Look Closer. My Brain Injury Is Invisible with Stacia Bissell, MEd
Look closer. My brain injury is invisible. Presented by Stacia Bissell on Tuesday, 08/20/2024. This presentation is sponsored by the Northern New Jersey Traumatic Brain Injury System and
Jean Lengenfelder:Good afternoon, everyone. Welcome to our quarterly virtual speaker series, Summer Brainstorm. This series is sponsored by Kessler Foundation as part of our TBI Model System grant, which is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research. It's now my pleasure to introduce Stacia Bissell, who will be presenting today, Look Closer, My Brain Injury is Invisible. Stacia is a brain injury coach, educator, author, public speaker, and survivor.
Jean Lengenfelder:Passionate about education, Stacia spent much of her career as a secondary math teacher until taking on roles in administration and academic coaching. In 02/2011, she became a licensed middle school and high school principal with aspirations of running her own school in the near future. However, a bicycle accident left her with a TBI, and her career as a public school educator came to an end. With support from her speech language pathologist, the Brain Injury Association of Massachusetts, family, and friends, Stacia began focusing her attention on helping the brain injury community. She has co authored the bestselling book Deserts to Choosing Our Healing Through Radical Self Acceptance, and has also written about her post TBI journey featured in Brain Injury Hope magazine.
Jean Lengenfelder:She has been a keynote speaker for several conferences and events. She has appeared as a guest on various podcasts. She serves on the advisory council for the Brain Injury Association of America. She is a program leader for Love Your Brain and she was co founder of the Northampton, Massachusetts Brain Injury Support Group. She is an established coach and mentor to other survivors and caregivers offering the services designated to help promote healing and forward movement.
Jean Lengenfelder:Stacia is a native of Berkshire County in Western Massachusetts. She has three grandchildren, two grandchildren, and a cute camping trailer named Starla. Thank you, Stasia, for being here with us today.
Stacia Bissell:Thank you, Jean. That's really nice. I actually, as of last month, have a third grandchild, so that's, the exciting news since I wrote that bio to you. Hi, everyone. I'm Stacia.
Stacia Bissell:And I know you can hear me because I I think you can all hear me and see me okay. Wow. I hi, new friends, and I see some old friends. So I I can't mention all the names, but my goodness, Mona and, you know, council members and Candice and so forth. Lovely to see you.
Stacia Bissell:Wow. I'm feeling your energy today, and I'm glad you're all here. Thank you for being here. And I just want to, I understand that there are a lot of survivors here and maybe some caregivers, so welcome to all. And I I have to admit that I always worry when I do a virtual presentation, that the technology is not gonna work, and you're just gonna be out there.
Stacia Bissell:And I'll be here in my office, and we're not gonna be connecting. And, you know, when I do talks in person and the microphone or the slides don't work, it's okay. You know, you always manage. After all, we're all in the same room. This virtual is a whole other ballgame.
Stacia Bissell:And for a while, that's all I was doing, and then I'm back on stage now and now back to virtual. But I love that I'm able to reach so many of you in so many different locations. So, I'm I'm happy to be here today. I am talking to you from the, East Coast, Western Massachusetts. I wanna thank the Kessler Foundation for having me here today, in particular, Jean, who has been very patient in her attempts to get me here.
Stacia Bissell:I have to tell you a cute little story that in April of this year, I discovered a pile of emails that came in from my website that were never forwarded. And in that pile was a very nice invitation by Jean to speak to you all last year. So better late than never. Here I am. So I usually love to move around on a stage, but today, gonna do my best to hang tight with you from my chair.
Stacia Bissell:Can't guarantee that life's not gonna happen along the way. My neighbor's dog might bark. My doorbell might ring. I'm obviously not gonna get it. And like Jean said, we're going to leave time at the end for q and a, so I invite you to jot down any questions or comments you have along the way and save them for then.
Stacia Bissell:And I say this almost every time I speak, but my goal for you is the same as it is for myself whenever I'm in an audience, and that is to walk away with one thing, one thing to think about, one thing to talk about, one thing to do, one thing to change. And even if only one of you does that today, I'll be happy and know that progress was made in the world and work of brain injury. So sit back. Relax. This is a story.
Stacia Bissell:This is my story. I've been invited here today to tell you the tale of my brain injury. I'm hoping it makes you feel less alone and more understood. In exactly thirteen days, it will be thirteen years since I sustained my brain injury, at which time the first version of me was boxed up, and this new version of me began existing. And I'm guessing many of you can relate to that.
Stacia Bissell:I'll talk about how it happened and what the journey back from it has been like so far. And I say so far because no one is putting an expiration date on my healing. And speaking of healing, I had to learn not to confuse healing from a brain injury with a cure for brain injury since there is none that I know of, unless you call acceptance a cure That might just be the one miraculous cure out there. Rather, I look at it as a healing process with no end, and it's not always linear, is it? We all know it kinda goes like this.
Stacia Bissell:I personally haven't always liked the journey. I didn't do well for it for a long time. I lost a lot personally and professionally. I conquer it most of the time now with a lot of management, I'll add. So welcome to those who have joined us since we started.
Stacia Bissell:Again, my name is Stacia Bissell. I used to be TBI free. I was a multitasker. I was a high energy person. I was a person who mostly looks like me today, primary labels thirteen years ago of mom, wife, teacher, and school administrator.
