STORIES OF HOPE AND TRIUMPH
On September 13, 1973 I was probably not sleeping like right now and that would lead to my waking up late. I missed my friends walking to school that morning and I went alone. Mom, who didn't drive, was yelling as I ran down the street to get to school, "Don't take the shortcut!" Me yelling back, "I won't!" Knowing I was lying to her. On that fateful day I was beaten beyond recognition by an 18 year old as I attempted to take the last shortcut life would ever afford me and my family. I remember a lot of what happened that morning, running late to one day in my first week of 4th grade I was excited, I loved school but hated waking up ( a common theme in my life) and there are many pieces of me that got lost on that well beaten path. Parts of myself and relationships with friends and family that were altered forever because of one act of violence so monstrous that people still say to me today, "I'll never forget what I was doing or where I was when I heard you were hurt." I don't look back feeling pity, I never wanted pity, recognition, or praise for fighting to get "me" back. It took a village, the Town of Lewes, a safe harbor of citizens who cared about each other, a family, and a little girl to get me to where I am today. I was impacted by the greatness and beauty of love, laughter, and giving.
I am the lucky one; I lived in a time of people rising to a challenge of overcoming fear for hope, hate for love, and tears for joy. From neighbors helping neighbors and coming together for a common cause, a child and a family. My life has been filled with struggle that built a great resilience, something that I am grateful for. Challenge has been something to overcome, not a roadblock and I am happy that my life has been one of Purpose, Understanding, and Empathy.
I think things happen for a reason and I believe I am fulfilling the purpose of the reason that I have had to live with a traumatic brain injury and seizures. I don't know who I would have become without them anymore. To be honest I don't know what I'd be if I didn't have to take pills to stop seizures all my life. I just know who I am now and I'm okay with me. So here's to 46 years of overcoming great odds, living, learning, loving, dreaming, and succeeding, against all the odds. Here's to Life!
Have an Amazing Day and remember to go out there today September 13th and be good to as many people as you can. Go help someone who may need it or visit someone who could be lonely, or donate to a cause you love. It takes all of us to be at our best when there is someone who needs us.
Imagine being an active 20-year-old and having your life change suddenly. On June 17, 2017 this is what happened to Tyler Trego from Harrington, Delaware. As Tyler tells the story, “My friend was driving and unfortunately fell asleep behind the wheel, which caused him to veer off the road. I ended up breaking my back in three places as a result of the accident, which left me with a T5 spinal cord injury. I also had a traumatic brain injury (TBI).” Tyler’s mother, Cristi, added that in addition to the injuries above, Tyler also “had a severely broken sternum, collapsed lungs, bleeding on the brain and a broken bone in his neck. All of the ribs on his right side were broken along with some fractures on the left, as well.” Tyler’s parents searched for the best rehabilitation facility for Tyler and decided on Magee in Philadelphia. He stayed there from July to September of 2017.
Quickly the Trego family was faced with rising medical expenses, travel costs, time off of work, and other needs. In order for Tyler to return home, the family had to move into a new home and make sure Tyler could properly function in his new “normal” throughout the house. Not to mention, Tyler’s parents had to start to learn all of the support resources in the State of Delaware. This family’s life changed in the blink of an eye and they were left looking for answers and solutions on how to help their son. His parents were willing to do whatever it took to get Tyler what he needed; however, maneuvering the system still continues to be a challenge and they learn more and more each day.
Tyler continues to have a great outlook. He stated that “I initially focused on everything I couldn’t do. After working with PT, OT, and speech therapy, I was able to see how much I actually could do, just in a different way than I was used to. I tried to stay positive throughout my recovery and remind myself to focus on what I could do versus what I couldn’t.” The support and love he felt from family, friends, and the community were instrumental in recovery as well.
