Support Claire 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, … Continue reading Bending Focus: Lessons from a Rare Disease
Tag: changing roles
Let’s Talk About Caregiving (and Muscular Dystrophy)
Support Claire The quality of mercy is not strain'd. It droppeth as the gentle rain from heaven Upon 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 … Continue reading Let’s Talk About Caregiving (and Muscular Dystrophy)
Confessions of a Caregiver, Vol. 2, The One Constant
Support Claire 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 … Continue reading Confessions of a Caregiver, Vol. 2, The One Constant