As an Asian American, I shared the joy and pride felt by much of the global Asian community when “Parasite,” a South Korean genre-bending thriller directed by Bong Joon Ho, won best international feature film, best picture, best…
“Would you have had children if you knew they would have Charcot-Marie-Tooth?” I have heard this question before from friends and acquaintances when I told them about Charcot-Marie-Tooth disease (CMT). When I am asked, my answer is always the same and without hesitation: yes. I would have had my son…
Social media can be an overwhelming vortex of opinions, grievances, and feelings. That is especially true of my Twitter feed. At its best, my Twitter feed is where I can pass the time laughing at memes from friends and musings from celebrities. At its worst, it is home…
On some days, I find carrying out everyday tasks harder than on others. I don’t always want to rely on my son or someone else to help me do these things. I started thinking about the tasks that are most problematic and what I can do to make them easier.
While scrolling through my Twitter feed recently, I came across a tweet from Charis Hill, an advocate for disability rights. The tweet was a list of things that every disabled person has supposedly heard at least a few…
Do you struggle with a lack of motivation this time of year? I do, and it seems to be affecting my Charcot-Marie-Tooth (CMT) symptoms. I find that my CMT symptoms are worse in colder weather than in warmer weather. In the winter, for example, I tend to feel more fatigued…
A few years ago at a previous job, a co-worker confessed to me that she used to think I was a bit gross because she thought I had frequent nosebleeds and didn’t immediately throw my used tissues away. She had seen tissues stained a blood-red color strewn on…
When I was in college, YOLO — the acronym for “you only live once” — became popular. I think it was supposed to be inspirational, encouraging us to take advantage of our time and do something worthwhile. However noble the intention was, that’s not what it became. I…
“Movement is medicine.” I have heard this saying a few times, and I wondered what it was about. Years ago, doctors typically told Charcot-Marie-Tooth (CMT) patients that exercise is not the best option. The Hereditary Neuropathy Foundation is working to change that. The foundation suggests that people with CMT…
“Why does your dad walk like that?” a friend once asked me. At the time, I hadn’t even noticed. He had always walked that way. I knew we had Charcot-Marie-Tooth disease (CMT), but it never occurred to me that he walked funny — or that I did, too. Daddy has…
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