During the six weeks that my daughter Bella, 13, was hospitalized at Children’s Hospital Colorado for a neuromyelitis optica (NMO) attack in 2017, my husband and I kept vigil at her bedside. Too worried to sleep, we prayed for a miracle every night. As soon as we received Bella’s…
quality of life
Neuromyelitis optica (NMO) isn’t all bad. Hear me out. Sure, the needles, pain, and endless worry about permanent paralysis and vision loss are no fun, but there’s a silver lining if you know where to find it. At the start of every year, I think about all of the people…
I am one of the few lucky ones who really enjoy what they do for a living, but that’s probably because I’ve taken control of my destiny. I am constantly reinventing myself and building the career I want. This became even more important after I was diagnosed with neuromyelitis…
As the COVID-19 pandemic rages on, many families are concerned about the holidays. I’m trying to approach the season with patience, but as someone with neuromyelitis optica (NMO), I’m also tired, frustrated, and scared. Living with this disease and taking immunosuppressants means I’m at a higher risk of becoming…
¿Cómo estás? 你好嗎 Ça va? How are you? With the holiday season upon us, people are getting together, hopefully safely, considering the persistent COVID-19 pandemic. While I always enjoy seeing friends and loved ones, I find it uncomfortable when I’m asked difficult questions like, “How are you?” While the phrase…
When we are diagnosed with neuromyelitis optica (NMO), it can feel like we’re being pushed into the deep end of the pool and left to sink or swim on our own. Navigating a whole new life with a rare disease can be confusing and overwhelming. Part of that feeling…
Gravity is my friend. Even if I’m tired, gravity will pull my snowboard and me down the mountain. I like to ride alone because I need to listen to music, which I only play in one ear so I can hear my surroundings. During the offseason, I build music…
Sometimes in life, the easiest decisions make the greatest impact. It probably wasn’t reasonable for a new couple to get a dog together, but that’s exactly how Marmaduke came into our lives. A wild idea led to an internet search, and as luck would have it, we were able to…
In the first five years after my neuromyelitis optica (NMO) diagnosis, my health took a sharp nosedive, which shook up everything I thought I knew about my future. Suddenly, my body was betraying me in a major way. My limbs stopped working properly, my vision was all over the…
In my family, I am the third child of four, the daughter of proud, immigrant parents. I grew up in small towns until I finally relocated to Toronto in my early 20s. Growing up, I only knew one kid with an illness, and she entered my life as quickly as…
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