Stacia Bissell:Now I live with a TBI, which equals confusion with more than one task at hand, some low energy days and some killer headaches, constant ringing in my ears, noise and light sensitivities to the point where I can barely function in a place like New York City. I'm no longer a wife or teacher of mathematics anyway, and now I have a label of brain injury survivor. And overnight, it was pretty tough to trade labels. Actually, it wasn't overnight. It was in a split second that it happened.
Stacia Bissell:You know, my teacher label was swapped for unemployed brain injury survivor, and my type a personality gave into this confused, slow, and inefficient way of being. And my high energy social self was gone, and it was replaced with an often fatigued, anxious, and isolated outsider. I went from feeling healthy to someone who still lives in and lived with, physical pain on the right side of my body and has some unaccounted for other pains and medical issues. Thankfully, I'm still a mom. I'm also a friend and daughter and niece and aunt and sister and now grandmother.
Stacia Bissell:I'm a brain injury coach and mentor. I'm an advocate, public speaker. I'm an author. I bike. I hike.
Stacia Bissell:I kayak. I camp. I play the piano. I garden, and I volunteer. These are also the things I am in addition to being a survivor, which I like reminding myself of.
Stacia Bissell:The fact that I live with a brain injury like many of you means there are two versions of me, like I said earlier, The one before you and the other I have this picture of her now in this tightly sealed glass box, and it's glass because I can definitely see her. She goes wherever I go, only I can't access her the way I used to. She doesn't cooperate. I can see her sitting there in this box the way she used to be with a very confident manner on a mission to prove herself. She was a workaholic at times.
Stacia Bissell:She enjoyed family time, social time, alone time. I always had a long to do list, and I was in complete control of getting it all done. And I could look out and really clearly see where I was going personally and professionally. And then in a split second, a TBI hits, and then comes this blurry, confused, emotional, tired stranger stranger who tries accessing the old me only I can. No matter how hard I'm banging on this glass box, Honestly, I'd go and do something as simple as making pancakes, and I was a gourmet cook.
Stacia Bissell:And I I I found I couldn't even make pancakes, but I could remember doing it, so I felt like I should be able to do it the same way. Suddenly acquiring a brain injury is a pretty odd feeling. You don't have a choice of the changes to your personality or your functioning power. You don't have a choice of what happens to your former strengths or weaknesses. Your strengths may be gone.
Stacia Bissell:Your worst traits may become even worse. And what you do and say might be completely new and unrecognizable to yourself and others. Maybe you don't move the same way. You're probably pretty angry, disappointed, worried, frustrated, all making the process of recovery that much harder. Brain injury can be grim.
Stacia Bissell:I don't like to dwell on these aspects but do feel it's necessary to portray what can often happen. It is well known that brain injury survivors often suffer from simultaneous anxiety, depression, often from the losses we encounter or responses to cognitive difficulty, fatigue, or chronic pain, which can lead to additional deterioration physically and a greater number of post concussion symptoms overall. And these symptoms can sometimes be more severe then. It's it can be a vicious cycle. I've come to realize that brain injury is like being handed a ticket to a forced mega flop.
Stacia Bissell:You will try to do things the same way, and you won't be able to. It's like someone has moved the keys around on your keyboard with the expectation that you can immediately type at the same rate. It's difficult learning to eloquently be this new person when cognitive and sometimes physical and emotional parts of you are suddenly unrecognizable. But then you look in the mirror, and you get confused by the recognizable. The person looking back at you often looks exactly the same.
Stacia Bissell:Thus, the title of my presentation. Look closer. My brain injury is invisible. But when all of this floundering occurs, it can be a pretty powerful tool for the beginning of the reestablishment of yourself, and it can be the fuel you need to motivate you to find new methods for living life. Because forcing yourself to live like you were, well, that's just punishing yourself.
Stacia Bissell:Others have to invest a lot of time to get it too. And for parents or loved ones of the survivor, the journey is also very tough. So this is what happened. It was Friday, 09/02/2011, and I was biking with a friend on a beautiful bike path called the Asha Wilta Cook Trail in the Berkshires of Western Massachusetts. I was riding my maroon color 12 speed bike, and I was sporting a coordinating maroon helmet.
Stacia Bissell:It was the first week back at school where I was the newly appointed assistant to the principal in the middle school where I had been teaching math for quite a few years. My friend and I were riding together, and we got our signals crossed. I flipped. I fell. I flattened.
Stacia Bissell:I don't I don't know. I don't remember it. In addition to a broken arm and some ugly cuts and severe bruising on my face and body, I suffered what was classified as a mild to moderate TBI. I did not lose consciousness. I was wearing a helmet, as I said.
Stacia Bissell:Otherwise, the doctor told me I wouldn't be here. And if I were here, I probably wouldn't know it. The moment of contact between my helmet and pavement was when that old me, version one, was boxed up in that tightly sealed glass box, and this new me, version two, began existing. I don't remember the 10 miles or so on the bike trail before I fell or the accident or my day at work or the hours in the ER while they treated my bones and bloody skin. I had amnesia roughly 20.
Stacia Bissell:My first memory was actually waking up in my own bed, and I was really confused by having a cast on my arm. I sat up, and I woke my husband up, not so calmly demanded to know why there was a cast on my arm. And he told me that I'd been bike riding. I fell. I broke my arm.
