Carol Rohl

Eleven years post-stroke, good friend and musician from Australia, Penny Davies, visited us in Maine. She wrote a beautiful poem about my recovery, based on the concept of starting each day with a pile of quarters energy-wise. By the end of the day, they would be gone and I had to be very smart about how I spent them.

When my husband, Gordon Bok read the poem, he was inspired to write a tune to go with it. On a Maine visit a few years later, Penny, Gordon and Penny’s husband, Roger Ilott recorded this version. I am so grateful for the love and caring they express in their singing of it.

Listen to the recording here.

Lyrics to the song can be found here. (PDF attached to this email)

Thank you!

I wrote my story in October of 2015 and again in October of 2022 and now here is where I am today.

It all started in 2005. We had just gotten engaged and I was noticing a flashing in the lower left-hand corner of my eyes, known as vision seizures. My PCP sent me for an MRI and found that I had a brain tumor. I was sent to Mass General in Boston to see a specialist. The tumor kept growing and we were told it needed to be removed before it was too late. It was a very rare tumor and the oncologist said that there were only 50 known cases of this type of tumor in the world in 2009 that they knew of. They did know that it can grow back on other organs.

I mentioned to my new wife-to-be that if she wanted to opt out of marriage because of circumstances unknown, that I would understand. She said, no, that we were in this together and she has been there right along the whole way. We married August 23, 2006, and she is the most loving, caring wife and caregiver I could ever ask for. And I know it was harder on her than I. A caregiver and support system are of most importance to get through a TBI or ABI.

On April 9 2009, I had the operation that changed my life forever. The following evening, I developed two brain hemorrhages (strokes), one each, on the back left and right side of the brain. I was in the Boston hospital for ten days, and for the first three days, I was completely blind. I didn’t know where I was, who was there, or what had happened. It was scary. I later learned that my loving wife was there all along.

I was transported to a local hospital in Lewiston where I had only a week of rehab. In that week I saw or imagined there were large holes in the hospital floor, things flying around, and the tops of tables peeling and so on. It kind of freaked me out. I was sent home until I could start rehabilitation. While in the hospital in Lewiston, something strange happened to me and I never told many people about it because I didn’t want people to think I was nuts. I will share it here now. One day at the foot of my bed I saw this image appear. It was a face in the colors of light blue, tan and light green. It started freaking me out, but for some reason I said, “I don’t want to be like this.” My roommate said, “Who are you talking to?” I said, “There is something at the foot of my bed, can’t you see it?” He said, “There is nothing there.” I never heard the words, but I felt the words, “You’re going to be okay.” Then it slowly disappeared. The only person I told was Cheryl. I know some won’t believe or understand and that’s okay. A couple of years later it still weighed on me so I asked one of the pastors (Seth) from church if he would pick me up for breakfast as I wanted to share this with him. After telling Seth what happened, he mentioned that it most likely could have been an angel.

While waiting at home with constant care, it was very difficult for me to accept what was happening to me. I only saw half of things, like peoples’ faces, because I had lost my left peripheral vision in both eyes and could only see half of everything in both eyes. I still have this issue. I couldn’t read, write, walk, or talk very well and had memory problems. I couldn’t even dress myself; Cheryl had to lay my clothes out on the bed for me because I didn’t know what to put on first. I had to learn these things all over again. I didn’t know if I was ever going to get better and contemplated suicide. I just no longer wanted to be like this.

A few months later I got into rehabilitation at WestSide NeuroRehab in Lewiston and things started to get better very slowly, but I was making progress. Learning all over was troubling at times and I would get very frustrated at myself and at others sometimes for not understanding what I was going through and what was going on inside my head. Sure, I looked normal, but I sure as heck didn’t feel normal. I felt I was getting better until the insurance ran out.

I lost my ability to drive, which has been my biggest loss of independence. Of anything, this I miss the most. People that I worked with and those I thought were friends are not in my life like they used to be. I’ve become more sensitive, and look at life differently. I cherish every day, good or bad.

I don’t know if I have gotten used to me being the way I am or if I have improved some. I guess a little of both. I’m very grateful I didn’t take my life when I was at my worst. There is so much to live for, especially family. I’m doing the best I can now, and I realize that if you think you have it bad, well, there is someone out there worse off than you. Yes, every day is a challenge, people that don’t know your story can be cruel, and my new life is a new journey that has a lot of unknowns, but that’s okay. I have a new family of friends with TBI and ABI. They understand me as I do them.

My brain tumor grew back two years after it was removed and I had proton radiation done, which is why I have to go to Boston every year for an MRI and full body scan because this type of tumor can grow back on other organs. They drilled 3 small holes into my skull and snapped small steel rods into my skull. A special mask was made and on the day of the proton radiation I was strapped onto a table and the mask was clamped down so I couldn’t move. The table then proceeded to rotate every which way, even upside down. The 3 steel rods were used to pinpoint only the tumor and not the brain itself.