Tyler and his family continued to have struggles finding support services for young adults. Tyler truly has been a light in this world. Sadly, Tyler passed away on June 8, 2020. We will miss Tyler's smile and positivity, but know that he wants us to press forward with increased resources for our brain injury community
Dani and Amy's Story
My name is Amy Burhop and I am the mother and primary caregiver of a TBI survivor. On July 24, 2012 my daughter, Danielle (Dani- 13 yrs old), was attempting to cross the road out front of our home in Bridgeville, Delaware when she was struck by a car traveling at 55mph. Dani was flown to Christiana Hospital where she was stabilized and immediately transferred to AI Dupont hospital for children in Wilmington. She sustained several orthopedic injuries such as two broken legs, a broken arm, a shattered pelvis, a fractured skull and severe road rash from hip to toes on both legs. The initial scan they did on her brain showed lots of swelling but it was inconclusive as to if she sustained a brain injury. After three days of not waking up they decided to rescan her brain and discovered she suffered from Diffused Axonal Injury. At this point we had no idea what life would be like when/if she woke up. After almost 10 days in a coma, we slowly started to see Dani start to awaken, but this certainly was not the Dani that we knew. In the ICU she endured a 9 hour surgery to fix her orthopedic issues and slowly started to respond to us. There would be a squeeze of the hand here, an opening of the eyes there, but not “our” Dani yet. After 10 days in ICU they transferred her up to the rehab floor where she spent about 3 months in inpatient rehab and basically learning to walk, talk and function again.
In late September Dani was released from inpatient and we spent the better part of that year living at the Ronald McDonald house as Dani was a part of the C.O.R.P. program (outpatient rehab), enduring 6 hours of occupational, physical, psychological and schooling each day (5 days a week). Slowly but surely we were getting our “Dani” back to us. Eventually they were able to gradually incorporate Danielle back into school, with lots of support. Dani
endured several more surgeries on her body but her brain continues to improve every day. She is truly a miracle in our eyes. She graduated high school and attempted one semester of college but decided that this was just not for her. She has significant memory issues but tries so hard to overcome any obstacle thrown her way.
Currently Danielle is a thriving 21 year old with a full time job at our local grocery store. She is a happy, caring and helpful member of our community. Dani still and probably always will struggle from the difficulties of TBI, but she pushes through and takes one day at a time. Both of us are members of the Sussex County Brain Injury Support group and this has been such a blessing. We find that surrounding ourselves with others going through similar experiences can be so helpful and healing.
My name is Shannon M. Simons. I am 44 years old, reside in Magnolia, DE. I currently teach at Alexis I. DuPont High School in Wilmington, DE and Delaware Technical Community College. On December 26, 1993, I was involved in a life-changing car accident, due to slippery road conditions, in an area just outside of Shinglehouse, PA, my hometown. I was 18 years old at the time and the driver of the automobile. Upon the impact of the driver side of my car and a tree, neighboring the right side of the highway, I was found unconscious by a nurse traveling by approximately 5-6 minutes following the crash. Phyllis Carpenter, the nurse passerby, gained access to the interior of my Hyundai Excel, opened my airway, and revived me. Once my respiration initiated, Ms. Carpenter contacted residents from nearest house/trailer, and alerted them of the accident. Emergency vehicles arrived shortly after, I was cut from my car via the Jaws of Life, and rushed by ambulance to the nearest hospital. My consciousness was compromised multiple times in route to the hospital, a 30 minute drive, due to the hazardous road conditions. Upon arrival to Charles Cole Memorial Hospital in Coudersport, PA, I was examined and it was determined that I needed further support, not available in this facility. I was Mercy-Flighted to Robert Packer Memorial Hospital in Sayre, PA., where I was administered life support for four days in critical condition. The hospital stabilized my condition for 6 days, which included assessing my brain trauma, operating on my crushed left elbow, and braced my right broken collar bone. It was determined that I sustained a closed head injury that resulted in moderate to severe brain damage, especially in the left frontal lobe area. Along with this, upon my collision with the tree at the accident site, nine of my teeth were crushed in my upper palate of my mouth cavity. I was also unable to walk due to the blow to the left side of my head. Involuntarily, my right toes would point inward making me fall with each step I attempted to take. I was confined to a wheelchair for the time being. After my ten day stay at the hospital, I was transported to Lake Erie Institution of Rehabilitation to aid me in achieving any recovery I may. Upon arrival and assessments, the doctors present shared with my parents that an estimated 6-9 month stay would be minimal and expectations for significant recovery were low.
