BIAVT_Walk & Roll_Steps 4.jpg

SURVIVOR STORIES

Below you will find real stories from real people who have 'been there' as far as brain injury goes. If you would like to have your story considered for display, please feel free to contact us at (877) 856-1772 or e-mail us at support1@biavt.org.

Charlotte’s Journey

Charlotte 1.png

A Mother’s Story by Karly McConnell

Charlotte 2.png

April 1, 2014, while leaving work from a childcare center with my son Micah (5) and Charlotte, my daughter (2.5). We crossed the road to our parking spot holding hands and talking. I let go of their hands only long enough to slide the door open but long enough to change our lives forever. Charlotte took a step back just as an SUV was passing. Driven by a college student at about 25mph the side of the car struck Charlotte and she was tossed up towards the front of my vehicle. Motionless but breathing, eyes open, no blood, in that moment the town stood still. In less than five minutes, help was on the scene, Charlotte was intubated and transported to the local hospital. Once stabilized she was transported via helicopter to Dartmouth Hitchcock where she could be better treated. I sat beside my daughter in her hospital bed for fifteen days before spending the next two months at Spaulding Rehab Hospital. Newly divorced and now a single mom I needed to stop working to be there for Charlotte. My parents helped with my son and I only traveled home from the hospital when my ex-husband could spend time with her. After three months of hospitals and rehabilitation, we were finally home. We were connected with area therapists who came to my home to help me, help Charlotte. A Speech pathologist, Occupational therapist, Physical Therapist, and a vision teacher. On a feed tube when we arrived Charlotte was ready to start solids within a week. With the help of her vision teacher, we went about keeping Charlotte safe. We put yellow tape on steps, safety locks on the doors and we installed a baby gate to keep her from wandering if she wakes at night. We were on our way to a new chapter in our lives. One where understanding and healing were now our focus.

Charlotte 4.png

Charlotte turns 8 in early September, entering 2nd grade at my hometown elementary school. She has a team of educators helping her, a 1:1 paraeducator that is by her side always. A Special Educator who oversees everything as well as works with her in and out of the classroom. She is provided with a private space within the building for breaks or naps and quiet direct instruction when needed. Her vision remains somewhat of a mystery, given the fact she can’t participate in her eye exams like others. Her ability to say how and what she sees is developing slowly and is definitely “behind” other children her age. Her eye doctor says there is no visual field loss, but there are times it’s as if she has no vision on the bottom field. Like she can walk off a cliff and not realize it until it’s too late. She’s adapted very well over these 5 years it’s now hard to tell she has any vision impairment. It’s frustrating dealing with the medical side of things. We have to drive 1.5 hours away to get to anyone who knows something, and even then they can be wrong, or we can’t get in for months so we wait. Charlotte has suffered two bones broken in her left leg at the growth plate that were undetected and healed improperly. She sustained a hematoma that was removed upon putting a shunt in her head on the left side. Her brain filled with fluid and it went undetected. Charlotte had eye surgery this past winter to help correct the muscles and it seems to be helping. She is now experiencing seizures and undergoes multiple tests while trying to identify the correct medication.

Charlotte 3.png

Children in her class accept her, they are friendly and kind. To help students in the school understand Charlotte, I have gone around to several classes and read a book called: “Elvin the Elephant”. About an elephant who suffers from a TBI, it explains things in a way elementary children can understand. I am so thankful for that book; it has been my best tool to help others understand her! She LOVES other children! She does tend to gravitate to the boys generally; they seem to tolerate her more. Mainly because she likes more gross motor play than imaginative. Charlotte loves to listen to stories, look at books, swing on the playground, run around, climb things. She enjoys music and being silly just like all of the other kids.

Charlotte 5.png

As her primary caregiver and parent, I sacrifice a lot, without hesitation. There are events we miss out on because I’m intimidated it might be too much for her, or maybe for me. High energy events are highly stimulating and can be too much, too loud, and she is ready to go after only a few minutes. Sometimes I don’t have the mental energy to go somewhere only to just to have to turn around and leave. She has built tolerance for some sporting events. My son Micah plays a sport every season, so there are lots of games to go watch. She enjoys clapping and cheering for him joining in on the excitement. She is always full of happy energy. Giving people hugs, “raspberries”, and likes to chill you with her cold hands by putting them up your shirt and saying “Brrr”. Charlotte has a Personal Care Assistant (PCA) that spends time with her after school enabling me to have some time for Mom chores or focus 1:1 time for my son. Micah is a great big brother who tolerates a lot, Charlotte isn’t always quiet and calm. She enjoys playing with him but sometimes can be a little rough. As with all siblings, some times are easier than others, Micah has found his way to be the best big brother he can.