 I clean house, cook, keep up the yard work, cut & split wood, build wood projects, fish, and so much more. My goal is now to help others with brain disabilities and Veterans. I have had eight heart attacks, died twice, have neuropathy, two strokes, A-Fib, diabetes, vision impairment, exposure to Agent Orange and I was somewhat unstable. One must never give up after having a TBI /ABI, as there is so much to live for. If you fall, get up and move forward. Live, laugh, love; it won’t be perfect but it will get better.

 As hard as it was for me with my daily struggles and for my wife also having to do many things for me, I had to stop feeling sorry for myself for the things I could no longer do and focus on what I could do. That’s when I went to my first support group meeting and saw that I wasn’t alone and there were others just like me. I’ve gone to every one and only missed two meetings in the last 16 years.

It was about 12 years ago at one of the meetings there was word that Maine was in the process of starting the BIAA-ME (Brain Injury Association of America – Maine Chapter). I did join because I wanted to find a way of giving back and helping people with ABI/TBI. This is where things started changing for me. I had a purpose! I try to be involved as best that I can by helping out wherever I can.

In the last 8-10 years, I also became the Brain Injury Support Group Leader for the Lewiston area. It has kept me busy and I like to meet new people and try and help those that are struggling with ABI/TBI. I remember when I had my strokes there wasn’t much help available as to what to expect and where to get answers. So, leading this Support Group gives me a purpose to help others the best I can. There are a lot of great people I’ve met through BIAA-ME, our support group and different support groups.

 I’ve learned that I can do a lot of things I thought I couldn’t or others thought I couldn’t do, but if there’s a will there’s a way. What I’m most proud of besides being a military veteran is my ability to do 5K’s. At one of the Brain Injury Resource Fairs my wife and I attended 8 years ago, I saw this three-wheeled walking bike for people with balance issues and I tried it and liked it. My son Scott started a Go Fund Me page and within 3 day we had enough to buy the Afari which was made in Brunswick, Maine by Mobility Technologies. Unfortunately, they are no longer in business. In the last 9 years I’ve done 19 5K’s with it. I do these to help support Cancer, Brain tumors, Aneurysms, Alzheimer’s, and the Travis Mills Foundation for Veterans.

I’m proud that I never gave up, I’ve found purpose, and I have accepted challenges that I thought I’d never be able to do again. If you want to do something, get involved. Start out small steps and work toward a goal. I will be 73 in December, and it’s never too late to set a goal! There is always hope so never give up. There are groups to help you achieve what you hope to do. There are devices to help you. Don’t be afraid to ask for help. Join a support group if you can. Get involved. Most of all, don’t be afraid to try something new.

I probably wouldn’t be where I am today if it wasn’t for my wife, the support groups, BIAA-ME, Sarah Gaffney (Coordinator for BIAA-ME), the Maine Strong Balance Center and more.

One of my biggest wins was going to therapy at the Maine Strong Balance Center in South Portland last year. They gave a presentation a couple of years ago at the Brain Injury Conference and we decided to try them out. This really helped me with my balance. I now no longer have to walk with a cane or walking stick. It changed my life.

I know this was long, so thank you for reading this. Yes, I’m 72 years old and I’m still going strong because I didn’t give up. I encourage those with any type of brain injury to get involved and don’t give up. There is always hope. Stay positive, laugh, be happy, love and believe in God.

I’ve started writing this opening paragraph about a dozen times now.  I just can’t seem to find the way to tell my story.  Maybe it’s because the brain is such a complicated organ that I struggle with the “gray matter” of it.  This injury has touched almost every aspect of my life, and as a fairly organized and driven personality, I want a definitive ending to it.

One afternoon at work in the fall of 2022, I hit my head. I knew I was going to have a concussion given the force of the hit. I was honestly shocked I did not lose consciousness. When I went to the emergency room the doctor told me I had a mild concussion.  My symptoms seemed straight forward.  I had no history of prior injuries, so they did not see recommend imaging.  Aside from normal dizziness and nausea symptoms, everything seemed fine.  I went home with a 2-4-week recovery prognosis.

Over the course of the ensuing week, though, my symptoms increased.  The following Monday I didn’t feel well enough to work. I was given a few more days to recover and prescribed a shortened workday when I did return.  I had a particularly hard time with screens. Using a computer, tablet, or cell phone made me feel immediately disoriented and nauseous.  My medical provider told me to limit my screen time to ten minutes per hour.  At my job, I used my computer for email, clinical, and remote meetings about 90% of the time, so that was nearly impossible.