Stacia Bissell:I went to the ER where they put a cast on my arm, and now I was home. And I'd look at my cast. And in surprise, I'd say, hey. Why is there a cast on my arm? So he would repeat that I had been bike riding.
Stacia Bissell:I fell. I broke my arm. I went to the ER where they put a cast on my arm, and now I was home. I would look down at my arm and again ask why there was a cast on it. I simply could not remember his answers as soon as they were out of his mouth.
Stacia Bissell:And I was released from the hospital without much mention of a concussion, only that my husband should watch me for a few days. And that's surprising because in the hospital, I'm told I did the same thing I as I did in my bed that night. I asked a battery of the same 12 or so questions 30 or 40 times, pretty rapid fire, things like where were the three children? Did school start yet? And then I'd look at my husband whose birthday is always in, you know, early September, and I'd say, is it your birthday soon?
Stacia Bissell:Do I have a present for you? And, you know, he'd shrug and chuckle and say, I I don't know. And then I'd catch sight of my ring my hand, sorry, and see that I was wearing my my dear friend Pat's ring. And so the next question would be, why? Why why am I wearing Pat's ring?
Stacia Bissell:Well, I hadn't remembered that she had died six months earlier and had given me this ring before she had died. And so there in the ER, I'd generally be told the pretty traumatic news that she had died. And I'd cry, and I'd finish my questions, and then I'd start all over with my questions. Where are the three kids? Did school start yet?
Stacia Bissell:Is it your birthday soon? Do I have a present for you? Why am I wearing Pat's ring? 30 or 40 times, I'd hear the news that she had died like it was the first time I'd heard it each time. So talk about a little repeat trauma there.
Stacia Bissell:So I know I'm skipping ahead a bit, but when I was six years out, one doctor assessed me at being 65% of my old self. That was actually really difficult to hear after six years of healing, adjustments, losses, more adjustments, more losses, doctor's appointments, etcetera. But in retrospect, I think he may have been on to something. Now at thirteen years, I would say maybe I'm close to 80% of who I remember me being before my brain injury, but I can finally accept that I'm a 100% of this person. And I ask you to consider asking yourself that same question later today.
Stacia Bissell:What percentage of your old self are you, and can you accept a 100% of that person? There's no right or wrong answer. Just consider. So my neurologist at the beginning, her name was doctor Deber. She classified my brain injury as mild to moderate, Moderate because of the amnesia and because of some evidence of a slight brain bleed and cheering on some imaging.
Stacia Bissell:Trust me. A mild TBI does not mean it's going to have a mild effect on your life. The adaptation to it can take years. During the first days and weeks after my accident, one thing I could not detect, temperatures. I'd come out dressed in shorts and a sleeveless top find my husband sitting there wearing jeans and a heavy sweatshirt, and he'd tell me the temperature and suggest I go change, but I I couldn't feel it.
Stacia Bissell:I couldn't drive for quite a while after the accident, and when I got the okay, I had in town permissions only. When I was cleared to with a neurologist to finally drive myself to one of my appointments in the next town over, I stopped my car about two miles away from my house and called my husband at work and asked him how to get there. I had no idea which direction to go in, north, south, east, or west. And I've lived in this town all my life. When I finally got the okay to venture into a family sorry.
Stacia Bissell:Not a family grocery store, a familiar big grocery store, a chain grocery store, but it was familiar a few months after my accident. I had a list from my SLP to only get six items on to have six items on my list. No more. I just thought, that's gonna be a breeze. Finally get to go to the grocery store.
Stacia Bissell:I only have six items, familiar grocery store. And I did emerge successfully with my six items an hour and a half later, and I was laden with a migraine. I was fatigued beyond belief. I just remember when the doors parted and I walked into the produce department, and I think I saw every single fruit and vegetable in there. I was just trying to process everything at once.
Stacia Bissell:At the beginning, you know, I was pretty emotional. I was tired all the time. I napped very often. People would visit me and then make a comment about their visit at a point later in time. I'd have no recollection of their being at my house.
Stacia Bissell:I used to be an avid reader but couldn't read after the accident and, to this day, prefer a puzzle or a podcast or a book on tape because reading and comprehending text can be quite a challenge, but I keep working at it, though. I experienced sleep issues, speech issues. All of a sudden, stuttered, almost always stumbling on words with the letter p in them. And my theory behind that is that it's from the trauma around hearing 30 or 40 times in a row that my friend Pat was no longer with us. I developed an auditory processing disorder, significant light and noise sensitivities, memory issues, unpredictable stamina, and cognition.
Stacia Bissell:My physical health was compromised. I couldn't calibrate time. Doctors tried all sorts of medications to minimize all of this without much success. Does any of this sound familiar, folks? And I constantly asked what happened to me.
Stacia Bissell:I didn't believe that any accident had occurred. I knew something wasn't right and that I had a cast, but I couldn't remember anything about a fall. So I actually literally thought one of three things. I thought maybe I was in a coma and having sort of this out of body experience. I thought I had died, and I was watching this scene unfold from some other place, or I thought people were lying to me.
