Quiet Mountain Essays

Copyright, 2004

Group Therapy for the Uninitiated

by  
Judith K. Witherow

Night, without fail, unseals my eyelids like some half-licked envelope flap.  Does it still believe it will catch me napping and carry me painlessly away?

How can I gain the strength to attend our support group this morning? Everything hurts but my earlobes and several broken strands of hair.  No.  Staying home isn't an acceptable option.  I need to go.  These women share my same bed of illnesses.  Many of them will look and feel worse than I do.  

“Sue, does it seem like I’m giving away clothing faster than a dead relative’s family? Please help me look for clothing to wear today that fits.”  Reed thin women are considered more desirable in this country, but try losing weight the muscle wasting way.  Don’t tell me I look good!  Looking good stopped after sixty pounds of quick weight loss.  Your eyes see the young woman you met twenty-five years ago.

I hear this same “weight” statement from other women, but many of them are at the opposite end of the weight scale.  Steroids, to help control some of the symptoms, can cause varying amounts of weight gain.  (It also causes calcium loss in the bones.  Osteoporosis gets added to our list of diseases caused by medications that supposedly slow damage.)

At group I know that a chalkboard will be waiting.  It will be filled with words to help us cope with our disease.  They hold the answer to things some of us too intimately know but if a new person arrives we’ll discuss them once again
.  
These “step” words are used at various groups.  Our particular group is one with a five-step program.  The words are Anger, Bargaining, Depression, Denial and Acceptance.  We have been taught that you don’t stay at any one step.  You move back and forth using the word that best describes where you are at the moment.

“Bargaining.  It’s called bargaining.”  It’s one of the words I hear the facilitator keep repeating.  You strike a bargain with whomever it is you believe in.  This is where you weave between praying and promising—sweating and swearing.  “I don’t know what I did to deserve this, but I’ll try to make amends.  Why does trouble always find my change of address card?” The philosophical side of me asks, “If not me, who? Who deserves this much ill health?”  

The Spirits dare me to name names.  Sorry, but that’s a line of spaces I choose to leave blank. Things can always get better, but here sits a woman who has watched them go in the opposite direction numerous times.  Allow someone who hasn’t been properly humbled to answer that question.  Call on another woman who has less immune system diseases than I do.

I will speak aloud the name of one of my diseases.  Systemic Lupus. It has brought me to this particular group.  Like many other women of color I was chosen by lupus.  It pulls in new recruits faster than your connective tissue can fray.  It’s another disease that has very little money for research despite the fact that it out numbers other well-known incurable illnesses by a wide margin. Whenever, “it strikes women more often” is heard, the battle for funding automatically begins. When you add the predominance of women of color you have two strikes, and you’re about to take the third swing that signals-“You’re Out!”

“She Who Does Not Have Lupus” tells us our goal is to work towards acceptance.  “Do not give up and do not give in, but try to accept the diagnosis of your disease.”  Maybe it was phrased differently, but I was busy rearranging my swollen hip joints.  A padded chair would certainly feel good, wouldn’t it? I’ll write myself a reminder to bring a cushion next time.  It’s a scrap of information that comforts me more than the words I’m trying to concentrate on.

SHE continues doing the job she has been trained to do.  “Anger.”  “It’s perfectly normal that you feel angry.  Only someone in Denial would feel otherwise.”  SHE is very good at what she does. That is not enough.  The knowledge I crave can only come from the other “chosen” ones.

Wouldn’t it be more helpful if I shared my theory of how lupus entered my body? How years of drinking run-off water from coal mines did more than quench my thirst.  If crying could drain my body of toxins via my tear ducts, perhaps I’d try.  But where would you store so much poison until a safe means of disposal could be found? My secrets have to be whispered to the wind until the time is right.  The words will endlessly echo the reason why I think there’s so many immune system diseases among family, friends and others.  

Until something better comes along I will listen as SHE explains the steps we need to survive until a cure is found.  The steps may help some but today they only serve to heighten my Depression.  I know that today will be one of the last times I can walk the distance to the meeting room.  The Rheumatologist has advised me to start using a wheelchair before I fracture a hip.  That would not only be depressing-it could be life threatening.  After previously breaking numerous bones the thought of hip or knee surgery causes a mental fall down all five of the steps.  (Lupus destroys cartilage and this puts your joints at greater risk).  

Thinking about the loss of walking causes me to envision starting another Step Program.  It would contain the letters—R.A.M.P.-Rage Against Major Planning.  It would teach others about the difficulty life’s barriers entail.  Going through regular sized doorways, shopping in stores where the aisles are cluttered with merchandize, trying to reach something while seated in your chair, finding a handicapped parking place, educating doctors about effective pain medicine, etc., etc., etc.  This is beyond depressing.  

Until all women’s health becomes a priority, many will die or become disabled, without even knowing the name of what crippled or murdered them. It’s not enough to give a donation, make a phone call or send a get well card.  Disability is a 24/7 way of life.  Spend enough time with someone so that you know what a “day in the life” is really like.  It won’t give you the entire truth, but it will be a big step towards understanding. You can walk away and go about your life, but my bed of illnesses is a forever deal.  Does that sound like anger? No.  It’s the inescapable truth.

Contributor's Notes...

Judith K. Witherow is a poet, essayist and storyteller; a political activist recognized primarily for her widely published essays about disability, gender, sexual orientation, race and class.  A mixed blood Native American raised in rural Appalachian poverty, Judith moved to Maryland in 1964.  It was too late to escape the ill effects of environmental poisoning and subsequent autoimmune disease caused by abuses of coal mining companies.  Although the mountains stole the better part of her health they could not erase her love for all things beautiful in nature.  Visit her website at:  http://www.jkwitherow.com/pages/1/index.htm

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