After four weeks, I still was not feeling right.  Any kind of LCD monitor made me almost immediately ill, and I couldn’t get my work done.  I was struggling to find words, I misplaced items, and I mixed up dates and meeting times. I forgot to put my car in park.  Sounds bothered me, and I had to wear earplugs. Rapid movement was disorienting.  Driving for more than 30 minutes was miserable. It became clear that I wasn’t healing as predicted.  As many of my symptoms seemed linked to my eyesight, I was referred to a neuro-optometrist.

I went for a neuro-optometry evaluation about two months after my injury.  Results showed I had significant issues: my eyes had difficulty tracking objects, my focal point was off center, and I had nystagmus.  The amount of effort it was taking for my brain to manage the garbled visual data coming in was causing my nausea, vertigo, fatigue, memory issues and “brain fog.”  The neuro-optometrist told me that he anticipated my recovery would take 3 months to a year and recommended visual and vestibular therapy. 

I had never imagined recovery would take so long.  I called my boss and shared my prognosis.  My agency shifted me to a position that did not require computer usage. That winter, I almost completely stopped using computers, my tablet and my cell phone.  I did endless puzzles and listened to a ridiculous number of podcasts.  My husband bought me a Kindle e-reader.  I could tolerate this kind of screen (e-ink) without much difficulty. I got curious and googled “e-ink monitor concussion” and discovered a medical group that had researched and recommended e-ink monitors for people recovering from concussions with visual issues.  

In the spring of 2023, I started visual therapy.  Sessions were hard, and I had daily homework to complete, but I improved a lot.  I was feeling better and had much of my energy back.  I still could not tolerate LCD screens, but my neuro-optometrist wrote a letter recommending that I have an e-ink monitor as an accommodation, and I was able to get one. With this in place, I took a new position, similar to my old one within my agency, about a year after my injury. 

Even with my different monitor, I was still dealing with symptoms on a daily basis, and so I went back to my doctor. I started vestibular therapy and was diagnosed with motion sensitivity.  Apparently, the motion detector part of my brain is on high alert at all times, further complicating the visual signals coming into my brain.

Someone along the way recommended that I apply for Vocational Rehabilitation through the state.  I work full-time, so I assumed I was “too healthy” to get services, and wasn’t sure what they could even do. I was surprised when they agreed I needed services.  I was even more shocked when Voc Rehab referred me to the Division of Blind and Visually Impaired (DBVI). I hadn’t really considered my injury as a visual impairment.  Understanding it as such has helped me better adapt to my TBI, and given me the language to help family and coworkers understand how it affects me.

It’s been about two and a half years now.  My updated prognosis is that I will have symptoms for years to come, possibly the rest of my life. Currently I am working with a vision rehabilitation technician through DBVI. They are helping me to identify work accommodations (things like text readers and computer dictation programs) to make my job less strenuous. I’m learning to adjust to brain injury.

Having a brain injury is a giant, endless lesson in humility. I’m learning to ask for help, and not to be embarrassed when I need support.  I’m learning to have a sense of humor (it IS funny when I call everything “thingy” because I can’t remember the name for it) and to offer myself grace.  I can’t compare myself to who I was or what I could do before. Some days are sad- I really miss who I was.  On other days, I look at how this experience has made me stronger. I can still raise a family and work, I just do it differently.  My story does not have a definitive “all done, you’re better” ending, and maybe that’s good enough.

Ten years ago, my health started gradually deteriorating. I knew something was wrong. After visiting my PCP and other Drs, I was eventually told all my blood work was fine and they couldn’t find a problem.  The problem was, I was feeling quite lousy every day, and it wasn’t due to stress, as several of the practitioners I visited implied to me.

In the summer of 2019, I suddenly experienced daily chronic headaches and migraines. Before that, I rarely had headaches and had never had a migraine. One day, I went into the grocery store at lunchtime and felt as though I was going to pass out after one minute inside. My head felt as though it were buzzing. I rushed out of the store, closed my eyes for a while in my parked vehicle, and then drove straight home. We called my Dr. who eventually ordered head scans and body scans and several other tests. The scans were thankfully clean. There were a few scares from the other tests, but they turned into, “you are fine.”

Headaches, severe light, sound and smell sensitivities, fatigue, sleep issues, gut problems, achy joints and the inability to concentrate made daily functioning difficult. I was not able to work. I was denied accommodations to work from home from my employer (right before the Covid fiasco turned this into a normality), which was okay because working became an impossible task given how bad I constantly felt.