Stacia Bissell:And this drives home the point that many times survivors do not have insight after a brain injury has occurred, especially immediately following. And it's extremely important to have someone or a team around you who can kindly and respectfully remind you of what you need to know, where you need to be, and most of all, that everything will be okay. For me, the first insight that some trauma had actually occurred was when I saw an x-ray of my arm and I saw the break in it. And I said to myself, well, there's some evidence. And I began to sit up and take note not only of the physical stuff, but especially of my other diagnosis of traumatic brain injury.
Stacia Bissell:I began to finally believe that I had a condition with a name, TBI, even though I didn't know much about TBI and I couldn't remember why or how I got it and I definitely didn't know what it would mean to my life. At the time of the accident, I had just taken a new job in my school as an assistant to the principal and an academic coach to the teachers. I'd been a math teacher and math coach for about twenty years. I went to school and earned an undergraduate degree in mathematics and then a graduate degree in education. I was ambitious, passionate, and knowledgeable in this field of work.
Stacia Bissell:I had just become licensed as a middle and high school principal the same year of the bicycle accident with aspirations of running my own school in the near future. This was my craft. This was my future. This was my interest and my income, and I was good at it. I saw myself retiring with pride and a party at 65 and and then continuing working, you know, maybe consulting for schools or the state department of education.
Stacia Bissell:That entire chapter and vision is over. My accident occurred after school on a Friday afternoon, and I called my principal, I think, as I the story goes, that weekend and and told him that I'd return to work after the weekend. In all reality, it was eight months before my neurologist let me go back, and that was only for three hours a day. And she made it clear it was a trial basis only. And I realize now that it was actually an exercise in getting me there, dressed appropriately, on time.
Stacia Bissell:It was not actually about being that productive once I got there. In fact, I was off enduring by the time I arrived at 07:30AM from doing just that, being there on time dressed appropriately. And many days at the end of my three hour shift, which was only 10:30 in the morning, I go to my car, and I'd have to sit in the parking lot for quite a while trying to find the stamina to drive the two and a half miles home where I then have to crawl up the stairs and lay down and rest. During my eight months off, there was a lot of testing during which time I know now I was being prepared for the likely permanent impairments that I didn't wanna hear about. All in all, I had about 80 appointments during that time.
Stacia Bissell:You know, the the usual neurology, orthopedic, chiropractic, primary care, physiatry, psychiatry, PT, talk therapy. I went to EMDR therapy, cranial sacral therapy, and rounds and rounds of cognitive rehab with a wonderful speech and language pathologist named Katya. All of these appointments now became my new social life. My friends were thinning. Between certain friends and family members from my family and my husband's family, I was actually called names.
Stacia Bissell:I was asked if I was faking it. I was mocked openly the first time I went out socially because I couldn't read the menu. And one former friend who works with special education students, no less, told me if I would just get up off the couch, get moving, and do more, I'd get all better. And while cocooning isn't the right answer, neither was that theory. And I tell you this to remind you that sometimes when you go through something like this, you learn that sometimes your circle sort of decreases in size, but often that can increase its value.
Stacia Bissell:I share this to make the point that sometimes it's hard for those in your circle to see and understand exactly what is happening after a person has suffered a brain injury, that their goodness and intellect is still there, but their processes for doing things is what has changed. Maybe they have less stamina. Maybe their emotional foundation isn't as steady as it was. Others have to resist the temptation to minimize a survivor's symptoms and remember that resilience will grow from their support. I recognize that it's hard to accept that the role of that family and friends have played in the life of a survivor has also changed drastically sometimes.
Stacia Bissell:There is an abundance of frustration, grief, and loss going around after the brain injury, probably the largest forfeiture being that the survivor's present and future identity is fundamentally altered. A survivor's life plan may not go the way it may have been mapped out. But remember, this doesn't mean that life won't be good, great, even better in some or many ways. So in this virtual room today, you know, we should all just take a moment and offer empathy for the survivors and the caregivers through that shared and not so simple experience of having a life disrupted. I continued with Katya in cognitive rehab where I was, for a long time, I think I I counted once, I had something like 36 or 40 up to something ridiculous, like up to 40 appointments, call it, where I was taught how to do simple everyday things again, like cook, clean, grocery shop, go out successfully in public, efficiently plan and sequence my day, manage fatigue and migraines, help navigate speech and hearing issues, and many, many other things.
Stacia Bissell:As you can see, there was no way I was returning to week after the weekend to work after the weekend of my accident. I had a lot of work to do, and an equal amount of that work revolved around the emotional piece of gaining acceptance of the fact that the very capable of me was very different now and that I had to adjust and find ways to be comfortable wearing this new pair of shoes, metaphorically speaking, that pinched my toes and rubbed the wrong way. I had walked away with a number of post concussion symptoms. The quantity of my disorders has not changed in thirteen years. I have all the same symptoms now that I had then other than I can now sense temperatures and my daily headaches have gone.
Stacia Bissell:The quality has changed because having a TBI means that I have to work daily using the strategies that Katya Katya taught me in cognitive rehab. She said if I would stop fighting my injury, start accepting it, and begin working hard at managing it, I might recover more. And I was scared enough and hopeful enough to listen to her. Thankfully, I listened to her. At one appointment, I remember failing miserably at a task that Katya had me do with a deck of cards.
