Wednesday, August 01, 2012

voices never shared Multiple Sclerosis

Some mornings surfing through the news over a cup of coffee I am struck by the imbalance of Multiple Sclerosis awareness, at least to me, … even a recent comment to this blog raised this paradox in social media of what do we know about severe MS unless the caregiver speaks out.

Screaming from magazine racks in convenience stores and grocery store checkout aisles the world learned in late June that an old classic rocker’s son was recently diagnosed with MS and his Mom “won’t let my son die”.

Frederick Ray Jr. seated, celebrates his 70th birthday in West Chester on Sunday with his family. Ray was diagnosed in 1965 with multiple sclerosis and has lived 47 years old with the autoimmune disease. Dozens of family members and friends came out to the West Chester senior center for his party.
Yet how many noticed a MS Survivor Celebrates 70th Birthday in the headlines of the Daily Local News of Chester County, Pennsylvania.
“For the past 47 years, Frederick Ray Jr. has been nothing but an inspiration to his family and friends. Diagnosed with multiple sclerosis in 1965, Ray celebrated his 70th birthday Sunday at the West Chester Senior Center, a testament to perseverance and triumph against all odds…”
I also can’t help but wonder if it’s because he like my wife is both in a wheelchair and a care facility that the milestone gets no mention by local MS organizations.

Member of the U.S. House of Representatives from Texas's 18th district In office January 3, 1973 – January 3, 1979
Then over on the left coast I read in the Sacramento Press of the closing run of a play, Voice of Good Hope in its Final Run about the life and times of US Congresswoman Barbara Jordan (1936-1996), who at the highest levels of power and riveting oratory on the National stage concealed her MS.

Jordan began to experience MS symptoms in 1973 …eventually requiring a wheelchair. She kept the state of her health out of the press so well that … President Bill Clinton stated that he wanted to nominate Jordan for the United States Supreme Court, but Jordan's health problems prevented him.

“Cruel physical decline” is how theatre critics describe the portrayal of Multiple Sclerosis.

So back to the original thought unless a caregiver, or playwright, speaks up what do we know about those with severe symptoms of MS? 

“…People writing songs that voices never share
And no one dared
Disturb the sound of silence …”
Sounds Of Silence by Simon & Garfunkel
Patrick Leer
Caregivingly Yours, MS Caregiver @

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  1. Barbara Jordan, what a voice, what a mind. MS is a thief, and it stole someone who had so much to contribute. But then everyone has something of value to contribute that the arrival of MS blocks or silences.

  2. Yes Judy even in our celebrity driven culture we all do have meaning and purpose I wish more people realized that. I wish even more that those unable to speak for themselves could be given a way to be heard and not interpreted.

    Caregivingly Yours, Patrick

  3. I linked to you in today's poem.


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