A couple years later, after further visits with specialists due to much researching on my part, I was diagnosed with chronic Lyme disease by a Naturopath. At least I had finally received an official answer with medical evidence. The last five plus years, I have been treated by doctors from all over the country.  I have easily spent more than $75,000 of our own money on doctor visits, tests, supplements, many drugs and other therapies in order to have treatment. (Insurance doesn’t really cover Lyme disease treatment or many of these doctors, but that is a story for another time). 

After little reduction of symptoms in the last few years, my Osteopathic Dr. recently recommended me to a practice in South Portland, Harborview Eyecare. Dr. K’s practice is not only for general eyecare, but contains his Acquired Brain Injury Clinic. After his testing, he officially diagnosed me with Acquired Brain Injury. Dr. K clearly laid out to my wife and I this diagnosis based on my history and testing. I have had multiple injuries (too many to definitively count) in my life, including a few in the last five years, which they believe is what put my head and body over the edge. The timing lined up perfectly. I had too much brain inflammation. No other clinician or practice in the past had even touched on this or probed into my history of head trauma.

There was some relief when we were given this diagnosis. I have been given an action plan which includes daily and weekly eye exercises, special filter glasses to wear every day, prism glasses and more.  I finally now have some real hope that this health journey, which has educated me in ways I never imagined (and opened up rabbit holes I never knew existed), is heading toward an improvement in my health. I am blessed to have a supportive wife and family who have had to endure much frustration, scheduling issues and many other challenges the past several years. I remain thankful, positive, and full of hope for the future.

Here I am three years out from what I call my “Stroke of Grace.” These past three years have been quite a journey. I think of journey as a kind of movement, walking on land to a destination. Friends go on journeys to the Camino de Santiago or travel to new places/cultures to explore. This journey has become a sacred pilgrimage, a journey leading inward from physical and psychological despair toward a spiritual emergence. I, like the monarch caterpillar, am emerging from a dark chrysalis becoming a butterfly, growing new wings. These wings are tiny buds still wet, needing warmth and sunshine to unfold and emerge into a new form.

Three and a half years ago, in a nanosecond, I lost my known physical form; I lost the total use of my left side. I was paralyzed and unable to move–sit, stand or walk. Slowly, ever so slowly, I am finding my spiritual leg, arm and hand. Learning how to navigate this new terrain as a disabled wife, mother and grandmother, who was wildly independent (or thought she was) has been very challenging and overwhelming. How would I cope…live: help and care for five grandchildren, my husband, help friends in need, cook, garden, wash, help clean the house, get up and down steps, drive a car, dress myself, get out of bed, go to the bathroom, read or write poetry? It was at first about physical survival and saying YES to life. Often, I’ve wanted to say NO. Perhaps my disability has birthed a new inner mobility, an ability to listen more deeply to the other, to see with fresh eyes, hear with new ears, perceive the world anew through my heart, not my head.

I’ve had new challenges this year: having fallen three times- breaking my wrist and fracturing some bones in my arm. These falls are not unexpected with someone in my compromised state, especially as I have increased my walking, albeit with the hemi-walker. I have learned that it is so important that I be ever more vigilant and mindful with every step I take.  The continued lesson is to pay attention to everything I do: walking, sitting, standing, to my words, thoughts and actions. The simplest lapse in attention can cause a fall and a simple careless word or negative thought can cause a spiritual wound. I was unconscious of what it really means to walk. I never thought about it until I couldn’t walk or stand on my own. Now I see standing and being vertical as an extraordinary miracle! A magnificent gift we often don’t acknowledge.

And I will say here, if I’m really honest, this past year has been very hard, moments of PTSD and despair. I was told, I’m not the material for trials as I don’t have the muscle mass, I’m too old and too many years out from my stroke. There are new therapies that can help me progress, yet I am much more aware of the importance of accepting my life just as it is here and now.

At first, my focus was on getting my body back on track.  Now it’s on the inner journey.  A question that comes up is- “How do I live from the inside out, not looking back with judgement, not fearing what others see or think, but rather trusting my heart and inner wisdom and not looking from the outside in. How do I give back to the world from the confines of my wheel chair in a body that no longer fully functions?” Could the wobbly, paralyzed leg and curled hand have birthed new eyes and ears? What comes to me again and again is LOVE…How do I love more deeply? I realize that I haven’t loved deeply enough on many levels. Too often I was busy doing life rather than loving the people and beings in my life: the ladybug on the windowsill, the devoted red dog at my feet or David’s gentle hand on my back.