Stacia Bissell:The task was such that when it was completed, I would turn the cards over to see if I put them all in the right piles that matched the suits, but they were all scrambled up. And this was probably one of the most insightful and pivotal moments for me. The results were in. Every suit was in every pile, and they didn't lie. I could see it in front of me, black and red, and that was uncomfortable for me.
Stacia Bissell:This really gave me insight into what was going on inside my brain. And that's the day I went home and said to myself, okay, Stacia. What are you gonna do about this? Basically, I knew I needed to wear these uncomfortable brain injury shoes and start walking. And I also realized that if I twisted my ankle or fell down, I needed to get back up and keep climbing up.
Stacia Bissell:It was because of Katya and also that particular event that that day, I put my I made three goals. I put myself on a mission that day. Number one, to educate myself as much as I could about brain injury in general. Number two, to become as insightful as I could about the specifics of my brain injury. And three, to also be a voice for brain injury, to educate where other survivors cannot.
Stacia Bissell:And these three things keep me moving today, even on the days when my feet are sore from wearing those not so comfortable new shoes. My husband of thirty years took on more and more on top of his demanding job. But sadly, about a year after my bike accident when I wasn't really on this earth yet, when I was still in survival mode, and I was really struggling to connect the dots in many areas of my life, our marriage took a turn and we separated and eventually divorced. Statistics show that this is a common relationship story post brain injury, sadly. We continue to co parent together as necessary, but this unfortunate layer caused my healing to be on a much slower path with negative residual effects that can't ever be measured.
Stacia Bissell:I mentioned I went back to work for three hours a day after eight months of being out. Finally, at twelve months after the accident, I went back full time with a number of accommodations, written accommodations, and I struggled. In a busy middle school, there's a lot of stimulation. Thankfully, had a boss who did a great job following my accommodations and then some. For example, he made sure that my office was away from classrooms and the hallways where 600 kids would loudly storm through multiple times a day.
Stacia Bissell:He had the fluorescent bulbs taken out of my office ceiling. He magically made the 24 bells a day not ring in my office. He would turn down his walkie talkie whenever he'd walk into my office or be in my company. He knew that when someone said something on the walkie talkie, it would startle me. He admitted that when he heard I had had a concussion, he had an athletic frame of mind and thought it would resolve like so many of the athletes that he had coached over his career who had had concussions, or so he thought they resolved.
Stacia Bissell:But he quickly understood it was more than that for me and began and became, committed to helping me succeed. I loved the mission he put himself on. He said he felt lucky to be able to provide as many of these accommodations as he could. He knew I'd always been a good employee. I was sensitive to my craft, proud of my reputation, and he knew I wouldn't exploit the accommodations and knew that the better I got and the stronger I got, the longer my day would eventually be and the more productive I'd be.
Stacia Bissell:He told me many years later down the road that he also saw that during this time I was doubting myself, which wasn't the norm, that I had anxieties that he hadn't seen before, that I was somewhat emotionless and not as quick to laugh as I used to be because I was working so hard at concentrating, always trying to keep up. But he understood that in order for him to get the most out of me, he had to be adaptive to the unique set set of circumstances that I came back with. And I tell you this because I want you to see what concussion in the workplace can look like. It can be really respectful and kind and valuable for the employee and the employer. I say this for those of you who are at work or trying to get back to work.
Stacia Bissell:Even so, at the end of my first year back full time, my neurologist could tell I was struggling. I was tired. I was unhealthy. I had a poor quality of life. And she told me, you're not going to go back.
Stacia Bissell:I begged her to let me stay. I was experiencing so much loss from everything else familiar. I mean, I was different. My husband was gone. My kids happened to be empty nesting me at the same time.
Stacia Bissell:Family and friends were avoiding me because I was different, and they didn't know what to do with that. I think that my neurologist could see that this job was, in a way, keeping my feet on the ground. So she cut me a deal for allowing me to return the second year and said that I needed to rest over the summer and that at my first appointment with her in October after school started, if she didn't like what she saw, she would pull me from my job. And I had to agree to go quietly. So I agreed to that.
Stacia Bissell:And then in August, right before school started, she closed her practice and moved to Pennsylvania. And I didn't have a doctor in October when I was already in trouble, and the school year had just begun. So that second year was marked by naps. I would nap every day when I got home, usually twice a day on the weekends so that I would be ready for Monday mornings. And I worked at home late every night to get my work done from that day because I was slower now and not finishing things while I was at work.
Stacia Bissell:I would have just about enough energy in my spare time to get groceries, clean a little, make food, and take care of a house, a yard, and bills that used to be maintained by someone else. I was not social, no time or energy, so I was fairly isolated as well. I barely made it to the end of that second year back at school. There was an accumulated effect going on by now, and I had no doctor during that second year who could officially decide how to help me. But because I'm a glutton for punishment and didn't know what else to do for myself, I decided I would rest over the summer and try it again year three.
Stacia Bissell:My principal retired over the summer, and when a new principal took over that third year, she did not follow my accommodations. In fact, she gave me a new office at the top of a busy stairwell where hundreds of preteens loudly ran by multiple times a day. I heard those 24 piercing bells ring every day, startling out of me out of my skin practically, and I was given an office mate, something that I wasn't supposed to have so I could have some quiet time to think and do my work. In addition to maintaining my job as the academic coach of the building, I was now given two different math classes to teach in two different grades, grades that I hadn't taught in years. I was given the role of math department head and expected to cover the in house suspension room every day, one period, and keep up with the job that I had been struggling with.
