Missing Those Who are Lost

I learned today on Facebook that a woman I’d never met face to face died of a massive heart attack. Her name was Faye, and I came to know her long after she had come to know me.  Four years ago, I opened my first website, Beyond Old Windows. It is a place where I began posting some of my accumulating writings … a way to find an audience for them. Faye found them, and was an appreciative audience.

A year or so later, after beginning to self-publish my books, I opened a Facebook account. Facebook, I’d been told, would be a place to make my books available to more readers.  I wrote about Multiple Sclerosis, and I found a connection with a group of people with MS. Faye was again there, and when the group invited me to do a telephone interview about the book, she was among the callers. She told me of having read my website for the past year or so; I knew then that we were friends, even at a distance.

My sweet Facebook Friend, Faye Manos Quinn. “Smooches!”

Faye shared photographs of herself and of her beautiful adult daughter. Her participation in conversations at the MS pages of Facebook tapered off in the past year, and then recently she returned. She was open, and wrote of losses … the loss of her husband, and then of his family – family that she felt had become her family. The feeling was not mutual, and she mourned that loss as well. But she felt that we, the Facebook members of the pages of MS, were also her family.  She treasured that connection, as did the rest of us.

Her death was unexpected, and yet inevitable, given the disabilities she had experienced due to MS’s effects on her body. Her warm messages, her ever-present ” closings to her messages, SMOOCHES!” will be missed, and remembered with fondness.  I will miss her steady confidence and can-do attitude, her faith and sentimentality in her posts, and the beautiful photographs of her surroundings that she shared with all of us. Perhaps we didn’t need to meet face to face, as we shared so much word to word.

There is another woman with MS whom I’ve never met; one with whom I had not been able to share words to words.  I came to know her only through media … not social media, but news media. She was a woman of academia. She had dedicated her life to being a strong educator, and had found success within her field. But MS had found her, too. She eventually had to resign from her position as MS took from her the independence, spontaneity and strength needed in her profession.  She went through the stages of grief one experiences with a loss. But rather than reaching passive acceptance, she remained in anger and defiance. She has preserved her thoughts and words relevant to the national health service of the UK in her farewell video. She made the video to be played at her funeral. And true to what she calls her independent self, she chose the time and place and manner of her death, rather than continuing the decline afforded by MS.

When I heard her story, I was troubled by the similarity of her career’s end and my own. I understood her reluctance to accept MS. I have chosen to stay in Denial.  And I wondered how she came to her decision. I knew that her symptoms, like Faye’s, were more debilitating that mine presently are. And I chided myself for so publicly, so often, saying that I am “blessed” with a less-aggressive form of multiple sclerosis. I am humbled to think I would so confidently assume that it’s a matter of blessings … surely Faye deserved as many blessings or more than I. Surely everyone with a chronic condition like multiple sclerosis deserves blessings, as do their loved ones. What  path my own MS may take is unknown to me, and while I plan to do my level best to hold it at bay, I can’t assume that it won’t have its own course to follow. I am sure this woman struggled with her decision. I am sure her sons, her family and friends still struggle with it. But I will let her tell her story here, and leave her in peace for having made her choice. I have no idea for how many years she persevered and moved forward before deciding to step out.

The most poignant statement she made, in reference to her view of MS and its incurable status and ineffective treatments that frustrate patients, families and the medical community alike, is the one in which she says “Compassion has no cost, and yet lack of compassion has an immeasurable cost.” She felt that some in the medical community involved in her care and treatment were without compassion; no doubt she believed that her decision was the most compassionate thing she could do, both for herself and for those who loved and cared for her.

Here is the link to Frances Medley’s “Explanatory Statement.” http://vimeo.com/84508563   I will always keep in mind her honest estimate of the value of compassion,and plan that in my life, compassion will always be freely given, and freely accepted.


1 Comment

  1. Renee

    You are a very compassionate person. I have been blessed to have found you. You have been so patient and understanding with me. I will consider you my true friend forever.
    With love, Renee

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