kind of freaked me out. I was sent home until I could be start rehabilitation.
While waiting at home with constant care, it was very difficult for me to accept what was happening to me. I only saw half of things, like peoples’ faces, because I had lost my left peripheral vision and could only see half of everything in both eyes. I couldn’t read, write, walk, or talk very well and had memory problems. I had to learn these things all over again. I didn’t know if I was ever going to get better and contemplated suicide. I just no longer wanted to be like this.
A few months later I got into rehabilitation and things started to get better very slowly, but I was making progress. Learning all over was troubling at times and I would get very frustrated at myself and at others sometimes for not understanding what I was going through and what was going on inside my head. Sure, I looked normal, but I sure as heck didn’t feel normal.
I lost my ability to drive, which has been my biggest loss of independence. Of anything, this I miss the most. People that I worked with and those I thought were friends are not in my life like they used to be. I’ve become more sensitive, and look at life differently. I cherish every day, good or bad.
I don’t know if I have gotten used to me being the way I am or if I have improved some. I guess a little of both. I’m very grateful I didn’t take my life when I was at my worst. There is so much to live for, especially family.
I’m doing the best I can now and I realize that if you think you have it bad, well, there is someone out there worse off than you. Yes, every day is a challenge, people that don’t know your story can be cruel, and my new life is a new journey that has a lot of unknowns, but that’s okay. I have a new family of friends with TBI and ABI. They understand me as I do them.
My brain tumor has started growing again and recently I had proton radiation done, which hopefully will stop the growth. I’m not going to let anything get in my way and stop me now. I’ve come a long way and I do whatever I can and I’m up for the challenge. I clean house, cook, keep up the yard work, cut wood, build wood projects, fish, and so much more. My goal is now to help others with disabilities and Veterans.
I have had eight heart attacks, died twice, neuropathy, two strokes, A-Fib, diabetes, blindness, and I am unstable, but it will take more than that to stop me now.
One must never give up after having a TBI /ABI, as there is so much to live for. If you fall, get up and move forward. Live, laugh, love; it will get better. It won’t be perfect, but what is?
Carole Starr is a Maine native who grew up in South Portland. For much of her life, Carole loved teaching and performing; she was a freelance teacher with a Master’s in Adult Education, a freelance grant writer, and a musician, having played the violin for 23 years. She loved everything about classical music including rehearsing and performing
On July 6th, 1999, Carole was driving for work and was hit broadside by someone going 50 mph. She remembers the sound of metal on metal and then lost consciousness as the car spun and the windows shattered. As she regained consciousness, there was someone yelling, “Get out, get out!” She climbed out of the car and did not feel any pain at the time but was dazed and didn’t feel “right.” An off-duty paramedic had her lie down in the median until the ambulance arrived.
In the Emergency Department, Carole was told she had whiplash and was asked if she had hit her head. Having no recollection of it, she answered “no” because she didn’t realize at the time that her memory was discombobulated and missing pieces. When Carole had the opportunity to read the accident report, she would start to realize just how much of the accident was missing from her memory.
It would be six weeks before she was told she had a brain injury and nearly a year before she received any brain injury rehabilitation. To this day, she wishes the emergency personnel had asked different questions.
That year after the accident was the worst of Carole’s life. Everyone kept telling her that she would be fine and she continued trying to go back to work and music. Two hours of teaching would put her on the couch for two days, she no longer knew what she was doing, and she could not remember her students’ names. She couldn’t follow her own lesson plans and when she looked over them, it was as if they had been written by a stranger.
The first time she opened her violin case at the orchestra after the accident, a string was broken and she had no idea what to do. Though she’d had the same seat in the orchestra for ten years, she could not figure out where to sit. She lasted five minutes at that first rehearsal and someone had to drive her home because she knew her address but could not remember how to get there. Everything sounded excruciatingly loud and her extreme sound sensitivity prevented her from being in a room with any sort of music.
For a long time, Carole blamed these challenges on the pain medication she was taking for her physical injuries from the accident, but the symptoms persisted even after she no longer needed the pain medication. She thought that if she tried hard enough, she could make her brain injury go away, and there were some people in her life who did not believe that her brain injury was real. Not being believed was devastating to her.
