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Welcome to Butterfly News Issue 5. Please accept my apologies for
this newsletter being sent out a week late, which in part is due
to my dad having an accident at the beginning of the week. I am
also setting up my own business, along with running two websites
which both get over 1/4 million hits a month! So you can see that
I don't have much time to spare at the moment! Hopefully, in a few
weeks, the business will be up and running & I will have more time
to write articles for the newsletter & website.
For this issue, Shar has written about her own experience
with lupus, something which I plan to do in the near future.
IN THIS ISSUE
* Beyond Acceptance
* Pass it on!
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"Beyond Acceptance"
You wrote, "Sure, I know, you have resigned yourself
to your situation, and you have accepted certain restrictions of
life. "
No, no, dear friend,
I haven't resigned myself ~ for me, that would be
fatalistic thinking. Instead, I've rewritten the script life handed
me. Yes, the Wolf was midwife at my birth, had been my sidekick
for decades before we were properly introduced and what he hasn't
done to me so far; he just hasn't thought up. As his playmates,
he's tossed in a few Lupus related syndromes. I've been in a coma,
gifted with multi-organ involvement and I do all my work from my
mattress/office. Once I was nearly fitted with plastic parts, coming
to just in time to decline the offer, luckily, with my acute latex
sensitivity. Lupus has the power to turn my bones into spun glass,
exfoliate my scalp, shrivel my kidneys and trade my hands for claws.
The Big Bad Wolf can drum on my lungs, stroke my brain, play a 'hearts'
tournament in my chest and turn the tooth fairy against me.
Life is constantly under construction, always open
to interpretation and ever preggers with those identical twins,
Ooops and Opportunity. Everyone gets the pick of that perpetual
litter and we can always trade up but some still swear they got
bamboozled. Somehow, I've been plunked down in an institute of higher
learning situated on the grounds of an amusement park, with one
wild ride per student; no choosies and no excuses from the School
Nurse. Naturally, Wolfie's running the rollercoaster, no seatbelts,
no brakes, no barf bags. If I applied for this scholarship in a
previous life, I should've left myself a memo.
Yep, it's a wonder, this wizardly Wolf but however
potent it's power, Lupus hasn't strangled my sense of self or crippled
my ability to lead a valuable life. I don't waste my life weeping
for what I can't have or do, or for what I must yet endure ~ to
survive with regret would tarnish this cherished gift I'm so eager
to explore. I don't live my life inside these walls or even wholly
within my body but within my potential, which can only be limited
by my ability to envision life on a deeper level and my determination
to follow through. So, yes; I've got Lupus, but it ain't got me.
After years of misdiagnosis, a series of traumatic
medical events had left me in constant excruciating flare, too frail
to lift head from bed. Always an avid researcher, with a once near
photographic memory, I couldn't remember my own birthdate, address
or phone number. I didn't know left from right, had only a loose
association with numbers and lost my place while counting to 10
on my fingers. Doctors, good men all, agreed that my health was
"beyond hope" so at the ripe age of 27, I was left to rot at the
bottom of the vegie bin. I felt a profoundly sad sense of loss at
my doctors' surrender and abdication. Still, having once more survived
the unsurvivable, I also felt like a reprieved fish might, released
from death, gasping and wriggling back into the flowing stream of
life.
Common sense and wisdom having mutually decreed that
woe was me and that was that, I set to work to save my life. Not
knowing it was theoretically impossible but sure that it was necessary,
I devised my own physical therapy. Meditatively, prayerfully doing
deep breathing exercises while visualizing, feeling oxygenation
blessing my body, cell by cell; I befriended my battered body. Exercising
isometrically by gently contracting, holding, then releasing one
muscle at a time; I nudged my body to respond. Soon I was dragging
myself off the bed and across the floor toward the bathroom ~ an
aversion to bed pans is a great little motivatior. One round trip
was an all day excursion, with frequent breathing spells as I slowly
re-educated my legs and feet on their proper roles in this routine.
Finally, I built enough strength to hang onto the furniture, for
those moments when my feet and legs fell down on the job. I passed
out frequently for a long while; gone like a flash in mid-step,
fracturing foot, toes, fingers, ribs and nose, on the trek to win
my life back. But as I kept challenging, stretching and rediscovering
my life, with my brain busily rewiring itself enroute, "Appreciation"
became my mantra and this simple prayer still permeates my life.
Nowdays, we have mentors on our journeys, including
The Wellness Train at: http://www.100megsfree.com/wellnestrain/homepage.html
encouraging and guiding those painfully ill to reclaim their lives.
