Hi y’all, I haven’t posted personally in a while so here’s an update and a 2021 review rolled into one!
In 2021, my migraines & dysautonomia post-brain injury continued to be major players in my life. So I really upped my game of searching for answers and found healing in many forms! Some answers I found only raised more questions… but I’ve made huge strides.
And I gave in to that little voice that had been urging me to “go.”
I sought freedom from the weight of great loss and pursued renewed vivacity for life. I made changes and I dragged myself out of bed even when my head and heart rate protested. I fought the urge to retreat and give in. And I reaaaally pushed my limits.
I walked, I ran, I sailed, I flew. I quite literally tried to climb mountains and ride waves. I found comfort and solace with old friends and exciting adventures with new friends. I discovered parts of myself and strength I wouldn’t have known if I’d stayed home.
Maybe that little voice was telling me to run, to try and escape… but I learned my lesson. The work I needed to do to heal followed wherever I went. But it didn’t stop me from finding joy beyond what a younger version of me could have even imagined.
At home, I continued to work on my vestibular and overstimulation issues with new providers and continued therapy for grief. I continued to sing and write. I found purpose in new challenges and an increased awareness of every day beauty around me… like the colors of the sky as the sun rises and sets against a city skyline, the wind on my cheeks at the beach and the squeaking of sand beneath my feet, the reflections of sun and sky on the water, the changing colors of leaves on the trees… the joy of conversations with others who have walked different paths than me.
I don’t know that there will ever be a day where I’ve officially “made a comeback” as I have hoped for so long… but my perspectives have shifted. I continue to push forward unrelenting toward my goals of having a life full of light and love (with less debilitating pain) in which I can share my gifts to help others.
My deepest thanks to all of you who have continued to support me as I journey through the unknowns. As I get older I see that just as the seasons change, the times of darkness balance with times of light.
I retreated from social media in 2021 but you will see more of me in 2022! I’m healing, I’m taking on new challenges, and I’m finding the energy to share. Stay tuned!!!!
As 2020 comes to a close, I have some good news I want to share!
As many of you know, I have still been struggling with my brain injury recovery. I just can’t seem to find the right recipe for building tolerance to activity and recovery time, often resulting in pain, migraines, overstimulation, and overwhelm that slows my cognition. As my therapy successes dwindle and we have begun focusing on symptom management, I have been convinced that there are root causes I have not been able to accurately address or rehabilitate.
Just before Christmas, I took a leap and scheduled a consultation exam with a brain injury specialist, Dr. Nathan Keiser in Chelsea, Mi. He really knows his stuff - I’ve been following him for a while on Instagram and I’m so lucky someone of his prowess is located in Michigan!
Through precision diagnostic testing that I found fascinating, we discovered information on why many of these things are happening... to my understanding, this is the best I can describe the most notable parts:
-The basal ganglia part of my brain is not interpreting sensory input correctly - many of my cells are working overtime to make simple connections that normally functioning brains have to spend very little energy on.
- My eyes are blinking SO often to aid my brain in filtering sensory information - sometimes twice per second whereas the normal person blinks once per 15 seconds!
- My autonomic nervous system is not regulating correctly (things you don’t have to think about like your heart beating) meaning I have POTS and Dysautonomia.
The best news is - Dr. Keiser thinks he can treat me!! So my leap of faith continues beginning January 4th with a two week intensive. I will be treated in multiple sessions a day (as my brain and pain allows) and I will be staying at a lovely Victorian Inn within walking distance of his office so I can rest in between.
After 2.5 years of this journey, worrying that I would have to live my life in extremely limited ways without a foreseeable end in sight and often being told to accept my limitations, this news is beyond exciting!! I move into 2021 with a renewed sense of hope. This may not be the final answer to my recovery, but I feel deeply that it is a big step in the right direction.
Sending heartfelt thanks to all of you for your prayers and support so far and wishing you all a wonderful new year with hope and love.
2021... here we come
PS - Check out Dr. Keiser on Instagram (@dockeiser)- he has some really informative videos!!
In the year after Mom’s passing, my brain has slowly continued to make improvements. I am happy to report that as the 2 year mark approaches, my life and ability to function normally has drastically improved! I have continued improving with the help of my speech, occupational, and physical therapists and the oversight of my specialized doctors. I have continued learning how to manage the pain and build tolerance by pacing myself with screen time, cognitive and physical exercise, playing piano, and singing. My light and noise sensitivities aren’t as severe - I haven’t even worn a floppy hat in a few months, and I don’t have to use my ear plugs nearly as often in public!
My ability to sustain cognitive vigilance (sequential high level processing) without ample recovery time isn’t at the normal level yet… but I have seen major improvement and I am working on it.
Before Mom passed, I had written less than 5 very simple songs. Since then, I have learned so much and continue growing; I’ve written more than 20 songs. The topics vary in how I have chosen to deal with loss, grief, love, and navigating change. I am finding healing through music, and I feel driven to share in the hope that it could inspire others to learn and grow from their own life experiences. Through everything, I strive to keep a positive attitude so that I may share my talents and light to uplift and empower others.
