Wear Your Voice
By: Amanda Morrissey
In September 2015, I started walking strangely. Just the odd stumble, like I was trying to walk upright on a boat. I went to a doctor who said, after a 5-minute consultation, I had an aftereffect of a virus. I walked out to my car and burst into tears. I knew something was wrong, but if a doctor wasn’t concerned by it, I probably shouldn’t be. So I pushed it away from my mind.
After a few weeks my symptoms had progressed to stumbling around like I was drunk. I also started having bone and joint pain, and a tremor on my right side. I kept feeling exhausted all the time so my husband convinced me to see another doctor. Immediately, she noticed that something was very wrong and thought I had Guillain-Barré syndrome, so I was referred to a neurologist.
By December, my symptoms were so bad I went back to the doctor and she told me to go to the emergency room. What I remember the most was the smell: a mix of bleach and disinfectant. Now when I smell that, I remember that exact moment and how terrified and alone I felt. I had blood tests, a lumbar puncture, and an MRI done, which sounds like your inside a transformer... while it’s transforming.
In January I was diagnosed with Paraneoplastic, which is an autoimmune disease where the body creates an antibody to fight cancer but the antibody gets confused and attacks healthy cells. There are about 30 different types. In my case, I have Paraneoplastic Cerebellar Degeneration. The cerebellum handles speech, walking, balance, coordination, fine movement and now, researchers think it also handles emotional response.
When you become chronically ill or disabled it turns your entire life upside down and I fell into a deep depression for three years. Being sick became my main identifier because my days were spent getting chemotherapy or Intravenous immunoglobulin, IVIG, in bed because I couldn’t move. With my diagnosis, it is common to get cancer, so I wasn’t surprised when I was diagnosed with breast cancer.
I isolated myself from my friends and family because I’m very self-conscious about my symptoms, mainly because I have difficulty with my speech. I slur my words and I’m very monotonous. Also fatigue and tremor makes socializing difficult. On average a healthy person has around 10 usable hours a day, on a good day I have about 3, then it’s like a light gets turned off.
For three years I struggled and had difficulty coping with my new normal, while I grieved the life I had. I’ve since learned a new way to cope, a healthier way, after therapy, medication, and time. I cope by focusing on something I’m passionate about and which gives me a new purpose. When my husband and I decided to move from the Netherlands to Scotland, because of a looming Brexit, I had to return my government sponsored custom wheelchair and smart drive. So I founded a t-shirts and apparel company called Panda Tees to raise money for an electric wheelchair. My favorite designs, since it’s breast cancer awareness month, is simply called "Boobs." It shows breasts in many forms, from lop sided breast to mastectomy scars. The other is a slogan that says “I’m feeling okay-ish” to normalize feeling okay-ish instead of always putting on a brave face.
After I reach my personal fundraiser goal, I want to continue on and donate a percentage to Eurordis, a non-profit for rare disease awareness and advocacy, which is a subject that is very close to my heart since I have one. I really want to make a difference in people’s lives, I want to support and empower the chronically ill, POC, LGBTQIA+, anyone with disabilities, women and any groups, who are made to feel like they do not belong, or feel like they aren’t important.
My advice is wear your voice and make a difference