Hello! My name is Evy. I'm 27 years old and living in the Kansas City area. I am the first adult in Kansas City to be diagnosed with AFM. Before AFM, I was highly active and healthy. I was a single mom of two and dog mom of three. I was always on the go and stayed busy.
November 2019 was a normal day until I noticed a weird sensation coming from my feet and legs. It made me a little worried so I had a friend stay with me. A few hours went by, and suddenly I'm not able to walk or move my arm and had a difficult time breathing. My friend drove me to the emergency room. Within six hours, I was unconscious. I remember waking up to doctors and nurses calling my name, I remember hearing them say they were trying to get a hold of my parents. I remember seeing flashlights lit into my eyes. I realized I couldn't speak. I had no idea why. Then my eyes shut again. I woke up in the ICU one and a half weeks later. Not realizing that I was paralyzed from the neck down and not realizing that I had a tracheostomy.
At first, doctors thought I was diagnosed with meningitis. After a few weeks went, they said Guillain Barre Syndrome (GBS) instead. They said I’ll be back to my old self with physical therapy. They said my recovery can take 6-12 months.
I was transported to Madonna Rehabilitation Hospital in Lincoln Nebraska for PT and vent weaning. I spent three months in their facility and going back and forth to the ICU at Bryan West Hospital. After more tests and no improvement on my condition, the neurologist diagnosed me with a rare condition called AFM. This was a lot scarier to me than GBS after my asked the neurologist why didn’t they didn’t detect that early on and if they are sure this time.
I was transferred back to Specialty Select in Kansas City to focus on vent weaning in February 2020. The Covid Pandemic didn’t allow my family to visit me anymore. My parents and kids visited me using video calls and looking through a window. I was discharged June 2020 but went to 3 other hospitals until September where I was finally “home”.
It was very difficult for me mentally from being a completely independent parent to being someone who is completely dependent of others. While in the hospital, I always felt so much guilt. My family and friends had to take on responsibilities that I had chosen in life. I could not be there for my kids like I wanted to be. Learning to accept the circumstances for what they are made me stronger. I hope my resilience will inspire others, especially my children.
Coming home was a very big change for them, my parents and also me. I had to give up my house and move back in with my parents after living independently for 10 years. Something that I've had to learn is that it's OK to ask for help.
Since I have been home, I am able to see my kids every weekend and holidays. Even though I am not physically able to take care of them anymore, I am still thankful for every moment I get to see them.
At first, my kids do not want to be near me… afraid they may unhook my ventilator or hurt me. Now they are so excited to help when they can. Whether it is feeding me, scratching my nose, or even getting to push the button on my nebulizer. It makes me proud to see their heart and their growth through the scary experience.
I am still trying every day to get better but at the same time, learning how to adapt with what I have gained. It is frustrating sometimes to ask for help from my caregivers but gratefully reminded for the second life I was given. My goal obviously is gain as much progress as I can. Whether it is getting off the ventilator or getting out of my electric wheelchair. My ultimate goal is to raise awareness about this very rare condition and to help others as they go through their own journey. As I am taught to be vulnerable, I share my experiences and feelings as much as I can.