Isn’t life a bit like a river with a course of its own? How do we navigate the undercurrents, unexpected rapids, the fallen white pine across the rips or the big boulder my canoe gets hung up on? I no longer resist or fear what is before me, instead I surrender to it all- both the deep suffering and the exquisite joy. This isn’t easy nor pretty, but it’s one of my many lessons I am learning. By paying attention to each moment, by seeing each moment as an opportunity for spiritual growth, I am sensing what I once imagined to be the wisdom of the elders. Now, I am transforming this trauma into as much conscious awareness and spiritual maturity as I can. My self-image was shattered three years ago. Part of me died then-my ego, my vanity, my greediness, my judgment, selfishness all was shattered. Amazing Grace!!! Still, I often feel depressed, sad and alone. Deep grief washes over me unexpectedly. Looking down at the thin leg in spasm in my wheelchair, I’m often not sure whose leg I’m looking at and then I realize it’s mine. I am finding new meaning out of pain and loss.

Last year I wrote a letter to the old Sarah, a letter “letting go” of those parts of myself that do not serve me and put it in a bottle and threw it out to sea.  That was a ritual working with the element of water. Working with ritual this year, I turned to the element of fire.  I wrote down those parts of me that I needed and wanted to transform. I threw them in our fire pit on Vinalhaven and watched them burn away. For me, this is a metaphor for purification – transforming fear and doubt into trust and acceptance. I’ve held back my true self much of my life. I spoke out loud to the elements what I intend to ripen, bring to fruition before I die. As I burn off layers of protection, an inner vulnerability arises and embraces me. I see through a lens that offers a softer vision of the world. I am cultivating soft courage. In these moments, my heart cracks open to the magnificence of the simplest of things – a hummingbird or honey bee gathering nectar from the honeysuckle outside the window. There is endless wonder, angels and miracles surrounding me.

And then, most importantly, there are the people in my life who offer such comfort, love and support. In those moments, I let go of the darkness and despair that creeps in. My challenge these days is to hold the lightness and beauty in my life while simultaneously acknowledging the darkness and despair

The reality of this stroke has become clearer in this third year. I face David’s and my mortality more now. The fact that I am disabled and quite dependent on others is a truth that I now face head on. As a result, I find myself going deeper into my spirit which holds no bounds. Staying in the present moment helps guide me to living from my heart. Gratitude is a doorway for healing. Trusting and being curious to what will unfold each day opens my heart to wonders I couldn’t have imagined three years ago.  Hearing the laughter of my grandchildren, feeling the buoying of the salt water on my skin, imagining how trees connect underground– all are medicine for me.  I, too, am reminded how deep the connections to all of you are, to the butterflies, hummingbirds, the tufted tit mouse, to the tiger slug — all of these sentient beings are helping heal my body and spirit. I believe this is happening all the time, but most of the time I have not been awake to it.

I am working to find the correct pace for my days now: when to rest, when to exercise, when to meditate, when to be silent… “a time to weep and a time to laugh; a time to mourn and a time to dance; a time to keep silence and a time to speak; a time to be born and a time to die.” Resting and going slow has never been easy for me. I am finding a new pace -slower, softer. It’s a mystery-this Stroke of Grace. Because I am unable to move as I want, I sit and notice the wind in the leaves and become one with its movement. It’s a bit like flying… Not knowing where you will land. I’ve met many new thresholds, particularly confronting my own depression and anxiety. I’ve always had a tendency to self-doubt and despair, but now it is magnified by the loss of the use of my leg, arm, hand and feeling completely powerless. My sense of movement is no longer grounded in my legs. This loss, however, is a strange gift guided by forces within and around me.

I feel supported by a friends’ visits, a fresh dinner from the garden, listening to Beethoven, the Beatles, Dylan, Bach and Bok. I am inspired by reading Rudolph Steiner with friends or by dancing in the kitchen with my grandchildren doing wheelies. Oh yes, and don’t forget the mint chocolate ice cream. Indeed, there are times I swing like a pendulum between deep sadness and squeals of joy. Though I walk a bit like ET still and my left leg is like a marionette- “I’ve got rhythm, I’ve got my guy, who could ask for anything more?”

I share these moments to let you know that I’m ok. Yes, I still have challenges and limitations, but thankfully I also have moments of awe and magic. This is my purpose, my meaning, my destiny calling… to teach through my actions and words in response to this stroke. All that really matters is to love and to love some more; to wake up and connect with others through the word, poetry, conversations, a sense of wonder, music, and humor. I’ve got it all- the love, the support, the beauty, the friendship, the rhythm and my guy extraordinaire!!!  Who could ask for anything more?

Dylan Rivard (as told by Holly Rivard)

It was a cool fall afternoon on October 16, 2015. Dylan was fourteen years old and just starting his freshman year at Gould Academy in Bethel, Maine. Myself, his dad, and his younger brother Kyle were visiting from New Hampshire enjoying parents’ weekend with Dylan. We had just finished observing all his classes for the day and were about to leave for our hotel for a quick swim before the evening activities started, when Dylan was struck by a motor vehicle while on his bike.