After 6 weeks of cognitive, speech, occupational, and physical therapies, I exited the center. I returned to my hometown, graduated from high school, and headed off to college at Mansfield University, where I graduated Cum Laude after 4 years with a Bachelor’s Degree in Psychology and academic minor in Criminal Justice Administration. Later, I earned Master’s Degrees in Education and Educational Leadership from Wilmington College (University).
I am so thankful for God’s love and mercy and many blessings, my family and friends who stood by me, all the opportunities I have had due to support from the Office of Vocational Rehabilitation , and to all the physicians, specialists, and the nurse Phyllis Carpenter from Illinois who brought back life to my body. Without all of these wonderful people, I would not be here with you today.
My name is Amelia Louise Parsons. I was born in Lewes on March 23, 1991. Rural Georgetown was where I called home for 18 years. I graduated from Sussex Technical High School as a Certified Nursing Assistant. Home health was needed among neighbors and family friends, so that is where I started in the health care field. For the past, almost 8 years, I’ve been employed at a local long-term nursing care facility. On February 12th, 2018, I went out to grab food at a local fast food restaurant, a spot that I had been to several times for my lunch breaks. On returning to work, I made a life-threatening mistake. One that I have zero recollection of. According to police, I was using my cell phone while driving back. Distracted, I ran a red light to cross the highway. It just so happened that an unloaded tractor trailer was driving down the highway and I went right into its path. The truck hit my door directly at 47 MPH and completely crushed my side of the vehicle. My car was pushed and spun across the median and onto the opposite lanes of traffic. Thankfully, I was not hit by additional vehicles. The damage to my car and to myself was severe. I was immediately knocked unconscious. The space between my door jam and my center console measured roughly 8 inches after the impact. Emergency services arrived and were sure that I was dead until the trooper noticed that I was trying to breathe. The emergency services called for a helicopter to transport me from the scene to Christiana. However, I was not stable enough for the flight. So, they transported me via ambulance to Beebe Hospital to stabilize me and then flew me from Beebe to Christina Hospital. It was a very expensive flight, one that I have no recollection of. My injuries were: punctured left lung, broken left collar bone, 6 broken ribs, broken left hip, crushed sacrum and a large gash on the top right side of my head that required 13 stitches. Later, they also discovered that I sustained a very serious brain injury called Diffuse Axonal Injury.
Once at Christiana, since I was still unconscious, I was put under a medically induced coma. I received a Foley catheter, multiple IV medications, and a feeding tube, intubation to keep me breathing and supportive/cushioned wraps for my legs. They also put me under “brain rest”. Physical touch and communications were limited for my brain to heal. Eventually, they administered medicine to bring me out of the coma. Even with the reversal medication, I was in coma for a total of 11 days. I was intubated during most of this time. After a few days, they inserted a tracheotomy and they also removed my feeding tube and inserted a “PEG tube”. According to my family both of these procedures made me much more comfortable because I was no longer fighting with all the tubes in my nose, mouth and throat. My family and friends were by my side the entire time. Once I “woke up”, I was able to make so much progress, but I don’t remember much of that portion during my recovery. The first memory I have after the accident was a terrifying experience. I awoke in the middle of the night, the lights were off, and I was in bed with “safety mittens” on my hands to prevent me from pulling at any lines or tubing. From my memory, I went from being at work to being “restrained” in a hospital. Even though I tried to scream, my voice was gone because of the tracheotomy. I went into full panic mode. I had to get out! With my teeth, I started to remove the Velcro around my wrists that kept the safety mittens in place. Staff members realized what I was doing and they came in to stop me. Eventually, I began to realize what was going on and I started to ask questions. My family and friends were able to answer a lot of my questions and I slowly started to come to terms with my condition. As you can imagine I went through a period of grief and depression as I started to realize how much my function was impacted and began to worry about if I would ever return to my former ability to be independent.
