NJ ME/CFSA

by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel.
It's like this . . . . . .

When you're going to have a baby, it's like planning a fabulous vacation trip – to Italy.  You buy a bunch of guide books and make wonderful plans.  The Coliseum.  The Michelangelo David.  The gondolas in Venice.  You may learn some handy phrases in Italian.  It's all very exciting.

After months of eager anticipation, the day finally arrives.  You pack your bags and off you go.  Several hours later, the plane lands.  The stewardess comes in and says, “Welcome to Holland”.

“Holland?!?!” you say.  “What do you mean Holland???”  I signed up for Italy!  I'm supposed to be in Italy.  All my life I've dreamed of going to Italy.”

The important thing is they haven't taken you to a horrible, d

isgusting, filthy place full of pestilence, famine and disease.  It's just a different place.

So you must go out and buy new guide books.  And you must learn a whole new language.  And you will meet a whole new group of people you would never have met.

It's just a different place.  It's slower paced than Italy, less flashy than Italy.  But after you've been there for a while and you catch your breath, you look around … and you begin to notice Holland has windmills … and Holland has tulips.  Holland even has Rembrandts.

But everyone you know is busy coming and going to Italy … and they're all bragging about what a wonderful time they had there.  And for the rest of your life, you will say, “Yes, that's where I was supposed to go.  That's what I had planned.”

But … if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

by Susan Dion, copywrite 1994

I've been a tomato lover for many years.  Growing, cooking, slicing, eating, experimenting, enjoying, desiring.  Summertime is fresh-garden-tomato time in the northeast.  My husband Tom tends a wonderful garden.  As typical, his efforts resulted in a delicious and bountiful harvest throughout the long, hot South Jersey summer of 1994.

One early evening in late August, I crawled from bed to kitchen.  Drenched in CFIDS flu-induced sweats, with accompanying fever, pain, weakness, and malaise.  I contemplated a luscious garden tomato.  My intent was to slice it and serve it with some reheated leftovers for a simple nutritious meal.  I looked and I pondered.  I thought again.  I attempted some slow and confused steps in problem-solving.   In a mind muddle of CFIDS flu and distorted thinking, I couldn't recall the lessons and experiences of some 20 years of slicing tomatoes.  How?  Which direction?  What's up?  What's down?  What's right?  What's wrong?  The tomato failed to answer.  I plunged the knife into its juicy innards.  I sliced into its deepness and freshness.

My dear Tom later smiled as he ate the tasty tomato.  He questioned why it was so bizarrely sliced?  I explained in briefest terms that I had forgotten how to do it and that I couldn't make sense of it.  After dinner, as we cuddled on the bed for a few minutes, we discussed the hefty and complex process of tomato-slicing.  Never expressing alarm at the strangeness of it, we compared words, thoughts, notes, and visual images.  The muddle of it all was enormous.  Horizontal?  Perpendicular?  Core?  Top or bottom?  Concepts were mazes.  Words were devoid of common meanings.  For me.  I tried to understand.  We chuckled some and touched some — gentle kisses and loose, tender hugs.  Resting, I continued to sort it out.  I was determined not to let one mistaken tomato cause irreparable harm — to either my psyche, or my skill, or my strong sense of self, or my desire and taste for tomatoes.

The next evening, I tackled another perfect-looking tomato.  I reviewed my foggy mental notes, fairly certain of my internal directions.  I'd be a liar to say it was all clearly in focus; it was not.  However, I thought I'd retained a couple of key cues to help me through the effort.  In a moment, the deed was done.  Correctly sliced tomatoes!  And, yet another odd episode in cognitive troubles overcome.