Stacia Bissell:After just three weeks of this incredibly difficult situation, I then received my first ever letter of misconduct from the new principal. And let me back up. I was struggling, keeping up. A colleague and I put our heads together and decided to combine and coteach our two small classes that occurred at the same time every day to relieve some of the pressure off of both of us. Coteaching is a great model in schools, and it was working.
Stacia Bissell:It was about the only relief I got every day. But in that letter from my new principal, it said that I had failed and or refused to comply with my work schedule and that my conduct could have jeopardized the well-being of my students and negatively impacted other staff members. And the letter further stated that an investigation would follow. Wow. I was so angry.
Stacia Bissell:I was so ashamed. I had always had stellar performance reviews even in the two years prior at post brain injury, but prior to this when I was struggling. Thankfully, I just got a new, smart, and intuitive doctor, and he pulled me that day, and I've never been back. But what followed was a very, very low point in my life that I had to climb out of. I guess it was because it was the final connection lost to the woman in the glass box.
Stacia Bissell:I hadn't realized how tightly I had been hanging onto that piece of her. I didn't want to be this new person wearing this uncomfortable pair of brain injury shoes, but it was what I was dealt. It was the pair of shoes in my closet now, and it was the beginning of a big climb in those shoes. What followed was the start of navigating disability retirement systems, years of a difficult moments engaging in our legal system as well. This is a common story also, a sad one and a wrong one.
Stacia Bissell:There really is a lot of education to be done out there, and I am so so grateful for organizations like this one that help folks like us navigate things like this. And these are exactly the reasons why it's imperative for all of us to get involved in organizations that support brain injury, advocating, volunteering, participating, donating, writing, and speaking our stories so that the world becomes less ignorant and more educated about this silent epidemic and chronic epidemic. So let's talk about rebuilding. Let's talk about putting on the damn brain injury shoes even when you don't like the way they fit or look on you and using acceptance and hard work and determination to hike as far as you can into this new wilderness. For me, the end of my beloved career was the point when I stepped foot into the Brain Injury Association of Massachusetts.
Stacia Bissell:At the urging of a close friend, I attended my first support group, and that was a game changer. And I can honestly say if you're a survivor and have been avoiding them like I did, don't delay any longer. Give them a try. After leaving my job, I saw a decline in my headaches. I had had a headache every single day for three years and sometimes migraine spikes in between that would last for days, but the daily headaches finally subsided.
Stacia Bissell:I started to exercise more. I began volunteering at the Brain Injury Association of Massachusetts. I started writing my story down, and I started doing speaking engagements. I cofounded a support group for survivors and caregivers in a neighboring town, and I always love sharing that that when that group of specific survivors and caregivers were canvassed by me for what TBI meant to them, they collectively came up with this statement. And I'm quoting here.
Stacia Bissell:TBI is invisible and nondiscriminatory. It can be about loss, shame, missing yourself, discovery, courage, and persistence while pioneering your own new direction. Oh my god. Spot on. Right?
Stacia Bissell:I also helped spearhead a coalition with interested legislators, the Brain Injury Association of Massachusetts, an area pediatrician to develop and deliver a professional development package to teachers. A handful of my articles have been published in Hope Magazine, which is David and Sarah Grant's gift to us all. And earlier this year, my brain injury story titled breaking the glass box was published in the bestselling book Deserts to Mountaintops, choosing our healing through radical self acceptance. I'm a brain injury coach and mentor for hire, helping those who wanna make sense of their brain injury journey. You can learn more about me on my website, tbimentor.com, and I believe that, and the book will be placed in the chat.
Stacia Bissell:Okay. So don't get me wrong. I still have my days, and those are the days I have to be especially determined to work harder to help myself through them to remember self care and recall what I learned from the defeats I encountered while relearning things and finding new and meaningful activities and contributions to society. I know that suffering well is not the answer. Finding meaning is what helps tolerate any discomfort.
Stacia Bissell:Admittedly, I'm afraid of my future a little, but I haven't been afraid to start over. In fact, I've gone down paths that proven that, and some have worked out and some haven't. I was on a fairly predictable path before my brain injury, and now there are many unknowns. And it's a known fact that survivors of brain injury don't acclimate easily to changes. So feeling insecure or anxious about the unknowns is common and normal.
Stacia Bissell:I commit admit that I'm sad about potentially not remembering important conversations and moments with with important people in my life. I'm concerned about making wrong decisions because I can't sequence steps or understand consequences or simply cannot see the whole picture of something at one time. And my migraines and fatigue levels can still kick the crap out of me at times. But this is what I hope for. I hope not to be a burden to anyone.
Stacia Bissell:I hope to be independent, to learn lots of new things in my life, to feel worthy of good things again, and to have my children witness me be successful at something again. Thankfully, I've learned that I can make and sustain meaningful relationships with quality people who are doing the hard work in their lives too. I've learned that traveling builds a stronger brain just by having new experiences. I've learned how to grow some of my own food and take down trees for firewood thanks to the chainsaw that my sister gave me on my fiftieth birthday. I'm still a mom to my amazing three children and their spouses and now three grandchildren.