Charlotte 6.png

Charlotte’s accident was very traumatic for everyone in my family and community. However, we were all given a gift in Charlotte 4.0 as we sometimes refer to her. Her issues are complicated but she is simple. She brightens everyone’s day, I’ve been told this over and over again. She’s very social and LOVES people. As a family, we have found that there is strength in coming together and sharing our successes and setbacks. This will always be a work in progress. Progression and healing have no timeline. Every day is a gift and she makes progress every day. One thing she says a lot is “Happy Birthday”, at random. We used to correct her, until one day I realized she’s right. Every day is a birthday, a day to celebrate life. We are a day older and it is a blessing. So is Charlotte.

Jane Hulstrunk 1.jpg

Jane Hulstrunk

In late November of 2001, at the age of 49, I was in the Washington DC area learning a new computer operating system for the mainframes I managed for my employer in Burlington, Vermont. I had been in this same area for a previous class, the week after 9/11. I had hoped this week wouldn't be as emotional as the earlier one. Seeing the Pentagon still burning and all the flowers and memorials around that area was heart breaking! On the 2nd day of class, I was walking back to my hotel at lunch break, when I was hit by a car taking a right turn on red. I don’t remember much except the pain of my head violently hitting the pavement. In that instant, my life was forever changed. As I was to find out in the months and years to come, traumatic brain injury (TBI) is life altering! I had suffered a previous traumatic brain injury in 1980 when I was 27. I was living in my native state of Massachusetts and was hit head on by a car full of drunk teenagers. I have no recollection of this accident as I was unconscious while they removed me from the car with the jaws of life. In the hospital, I was told I had a concussion and would eventually heal although it took months for my memory issues to resolve. I did seem to have ongoing issues, but was told that they would go away. (Brain injury was not well researched at this time) Several years later, I studied computer programming and went on to become successful in that field! My immediate recovery from the 2001 accident was long and difficult, lasting several years. The TBI caused fatigue, chronic pain, migraine headaches, dizziness and balance issues, cognitive issues, and problems with my vision. The DMV eventually revoked my driver’s license which left me depressed for losing my independence. I also could no longer go back to the work I had done for the previous 20+ years.

Jane Hulstrunk 2.jpg

A big part of my recovery was doing meditation, yoga, and bi-weekly acupuncture treatments. A vocational rehabilitation counselor realized that I had an interest in plants and natural healing. She suggested I consider studying herbal medicine. This was a turning point in my recovery. I studied with the well-known, local herbalists Rosemary Gladstar and Guido Mase. I learned about growing and harvesting native plants and how to make tinctures, salves and tea blends using these plants. During these years of study, I cultivated many new friendships. They only knew the post-TBI Jane, so didn't see all of my deficits as some of me pre-TBI friends did. Several years later, I became part of the LoveYourBrain family, an organization founded by brothers, Adam and Kevin Pearce. I participated in the LYB pilot program which studied the efficacy of meditation and yoga for brain injury survivors. Yearly I attended a LoveYourBrain week-long retreat with a group of 35+ brain injury survivors from all over the country. Practicing daily meditation, yoga, and participating in various activities including art therapy, nutritional classes, nature walks, and learning about compensatory strategies. We have become like a family and keep in touch via local get-togethers and social media. My brain injury changed me, changed my life. It’s often difficult for others to understand because it’s a somewhat invisible injury. But, I have come to enjoy my life and appreciate it more. I have a part-time job working from home, I have a loving family and friends, I spend as much time outdoors in nature, and I continue to use natural plant medicines and bi-weekly acupuncture treatments to manage my chronic pain and cognitive and balance issues. Now, after a couple of years of vision therapy, the DMV has restored a limited driver’s license, allowing me to drive during daylight hours. I am very grateful to the Brain Injury Association of Vermont for their assistance over the years to me and hundreds of other brain injury survivors.

Thank you for your support.

SARAH JACKSON

sarah_jackson.jpg

June 12, 1998; a day she will never forget: When 15 year old, Sarah Jackson, climbed into a car with an underage drinking driver, she didn't know that choices can impact dreams. The driver lost control and Sarah sustained severe injuries. She underwent 5 months of rehabilitation and the traumatic brain injury that she lives with today, as a result of the crash, is a constant reminder of how lucky she is to be alive. Having a foggy memory of herself that treacherous night, she still lives with the pain and tenderness of the day she almost died; the day she will never forget.

Sarah, now 19, lives in Shoreham, Vermont with her younger sister, Kristen, mother and father, Robin and Steve Jackson. She attends Community College of Vermont, part-time, in hopes to get her Associates Degree in Communication. Sarah travels throughout Vermont and beyond, to speak to elementary, middle and high schools, as well as teacher trainings and other various organizations, telling her story hoping to prevent further tragedies.

In 1998, Vermont ranked #1 in the nation in alcohol related deaths per capita.

