|The Case of the Mistaken Tomato *||Next Time Someone Asks That Question ... *|
|Welcome to Holland !!||E I Choices|
|The Decisive Element *||Skeptical of Skeptics - by an M.D. with CFS|
|ANYWAY *||The Rules on Being Human|
|Positive Sayings||Hi, My Name is Fibromyalgia|
|Being Normal- a prize winning poem||The Second Ten Commandments|
|Have a Great Day|
* appeared in the NJCFSA newsletter
The Case of the Mistaken Tomato
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 the 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.
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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, disgusting, 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.
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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."
Thanks to the Community Education Department of Robert Wood Johnson
University Hospital for sharing this piece.
Many thanks to Jacui Niederle, co-leader of Middlesex Co.
Chapter for sharing this wonderful piece with us.
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Q: What is it that you do?
A: I work a 24-hour, seven days a week job that I've had for 4 years without vacation time.
Q: What kind of crazy job is that?
A: It does sound crazy, and especially because IT chose ME. It is the hardest work I have ever done. I don't know day to day what the job requirements will be. And I don't have the choice to quit it, as much as I'd like to.
Q: Why can't you leave it?
A: My work is to live with and heal from a very severe, chronic illness that has been around a long time but it still is not well understood. It's like having your own business in that only one person - me - knows as much about my body and what I should do each day to encourage it to do better.
Q: I never thought of living with a chronic illness as work.
Do you miss traditional work?
A: There's nothing I'd love more than to get well and work in a normal job. But as long as it is out of the question, I have to do the best I can with my current work.
Q: Do you at least get benefits from your work?
A: Not tangible ones like paid holidays, insurance or a savings plan, and I could really use one of those. But I do get a lot of skill-building, like people in traditional work.
Q: What skills could being chronically ill give you?
A: Patience. Assertiveness. Developing boundaries. Humor. Asking for help. Setting priorities. Letting go of what I can't control. Listening. Better communication. Courage. Tackling impossible challenges. Creativity. Resourcefulness. Imagination. Making do. Stretching limited resources. Flexibility. Pacing. Trusting myself. Trusting others.
Q: (Speechless. Wanders off thoughtfully.)
Many thanks to Judy Kruger for creating
and sharing this original piece!
Try homeopathy and eliminate grains
Too many choices, I'm going insane.
Chiropractic treatments and Chelation I.V.'s
Organic Foods and Mega doses of C
Acupuncture therapy and meditation tapes
Another new hope or another mistake
Try macrobiotics and eliminate meat
Choose only healing foods to eat
While Sauna detox often works
Sometimes programs make you worse
Wear only cotton with no perma press
Easier by far is not getting dressed
Constant searching for answers and clues
Suggestions from everyone on what to do
Try it all, I've heard it said
Think I'd rather stay in bed
Another day and another choice
Inside my head I hear this voice
Stop the chatter the message implies
Let the answer come from inside
Trust your instincts, trust your heart
Gather the strength that they impart
Make decisions, right or wrong
Nothing is hopeless, till choices are gone
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Skepticism permeates our profession. It is
ingrained during medical training and reinforced by professional experience.
Who among us has not repeatedly seen claims for fourth-generation drugs
with no side effects, new operations that yield glowing results with minimal
complications, or the latest infallible, high-tech diagnostic procedure
. . . only to discover months or years later that these claims missed the
truth by miles. Small wonder most of us are skeptics. To be
skeptical is to be detached, rational, and objective. Skepticism
is widely perceived as the prudent, conservative way to deal with ambiguous
situations -- times when even experts are confounded. Healthy skepticism
is the "in" attitude for intelligent, discriminating physicians.
But healthy for whom?
Four years ago I was diagnosed as having chronic fatigue syndrome (CFS). The experience has given me a new perspective of my profession, one that is not always flattering. In one early report, the average CFS patient had previously consulted 16 different physicians. Most were told that they were in perfect health, that they were depressed, or that they were under too much stress. Many were sent to psychiatrists. The situation is better today, but not by much.