Stacia Bissell:And those grandchildren, my goodness, they have revived feelings of deep joy within me, I'd say the deepest in thirteen years. I camp in the White Mountains Of New Hampshire every year with my growing family. I love to kayak and be in the woods hiking or walking or on horseback riding, you know, horseback whenever that opportunity is available. And, yes, I've gotten on my bike again. I've learned to say yes to things like ziplining and public speaking.
Stacia Bissell:I finally learned how to say no, and I've learned to say no way to an expiration date on my recovery. At one talk I did a few years ago, someone from the audience asked me if I was glad that this happened to me. No. I'm not here as an advertisement for brain injury. You know, just bang your head, and you can have it all too.
Stacia Bissell:No. But, seriously, some of the greatest gifts I've had in my life are ones I've been given since my TBI. I've been given the gift of slowing down. I didn't really have a choice, but I've been afforded that space to notice things, you know, like butterflies or the way the breeze feels on my skin and to read people's faces better because I take time to notice. I think I'm nicer and more empathetic.
Stacia Bissell:I've learned to be grateful and hopeful and to provide hope and insight through my mission and passion for coaching and educating and speaking to those living with a brain injury or whose loved one, client, or patient may have one. I'm grateful for the days when flourishing stacia is present and TBI stacia is nowhere in sight. I'm grateful that some folks have a memory of the old stacia in terms of the home she built and the relationships she cultivated and the children she raised and the holidays she hosted and the students she taught. And I'm really grateful for the kindness and acceptance of the people I've met since my brain injury. You guys are my heroes out there, And even for the people I don't know anymore, who knows?
Stacia Bissell:Maybe their misunderstanding of brain injury will clear up someday. My message to the other survivors out there today, I'm encouraging you to flop at times until you make it. The first three to five years are the toughest. Work hard at understanding your brain injury. Strive for balance in your life.
Stacia Bissell:Quiet your mind and move your body however you can. Surround yourself with quality people, fresh air, and good food. Find your acceptance of this tough thing. Acceptance is a miraculous cure. This thing is going to be invisible to others, but not to you.
Stacia Bissell:It will be what you make it to be. Take good care of those brain injury shoes because they will be the shoes you wear for a long time. And to the loved ones and caregivers out there, the same list goes for you. Take care of yourself. And also allow for some kind, respectful, and guided floundering to take place with your survivor.
Stacia Bissell:It may lead to insight and progress. And also remember that their resilience grows from your support. Last, let me just simply say that I realize my brain is still injured, and I'll always have to manage it wisely, But there is nothing wrong with my heart. So thank you. Let's do some q and a and talk together.
Stacia Bissell:Jeannie, I'll let you lead the way on that.
Jean Lengenfelder:Thank you so much, Stacia, for for the wonderful presentation and and for sharing your story with us.
Stacia Bissell:So I had a TBI, it was four years ago, and, just wondering if certain things are, or everything with a TBI are forever, or it just makes things a little harder sometimes?
Stacia Bissell:Are you asking me if your symptoms will be there forever?
Stacia Bissell:I guess so. I kinda feel like I'm still trying to figure out part of me, which feels silly.
Stacia Bissell:No. Not silly at all. My take is that that your healing journey never stops. There's no expiration date. I feel better to this year than I have, and I'm thirteen years out, than I did three years ago.
Stacia Bissell:I feel like I'm stronger. So I I do think that you're four years out. I mentioned earlier the first three to five are the toughest. Keep working at it. Keep keep protecting your brain.
Stacia Bissell:Keep managing it wisely.
Jean Lengenfelder:We had a question that was sent privately in the chat. If could you repeat your mantra for survivors that you had mentioned before?
Stacia Bissell:Mhmm. Yeah. I encourage survivors to flop at times until you make
Stacia Bissell:it. I
Stacia Bissell:mentioned that the first three to five years are the toughest and to work hard at understanding your own brain injury. I mentioned striving for balance in your life, to quiet your mind, move your body however you can, surround yourself with quality people, fresh air, and good food, and find your acceptance of this tough thing and take good care of those brain injury issues. I think that was what I was being asked. And I can certainly put that in, I don't know, give that to Eugene, and we can pass it on. Yeah.
Jean Lengenfelder:We can we can do that. Absolutely. And then I have one more from the chat, and then we'll go we'll go to some more hands being raised. One of the questions was, how do you see your life going forward in the next twenty, thirty years? What do you think your future looks like?
Stacia Bissell:Oh, that's such a great question. I see a lot of well, twenty or thirty years. I I hope. I'm I'm gonna be 60 next year, so I'm hoping. So between 60 and 90, a lot of family time.
Stacia Bissell:I want to continue helping the brain injury community. I hope to share my my life with someone at some point. I think that I wanna continue learning new things, from everything from art to technology. I want to bring more, time in the woods and on horseback. So these are sort of some of the things in traveling.
Stacia Bissell:Those are how I see myself going. I think there's something else also in the world and work of brain injury. I haven't figured it out yet aside from coaching and speaking and authoring. But keep follow me on on Instagram and and check-in with my website. Stay tuned.
Stacia Bissell:It's a great question.
Jean Lengenfelder:And I also see that Zena has, their hand raised. So, Zena, if you would like to unmute.