As I made progress, my family started looking for rehabilitation facilities that specialized in Traumatic Brain Injury patients. They began looking for facilities in Delaware but their options were limited. So many friends encouraged them to transfer me to Bryn Mawr Rehabilitation Hospital in Malvern, Pennsylvania. Even though it was a distance away for anyone who wanted to see me, it certainly proved to be a fantastic facility. On site Bryn Mawr has a separate hotel like building for family which proved invaluable for my Mom who was able to stay during my whole time at rehab. The intensive therapy I received there taught me to walk, talk and write again. From February 12th until April 18th, I spent approximately 1 month at Christiana and 1 month at Bryn Mawr. On April 18th I was discharged and walked out of Bryn Mawr rehab with a walker on my own accord. When I returned home on April 18th, I was able to become an established patient at a local neurologist and I continued therapy through outpatient services. After some time, he gradually allowed me to return to work and to start driving again. Seven months after my accident, I was back to work full-time. One year and two days after my accident, I became a home owner. This year I plan on going back to school, continuing the remodeling work on my home and spending as much time as I can with my three loving dogs and three cats. Every day I am extremely thankful to be able to express my feelings, communicate with friends and family, live independently and cherish that each day is a gift.
John and Catherine's Story
At 1:45 AM on May 19, 2015, we learned that our son had been in a serious car accident on the beltway in Alexandria, Virginia. He was alive, but in a coma due to severe traumatic brain injury (TBI). But, after two and half weeks, he began the slow process of waking up again. He spent four more months in a specialist hospital in Baltimore, MD. At the end of September 2015, we brought our 17-year old son home and began our journey into becoming caregivers. Initially, John slept a lot, could not walk, talk, or feed himself. In December 2015, John found his whiteboard on his iPad at Speech Therapy and wrote with his finger: “I need to use the restroom”. That was a major breakthrough: John could hear and understood everything. We moved to Lewes, Delaware for a slower lifestyle. John graduated from Cape Henlopen High School in June of 2018. He has taken classes at Delaware Technical Community College in Georgetown. Four and a half years later, John still cannot walk or talk (he has an iPad on his wheelchair through which he can speak), but he can walk in a swimming pool and is able to stand on his own holding on to something. He is working on learning how to speak again. Mom and Dad are his parents and friends.
I feel like I’m superwoman (I’m not). I am amazed at my strength, both physical and emotional. In addition to caring for our son, my husband and I both work using the Internet. According to our older daughter, my personality has changed: “Who are you” and “What have you done with my mother”. I have learned patience. I’m tired and jealous of my peer’s ability to go wherever, whenever. But John is progressing and smiling.
I remember that I was a high school junior at Saint Stephens and Saint Agnes School in Alexandria, Virginia. I don’t understand what happened to me. Confusion surrounds me. I understand that I have a traumatic brain injury (TBI). My parents tell me that a car hit the passenger side of the car I was driving causing me to make a left turn into a Jersey wall on I-495 (the beltway) in Alexandria, Virginia. I don’t remember a car accident, I just want this nightmare to stop.
I'm 35 years old and I have suffered from many head injuries that were usually back to back to each other. The last two were 6 months apart. The first one I was involved in a motorcycle accident and hit my head and broke my orbital. Six months to the day I was hit by a tractor trailer as a pedestrian crossing route 1 in Rehoboth Delaware. I suffered a traumatic brain injury which consisted of six brain bleeds and a large DAI among many other injuries to my brain. I was thrown 60 ft and landed solid on my head. The outlook was grim the doctors told my family most people who suffer from this type of injury either are in a vegetative state or die. By the grace of God, I am here today to tell my story. Of course, I have no memory of this accident I’m just going by what people have told me.