Though many CFS patients are depressed (small wonder), CFS in not depression. Antidepressants may treat that depression, but CFS persists. Likewise, therapists may support but not cure; some patients find their psychiatrist is the only one who believes they are physically ill. Careful scrutiny with an open mind reveals that the fit of CFS symptoms into traditional psychiatric molds is uncomfortable at best.
Is CFS a real disease? I believe it is, but I cannot settle that here. I would only plant this seed in the mind of skeptics: What if you are wrong? What are the consequences for your patients?
Imagine for a moment that you are the Subjective patient, not the Objective physician. You catch "a cold" and thereafter the quality of your life is indelibly altered. You can't think clearly . . . sometimes it's all you can do to read the newspaper or to follow the plot of a television program. Jet lag without end. You inch along the fog-shrouded precipice of patient care, where once you walked with confidence. Myalgias wander about your body with no apparent pattern. Symptoms come and go, wax and wane. What is true today may be partially true tomorrow or totally false next week. You know that sounds flaky, but, dammit, it's happening to you.
You are exhausted, yet you can sleep only two or three hours a night. You were a jogger who ran three miles regularly; now a walk around the block depletes your stamina. Strenuous exercise precipitates relapses that last weeks. There is nothing in your experience in medical school, residency, or practice with its grueling hours and sleep deprivation that even approaches the fatigue you feel with this illness. "Fatigue" is the most pathetically inadequate term.
You too might wonder about some of your symptoms had you not talked to other patients with similar experiences . . . or talked with physicians who have seen hundreds of similar cases. With experience, a pattern emerges: the bizarre and implausible become commonplace and credible. "Armchair analysis" of CFS understandably generates doubt; to comprehend this illness, one must heed Osler's advice to study the patient firsthand: "Learning medicine without books is like going to sea without charts. Learning medicine without patients is like not going to sea at all." I have only skimmed the surface of the myriad symptoms CFS produces -- persistent headache, sore throat, a variety of neurological symptoms, adenopathy -- but you are, I hope, beginning to get the picture.
Iron-man determination to be tough is self-destructive: you merely become Sinking Sisyphus. Perhaps you take a few weeks off; rest helps. Though you improve, you are still light years from your former self.
By now you are literally disabled, but the bills still role roll in. Will you quality for disability if your physicians determine that your only problem is "too much stress"? Maybe you will be lucky enough to find a doctor who can properly diagnose and treat you, and maybe you have disability insurance with a competent company that has informed consultants. Maybe.
I have talked with scores of fellow patients who went to our profession for help, but who came away humiliated, angry, and afraid. Their bodies told them they were physically ill, but the psycho speculation of their physicians was only frightening and infuriating -- not reassuring. It told them their doctors had little understanding of the real problem. Many patients had depleted themselves financially, dragging in vain through expensive series of tests and consultants as their lives crumbled around them. They had lost careers, homes, families, in addition to the loss of stamina and cognitive skills. There is nothing that you hold dear that this illness cannot take from you. Nothing.
Are we to believe that just because symptoms are strange and unfamiliar they cannot be real? Are we to assume that our laboratory tests are capable of screening for new diseases as well as old? Distrust of new ideas is as old as humankind; so are the harmful consequences of that distrust. The doctrines of Lister and Semmelweis were not generally accepted for more than 50 years. I shudder to think of the death and misery caused by the skeptics during that half-century.
I have been very lucky. After being ill for a year and a half, I began painfully slow improvement. Despite repeated setbacks, I have progressed to the point where I am no longer continually miserable. My career, however, is but a faint memory. There is little demand for absentminded surgeons, even if I had the stamina. Too, I harbor the lingering fear that I might transmit my illness to a patient. The satisfactions of the operating room are a thing of the past. So I wait. I hope. I pray.