What have I learned from this and similar episodes of cognitive confusion over several years of illness?  First, don't dwell on the “used to be.”  You know the pattern: “It used to be so easy to slice a tomato.”  (True.);  or, “I used to be able to teach 100s of college students highly complicated and detailed ideas with a continually sharp, alert mind — and now I can't figure out how to slice a damn tomato.”  (Also true.); or, “I used to be able to calculate long-division problems in my mind in a matter of seconds — and now I can't  comprehend my child's simple addition homework.”  (First part, not true; 2nd part, true.)  Be gentle on yourself.  Try to avoid and diminish repeated whippings of self by the “used to be.”  These whippings result in sadness and depression.  Live in and cope with th

e present, difficult as that may be.

Second, give some valiant, ever-so-slow attempts to wade through mental muddles — even when it all seems a foggy, contorted, and distorted puzzle.  Try to sort through the mucky maze of confusion regardless of the particular scenario: addition and subtraction of checkbook; use of written or spoken language;  long-familiar operation of washing machine; child's questions; or, recipe instructions.  I've been so sick and muddled as to not comprehend simple English.  (There have been hideous moments of common written and spoken works coming to my brain as unintelligible gibberish.)  Despite the surreal and frustrating incidents of intellectual mishaps, it's important to fight the fog and conquer some basic dilemmas in cognitive dysfunction.  However, it's equally important to recognize that if the intellectual task is clearly unmanageable at present, it's best to postpone it till a “better” time or to seek assistance.  Don't be unduly harsh on yourself.  Let it go.  Find a balance.

On some level, it's useful to have a motto, or mantra, or prayer to get through the worst pain and worst cognitive confusion.  These brief words are repeated often — usually unspoken, but sometimes aloud.  One I often repeat is: “This too shall pass.” (Clearly, not an original!)  Another, less eloquent, is: “Dear God, please knock me over the head so I can sleep through this pain.”  Another, specific to mental muddles, is: “So what?  I can get through this.”  (Stress on “can.”)  Or, when less is polite: “F— it.  I can get through this.”  Repetition of a few words seems to alter focus, ease pain, reinforce inner strength and tenacity, and reduce unhelpful fretting.  Sadly, it cannot restore intellectual acuity or diminish sickness.  However, one avoids unnecessary emotional distress for self and others.  You utilize these words to get in control of a rotten situation, rather than let it control you.  You move on.  Basically, your mantra, motto, or prayer gets you through the worst of sickness and the mucky mess of mental mix-ups.  It provides an acceptance that this is life today. Let me deal with it.

The case of the mistaken tomato reminds me once again of the difficulties of living with CFIDS.  At the same time, it illustrates some methods of coping with this poorly-understood debilitating illness. One needs to take charge of responses to the varied symptoms.  This is a slow, never-ending process.  By the way, although that tomato was bizarrely sliced, at least it wasn't mistaken for an orange.  I am thankful for that!

Published, The National Link, Fall 1994, pp. 4-5.  (Also, reprinted in Expressions: A Magazine of Literature and Art by People with Disabilities and On-Going Health Problems, #5, Summer 1995, St. Paul, MN 55116-0294; Network, Summer 1995, Hartford, CT; and Chameleon, September 1995, Australia.)

About the author: Susan Dion, Ph.D., continues to struggle with CFIDS and FMS.  She has been ill since a sudden and acute onset in March 1989.  In an earlier phase of life, she was a dynamic college history professor and administrator.   She continues to try to write and participate in family life.  She has been a patient in research studies at the National Institutes of Health, Bethesda, MD.

“I have come to the frightening conclusion that I am the decisive element.
It is my personal approach that creates the climate.
It is my daily mood that makes the weather.
I possess tremendous power to make life miserable or joyous.
I can be a tool of torture or an instrument of inspiration,
I can humiliate or humor, hurt or heal.
In all situations, it is my response that

decides whether a crisis is escalated or de-escalated,
and a person humanized or de-humanized.

If we treat people as they are, we make them worse.
If we treat people as they ought to be, we help them
become what they are capable of becoming.”
-GOETHE

Thanks to the Community Education Department of Robert Wood Johnson University Hospital for sharing this piece.