It's been 3 years since my last injury and my journey has been long and difficult but I am capable to do many things. I do have my deficits, I have fear, stress, anxiety, worry and at times hopelessness but I have full body functions and I can walk and talk and help myself. Even though I struggle most times with the belief that things will and can get better, I try to focus on staying busy and helping others less fortunate then me!
On December 20th 2017 I went to work despite not feeling that great. I had been overworking as I used to wear a lot of "hats" at my job. I was a manager/chef/banquet manager/line cook/prep cook/caterer... at a very busy restaurant chain in southern Delaware/ Maryland.
Upon arriving at work I felt very fatigued, not at all myself, but I decided to brush it off as that is my nature. However, I began to sweat and as a reflex, I went to the restroom to wash my face in an effort to control the heat I was feeling throughout my body and to gather myself and do a body scan. When I tried to open the restroom door with my right hand I noticed that my right hand and arm were not responding. I quickly opened the door with my left hand, entered the dining room and collapsed. The next thing I remember I woke up in Atlanta General Hospital with a rubber ball in my right hand with the word "stroke" in my mind. I had no idea what the word "stroke" meant, nor did I have a name for water, but I knew I was thirsty. I had no idea of the extent the stroke created in that moment, but I would soon find out. That afternoon a nurse came in the room and asked me to lift my right hand over my head. In my mind I said, "no problem", not the words did not reach my lips. "That is strange", I thought to myself. Deficit #1 speech was gone. The nurse said, "you had a stroke in the left part of my brain and it affected the area in your brain that controls your speech. Now, could you please lift your right hand over your head?" So I did as she asked, except I raised my left arm over my head, my right arm did not respond at all. Instead, my left arm got the signal and functioned to compensate for this new deficit. She mentioned that I used my left arm, not my right, so "please concentrate on moving your right arm over your head". After several attempts to get my right arm to obey, I gave up. I was beyond exhausted and frustrated, so I used my left hand to hold up my right hand over my head, hoping this would suffice. I just wanted to rest and sleep, but she corrected me by holding my left arm down, and in a very stern voice commanded me to lift my right hand and arm. By now I thought, "this is serious. My brain was not connecting to my right arm and hand."
After several attempts I finally got my right hand to move ever so slightly, but I was exhausted by that effort. But she insisted I repeat these movements over and over while my energy drained more and more with each attempt. All i wanted to do is sleep and I wanted her to go away. Little did I know at the time she was saving my life, for if not for her the mobility may never come back unless these repeated movements were used to rewire my broken brain. She never gave up on me, and that was my first exposure to my new life as a stroke survivor. She even played the "Rocky" theme song over and over that day, prompting me to keep moving my right hand as the part of what was left of my brain was trying to account for all of my new deficits and damage the stroke did to my brain. Quickly I saw she was my savior, that the way out of this is to repeat, repeat,repeat and oh yeah, you get the idea, repeat again and again ad-infiniti. The horror and trauma of those few waking minutes felt like a lifetime as I gauged where and who I am in relation to who and what I was prior to this incident. The word "shocking" came to mind as I saw that I was really screwed up. Then I had to go to the bathroom. I hit the call button and the nurse came and I motioned I wanted to go to the bathroom only to realize my right leg wasn't responding either. It was then that I knew that the same procedure (repeat, repeat, repeat) would be my road to recovery in all aspects of my new life as a stroke survivor. I must note that I lived in two Buddhist monasteries where I learned mindfulness meditation and this would be critical to my recovery. Along with my physical and speech deficits I have memory issues (reading, writing, math, among cognitive issues)that are still part of my therapies going forward. Being a former artist from a very young age, art became a constant companion on my road to recovery as well as a source of happiness and joy amidst the anxiety and depression as well as a form of relaxation.