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I sometimes feel like I’m laughing in the face of death. When I was diagnosed with neuromyelitis optica spectrum disorder (NMOSD), all my internet searches informed me that I’d have about five years to live. Now, more than 14 years later, I’m still going strong with no signs of…
I’ve always been a tech nerd, falling in love with the newest tool in the Internet of Things, such as my Fitbit and phone, which can display various body statistics and control my transcutaneous electrical nerve stimulation (TENS) unit. Technology has become even more important…
Describing myself has always been a challenge. I’m as complex as the next person, but I feel like I’ve been a chameleon my entire life, always adapting to my surroundings to survive. That drive to survive is how I’ve become edgy, direct, and an advocate for various causes. This edge…
Sometimes while I’m waiting for my prescription, I find myself meandering through the aisles of our local pharmacy. At one point I found myself facing the wall of vitamin supplements. Rows upon rows of nondescript bottles greeted me, each distinguished only by a large letter on its front. The array…
I’ve been thin. Very thin. And I’m currently overweight. Very overweight. It’s not lost on me that in this lifetime, I’ve experienced both ends of the weight spectrum. I can make excuses for that, but the bottom line is that my body has endured sharp weight fluctuations for many reasons…
It had to be something special for me to break my silence on X (formerly known as Twitter). I had to share my support for actress Christina Applegate after she appeared at this year’s Emmy Awards in mid-January. Applegate has multiple sclerosis (MS), which has many similarities…
I consider my ability to swallow multiple pills at the same time both a skill and a necessity. Some days, I’ll look into the drawer of my nightstand and be overwhelmed by the number of pills prescribed to me. This realization can drag me into a moment of sadness, a…
I’ve always been a superstitious person. It started by listening to tales about my oma (grandma), who was a believer in the dark arts. My greatest memory of her is from one evening when she called everyone to say goodbye, knowing she would pass away the next day. And she…
Second in a series on visiting Disney World with a disability. Read part one. Big crowds make me nervous. Should someone bump into me, I can easily lose my balance. And the risk of infection weighs heavily on me, given my weakened immune system. A nearby sneeze triggers…
First in a series. Christmas, a bustling time for all, becomes particularly challenging for patients like me who have neuromyelitis optica spectrum disorder (NMOSD), as it can take us out of our routine and add unwanted stress. One holiday memory stands out and is yet to be beat:…
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