[Previous Months][Date Index][Thread Index][Join - Register][Login]
[Message Prev][Message Next][Thread Prev][Thread Next]

[IP] Sharing our "stories"

Greetings all:
   Mea culpa first of all - I did download AOL 6.0 so this is coming through
in "HTML" (which is why I've essentially stopped posting until it's resolved)
but my following l-o-n-g e-mail has been so well-received by those in both my
diabetes & breast cancer support communities, that I felt it was worth
sharing regardless in light of the recent depression thread posts:

   Greetings all:                 Sunday, November 5,2000
    Yesterday Mel and I attended a seminar sponsored by the Linda Creed
Breast Cancer Foundation in Philadelphia. Although the 3 panelists were all
BC survivors, the 2 keynote speakers' life experiences touched upon other
aspects of the theme: "Life with Chronic Illness: New Challenges, Insights
and Understandings."
    Dan Gottlieb, PhD is a family therapist whose life changed forever
following a car accident over 20 yrs ago that rendered him a quadriplegic.
His sage advice & cogent insights are well-known in this area through both
his radio show & his newspaper columns. Linda Welsh is also a therapist and
author, a BC survivor and the widow of a man who battled end stage renal
disease for 9 years. Their stories & their journey & their life lessons
touched every heart in that audience, as did the 3 BC survivors who also
spoke. One was a young OR nurse, about to be married when she was dx'd. In
the intervening 3 yrs, both her older sister and her aunt were also dx'd. The
silver lining in her cloud was her sharing that she is 3 months pregnant with
her first child, but the dark cloud was the heart-wrenching comments when her
mother rose to speak too about the pain of watching both of your daughters
deal with BC.  I was very touched after I rose to speak when a woman
tearfully approach me & thanked me for my comments. I had spoken about the
AOL message board & meeting the 40 wonderful women in Vegas & what has
happened since then.....and how through their battling & yes, even their
dying, these women have taught me more about LIVING than about dying. I also
spoke about Melissa & my diabetes involvement & how unlike my own treatment,
her daily care for her chronic illness is NOT finite, but just goes on &
on...and how that inspires me.
  But what I really wanted to share were comments from the moderators that I
jotted down because they "spoke" to me about things I hold so dear...For
expediency sake, I'll just enumerate them, rather than be literary.
  1) Righteous indignation is TOXIC...all of us have encountered friends,
associates, family members, etc. whose inappropriate reactions to our
familial situation angered us....but "holding on" to that anger is corrosive
to our soul
  2) chronic illness steals one's identity and "voice" & replaces it with a
sense of "being different"....when my daughter was interviewed & asked if
being diabetic had made her excluded, she said "not blatantly - but in my own
  3) from the initial terror upon hearing a diagnosis can evolve depression,
grief, mourning the loss of the "fairy tale road map" you'd envisioned, and
then finally understanding, wisdom & compassion
  4) a lot of time was spent on "martyrdom" & the need to ALLOW others to
feel useful..a BC survivor shared how she'd been so stoic & told everyone she
was "fine", even going to all of her chemothreapy sessions alone. In her
attempt to delude herself into believing she was doing great, she never saw
how she had alienated her children & husband
  5) the need to "normalize" your "new" normal...remain connected to others,
vent, accept, reach out & tell your story...I also related to the group one
of my favorite lines that the reason I still remain so involved is that
Cancer (or diabetes) wins TWICE if I don't do so - by robbing us of body
parts & also robbing us of a VOICE that can empower & educate & liberate
others who are alienated with their fear, suffering, pain, frustrations,etc.
  6) I loved this thought:  the "stories" that we share are in a sense
ANTIBODIES against illness and pain, validating another's suffering &
instilling HOPE
  7) the conference concluded with a wonderful anecdote about having planned
for a wonderful trip to Italy because "everyone" was going there & raving
about it...and how you'd studied the language, read all the guide books,
researched your itinerary....only to awaken from a long flight to hear that
you'd landed in HOLLAND! Holland! Hey - I'm supposed to be in
Italy..."everybody" I know is having a great time in Italy...how did I get
HERE? I don't want to be HERE!...but here you must stay & in time, you WILL
"learn the language" and you will meet the wonderful people, and you will see
the beauty of windmills & tulips & wooden shoes....and yes, you may regret
never having gotten to Italy, but there's no need to "mourn" the loss of
"Italy" when there is so much beauty to enjoy in Holland!!!!
regards, Renee