Zena:Yes. Hi. Hi, Thank you for sharing your story. And I just want to give you a little bit of background. I work for the office of Vocational Rehabilitation in Wandsport, Pennsylvania.
Zena:And, I logged on today because, our office is getting ready to sponsor a traumatic brain injury symposium. And so this has definitely kicked off some of my education and dealings with someone who has a traumatic brain injury. And I also worked for a provider who provided services to someone who to to individuals with brain injury. And, it always seems to be very common that the supports of people who have the brain injury feel like they're flailing around and don't have as many supports as they would like. And and just like you had mentioned earlier about, you know, your husband and you had separated because they're just not given enough tools to learn how to deal with the the new person that has a has, you know, developed after the injury.
Zena:And on top of that, you're going through disability adjustment for yourself in the meantime. So, the symposium is to help provide, guides and tools and not only for someone with a traumatic brain injury, but also their support. And I kind of feel like, for someone who's experiencing a traumatic brain injury, you always wanna educate yourself on on that topic and find out different resources. And as I was combing through the resources, I found that they weren't very easy to find. And so if I had a traumatic brain injury and I'm getting overwhelmed and I'm tired and I'm trying to research supports, it's just really not there, and it's it's a big huge puzzle piece.
Zena:So that kind of frustrated me, and I wanted to know if you experienced the same.
Stacia Bissell:Yes. Yeah. I think the education never stops. So that's why mentioned in my, you know, for survivors to learn as much as you can about your brain injury, brain injury in general. There is a lot there are a lot of different therapies and things you can try.
Stacia Bissell:There is no one, you know, magic thing. But try a lot. Read a lot. Try just keep trying. Keep reading.
Stacia Bissell:Keep educating yourself. And, Zena, thank you for the work you do.
Zena:Yep. I wanted to let you know that I also connect with you on LinkedIn, so I would like to keep in contact with you.
Stacia Bissell:Okay. Thank you.
Zena:You're welcome.
Jean Lengenfelder:I think we have time for one more question. There were some other questions, that came in in the chat, and I know others have their hand raised. So, so I would just encourage everyone to reach out, through tbimentor.com, to Stacia directly. But, Kathleen, why don't we get to your question next if you wanna unmute yourself?
Stacia Bissell:I just have to say for the whole group, this woman is amazing. I got a chance to work with her one on one, and it was absolutely phenomenal and game changing for me. It helped me see that there was hope. And I think that's the biggest word that, in fact, a friend, I have nothing on now, but gave me a bracelet that said hope. Because I feel like there is hope.
Stacia Bissell:One of the first questions I ask you, will I ever be able to get on an air And she said, yes. With modifications, with support, but you'll be able to do it. But the question I have here, I've participated in love your brain, Brain Injury of America, some little different groups here and there, and I think the support is so incredible. But it's like, how do you find maybe that how do you develop a group where it's like, other than one on one, I'm doing a little bit, but where you're getting together more consistently but have a facilitator, you know, and kinda have, you know, some some group of people that you connect with but that that is more consistent and regular. You know?
Stacia Bissell:Love Your Brain is amazing, but it's six weeks little chunks. But it's facilitated very nicely.
Jean Lengenfelder:Mhmm.
Stacia Bissell:And and I think I like the limited size, like, six or eight people versus 15 or 20. You know? So just wanted to throw that out because I find tapping into those supports to be huge at recalibrating, like, okay. I'm not strange. I'm not weird.
Stacia Bissell:I'm not losing my mind. I'm not because I get the whole thing. Oh, well, you're 62. That's normal. Or, oh, you look so great.
Stacia Bissell:Or look how you can move. And, you know, and you're just like you don't know what it's like with my head pounding, my ears ringing, and but I'm still getting up and doing something because I have to or I lose my mind. You know?
Stacia Bissell:Well, I I'm I'm I think your question is how do you find those small group social supports that understand brain injury? And I I'm confident that any one of us in this Zoom room today could probably answer that. You know, I I would definitely look, if you're looking for in person, you're gonna need to obvious no Zoom. Are you looking for a virtual?
Stacia Bissell:Virtual. Yep.
Stacia Bissell:Virtual. There are a number of virtual support groups for brain injury out there. I happen to know of one on a on a Tuesday that I might be able to get you into. And, and so and then there you can always choose you know, two or three of you could break away and do an an extra one a week if if without that facilitator. You know, you can choose to do that.
Stacia Bissell:Okay. You could spearhead that or you could rotate.
Stacia Bissell:Right. Alright. Thank you.
Stacia Bissell:Good to see you.
Jean Lengenfelder:Thank you so much, Stacia. We really, appreciate you for your presentation today. And, again, anyone who would like more information or be able to connect with Stacia, please visit, tbimentor.com to connect with her. So immediately after this presentation, there's gonna be a survey for you to answer about today's presentation. We'll also be following up with an email survey if you're unable to complete the survey now.
Jean Lengenfelder:And for anyone who's local to us in New Jersey, we hope that you can join us for our TBI conference on Thursday, September 26. More information about that can be found on the Kessler Foundation website. Again, thank you so much, Stacia, for joining us today. We really appreciate you and appreciate your time with us.
Stacia Bissell:That goes both ways. Thank you everyone for being here and taking time out of your day. It was a pleasure speaking to you.
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