I feel incredibly supported and loved by a community of people who may not all be blood-related, but have become family over the years. I strive every day to make each one of you, and the memory of my parents, proud.
My deepest thanks goes out to all of you.
When I got home from my California trip, I found that my usually very healthy Mom had become very sick. On April 30th, 2019, I brought my Mom to the hospital. That day was the first day we heard the word “cancer.”
14 days later, on May 13, 2019 - my 27th birthday - she passed away from an aggressive, rapidly developing cancer that had metastasized in her liver. My world got turned upside down again, the truest light of my life, my rock, my comfort - gone. But what she left me with will never fade.
The day before she passed was Mother’s Day. A friend brought a keyboard into the hospital so that I could play and sing for her. When my fingers touched the keys... it felt like I could breathe again. It felt like I had been holding my breath for the past two weeks in the hospital with all the tension of uncertainty, of waiting for diagnosis, of taking notes and doing the best I could to keep my brain intact enough to keep up...
But when my fingers swept across the keys and I started singing, I felt home again. It was like the light inside me spread to my whole body and into the room. It gave me a deep, visceral feeling that this was what I was meant to do.
As she rested, loved ones and I sang the songs that she and I had been singing together all my life. I was able to give back to her just some of what she gave to me. It was then that I knew music was so deeply a part of me that it would always be with me, through my brain injury, through trauma, through grief, and beyond.
All the things that brought me joy seemed to have been taken away from me. But I refused to see it in that negative way, because I was afraid I’d never come back if I let myself focus on the losses. I knew I had to find the light in the dark. After living an extremely busy and noisy life, I had to learn to live with myself in the quiet. My Dad passed away from a rare disease called MSA (Multiple System Atrophy) 3 years before my injury, and that was part of the reason I had kept myself a little *too* busy ever since… now that I had so much time alone with my thoughts, I had to learn to deal with that, too.
I worked on learning how to meditate. I learned more about myself and my spirituality. I journaled about the things I knew I wanted to see myself do in my lifetime. I had time to dream about where I would go next since my jobs had been left behind. It felt like my world was a blank canvas, which was both terribly scary and exciting. As time went on I realized it wouldn’t be about getting “back to normal” because I would never be the same - it was more about moving forward and hoping I could make a life for myself where I could do the things I love and be happy. I learned SO much more about myself, how I relate to the people around me, and about the world in this time that I may not have slowed down to discover otherwise. And I got to spend so much of this time with my Mom, which now I appreciate more than ever. I chose to see this as an experience of growth that would shape me into a stronger person rather than loss. I thought deep down that I would come out the other side healthy and strong… of course the only thing that all of this dreaming was dependent on, was my recovery. It has been much slower with so many more strides forward paired with even bigger setbacks than I ever could have anticipated.
For many months of the first year post-injury, I felt useless and lost, wondering if I would ever be able to be a musician again... I wanted to write music to make something meaningful out of the cards I had been dealt, but all that would come out would be fragments of thoughts that my brain couldn’t piece together. I even discussed with my rehabilitation therapists how I felt like my creativity had been stripped from me.
In time, I found that slowly music began to return to me. As I was building tolerance to spending more time at the piano with coping techniques like using earplugs and a keyboard instead of real piano, I started putting songs together. It was a sign to me and my therapists that I was on the right path! In March 2019, I traveled to NYC for a few days with my Mom to see how my brain would handle the stimulation of the city. It did not do well with the noise of the city and the travel of the subway, a sad realization that my brain was not ready for the next move - or at least certainly not for a career in NYC just yet. In April 2019, I traveled to California to visit friends and my brain handled the pace and open air better than the stimulation of NYC. That gave me hope.
I finally got in to see a specialist two months after my concussion who sat me down and told me I should not be working. It felt good to hear that someone would be able to help me, and that everything I was going through wasn’t just “in my head” - it was due to a traumatic brain injury and that 98% of people recover (of which I was extremely confident I would be one). But not working and turning my life upside down seemed absolutely crazy to me. I asked, how could this have happened from such a minor hit to the head? He taught me that the event of a concussion doesn’t necessarily matter how hard you hit your head, it’s all about the chemicals that rush to your brain during the event and how they should redistribute afterwards. The redistribution is where the problems develop. (In the week following the injury when they should have been redistributing, I continued pushing my brain when it was at it’s most vulnerable by working on computer screens, playing piano, singing, dancing, and performing in bright lights with loud sounds.)
It was after all of this that my doctor referred me to a neuro-optometrist, occupational, and speech therapy. The rehabilitation therapists were booked full for another 2 months, so I didn’t even start treatment until 4 months after my initial injury.
It is clear now that all of these factors play a part in why Post-Concussion Syndrome (aka Persistent Concussion Symptoms) have developed so significantly in my life.
