July - August 1999
Living With CFIDS
Odd phrases #2: More
By Susan Dion
In a recent issue of The CFIDS Chronicle, a
request was made
of persons with CFIDS (PWCs): Send in "odd" phrases-those pieces of wisdom that aid you in living with
CFIDS. Share the words that provide guidance, perspective, sustenance, humor, insight or support as you
cope with your symptoms. Pass along the helpful phrases, those that get you through the worst days. By
doing so, we can assist each other in confronting the limits and losses imposed by CFIDS. (See "Odd phrases
become guideposts along the way" by Susan Dion, Nov./Dec. 1998.) Some of the responses are discussed below.
Thank you to each individual who took the time to write. It was a generous act of kindness.
'This too shall pass'
PWCs of all ages, backgrounds and circumstances
comfort and power in these simple, wise, oft-repeated four words-through pain, fever, physical deterioration,
emotional lows, challenges, crises, grief and more. This bit of Biblical wisdom supports one through the
everyday hurdles of chronic debilitating health conditions. For myself, I've especially found the repetition
of these words essential to persevering through drenching night sweats, cognitive confusion and intense
'Laughter through tears is my favorite emotion'
Lisa Lorden of
is unsure of the origin, but she thinks it may be from "Steel Magnolias." Clearly, "laughter through tears"
is a reminder of important ingredients in facing major transitions and the everyday bumps. Try saying
it three times each day for a week. Post it in large print on the fridge or near the bed. Very, very helpful!
Readers are urged to look at Lisa's list of encouraging, inspiring, frequently updated "Words of Wisdom"
on her web site at www.chronicfatigue.about.com/library/blquote.htm.
'Hope without expectation'
From Pahrump, Nev., Susan Best explains
that she accepted
the "Why not me?" early on as she believed that "there's no sense to be made out of illness." The phrase
"hope without expectation" allows her to realistically move forward, despite disabling symptoms. It is
also her favorite quote for responding to "all the well-meaning but thoughtless people who keep saying
stuff like, 'Well, you just have to stay positive and have a good attitude.'" An excellent reality check.
'It's time for one set of footprints'
Barbara Pickhardt of Thornton,
herself over to God with these words. She uses them when feeling terrible (whether emotionally, physically
or mentally) and when she must fulfill demands that are absolutely required yet appear impossible. She
trusts that God will help her through the challenge. Barbara adds, "I consider it a miracle that this
really works." Amen and thank you!
Ralph Stobie of Stover, Mo., shared several amusing
quotes," which ease the pain and isolation of CFIDS. To his inquiring adult children checking on him via
phone, he has wryly stated: "All is fine here, but now I think I'm getting dandruff." He often repeats
a line from his deceased brother-in-law: "I feel so bad today I couldn't even pull a sick woman off the
toilet." Ralph especially likes a ditty borrowed from a sign in the local deli: "I've been held up--held
down; beat up--beat down; lied to--lied about; and even married. So go ahead and ask for credit; I don't
mind saying no!" He finds his varied quirky quotes help him out of the "bad places" imposed by CFIDS;
thus he manages to retain his good humor at age 73.
'Attitude is everything, except a cure'
David and Wendy, a married
CFIDS, have recently resorted to this phrase out of a pet peeve regarding faulty usage of the term "cure."
Too often, in their opinion, "cure" is erroneously used to describe some improvements or significant adaptations
and changes in daily living with CFIDS. Wendy writes: "Our attitude about life and our situation and our
illness definitely shapes our perception and the way we experience things on a day-to-day basis... Our
quality of life is definitely good despite everything that CFIDS does to wreak havoc in the life of the
PWC." Among the bizarre collectibles of advice was one from a stranger (self-diagnosed and "cured" of
CFIDS) who overheard Wendy talking to a friend. The stranger offered the loan of her psychic cat, which
had "worked out the toxins.accumulated in her tissues" by kneading her owner's body at night. Whoa. (By
the way, each time I glanced at David and Wendy's address, I read the town name as "Survivor." How appropriate,
except that it's actually Sunrver!)
'You can't win if you don't run'
While a college freshman in the
late 1980s, Michigan
resident Jennifer Bacon heard Geraldine Ferraro give a rousing speech on campus. Ferraro's words, "You
can't win if you don't run," were specifically meant to encourage women to seek political office, but
Jennifer has found courage and strength in applying this tidbit of wisdom to numerous situations. Prior
to CFIDS, she'd resort to Ferraro's advice anytime she was afraid to try something. With CFIDS, Jennifer
gains extra determination via Ferraro's seven words-in asking one more question of a doctor or in introducing
herself to one more person who may be of help. Jennifer notes that Geraldine Ferraro's simple statement
is "a good credo for anyone to live by." Very true.
'Everything will be OK'
'You are as happy as you make up your mind
to be on any given
Lori Asbell-Donahue of Yardley, Pa., discussed her arduous 10-year journey with CFIDS. In
the early period, she felt her world was over when she was unable to continue working. Her doctor advised
a spiritual approach to living with illness, which seemed "kooky" at the time. Lori writes: "I cope through
acceptance and a positive attitude. I cooperate with my treatment. This means I put rest, proper nutrition
and mild exercise first, in balance. What a doozy!" The two sayings above are Lori's daily affirmations,
underlying her ability to live a meaningful life in spite of CFIDS.
'What difference does it make?'Many other guideposts are worth sharing.
Some may offer a specific insight or provide extra strength and hope. Others may assist with a difficult
challenge. Without further comment:
This question was posed with "sincere
to Betty Fox of Franklin, Ohio, by her then 5-year-old grandson when he heard her bemoan not having something
done the way she wanted. Betty looks back on that moment, not recalling "what that something was," but
remembering the jolt as she searched her brain for an answer. Betty remarks, "I filled with relief knowing
it makes no difference at all. None. How empowering, how liberating!" Betty shared another amusing and
instructive guidepost: "Don't hurry. It'll just make you nervouser." This was said by an elderly gentleman
as Betty impatiently sat in her doctor's waiting room. Ah, yes.
"I cried out in the darkness, but no one heard."
"Don't prejudge [the day, the symptoms, the
"You have a million choices in the way you handle--or live with--your illness."
let this turn you into a bitter, unhappy person."
"You are a person first. The fact that you are
a patient does not precede this."
"I must learn how to live with this illness. Right now, it's
all I've got."
Susan Dion lives in southern New Jersey. Two of her poems are reprinted
in Poetic Medicine: The Healing Art of Poem-Making, by John Fox (Putnam, 1997).