We saw the vehicle speeding down Church Street heading toward Dylan, but we could not stop it. As we ran to Dylan, the driver sped away from the scene of the accident. Dylan was unresponsive and visibly had multiple traumatic life-threatening injuries. He was immediately taken to Maine Medical Center by Life Flight. Sickened by fear for Dylan’s life, we drove over an hour to the hospital. As we arrived, the neurologist and orthopedic surgeon met with us and informed us Dylan had a severe traumatic brain injury and that there was a high possibility that he would lose his left leg due to the severity of his injuries. Hearing those words was devastating, and we immediately knew all of our lives would change forever.

Dylan was in a coma for several days and used a ventilator which kept him alive while he fought for his life. During this time, he underwent two separate surgeries in order to save his left leg. After two weeks in the Intensive Care Unit, he was transferred to the pediatric unit at Spaulding Rehabilitation Hospital in Boston, Massachusetts. There he underwent intensive speech, occupational and physical therapies.

Prior to his accident, Dylan was a very active and bright young man. He was in the middle of his mountain bike season and looking forward to ski racing in the winter. After his accident he couldn’t even hold his head up or sit at the edge of the bed. He needed to relearn how to talk, walk, and take care of himself again. During the first several weeks, Dylan was very confused, had no attention, and could not retain memory for more than one minute at a time. He slowly showed improvements, and was released in our care from rehab six weeks later just prior to Thanksgiving.

One week after his release from Spaulding, we met with the surgeon for his left leg injury and received the shattering news that if he did not undergo another eight-hour surgery, including revascularizing, they would have to amputate his leg. Therefore, two weeks after finally coming home, he was back at Maine Medical Center for his third surgery on his leg. Following a successful surgery, he had to spend two more weeks in the hospital while the staff at Maine Medical monitored his leg for signs of vascular failure, in which case he would have been immediately sent to the operating room for more surgery.

He did very well and was finally sent home with us caring for him. He was able to attend outpatient physical, occupational and speech therapies, as well as tutoring and therapies through our local public high school in New Hampshire. We worked with Dylan daily to regain his skills both physically and academically. Dylan was working very hard and determined to get his life back. Late into winter Dylan underwent his fourth surgery on his left leg, which was a bone graft, finally saving his leg from amputation.

It was now August of 2016, and our family had moved from New Hampshire to Maine in order for Dylan to continue to attend Gould Academy as a day student. He would need the support of his family to navigate the challenges of school and would not be able to board as he had once done prior to his accident. He received academic assistance from the school as well as from us. He was able to rejoin the mountain bike team in the fall of 2016.

In the winter he found it very difficult to be in a race ski boot with his left leg injury, and therefore was unable to be as competitive as he was prior to his accident. Despite that, he was out skiing and enjoying his winter. Throughout his recovery, Dylan struggled with self-confidence and social connections. As his parents, this has been heartbreaking to watch. Through counseling and support from close friends and family, he has made progress, but he continues to be challenged in these areas.

Dylan graduated from Gould Academy in 2020 during the start of the pandemic, so he was unable to have a formal graduation, but we celebrated his extraordinary accomplishment at home as a family. In the fall of 2020, he attended the College for Creative Studies in Michigan, majoring in Product Design. He was able to use the academic support center to assist him and, of course, he leaned on us for support. He graduated from college this past May with his bachelor’s degree in product design, and we were so very proud of him.  We will always be there to support him as he continues to recover from his accident and spread his wings on his next adventure. We can’t wait to see what the future holds for him.

As people go about their lives, they don’t generally think to themselves “I’m going to prepare for disability at a young age.” I was in no way prepared for what having a brain injury entailed. If you had told me in 2016 that in 8 years, I would be a stroke survivor, sharing my story at brain injury conferences, I would have straight up called you a liar. I would have laughed and said, “Strokes are for old people, silly.” I guess I would be the silly one.

In August of 2016, my husband and I were 6 months into homeownership. I was 33 years old, a newly-licensed insurance agent, had a booming direct sales business, and was getting into Crossfit. One day at work my hand started to tingle. How could my hand fall asleep while I was typing an email? Is this what carpel tunnel syndrome feels like? The next day the tingling spread to my foot and the right side of my face.

I immediately called my primary care physician and got an appointment. She thought it could be a mineral deficiency and ordered a series of blood tests. I went for bloodwork multiple times over the next week. Ten days after my initial symptom, I was scheduled for a follow-up. I woke up nauseous, dizzy, and just feeling off. At my follow-up, my primary care said she wasn’t sure what was going on, but she would order some tests and they would call me to schedule. With my symptoms, I was not comfortable driving, so my mother-in-law, Myra, came to the doctor’s office to drive me and my car home. In the 10-minute drive home, I became paralyzed on my right side. As I dragged my right leg up the stairs into my house Myra yelled “THIS IS NOT OKAY” and drove me to the emergency room. I was doing what the doctor told me, what was she so upset about?