With help from medical professionals, family, and friends, Carole slowly learned strategies to cope with her brain injury and adjusted to life with a disability. She was unable to return to her teaching career or music. She has reinvented herself as a brain injury keynote speaker and the leader of the survivor group Brain Injury Voices. Carole first started speaking about brain injury in 2003, when she participated in a workshop organized by her mentor, national brain injury speaker and author Beverley Bryant. In 2006 and 2008, as a member of the brain injury support group at New England Rehab Hospital, Carole organized and spoke at evening workshops for survivors and families. That led to the invitation to deliver her first keynote. In 2009 she gave her “Never Give up on Happiness” speech at the BIA-Maine conference.
Carole benefited greatly from being mentored by Beverley Bryant. During one of their many lengthy conversations, Carole and Beverley talked about how there were a lot of folks in the support group at New England Rehab who had moved beyond needing support and were ready to offer it to others in a more formal way: thus the seed was planted for the formation of Brain Injury Voices (BIV), a Maine brain injury survivor group based in Portland. As Carole put it, “We wanted to use our experiences to make a difference.” Nine people attended the first meeting in 2010.
When she first co-founded BIV with Beverley Bryant, Carole had little idea of what it could become and how much good the group could do together: the power of survivors working together is stunning and something that none of the members would be able to accomplish individually. Their mission is three words—Educate, Advocate, Support. BIV now has 12 members and is looking to help form other groups like BIV. They relish the opportunity to give back and pay it forward, and their stories and insight are valuable to both brain injury survivors and professionals. Their website is www.braininjuryvoices.org
Over the last 5 years, BIV members have volunteered more than 9100 hours, completed more than 800 peer-mentoring sessions, gave more than 100 presentations, workshops, and keynotes, and raised more than $19,000. In addition, BIV won the prestigious Hospital Award for Volunteer Excellence from the American Hospital Association in 2014.
On October 20, 2015, Carole Starr will debut her new keynote, “Weasilience”: Handling Life’s Wild Moments, for the Beverley Bryant Memorial Lecture at the 6th Annual Conference on Defining Moments in Brain Injury.Carol Rohl first came to Maine in the 1970s to attend a course at Outward Bound’s Hurricane Island, a remote island in Penobscot Bay about 75 miles northeast of Portland. Originally from Chicago Heights, IL, she attended Carroll College (now Carroll University) in Wisconsin where she majored in social work.
During her time with Outward Bound, Carol fell in love with the Maine coast and she went on to work for Outward Bound for seven years, eventually getting her Coast Guard license so that she could run boats for them. She would spend six months of the year on Hurricane Island and then spend winters working in Colorado at a ski resort; over the years she held many outdoors and sailing positions.
Beyond the great outdoors, music was Carol’s other love. She played piano and sang and learned the folk harp. In the mid-80’s she met Gordon Bok, another local folk musician in the Camden area, and the two eventually married. Carol had built a beautiful house in Warren with her own hands, a lovely place where she hauled her own water and tended beautiful gardens, and Gordon had a wonderful place in Camden, so they decided to keep both houses. They traveled all over the country and world together, including New Zealand, Australia, and England, often performing together.
In September of 2004, Carol suffered a debilitating stroke. An ambulance transported her to the local hospital and then Life Flight flew her to Maine Medical Center in Portland. She had lost the motor function on her left side and spent six weeks at New England Rehab. When she returned home in November, living arrangements were one of her biggest challenges.
Though Carol longed to return to her home in Warren, it was clear that could not happen immediately. Gordon’s house was very small, so they ended up staying with Gordon’s step-mother for a time, and then moved around a bit while Carol recovered. When Gordon needed to travel to Alaska for touring commitments in the weeks after Carol’s stroke, Carol’s sister-in-law and parents came to stay with her at different times.
Family and friends offered continuous support during Carol’s recovery, and the highlight of many of her days was receiving mail. She recalls that one long-time friend wrote her every 2-3 days and, knowing how much she loved flowers, each card displayed a watercolor drawing of one of the state flowers. Continued support through letters and cards made all the difference in the world on the days when visitors were just too much and especially after the shock and rush of the initial event had worn off.