My activities are narrowly circumscribed. I can read again, but I avoid difficult material. I can handle light exercise, but the backpacking that was my previous delight is evanescent fantasy. I swallow my pills, follow my diet. (Treatment is palliative and based on trial-and-error application of anecdotal evidence, but it helps most patients. I enjoy passable existence, not a miasma of misery. I lack the strength to wait years for controlled studies; life is short, science is slow.) I try to educate other patients and "convert" other physicians. Sometimes I succeed.
I have survived because of caring friends and fellow patients and because of a few committed physicians who kept their minds open. They truly listened. They thought long and hard. Many were and still are ridiculed for taking CFS seriously.
Internists have long prided themselves on incisive intellects and superior diagnostic skills. It is time for those skills to focus on the complex subtleties of this illness. I ask for your patience. CFS is sufficient indignity by itself; do not compound it. It takes considerable time and infinite patience to take an accurate history from a frail patient with impaired memory and concentration, especially if that history is long and complex. But if you take that time, you can do a world of good. CFS may frustrate you, but it is equally fascinating and rewarding. Resist the temptation of hurried, superficial evaluation. This is no illness for cookbook doctors. It is a disease for medical intellectuals with supple and open minds.
Thomas L. English, MD
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Life is what happens while you are waiting for a cure.
My message is peace of mind,
not curing cancer, blindness, or paraplegia ...
Anyone who is willing to work at it can achieve it.
-Bernie S. Siegel
Life has handed me a portion I did not choose
and do not welcome,
but I can chose my own response.
-Sefra Kobrin Pitzele in Meditations for the Chronically Ill, May 4
The last of the human freedoms - to choose
one's attitude in any given set of circumstances ...
-Victor Frank, Nazi Death Camp Survivor
I complained because I had no shoes
until I met a man who had no feet.
Everything has its wonders, even darkness and silence,
and I learn, whatever state I may be in,
therein to be content.
Self-pity is our worst enemy and if we yield to it,
we can never do anything wise in this world.
Think of the beauty still left around you and be happy.
Happiness should not depend on physical wellness.
To live happily is an inward power of the soul.
They have passed from the defeat of incurable illness
to an inner tranquility that is entirely independent of any outside condition.
Beside such a triumph, all the achievements and possessions of a lifetime
pale to insignificance.
For Today, OA, Inc., Torrance, CA, 1982, page 111.
What ought one to say then as each hardship comes?
I was practicing for this, I was training for this.
Humor is an affirmation of dignity, a declaration of man's superiority
to all that befalls him.
- Romain Gary
Natural forces within us are the true healers of disease.
-Hippocrates (of the Hippocratic oath taken by doctors)
They are ill discoverers that think there is no land,
when they see nothing but sea.
You gain strength, courage, and confidence
by every experience in which you really stop
to look fear in the face.
You are able to say to yourself,
"I lived through this horror.
I can take the next thing that comes along."
The lowest ebb is the turn of the tide.
-Henry Wadsworth Longfellow
Adversity has the effect of eliciting talents
which in prosperous circumstances
would have lain dormant.
To gain that which is worth having,
it may be necessary to lose everything else.
Once you have experienced the seriousness of your loss
you will be able to experience the wonder of being alive.
There is a certain state of health
that does not allow us to understand everything;
and perhaps illness shuts us off from certain truths;
but health shuts us off just as effectively from others.
He who attempts to resist the wave is swept away,
but he who bends before it abides.
God, grant me the serenity
To accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.
-The Serenity Prayer
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What would I give to be normal
The question, itself, wasn't new
Quick to mind came all the things
I could now no longer do
The list was long, and the list was sad
Of that I was painfully sure
I could sit a while, with my "losses list"