The ER doctor took my symptoms very seriously, ordered a battery of tests, and soon informed me that I had experienced a stroke. Well, that’s why Myra was so upset! Neither my husband nor I knew what to do, what to expect, or how it would affect our lives. Over the next year, I learned to walk and write again, learned about alternative therapies, and experienced the deepest grief I’ve ever felt. I regularly screamed, cried, and mentally shut down for days or weeks on end. I avoided dealing with the hard things. But when I look back, I realize I was still advocating for my needs, even when it seemed like the hardest thing to do, even when I took weeks in between those hard things. I refused to give up. I refused to be a victim of circumstance.

I’ve experienced a lot of grief in my life. Something I learned at a young age is that grief does not go away, it just changes. Three years post-stroke and my grief finally changed. I had mourned the loss of who I was, my old identity, and my old life. Throughout the first few years of my recovery, I kept asking myself “Why?” “Why did this happen to me?” “What’s the reason for this?” “What’s the reason for something so traumatic?” Then I realized that the “why” is because this is my vehicle for giving back! Sharing the way my stroke impacted my life is the “why”.

Because of my stroke, I have…

• Met incredible people I never would have met otherwise
• Taught self-advocacy to fellow survivors
• Started the Middle People Project
• Joined the BIAA-ME Advisory Board
• Developed more compassion
• Learned to appreciate the fact that I am alive
• Spoken at conferences and support groups
• Done a podcast interview
• Advocated for systemic change

I still scream, cry, and have periods of shutdown, but they are shorter now. I have learned to pace myself, have gratitude for everything (the good, the bad, and the ugly), and lean into my passions. I have built a life that I love, and I make choices every day that align with that life. Happiness and gratitude are not external. They are internal and a choice. That choice is what pulls me out of my darkest moments, every time.

I grew up in South Portland and have lived in Maine my entire life. In 2004, when I was 38, I was living in Windham with a brand-new house and a job I loved counseling adolescents with substance use disorder. Then, in an instant, everything changed. I was suddenly very sick and went to tons of doctors before I was diagnosed with a rare blood disease, thrombotic thrombocytopenic purpura (also called TTP). The plasmapheresis treatment for my TTP caused an allergic reaction, and I had three back-to-back strokes.

Right after my strokes, they thought I would never walk or talk again, but here I am. When I first started going to outpatient rehab, I was so scared, but they worked with me. I attended Bayside Goodwill NeuroRehab intermittently from 2006 to 2024, and in 2016, I received the award for most improved client, which was a huge honor. The mayor was there and lots of people from the community, and it was an incredible experience.

It has been very difficult, but I work hard to advocate for myself. You have to work hard to get others in your corner to help, and sometimes you just have to be the squeaky wheel.

Over the last 20 years, I have worked hard to recover. I live in Gorham now with my significant other of 13 years, Robert. My strokes have made me a nicer and more empathetic person, and I am now going back to school so that I can return to counseling and help others who have experienced brain injuries. Even though I couldn’t communicate for a long time, my brain was still active. People thought I was dumb, but I was still in there, and I want to work with other survivors so they have someone who gets it supporting them. I want to help people, and this is the new purpose I am working towards.

January 13, 2013, will forever be remembered as my new beginning at life and the beginning of my personal growth journey to become the person I was meant to be. I had been feeling ill for weeks and in and out of the E.R. for several symptoms like headaches and vertigo. Each time I was sent home only treated for the single symptom and not as a whole because the doctors thought I was too young to be having a stroke.

I was not feeling well, so I found a way to drop my son off at my dad’s early, then returned home. When I got home, I still wasn’t feeling well, so I had an argument with my then boyfriend to stay home because he wanted to go to the store. I absent-mindedly went to the bathroom to take a shower when vertigo hit me so bad, I had to lie on the bathroom floor and close my eyes to keep from getting sick. I hollered to my boyfriend for help. As he was calling 911, I only had enough time to grab a towel so I wasn’t naked, signed “I love you” to him, and then everything went black.

I don’t remember much about my journey at this point. I had some pretty weird dreams, which was my brain’s way of trying to make sense of what I guess was really happening, as well as my twisted thoughts. I was in and out of consciousness the whole time. I was life flighted and I was dreaming being stuck on a plane.

My brother and family worked with me on learning everything again from trying to move my arms and legs to sign language, to write again, even eventually talk. When I was fully aware again, my brain reverted to me being younger. I remembered being physically abused by my step dad, and I refused to believe what had actually happened even though my dad kept telling me the truth. As the days went by and my breathing tubes and trach were removed, I was finally able to see my son without scaring him more than was necessary. I was so excited to see him that I had reached for him which scared him anyway. He was 4 at the time, but I insisted he was a large one year old.