It would be two years before Carol would return to live at her home in Warren. Carol and Gordon worked hard to make changes to the house so that she could maintain her independence. They designed and built a chute so that she could continue to haul her own water and constructed railings to increase her safety and tackled each challenge one by one and with great ingenuity.
Transportation became another concern. Though she felt comfortable driving a vehicle a year and a half after the stroke, the process of driving became too much with having to park, walk, carry items, etc. Carol is very fortunate to have an amazing support system, which enabled her to sell her car and no longer need to shoulder the burden of driving.
Through all of these challenges, Carol has learned so much. She spent a lot of her life helping others, and now is on the receiving end and has learned to ask for help when she needs it. She has also learned to pace herself, using a dear family member’s analogy that you start the day with so many quarters in your pocket energy-wise, and you have to be careful how you spend them. As a result, friends will often ask her, “How are your quarters holding up?”
Carol still loves to garden, and she has spots every 50 feet or so where she can stop and rest. Rather than spending a lot of time working on the garden, she now enjoys to just spend time there. She has planted perennials that mostly take care of themselves and works on it little by little as she has the energy.
Every day poses its unique challenges, but Carol is still gaining strength on her left side and making improvements in hand strength and gait. She continues to attend physical therapy and keeps pushing her limits, frequently asking herself, “Can I do this with my left hand?” Carol’s perseverance and vivacity of spirit are evident in every aspect of her life, especially her beautiful gardens and home, and she refuses to let the challenges of her stroke prevent her from living her dream.
Even at a young age, Debbie Walker was no stranger to challenge. At 13, she developed juvenile macular degeneration, which left her with significant visual impairment. Though she was still able to read to some degree, her mother was integral in enabling her to continue her education through high school and beyond, whether it was reading aloud materials or writing them larger so that Debbie could read the words herself.
With her mother’s continued support, Debbie went on to graduate from the University of Maine at Presque Isle with an associate’s degree in criminal justice before continuing on to the University of Maine at Farmington, where she received a bachelor’s degree in rehabilitation counseling. During this time, she worked closely with the Special Olympics, even attending the International Special Olympics as an ice skating coach, and she looks back on those days as some of the best of her life.
On April 21, 1996, at the age of 39, Debbie suffered a stroke and found herself in the ICU. Doctors determined she was suffering from vasculitis and performed brain surgery on the right side of her brain. The stroke left her paralyzed from the neck down and able to speak, but not very well. Eventually her strength and function returned on her right side, but her left side was slow to follow and she remained in intensive rehab until October of that year.
Debbie worked very hard at her rehabilitation; anything that her providers thought she couldn’t do, she put all of her energy into in an effort to get back home. Basic tasks were challenging, and she had to relearn how to brush her teeth, drink from a cup without spilling, and walk. Another unexpected result of her stroke was the need for two hip replacements down the road, due to steroid-induced bone deterioration.
After her stroke, Debbie desperately wanted to return to work as an activities director, but was no longer able to keep up with the fast pace. In addition, she went from being very social and extroverted, to suddenly being temporarily very introverted, which required a huge adjustment on her part. One of Debbie’s biggest challenges continues to be overcoming her deficits in executive functioning, like focusing, problem solving, and memory.
In September of 2007, Debbie went to lunch one day and couldn’t figure out what to do with her fork. She had also had several recent falls, but up until that point hadn’t given them much thought. Given her history, a friend insisted that she go to the hospital. After some tests, she was informed that they had found a mass in her brain.
After meeting with a neurosurgeon, Debbie learned that she had a benign meningioma (a tumor that arises from the meninges, the membranes that surround the brain and spinal cord) at the top of her brain stem and that she needed surgery. She was devastated at the thought of another brain surgery and the potential complications, but also at peace with the fact that the situation was out of her hands.
In addition, Debbie had a family cruise to Bermuda scheduled for the following week. When she inquired about whether she could still go, her neurosurgeon told her to go and have a good time and that they would do the surgery as soon as she returned. So, Debbie went on that cruise to Bermuda and had a blast!
It was tough to return home, as she knew what was coming, but her neurosurgeon and his team worked with her to make the surgery as minimally stressful and disruptive as possible, including Debbie not seeing her surgeon in his operating room attire, being able to have friends and family close by up until just before she went into surgery, and not being awake when she entered the operating room.
