My junior year of college I was brutally arrested in Miami while attending a peaceful protest as part of a class field-trip. After being held for over 20 hours with no food and very little water, I was allowed my first and only phone call. They’d blocked all calls to cell phones and the protesters local “Legal Number” and my parents were living in Mexico for that year. Even though it was nearly 11PM I decided to call and wake up Nanny. Since we’d been attending rally’s together for years I knew she supported my protest activities. She was the recently retired director of the Vermont ACLU and knew exactly how to take this kind of call. She didn’t waste time on grand-parent niceties, she started with questions about my condition and what I needed, then quickly began to ask specific legal questions about my treatment. She was outraged at the system and told me she was going to call her friend, the director of the Florida ACLU. Within seconds of her mentioning those four letters our phone call was disconnected. Though the call lasted only 3-4 minutes she was the solid rock I needed to get me through my first ever stint in jail, an experience I will never forget.
From the ACLU to the Peace Corps, from anti-war demonstrations in the nations capital to Healthcare is a Human Right rally’s at the State House, Nanny has dedicated her life to helping improve the lives of others. When I first came out as a trans-woman I had mild concerns about how various family members would react, though I never questioned for a moment that Nanny would receive the news with a smile on her face. A week after we told her I got a package in the mail containing a selection of broaches and pins. While some of them had gone out of style generations ago, it was the best gift I could have received. In honor of her love and support I took my first dose of hormones on her 71st birthday. I called that night to wish her a happy birthday and let her know I’d started my hormones. The joy of the moment brought tears to both our eyes.
Nanny has Cerebellar Ataxia and has been in a wheel chair for more than a decade. Throughout the last 10-15 years her condition has slowly deteriorated, her speech has become more slurred and her lack of coordination makes every day tasks nearly impossible. Even so, until her stroke a year ago, she remained in her home and insisted on cooking a large dinner for our extended family (often 15+ people) every Tuesday night. Everyone looked forward to “Tuesday Night at Nanny’s,” which she insisted retain this name even after we switched the meal to Thursday nights. Her stroke left her unable to move either her arms or legs and unable to speak, yet her mind remains sharp. While there were several weeks of frustration all around, her will to live and spend time with family has never faltered.
Now in a nursing home and having very little control of her body she insists on continuing her cooking and art classes and participating in daily life. When I brought her library books last week she had marker all over her hands, face and shirt. When I walked in the room her smile blossomed as it always does. I said “Let me guess, you had art class this morning?” She looked at her hands and we both laughed until the tears came. No matter what the world throws at her she does what she’s always done – spends her day making people smile. Cerebellar Ataxia is a genetic disorder which I may or may not have. I won’t know for sure until it strikes me, hopefully not for another 35 years. I only hope that if I have it, I am able to embrace it with the grace, dignity and positive attitude she has.