When it started
41 years ago
What it’s like
My Story
My story began 41 years ago. Saying that out loud makes me feel old, but by sharing the "why" and "how" of my journey, I hope to give others hope.
It started when I was 15 years old, right after receiving high school shots. My face puffed up, and I spent three months in the hospital. Shortly after, IBS and balance issues began. I vividly remember thinking I was walking straight, all while pushing my friends off the sidewalk. They quickly learned to give me plenty of space. Little strange occurrences kept popping up—things I didn't understand until much later. I dealt with eye issues, intense pain, and racing thoughts.
Fast forward to 2009, after receiving a flu shot. Once again, it took time to piece things together with the help of alternative medical professionals—after all, don't we try anything and everything to feel better? A long list of symptoms followed that injection, including multiple autoimmune issues. I felt a sensation like a cell phone vibrating inside my chest. I experienced skin rashes, a swollen tongue, and blood vessels that felt as though they were popping. I was frequently dizzy and would drop out of nowhere. My hands developed tremors, and I would lose my balance and fall into things. Depression took hold in full force. In 2013, I was diagnosed with a movement disorder—a diagnosis I was never directly told about, but discovered years later while looking through old medical documents.
By 2019, I started experiencing major cognitive issues, slurring my words and falling. At the time, I was living in an emotionally and verbally abusive relationship. I was also diagnosed with diabetes, which didn't make sense to me; I didn't fit the profile, it didn't run in my family, and I am small. I made drastic changes to my diet, trying water and bowel cleanses and switching entirely to organic, whole foods. Nothing boxed, no bread, no dairy, and no alcohol. Yet, my health didn't improve much.
In 2022, things got significantly worse. It began with internal tremors that quickly turned into external tremors. My head started bobbing, and I had violent jerks—a buildup of pressure in my arm that felt like it would explode right before the jerk. As much as it hurt, it was also a relief I welcomed. Then the seizures started: up to 25 a day, lasting a couple of minutes each, with only short breaks in between. My brain would mix up words or fail to produce them entirely. I stuttered, and speaking became exhausting; it required immense concentration. I lost bowel, bladder, emotional, and body temperature control.
I needed a walker to get around. My brain would trick me into feeling like I was climbing stairs while walking on a flat surface, and my declining cognitive abilities made me feel stupid. My memory was shot; I would look at a spoon, know what it was, but call it a fork. To make matters worse, I was mocked and laughed at by my partner, receiving no empathy or support.
I began grounding myself, doing art, taking gentle walks, and trying frequency medicine. These small steps began to help, especially with my brain function.
Then the abuse escalated, culminating in my partner trying to kill me. I left, and physically, I started feeling better. But trauma bonds are real, and I went back for three months. My symptoms came out of remission, and my health plunged again.
Finally, I made the decision to move across the country and found a safe landing with my family. They nurtured me, loved me, and expected nothing in return. They housed and fed me, removing my daily worries (though as a constant worrier, I still managed to find things to worry about!). During this time, I practiced neuro-art, spent time by the water, and started writing. I took courses, became a trauma-informed coach, worked with holistic medical professionals, and even consulted a shaman.
Eventually, I met someone new—a partner who nurtured me and made me feel safe, allowing my nervous system to finally relax. I started moving more, taking up endurance activities like cycling 45 kilometers, kayaking for nine hours, hiking, and weight-bearing exercises.
I began researching a phenomenon I noticed: why did short spurts of movement leave me exhausted, shaky, tingling with pins and needles, and dizzy, whereas I could move long distances with no recovery time needed? My research revealed that endurance exercise can actually help individuals with Functional Neurological Disorder (FND) rewire their brains. It is a fascinating topic, and while it may not work for everyone, studies show it helps many.
Are all my symptoms gone? No. While I had a wonderful two-year stint in remission, some of my symptoms returned after experiencing trauma at school. I still occasionally say things that make no sense to others, I experience some jerks at night before falling asleep and throughout the night, and I still have weakness in my right leg.
Even so, I am filled with hope. Life can be challenging, and our lives may not always turn out the way we envisioned, but we only get one. I choose to focus on hope, celebrate my wins, and remind others that you won't always be stuck where you are right now. Today, I am medication-free, at peace, and confident that even better things are ahead.
Thank you for reading
Kimmy