While recovering from this second brain surgery, Debbie found herself excruciatingly sensitive to light and sound. She recalls that during her initial days of rehabilitation, the sound of a trash bag being shaken out was the most disturbing noise she had ever heard in her life. Thankfully, these sensitivities improved over time.
Over the years, Debbie has worked with autistic young adults, juvenile delinquents, battered women, and with the homeless through the Bread of Life program, in addition to being an advocate and educator for the visually impaired community. She was the Activities Director at Walter’s Home in Hallowell for ten years and she truly has a gift for helping others.
Nowadays, Debbie is involved with many local organizations. She is on the program committee of the Rainbow Club, a local educational and social group for visually impaired and blind adults, and also attends Blind Bowlers gatherings, a social group that meets twice a month and has big bowling and cribbage tournaments. Debbie is also greatly involved in the brain injury support group in Augusta and talks with people one-on-one as a mentor.
Debbie also never lost her love for learning and continues to find new ways to explore and expand her knowledge. For the last eight years, she has been attending classes at Senior College in Augusta, including art classes and traveling classes (her favorite of which was a “waterfall” class where the students visited different waterfalls all over Maine). These classes are exciting, inexpensive, and a great way for her to socialize. Debbie has also taken cooking classes at the local hospital, including culinary topics such as diabetic cooking, stews and soups, and Italian cuisine.
Debbie credits the wonderful support from her family, friends, and church family, as well as the doctors, nurses, and rehabilitation staff as a big part of her successful recovery. She also strongly encourages everyone to listen to Celine Dion’s song, “Because You Loved Me,” every line of which resonates with Debbie. While acknowledging that there are still many challenges ahead, Debbie continues to find joy in learning and helping others, and her hard work and determination are an inspiration to us all.
I had been living in South Berwick, Maine, and at the time I was a self-employed handyman by trade. In late 2006, I had been having chest pains for a month, from what I thought was only a chest cold. Then, on November 3rd I went to the Emergency Room of York Hospital, where later I had a heart attack. Days later I was transported to Portsmouth Regional Hospital (PRH) where I underwent open-heart surgery.
Due to complications, I was then transported to Tufts Medical Center in Boston, Massachusetts. At that time, they redid the surgery. During that second surgery I suffered two debilitating strokes, which landed me in a coma for two and a half weeks. During my coma there were times of hearing strange voices talking about cabbage. I wondered why they were talking about cabbages; after all, what is the big deal with cabbages? Then, much later in my recovery I learned that cabbage is a medical term which really means: “Coronary, Artery, Bypass, Graft” (CABG).
When I did finally come out of my coma, I was surprised that it was almost Thanksgiving Day already. At that time I remember waking up in a strange place with strangers nearby. I had no feeling below my elbows and knees, as well as no use in my hands and couldn‘t speak. I could only hear people if they were facing directly towards me. Then, one day as my two neurologists were leaving, one of them posed by my bed just long enough to say, “You’ll be lucky if you are confined to a wheelchair for the rest of your life.”
During the next two and a half months I remained in a vegetative state. After two months at (PRH), I was then moved to New England Rehab (NER) in Portland, Maine. There I began intensive physical, occupational, and speech therapies. When I first arrived at NER I couldn’t feed myself and I had to be lifted in and out of bed with a lift that was bolted to the ceiling.
After many OT sessions my OT would have me try to support myself enough to stand with the use of a walker. He was only doing it to strengthen my arms to stabilize myself with that walker. One day while having me do that exercise, I told him that I wanted him to help me walk again. He replied, “I understand that you have no feeling below your knees. Is that right?” I answered, “Yes!” Then he informed me that, “Because you have no feeling in your lower legs, you won’t be able to learn to walk again.” I was devastated. So I frantically realized that if I couldn’t come up with a very good reason to get him to at least try to work with me on this, that I would not gain any future opportunities to walk again.
With much persuasion I finally convinced him to think outside of the box in my case. (Thank God for finding the encouragement to become motivated). During the next two months my OT took time out of each session to also work on my walking. By the time