In chronic illness, we often grieve for the life we once had and the things we love to do that we suddenly cannot do anymore. We move through intense feelings of anger, frustration, denial, and sadness that cycle back when new symptoms or situations arise. But here and there, we may feel a sense of acceptance creeping in. Once acceptance comes into the picture, the possibilities on this new path start to unveil themselves.
We may not be able to have what’s considered a “normal” life, but we can work with what we’ve got, and continue to find joy, happiness, and satisfaction. Savannah’s story offers a reminder of how powerful mindset can be in living our best life.
Devic’s disease is a neurological disease of the brain and spinal cord dominated by inflammation of the optic nerve (optic neuritis) and inflammation of the spinal cord (myelitis). It’s often mistaken for multiple sclerosis (MS) because both diseases have similar symptoms.
I suffer from a relapsing form of the disease, which means a patient can go through multiple attacks, which accumulate disability over time. I was diagnosed in 2019 and I was put on a preventative chemotherapy treatment called Soliris after they found three brain lesions and my optic nerve was inflamed.
In Devic’s disease, the attack results in inflammation and damage to the nerve fibers, disrupting nerve cell communication. Patients who endure this disease suffer from blindness, paralysis, and life-threatening complications. In the beginning of my diagnosis, it shattered every kind of normalcy I had. I went half-blind and still am to this day. Being the independent woman that I am, battling this crippling disease was extremely humbling, and I had to finally accept help from others.
“My disease fully intended for me to lose all hope”
I’m a public special education teacher and in February during my second year of teaching, three months after my diagnosis, I had to quit my job. I felt like I had failed so many people in my life: my husband, my students, and my co-workers.
I could no longer do what had been so easy for me, like washing the dishes, cooking, and waking up in the morning to dress myself. I was shattered–the superwoman part of me was no longer alive. My disease fully intended for me to lose all hope in my despair, and to never jog with my full strength again, or get out of a hot bath on my own, or get out of bed without burning feet, or see a day where I wasn’t throwing up in pain.
But I have seen all of those things through today, and though I live with chronic pain, I know I’m a stronger woman for it.
Sometimes tough situations build strong people, strong women.
Fast forward to now, two years later after living with my diagnosis. I am working again with special needs students as a public school teacher and I survived teaching through the COVID-19 pandemic!
“As long as we can still feel the love…
we will survive that pain, over and over again”
Every morning that I wake up and enter my classroom, I feel a sense of accomplishment. I sip my coffee, looking around my room with the feeling that I made it again. I chose to do what I love, despite my daily health challenges and biweekly treatment. I chose to go through my life not allowing pain to dictate how I live. I’d rather live a painful life than not live one at all.
Living with a rare disease like mine is lonely, yes. I fight for my health every day. People may think I’m lazy or dramatic. People will give their homeopathic advice, but an arnica mountain daisy isn’t going to cure my crippling disease. People have made me feel the most lonely I’ve ever felt in my life. But here I am—living despite the battle of not only my disease, but of people that don’t understand what I’m going through.
I’ve learned that it doesn’t matter how bad the pain we are feeling is, either physical or mental. As long as we can still feel the love of those that love us, we will survive that pain, over and over again.
And I’ll keep going and doing the things I love with passion, grit, and heart.
I am my own superwoman.
The views and opinions expressed are those of the author and do not necessarily reflect the views and opinions of the Global Autoimmune Institute. The experiences and health outcomes described in this article are unique to the author and do not serve as medical advice.