I found out I had a genetic disorder called factor V, which is a blood disorder that causes my blood to run thick. Most people who have factor V live out their lives with little to no treatment other than a blood thinner. There is no reason why I was such a severe case. I think it may have had something to do with my unhealthy go-go lifestyle, having a kid, using hormonal birth control, flying in a plane when I was untreated when younger, and such. I am pretty much a what not to do when you have factor V walking billboard, but to be honest I didn’t know it at the time.

Over the next few years, I would endure trial after trial of therapies and hard work. The doctors kept telling my family that I was not going to make it even after I kept proving them wrong. They were amazed that I kept fighting but were not giving the family any hope or easement. I have a very stubborn streak, and when people tell me no I tend to do it anyway. This mentality has gotten me through most of my life and moments meant to break me, moments that probably would heavily discourage the average person and cause them to give up. I say average because there is no such thing as normal. Everyone has their own idea on what it might mean, but nobody fits into the category. 

The outpatient rehab I am currently at I have been going to for eleven years now. I was in a wheelchair for a chunk of my recovery at the beginning. With a lot of encouragement and determination, I can proudly say that I now can walk most places, like inside, without my cane and on grass or uneven ground with my cane. I can talk at a rate that is understandable but sometimes my brain to speech patterns mess up or I talk too fast to understand. I have hemiparesis (or weakness) of my left side, and as a result I do not have full function of my left arm, but I can move my shoulder and I can grip a little but can’t release. I also live on my own independently without nursing assistance.

I had to go through a lot to have a true understanding of society in general and how skewed peoples’ perspectives are. Nobody, and I mean NOBODY, is better than ANYONE. I’ve learned to be more patient and accepting as I myself have been on the other side needing the compassion. People who did not understand treated me like I was a bother, or they would look down on me with pity, but I am not someone to be pitied, even now. I have struggled along the way, but with my stubbornness and determination I refused to be told I couldn’t, and me and my family have been told to expect the worst-case scenario the whole way.

Eleven years ago today, my life would never be the same again. Something major was happening to me that was out of my control and God could only take me so far. It was up to me to finish the fight. With sheer determination to get back to my son and resume my life, I never gave up. I’ve worked hard to get to where I am now and to look back at all the obstacles I have overcome, I can say that I am at peace with myself now. I have a long way to go but I am very grateful and thankful for all I have achieved in this short time. Some days it feels like a lifetime ago. I have a new way of life for the better with new friends who make it even better, and I can’t imagine it gets any better. Not too many people can go through everything I have and still be positive, but no one is quite like me!! To all my friends and family who have been there for me and continue to, you are awesome too, thank you, and I love you all. 

Content warning: Detailed description of injury

I Have

By Emily Bane

Have you ever felt the tug
Of loose snow beneath your tires?
Or had your car drift
Off the road, towards a pole?

I have.

Do you know the sound of metal
Crunching against wood?
Have you felt yourself thrown forward,
Had your jaw split by the wheel?
Have you seen wood splintering, and heard
Glass shattering into ten thousand times ten thousand parts?

Even now that sound still rings in my ears.

Have you felt those glass shards bite
Into your face?
Have you felt a certain splitting,
Like the cracking of an egg,
As your skull split open from above one ear
To under the opposite eye?

I have.

Has your face ever been so shattered
That your left eye was hanging free?

Mine has.

Have you ever felt the panic
Of sinking into darkness unexplored?
Have you danced with death?

I hope you haven’t.

Have you visited the realm of stillness
Where there is no sound, no light?
Have you wandered in that empty void
For eight days?
Have you had to live through that?
Have you ever felt such pain?

I lived it.

Have you stood before a mirror,
Wincing at the sight
Of a giant scar
Displayed on your throat?
Have you watched it travel up
And down? With every swallow,
Every gulp?

Have you run your hand across your face,
And felt the many marks
From where the glass bit in?
Have you felt the sharp point of glass
Finally working out, from beneath your skin?

Can you imagine how that must feel?

Have you ever had a child come,
So innocent and sweet,
Have they asked about the “boo-boo”
On your arm?
I struggled with how to answer,
Can you picture what you would say?

Have you had a teen just stand
And stare?
Have you heard the dreadful silence
As they wonder why the scar is there?

How would you respond?

Have you seen the sympathetic glances
From those unsure of what to say?
Can you picture that occurring twenty-eight times,
In a single day?

It has happened.
I have seen,
I have heard,
I have felt,
All of that.
I lived…
When I should have died.
I bear scars…
But I am still alive.