Hawk’s-Eye View — Hawken Miller

In my last column, I wrote about the increasing difficulties I’m having safely navigating my home using the “furniture surfing” technique. I wondered whether it was time that I break out the walker and give it another try. I also mentioned my plans to contact my doctor to discuss…

On Thursday, Nov. 17, I went to bed with what I thought was a bad stomachache. It felt like someone was sticking a knife in my left flank. Then I realized: This was undoubtedly a kidney stone. I’d had three others, and the pain was exactly the same. But this…

Adult life is overwhelming. There’s so much to do. You have to hold down a job, pay rent or mortgage, prepare for retirement, spend quality time with those you love, learn new skills, find time for rest, and pursue a hobby or passion. Then add Duchenne muscular dystrophy on…

“We rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.” I nervously recited this Bible…

The Duchenne muscular dystrophy community is reaping the benefits of innovations in rare disease diagnosis, research, and care. That’s part of what I learned last week while training to cover rare diseases with the National Press Foundation (NPF). I was selected for the NPF’s Rare Disease…

I never thought that being diagnosed with a rare muscle condition called Duchenne muscular dystrophy would one day lead me to Budapest, Hungary, but life always surprises me. A few weeks ago, I jumped on a flight to the historic European city to speak at a Duchenne conference.

I face many obstacles because of my Duchenne muscular dystrophy. Some of them are large, like preparing for the day when I’m unable to bear my own weight. Some of them are small, like getting help scrubbing myself in the shower. Although I would rather avoid these obstacles altogether, they’ve…

Two weeks ago, I tested positive for COVID-19, which can be especially dangerous for people with Duchenne muscular dystrophy. My lungs aren’t as strong as other people’s lungs, and taking a corticosteroid for nearly 20 years has weakened my immune system. But after consulting with my excellent…

Every second of our existence is like a puzzle piece falling into place on a seemingly endless dining room table. Some pieces are good and happy. Others are sad and dejected. Even the smallest, least important parts of the final image matter. When living with Duchenne muscular dystrophy, there…

Sometimes we need wake-up calls in life. They are near misses that tell us we need to make a change, approach a problem differently, or alter how we interact with others. These can take the shape of a car crash that tells us we need to pay attention and get…

This week’s column will be slightly different than normal. I reached out to fellow Muscular Dystrophy News Today columnist Betty Vertin, who has three boys with Duchenne muscular dystrophy (DMD), ages 16, 13, and 11, to seek her collaboration. I asked Betty five questions about life with Duchenne,…