And continually add to it more
I returned my thoughts to the question
What did it really mean
And decided the answer was simpler
Than at first, to me, it seemed
I faced my well intended friend
My response, I knew, was true
In every way that matters the most
I'm just as normal as you
My world is restricted and narrow
Compared to where you reside
But it doesn't mean my spirit or soul
Need lessen in worth or size
No matter how wakened my body
I'll persist at any length
Not to allow my frailties
To negate my inner strengths
I wish, I hope, I dream, I pray
Quite often, I sit and cry
As long as there's laughter and love in my life
I'll know I'll continue to try
As children of our creator
We're equally valued the same
We're not defined by health or wealth
Position, power, or fame
I may never be fully, physically well
While here upon our earth
But normal or not, I'll do my best
Not to let it determine my worth
by Saundra Sharp
140 Jessie Stoudemeyer Rd.
Little Mountain, SC 29075
This poem won third place in the Toxic Times Literary contest. Saundra is homebound with MCS. If you benefited from her poem, you can drop her a note acknowledging her fine work and wishing her well. You may or may not get an answer. Hope you understand.
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Hi. . .My Name is Fibromyalgia, and I'm an Invisible Chronic Illness.
I am now velcroed to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyhow I please. I can cause severe pain or, if I'm in a good mood, I can just cause you to ache all over. Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh, yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away, too. You didn't ask for me. I chose you for various reasons: That virus you had that you never recovered from, or that car accident, or maybe it was the years of abuse and trauma. Well, anyway, I'm here to stay! I hear you're going to see a doctor who can "get rid" of me. I'm rolling on the floor, laughing. Just try. You will have to go to many, many doctors until you find one who even BELIEVES I EXIST.
You will be put on pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given a TENs unit, get massaged, told if you just sleep and exercise more I will go away, told to think positive, poked, prodded, and MOST OF ALL, laughed at when you tell the doctor I am debilitating. Your family, friends and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a real disease. Some of them will say things like "Oh, you are just having a bad day" or "Well, remember, you can't do the things you use to do 20 YEARS ago," not hearing that you said 20 DAYS ago. Some will just start talking behind your back, while you slowly feel that you are losing your dignity trying to make them understand, especially when you are in the middle of a conversation with a "Normal" person, and can't remember what you were going to say next!
Eventually, most of them will be like all the doctors who say "It's All In Your Head."
In closing, (I was hoping that I kept this part a secret), but I guess you already found out. . .
The ONLY place you will get any support and understanding in dealing with me is with Other People With Fibromyalgia.
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2. Thou Shall not be fearful, for most of the
things we fear never come to pass.
3. Thou shall not cross bridges before you come
to them, for no one yet has succeeded in
4. Thou shall face each problem as it comes.
You can only handle one at a time anyway.
5. Thou shall not take problems to bed with you,
for they make poor bedfellows.
6. Thou shall not borrow other people's problems.
They can better care for them than you can.
7. Thou shall not try to relive yesterday for good or ill,
it is forever gone. Concentrate on what is happening
in your life and be happy now!
8. Thou shall be a good listener, for only when you
listen do you hear ideas different from your own.
It is hard to learn something new when you are
talking, and some people do know more than you do.
9. Thou shall not become "bogged down" by
frustration, for 90% of it is rooted in self-pity
and will only interfere with positive action.
10. Thou shall count thy blessings, never over
looking the small ones, for a lot of small
blessings add up to a big one.
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My job is to choose what kind of day I am going to have.
Today I can complain because the weather is rainy or ... I can be thankful
that the grass is getting watered for free.
Today I can feel sad that I don't have more money or ... I can be glad
my finances encourage me to plan my purchases wisely and guide me away from
Today I can grumble about my health or ... I can rejoice that I am alive.
Today I can lament over all that my parents didn't give me when I was
up or ... I can feel grateful that they allowed me to be born.
Today I can cry because roses have thorns or ...I can celebrate that
Today I can mourn my lack of friends or ... I can excitedly embark
quest to discover new relationships.
Today I can whine because I have to go to work or ... I can shout
because I have a job to do.
Today I can complain because I have to go to school or eagerly open
and fill it with rich new tidbits of knowledge.
Today I can murmur dejectedly because I have to do housework or I can
appreciate that I have a place to call home.
Today stretches ahead of me, waiting to be shaped. And here I am, the
sculptor who gets to do the shaping.
What today will be like is up to me. I get to choose what kind of day
Have a GREAT DAY ... unless you have other plans.
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