In the months following, I went for weekly therapies and tried new glasses prescriptions to help my eyes readjust. I learned that my brain was not filtering things that it had been filtering subconsciously before, which is why light and sound were particularly strenuous and overwhelming. (This is why the traffic noise outside my house was driving me absolutely bonkers!) I was dealing with “overstimulation” ALL the time - from the moment I woke up to the moment I went to sleep - and actually the traffic noise still affected me in my sleep. I learned that my brain often wasn’t perceiving things correctly like it did before my injury, which then was affecting my vision; my eyes were straining and working overtime to process what my brain was perceiving.
When my symptoms became even more painful developing into migraines, I got referred to Physical Therapy. I also paid out of pocket for a treatment that insurance deemed “experimental” called Multi-Sensory Therapy recommended by my doctors and therapists to help with overstimulation.
I learned that in order to “get back to normal” as I liked to think of it, I had to get my symptoms down to baseline and start building tolerance from there. Do you know how hard it is to do “nothing”?! I essentially moved out of the city where I was living and home to the country where it was quiet with my wonderfully supportive Mom who would drive me to my therapy appointments, cook for me, and advocate for me. My brain felt best (but still not normal) in a quiet and dark environment.
It literally hurt to sing for more than a few minutes at a time. Singing - especially in higher registers made my head feel like it was swimming and drowning. I’m sure now that it had a lot to do with bone conduction. It hurt to play piano... think about all the signals your brain has to send to play piano - moving your fingers, coordinating them, remembering chords and rhythms, how notes work together, then if I wasn’t playing from memory add the visual stimulation of reading music on top of all the brain power just to play… My temples would pulse and my migraines would flare up.
EVERYTHING was overstimulating for my brain. It hurt to even LISTEN to music. It hurt to read. It hurt to watch movies. It hurt to concentrate. It hurt to be social and talk with friends. It hurt to walk or exercise. It hurt to be in public places because of all the visual and auditory stimulation. For the first year and a half post-injury, I wore dark glasses, floppy hats, and ear plugs whenever I left the house to help my brain manage the light and sound so that I could try to be seen as a normal functioning human being.
Unfortunately my brain did not make big strides in improvement like I expected of myself and I was deemed unable to return to work, effectively being terminated from my position at the university and stepping down from my church music director and theatre director positions in the fall of 2019.
As fate would have it, I was performing in a musical. It was my death scene… and I hit my left temple on the ground hard enough that the whole audience heard it. I didn’t lose consciousness, but when I got back to the dressing room I remember feeling like the room was spinning and having a weird lightheaded feeling. For my birthday, friends surprised me with champagne afterwards. The next day, I figured I just had a hangover and I didn’t think it was a huge deal, but the pressure in my head and vision was particularly weird… After attending a concert that night and noticing weird vision abnormalities driving home, I went to get my head checked out the following day. I was told I had sustained a concussion but should rest and go back to work in 2 days. Things got worse from there.
I was always the type to push through illness to continue working - always a busy body! I did everything I could to continue to work (at the university, and the church, playing piano and singing) and rehearse/perform (in the musical) for two months, but things kept getting worse and worse for my head.
Here are the issues I was dealing with:
Headaches, pressure, fogginess in my head all the time
Huge problems looking at laptops
Wavy vision when looking at stationary objects
Major light and noise sensitivity
Trouble recalling things I used to be able to recall quickly
Feeling mentally and physically fatigued all the time and sleeping A LOT
Singing and playing piano (separately and together) exacerbated my symptoms
The next part of my life is a bit blurry.
I grew up with music innately present in me. My Mom was a music director at a church for 40 years as well as a music teacher, accompanist, and musical theatre director. She shared her talents and kindness with SO many and left a lasting legacy behind. They say that when I was a baby, she would bring me to church in a basket and during certain parts of the mass I would become animated and make noise (probably because I had heard that music in utero - lol!) The way I shaped my life was largely inspired by my Mom and our shared passion for music. My parents always taught me that I should share my talents and light with others. In high school, I was a big band and choir geek - earning awards in band as a pianist, flutist, clarinetist, becoming drum major of the marching band, and student director of the top choir. I performed leading roles in the local musical theatre productions. I went on to earn a Bachelor of Arts degree in Music with emphases in Voice and Piano with a Theatre minor from Grand Valley State University. I was classically trained in voice, but my passion was musical theatre. My goal was always to work in “show biz” in NYC and I made a few connections with some very inspirational working professionals in NYC. I worked as a Music Director of a Catholic church for 6 years, often mentored by my Mom. I worked as a Theatre Director for a high school program for 4 years. I have performed in dozens of musicals, taught a number of private voice students, and have done a fair amount of accompanying students and choirs on piano. After college I worked as an administrative professional in the music, theatre, and dance department at my alma mater for 3 years, during which I also taught a college course for two semesters called “Singing for Non-Majors” and helped coach students to showcase in NYC.