HOPE, VULNERABILITY, & PIVOTAL MOMENTS
COMMUNITY STORIES | 06.25.19
BY TAMMY CUDABACK
This month is the 10 year anniversary of my TBI.
After my accident and surgery to remove a subdural hematoma (a brain bleed) and a separate collection of trapped cerebrospinal fluid that was putting additional pressure on other areas of my brain, I assumed that my life would return to how it was before. I didn't realize that, unlike the heart surgery I had in my 20’s to repair a congenital heart defect, this recovery would take on a different appearance.
I didn't have new found energy. I didn’t come out of it feeling better than I ever had. Instead I struggled with pain, inflammation, and daily headaches that never went away. When I tried to follow-up with a neurologist I was told to never be stupid enough to let someone cut my head open again. I was given a prescription to manage headaches and left very confused.
For years I dealt with feelings of confusion about my migraines, pain, difficulty with concentration, cognitive processing issues, frequent bouts with being emotional, and chronic fatigue that plagued my body. I felt something was wrong, but having the doctor's words echoing in my mind that my surgery, although I had been admitted under an emergency situation with bleeding on my brain, was somehow a mistake, I just tried to cope.
About 3 years ago, my symptoms became increasingly debilitating. During one of my worst events I had a sharp stabbing pain in my head, became very dizzy, disoriented, and nearly blacked out in front of the roomful of 4th graders I was teaching. Leaning my head against the cool white board while they copied the notes I had written was my only saving grace.
At this time we found a new neurologist and began getting diagnosis and help we should've received from the beginning. At first it was frustrating to hear about these conditions and that there wasn’t much that could be done, but also validating to hear that I was not as crazy as I had been led to believe.
A major turning point for me happened one day in Physical Therapy for vestibular rehabilitation. I was asked to say the first word that came to my mind. It was HOPE. As I held the piece of surgical tape on my hand then, and at each of the following sessions as I learned to keep that word in focus with my eyes, it also became more in focus on my soul and over time it became liberating.
I began finding my voice. Confusion over the incongruencies of what I had been told when I had my surgery and how I had felt all these years began to fade. My TBI is real, removing the hematoma and fluid wasn't the cure, but it wasn't stupid either. It was life saving, life changing and this was my new normal.
I searched for ways to replace the things in my life which I loved to do but hadn't been able to do anymore, like jogging and hiking, with things that helped restore my peace and sense of self. A return to yoga was suggested. My research led me to the Love Your Brain foundation. As I attended the 6 week class and practiced yoga I felt a return to a happiness and joy of challenging my body which I had previously only found when jogging or hiking.
My appreciation deepened for the things I could do. Just like modifying a yoga pose, I could modify things in my life and it would be just as good or better! Learning to adjust and modify has been difficult. Learning to accept limitations has always been a struggle for me. I had to learn to be ok if it took me several extra days or weeks to crochet something. Reading was replaced with more listening to books. Eating dinner at restaurants at less busy times, and watching movies at home to avoid noise and bad lighting has meant a deeper personal connection with family and friends.
Recently I attended the Spring Retreat at Wavus. There I found a greater sense of community, the value of my story and experiences, and the power vulnerability has to help myself and others. I actually felt a sense of culture shock when I had to deal with my first difficult experience outside of the retreat and felt completely misunderstood. Love Your Brain isn't just an organization, it is a family!
Through my experiences and this program I no longer feel that my invisible injury should stay invisible. That my voice, given at the right time and places, can be a force of comfort and strength for myself and others.
As I've addressed this new normal and made one of my intentions to be an advocating voice for myself and other survivors, I have had opportunities that I never thought I would. I've been able to help family members, and people I've just met through my ability to listen, sharing ideas and brain healthy recipes, and a compassion that shows I really know what you're going through.
I'm still learning. I still struggle with replacing activities in a meaningful way and generally not pushing my body too hard. Giving up teaching and sitting out of activities I really want to participate in has been the hardest. But as I approach this anniversary it's with a different mindset. I know and believe the mantra "it's ok even when I'm not ok". There is always hope and I'm stronger than I've ever been.
Doing Warrior pose on the dock at Wavus, at sunrise, with a couple friends solidified for me each day is a bright new day and I have the tools, friends, family and strength for this journey.
I'm excited to see where the next 10 years takes me.
This life is not a dress rehearsal. Live and savor every moment!