Sunday, April 29, 2018

In Memory of a Special Blogger...






Nine 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 and her spouse travelled to Japan, taking readers along, and had many other adventures, all while coping with a terminal illness.

 It is hard to believe that 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, from the bottom of my heart...

8 comments:

Wisewebwoman said...

What a beautiful tribute, E. How you must miss her! I understand more now about your long history of health challenges. You are such an inspiration to me.

XO
WWW

37paddington said...

A beautiful and thought provoking post. Thank you, e.

jenny_o said...

How fortunate that the universe led you to Elizabeth's friendship and guidance. Recently I've been pondering this question of living well with chronic illness and it sounds to me like you have already successfully travelled a road many of us will stumble onto with surprise as mere age takes its toll. Thank you for writing about this, e. It helps.

LL Cool Joe said...

I can understand why you must miss her so much. This was a lovely tribute.

Elephant's Child said...

Elizabeth sounds like a warm and inspirational woman. I hope she realised what a difference she made. And continues to make. Any one who can give hope and direction in a star in my eyes.
Hugs.

Martha said...

What a beautiful tribute. This brought tears to my eyes. Thank you for sharing this with us.

Steve Reed said...

A terrific post, E! I'm sure your friendship gave both of you a boost.

Secret Agent Woman said...

A lovely tribute to a lovely friend. It's hard to lose a good blog friend.