Bending Focus: Lessons from a Rare Disease

Facing adversity is the acid test of our character. At no time in my life has this been more true than when confronted with the impact of a rare disease called facioscapulohumeral muscular dystrophy (FSHD or FSH). As muscle groups from the face to the feet atrophy, affecting my ability to walk, lift, and speak, … Continue reading Bending Focus: Lessons from a Rare Disease

How to Successfully Engage with People with Disabilities

A woman on a mobility scooter, her husband on a bike, and their caregiver in a transport vehicle roll into a parking lot of the Grand Canyon when a stranger approaches them and says, "I'm disabled, but you're more disabled than I am. Good for you for seeing the park." (No joke.) The woman on … Continue reading How to Successfully Engage with People with Disabilities

Let’s Talk About Caregiving (and Muscular Dystrophy)

The quality of mercy is not strain'd.It droppeth as the gentle rain from heavenUpon the place beneath. It is twice blest:It blesseth him that gives, and him that takes.Shakespeare Whether you are a caregiver or in need of one, navigating the art of caregiving can be tricky. This article offers insights and information to make … Continue reading Let’s Talk About Caregiving (and Muscular Dystrophy)

Queen for a Day (with Muscular Dystrophy)

Whether you're dealing with the hardships of a bodily condition or the intrigues of an expanding empire, Catherine the Great was right: "If you feel unhappy, raise your self above unhappiness, and so act that your happiness may be independent of all eventualities." She never said, however, that maintained optimism in difficult circumstances was easy. … Continue reading Queen for a Day (with Muscular Dystrophy)

Confessions of a Caregiver, Vol. 2, The One Constant

Hard goodbyes Claire and I returned to New Zealand at the beginning of 2014 to wrap things up. During our two-month stay, we finished selling our holdings, a process that entailed donating bag after bag of accumulated stuff, gifting books and equipment, all the necessary steps in letting go of living a decade Down Under. … Continue reading Confessions of a Caregiver, Vol. 2, The One Constant