Our community is home to The Lupus Chronicle e-zine/site at: http://hometown.aol.com/pubpanda/page2.htm
Everyday Warriors: http://www.everydaywarriors.com/ and The Living
With Lupus Club: http://clubs.yahoo.com/clubs/livingwithlupus with
friends whose tales of travels with the Wolf are the heartbeat of
my work. For healthy tips, there's Oxygen.com's: "52 ways to relax
and rejuvenate your mind, body and spirit": http://thriveonline.oxygen.com/serenity/relaxing_rituals/index.html
and more worthwhile tips on Oprah's page, "Listen to Your Body"
at Oprah.com's : http://www.oprah.oxygen.com/living/lifemake/experts/tracy/expert_tracy_signs.htm
Life made me an advocate at 3 years old, when, realizing
that my sister had permanently lost her hearing to an ear infection,
I tried to be her 'other' pair of ears and learned sign language
with her. When I was 12, I began working among children and adults
living with developmental challenges including Down Syndrome. I
learned early on that focusing on anyone's perceived limitations
doesn't just sell them short in our own minds; it keeps us short
of the level of awareness that gets us past that dehumanizing concept.
Advocating for others' needs while coping with my
own unrecognized SLE flares, surgeries, super-infections and more,
I've seen just how quickly the term "patient" translates into "passively
patient". Flesh and blood people begin fading into invisibility
with the first step over a medical threshold. Many medicos are highly
skilled and sensitive human beings but some visitors to my body
have behaved as if they owned it, knocked me cold and ransacked
the place. We can be frustrated into flare by those medical people
who choose to view us as lab rats; compliant "patients" who should
be seen, poked, prodded and bled but not heard.
Then we access the Internet and this world isn't virtual
for us; it's the end of information isolation and suffocating silence.
This is the new Gathering of the Tribes; we're banding together
in the web's wilderness, pooling our resources and multiplying our
strengths. Life with Lupus is guerilla training for Lupie Warriors
of the Wolf "Bit But Not Et" Tribe ~ a soul shaping workout indeed.
My work in healthcare advocacy and writing on the Lupie experience
is so illuminating and soul satisfying it makes my journey, Lupus
and all, a 'pilgrim's progress'. Learning and growing beyond seeming
barriers to surmount the supposed limitations of this illness and
being able to use this experience for the good of others is, to
me, a transcendent fulfillment of purpose.
That's the resounding message of the artist Lisa Fittipaldi's
website, Art From The Mind's Eye: http://www.blindartist.com/ For
me and clearly, for her, it isn't about accepting restrictions;
it's about transcending them. It hasn't occurred to me in years
that my life is "less" than it might be ~ rather, it's different
than I'd previously believed it would be. My life is my gift and
my responsibility, progressing as far, as dimensionally, as my imagination
and determination can stretch.
How have some concentration camp captives and prisoners
of war survived confinement, isolation and torture to emerge with
expanded appreciation of life? Nelson Mandela managed to live so
fully beyond his over 27 years in prison as to become President
of South Africa, then lead it to grow beyond apartheid ~ the very
country that had imprisoned him. By reconnecting to life in a deeper,
broader, more dimensioned mentality, he developed a stronger connection
to all life and a definitive realization of purpose.
For me, life; well and truly lived, ultimately has
less to do with the space we occupy or the mobility of our bodies
than it has to do with what occupies us and the mobility of our
minds and spirits. Physicality can't cripple us so totally as mentality
will. It is "resignation", to accept that life can only be fulfilling
in specific terms and that living outside of or beyond those terms
isn't possible as a vital experience. It is ~ I'm doing it right
now and I'm only one of many. Merely surviving wouldn't energize
our engines; a thriver knows there are no boundaries to an active
mind, involved body and determined spirit, working in sync. I don't
relate to life in terms of restrictions but in terms of creating
or recreating options and exceeding preconceived grasp. If we can
envision our lives "outside the box', we can incorporate a boundless
reality and graduate this life having earned our Master's degree,
with honors.
See you at the Class Prom!
Shar
Researched, written and copyrighted 2001 by Shar Phoenix
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Pass it On
Please feel free to pass on this newsletter to a friend,
but please forward the whole newsletter, complete with copyright
information. If a friend has sent you this newsletter, and you would
like to receive it regularly, please go to
www.uklupus.co.uk/luplist.html
**************************************************
Butterfly News is copyright Joanne Forshaw/Shar Phoenix,
and may not be reproduced in any form, either printed or electronically
without prior permission of the authors. The Lupus Site http://www.uklupus.co.uk
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