Friday, April 29, 2016

Remembering A Special Blogger Friend...

Seven years ago, I went from walking to wheeling, a life transition proceeded by months of pain, injuries, falls, and a devastating knee diagnosis that included the fact that surgery was not an option. Five attempts at bracing and months of failed physical therapy left me drained, increasingly frustrated and tired. Heartsick over my increasing involvement with a medical system I'd long regarded as broken, I reluctantly accepted the recommendation of my physical therapist to see an adapted seating specialist for assistance in selecting an appropriate wheelchair.

Born prematurely and diagnosed with a relatively mild case of cerebral palsy as an infant, I spent my earliest years having surgeries, daily physical therapy, regular changes of braces and other less than salubrious activities, interspersed with periods in a chair. Diagnosed with osteoarthritis at twenty-six, I nonetheless continued swimming, yoga and walking until, at almost fifty, a series of falls and injuries left me virtually bed bound. With the discovery of extensive damage to my right leg, I began understanding the foremost fear of every person I'd ever known with a disability: the reality of becoming increasingly disabled or immobile. Presenting myself to the adaptive seating specialist, I was asked a series of questions about my daily activities, living situation and transportation, unaware of just how much each was to change.

After waiting several months for a custom-fit ultra light manual chair and then finding out that my insurance did not cover the several thousand dollar cost, I scrambled around raising money, even as my pain and stress levels skyrocketed. Friends and colleagues suddenly became scarce, a situation I was later to learn, that is all too common for wheelchair users. Days and nights would stretch on as I fought insomnia, went to work and tried to figure out how to modify the obstacle course that my home had become. Depression set in and a close friend I'd known since my undergraduate days suggested that I seek out the advice of other women who used wheelchairs.

It was during one of those late-night forays into the world of blogging that I met a fabulous red head who was as generous, humorous and kind as she was whip smart. She read my e-mail to her with interest and provided not only practical tips on subjects as mundane as trash removal and where to get help for a sudden flat but, after reading some of my early posts, her experience as an academic showed in her critiques of my writing. The fact that both of us could speak widely about books and films and had traveled and lived abroad helped me, as a more private person, feel comfortable in what became an online friendship.

Eventually, she talked frankly to me about the fact that both she and I and others she knew, were mourning profound changes in our lives and needed to realize that this was normal. Additionally, the attitudes and discrimination, lack of access and widespread misconceptions held about wheelchair users were real but that was no reason not to travel, work out, do new things, enjoy one's life and partner or attempt to reach goals. She started a postcard project aimed at breaking the isolation that often accompanies disability or chronic illness and would send postcards regularly to those who requested them. I loved getting these because no two were ever the same. Because of her I learned about manga and anime, tried and now love blackberries, wasn't afraid to go cross-country by car, picked up my guitar again, opened myself to new friends and community involvements and resumed living, albeit differently. She did all of this and more herself while dealing with the increasing debilitation and pain that came with a terminal illness.

 It is hard to believe that three years have elapsed. I still have moments in which I think,"Gee, wouldn't it be great to talk about--" before remembering that she is not here. She was amazing and so is her longtime partner and their close friend who saw them both through her illness. I really respect all three of these women. I hope everyone who reads this will begin to understand the power of support and generosity and find a way to make it part of your lives as my friend and her partner have done.
Thank you, Elizabeth.

Tuesday, April 12, 2016

Funerals Bring Up All Manner of Things...

 The last two weeks have been marked by tiredness and a stomach virus. I genuinely felt at one point like a rolling bio hazard. As someone reminded me, stress, whether good or bad, takes its toll, so I guess I should not have been surprised. The last three years have been tumultuous and marked by departures, some of them stunning. While most of us would associate that particular descriptor with something beautiful, it also most aptly describes events over which we have little to no control and which often can bring us to our knees, metaphorically if not otherwise.

My aunt's death was sudden, but a good one, in that she died peacefully at home surrounded by people who cared for her. In addition to her expertise at cultivating flowers and gardens, she cultivated a vast social network that by the end of her life included friends, members of her religious community, those in the regional and state arts scene, politicians, academics and a host of others from varied walks of life.

Seated at the end of a pew surrounded by about five hundred and representatives of the local media, I reflected not only on her life but my own. Like this aunt, I suffer no shortage of opinions and tend toward generosity. Though Lacking the physical prowess to grow and nurture flowers and food, I nonetheless have a healthy respect for those who do and have always enjoyed being outside.

As a kid, I loved the beach, parks and camping and it was a particular joy to me to teach   camping, hiking and rowing skills to younger children in my teens, despite a lifelong disability. Also like this aunt in her youth, I often nurtured younger children, sometimes as a teen baby sitter, intermittently as a visiting cousin and as a volunteer, and then as a young teacher, though I never seriously desired children of my own. Teaching was short-lived and my work life evolved around writing and editing with other things thrown in, pushing me into the creative world. As a librarian much later, I was often front and center when it came to dealing with folks of all ages, backgrounds and foibles.

Unlike my aunt, however, I eschew the limelight. I am an introvert with all of the characteristics that now much-bandied term suggests.  A loner by inclination,  I frequently find crowds almost intolerable. Though I've schooled myself in the art of the poker face and often appear to others to be comfortable talking with anyone, these are skills my professional life forced upon me. While I am grateful to have developed these abilities, true happiness is generally found in the peace of my bed, book in hand. A cup of tea and my cats also figure prominently in such a scenario.

While introverted persons are often mistakenly labeled as being shy, something I have never been, I am very selective to whom I speak and what I reveal and do not trust easily, traits developed as a result of being part of a family that used any personal piece of information about another as potential ammunition and fodder for comparison. As a younger person, I learned quickly to keep my mind on my schoolwork at home, do my chores, be polite and reveal next to nothing of my deepest dreams to either parent. The fact that they and I saw the world differently was down to being a teen, in their view. That  my perspective broadened as the result of travels and experiences entirely different from theirs did not come into the matter. Neither did my gender or the fact of my disability nor the time and environment in which we lived. Such epic shortsightedness, common for both was, unfortunately, more solidly entrenched in my mother, a woman whose view of herself as a parent differed radically from my own.

She seemed to have a love-hate relationship with her extended family, and myriad issues with her own mother made my getting to know those beyond my grandparents harder than it should have been. Such are the vagaries of family dynamics. Then, there was the matter of geography, the forming of relationships with step-siblings, the medical and therapeutic issues in my childhood and other less salubrious events. By the time I reached high school, a sense of "otherness" dominated my immediate horizon, something it took me years to understand and a situation I still encounter today as a woman with a chair. Sitting at the end of pew with a bird's eye view of a cousin's collar left me wondering whether the capable woman that I have become should feel differently about this family...I have no feeling of belonging anywhere or with anyone, merely being here and wondering why.

Until Next Time...