In 2001, when she was 17, Vermont ranked #48. Sarah is a common believer that she has helped these statistical numbers decrease by speaking to her peers.

Sarah continues to fulfill her goal. She has participated in the 2000 national conference held by Students Against Destructive Decisions. Her first national speaking experience was in 2000 at the Mothers Against Drunk Driving National Youth Summit and the 2000 MADD International Candlelight vigil.

She represented Middlebury Union High School in the 2000 Prudential Spirit of Community Award Program and was runner-up in the state of Vermont. In 2001, Sarah attended the SADD National conference as a delegate and a speaker. In that same year, she attended the National Organization of Youth Safety Conference. At this conference, she shared her experience with others in a video made by the National Highway Traffic Safety Administration.

Sarah has also received the 'Highway Hero' award for her efforts to promote safe and healthy lifestyles for Vermont teens. Furthermore, the Vermont Brain Injury Association awarded her with the 'Survivor of the Year' award in 2001. She is constantly looking for opportunities to spread her message locally and nationally. Jackson believes this is an increasing nation-wide problem that is killing many people year after year and needs to be stopped.

PETER DAIGLE “REBUILDING A LIFE”

peter_daigle_candid.jpg

It all started with my aspirations to become an engineer. That instead of living from one party to another. This dream of course would acquire more education. So after doing all the proper prerequisites I was ready to go. I got a ride to the campus with a guy I new who was also attending the same school. 1st week went off without a hitch. So what next, Head home but, with maybe too much exhalation in our blood.

The accident accrued when the driver proceeded to pass two trucks on the interstate. (He was going way over 100 mph). When he started to go by, a car that was in between the trucks pulled out. He hits the brakes. We slam into the side of a bridge going over the road. I am thrown thru the windshield and ended up 250 ft. up the road on the pavement. When the ambulance crew arrived I was pronounced dead. Then a friend of the family who was also a member of the ambulance squad just happened to be going by. He reviewed the stats and said "We have to save this boy "(i.e. I was then 19 yrs old.) They brought me to the local hospital were after 1/2 hr of no response decided to transfer me to the medical center 65 miles away. (i.e.: I had a fractured skull, bruised kidney, bruised heart, punctured lung) This just to appease my Dad but, with no hope of me surviving.

After arriving I was rushed to the operating room (this after drilling holes to relieve pressure on my brain in the parking lot) when there I was operated on for 5 hrs. Most of my right frontal lobe removed. Temporal lobe badly damaged. After being fixed as good as possible I was put in the intensive care unit where nobody had ever came out alive. Prognosis: doubtful he will live but, if he does he will be a complete vegetable.

Well after almost 3 months in a coma, dying a few times .( i.e. Resuscitated apparently), I actually became conscious. More like living jello, but alive. I have all the medical reports/9 volumes. .Anyway. So far my recollection is mostly hearsay but now was to start a life long rehab. What's amazing is that back in 1976 rehab for brain injury was almost non-existant. But by the motivation given me by my family and the grace of God I kept on it until this day I am fully functioning, father of 2 and grandfather of 3.

But there is a lot more to this story. My 1st cognitive evaluation in 1979 pointed to a lot of cognitive therapy being needed. Didn't exist back then. Physically after the hospital my family was very instrumental in my exercise program, which I continue to this day. In 1981 I moved to Miami Fl. and started a life. Got married, kids, job, which I sustained with power naps (10 min no thinking and Ginseng tea to keep me awake. That was the biggest problem. Staying alert and focused. But after a few different jobs I found as my doctor would say the perfect job for my psyche.

So in 1994 we went thru hurricane Andrew (frontal lobe, emotion stuff) After rebuilding and working 20 hrs a day things calmed down. Things had really changed in my psyche. I would cry when asked how thing were. Family was doing well, my company put us up in a nice hotel. Ins. On the home would leave us financially OK. Nobody we new was hurt. BUT- something had really changed in me. I was super anxious, unsatisfied and an array of new stresses. I was offered a nice severance package and chose to accept it and move to VT. After working for awhile I had to take a psychological evaluation because power naps were not acceptable.

The test determined that I needed meds, which for 23 yrs I had not taken. It was a turning point in my rehab but, the transition wasn't smooth.. After 3 times in the psyche ward /a wide variety of med changes and doses then a divorce (more stress). I had to finally accept the fact I was disabled. I see a psychologist once a week. A respected brain injury psychiatrist A couple case managers. I've overcome some great aversions but, now I have a whole new set of greater ones, but I will overcome. The most important thing for people to know is that there has never been a better day than today to become well. If I can overcome, and continue to overcome, anybody can. I have a lot of hope that soon, the realization that a brain injured individual, given the right resources can become a much better individual. Maybe not as multitasking as before, but given the right environment, exceptional.