Recommendations. Reflections. Advocacy.
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
Support Claire 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 … Continue reading How to Successfully Engage with People with Disabilities
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)
Support Claire Traveling differently abled has never been better. ADA legislation coupled with ever growing consumer demand has greatly improved the availability of quality accessible travel in the USA and abroad. That said, as someone who travels as often as possible while managing FSH muscular dystrophy, I find that the following measures best ensure successful … Continue reading Top Tips When Booking Accessible Travel
Support Claire Disclaimer: This post is not a substitution for professional medical care. Sometimes people undergoing a significant life transition or living with a chronic condition develop anxiety, anxiety that can lead to a panic attack. As someone living with progressive FSH muscular dystrophy, I am one of those people. The good news is that … Continue reading The 10 Best Ways I Keep Anxiety at Bay
Support Claire Despite the ups and downs of this intense life chapter - or maybe because of them - I find my connection with Claire deepening, not knowing that I could give and accept love with such intensity. Over the past two years, my wife has needed, not one but two, kidney stones surgically removed … Continue reading Confessions of a Caregiver, Vol. 4, Adventures in Healing
Support Claire 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 … Continue reading Queen for a Day (with Muscular Dystrophy)
Support Claire When service is selfless, it brings joy and peace. When it is rendered with attachment, it brings pain and suffering. If we experience suffering in service, we can examine the way we offered it. An exquisite path of awakening!—Ellen Grace O'Brian There was a knock on the door, the entry from the open … Continue reading Confessions of a Caregiver, Vol. 3, When Opportunity Knocks
Support Claire A friend told us about Phoenix’s Heard Museum over dinner. Intrigued, my husband and I went the very next morning, and were so glad we did. She was right: The museum’s collection of traditional and contemporary American Indian art (mostly southwestern) is simply superb. Each exhibit oozes quality over quantity. Great accessibility From … Continue reading Heard Museum, Phoenix
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