Simple Sicknesses

Tonight I pressed a cool washcloth to 3-year-old Julia’s forehead. Feverish glassy eyes winced beneath the perimeters of the cold, wet relief. “I love you,” I mouthed. I said and felt a prayer of gratitude. Julia smiled with great effort; gratitude in return. While sweeping the damp cool rag over chubby pink cheeks and sweltering forehead, I allowed myself to feel what it IS to be healthy. The ability to hold the washcloth in my hands, extensions of my able arms, connected to the rest of whole and healthy me. In the celebration and gratitude of being whole, I thought of the one who wasn’t. I grieved for my Mom’s limp hands, arms and body. I grieved my simple sicknesses; the times I had the flu. No damp rags, no mouthed words in the dark hours of night. How sad, how very tragic, how cruel, to not be able to care for your baby by your own hand.

I was never left wanting for care, but always left wanting for her care. Sometimes I wonder if I’ll ever stop grieving for what my Mom lost. But then where is the growth in that? Where is the honor? My Mom often wrote about what she could not do once plagued with ALS—of what was lost. As the survivor, as a whole daughter, and now whole mother, am I not obligated to write of the splendors, the miracles, and the mundane of motherhood? Washrags, holding babies and whispering my love and reassurances in the dark hours of the night. Tonight I am a whole and healthy mom; I used my hands, extensions of my able arms, and I pressed a washcloth to my baby’s feverish face, I told her I loved her (more than once) and said another silent prayer of gratitude.

Puttin' on the Ritz

*My mom and me on a Disneyland boat ride.

Raucous laughter emitted from chubby-cheeked little faces is often the remedy for excessive brooding. The relentless triple-digit heat this summer has proved to be a perfect breeding ground for grouchiness, laziness, and an overabundance of self-depreciating contemplation. Even more annoying, my self-flogging seems to default to an examination of all my maternal shortcomings. As if the heat alone isn’t enough of a drag--I have the added pleasure of my own inner attacks on my mothering skills?

It took at least two tickle sessions with all three of my daughters the other day, before I was released from the devious concern that I’ve ruined (or at least partially damaged) my girls’ psyche as a result of my recent poor attitude. I seem to have overlooked two vital pieces of information: children are resilient and the summer won’t last forever (thankfully). I’m guessing it probably takes more than summer doldrums to permanently damage their little spirits.

As the magic of toddler tickles extracted the poisonous “I’m-a-bad-mom” thoughts from my brain, fresh material made its way in. Fresh, but not new—memory. And not simply any memory; the only memory I have set to the tune of “Trying hard to look like Gary Cooper--super duper.”

There she was in a top hat and cane—glorious in her tights and heels. I remember sitting there on the family room floor in complete and utter awe. “Can you hold this play money for me?” she asked. As she bent down to hand me the paper money her blonde hair mingled with mine; for a brief moment we were two halves made whole. “You can throw it during the chorus,” she instructed, “at the part ‘trying hard to look like Gary Cooper—super duper,’ okay?” I nodded enthusiastically. Super duper. My five-year-old intuition instantly registered the importance of acting as administrator of the play money . I remember the dry, smooth feeling of that silly money in my palm—worth more at that moment in my small hands than any true dollar.

This exciting event taking place in our family room was in preparation for a potential dance teacher position at an elementary school. She selected the quirky Taco rendition of “Puttin’ on the Ritz”, accompanied by a simple choreographed dance routine. Simple her audition may have been, but to me it might has well have been a Broadway production. The electricity of anticipation filled the room as we waited for the click of the tape recorder—the paper money still safe in my grasp.

1-2-3, Synthesizers, Puttin’ on the Ritz and my mom spinning around our family room like a chorus-line Goddess. Then the crucial moment arrived: “Trying hard to look like Gary Cooper” and somewhere between super and duper, I flawlessly released the fake money. I watched the green and white paper cascade down to her black-patent-leather tap shoes. The money thrown, the song over, I experienced the feeling you get when a really fantastic amusement park ride is over—a lovely mix of satisfaction and sheer let down.

When the music stops, so does the memory. I take comfort, however, in knowing the song and memory can be replayed. Every good ride must come to an end, but it need not be forgotten. A totem of health and beauty, before the ravages of sickness and sadness, she dances in her top hat and tuxedo leotard. I keep her and the memory close -- I imagine it’s tucked in the same place I keep the healing laughter of my three young girls.

My mom didn’t get the job. Perhaps what she was really doing that day, beyond either of our comprehension, was auditioning for a memory, the particular use of which is perfect for hot days and when I feel like a lousy mom. In the now, at least five rounds into tickle time, I surround myself in the collective belly-laughs of my children. Any remaining sour spaces have been eradicated and I have become part of the chorus of laughter. Maybe I’m not such a bad mom after all.

Being a good mom doesn’t necessitate donning a top hat and tap shoes; all that’s required is a simple song and dance, and maybe…a bit of a tickle. Enjoy the ride.

A MESSAGE TO MY NEW CAREGIVERS

*I recently came across this picture of my mom in younger, healthier days--I love it.

Working with me

will be a great challenge for you—

one which I hope will enrich your lives.

Very much of the person “Laura”

is completely inaccessible

to everyone with whom I have contact

and because you never knew me

when I was healthy and could speak,

you will learn little about me

from the work you do with my body.

My poor, wasted body

is the container which holds

the numerous and complex parts of ME

but my body isn’t ME.

This is an important distinction

for you to make.

It’s important

because the frustrations I have

with my non-functioning body

often come across as

anger and frustration with my caregivers.

In other words,

don’t take my temper tantrums

personally.

It’s also important to remember

that my body isn’t ME

when it seems like

I’m not cooperating with you.

On some days

my body will flop over more than usual

which may cause you to think

I am purposely trying

to make your job more difficult.

My husband John and our health aide Cathie

sometimes feel that way,

particularly if it’s taking me

several minutes longer than usual

to do tasks

like brushing my teeth.

Because I can’t communicate well

when I’m away from my computer,

it is impossible for me

to explain to them

what the problem is

or how they can help me.

As their impatience and frustration grow,

I begin to whimper like a child

at my helplessness to change the situation.

For most of each day

I am not immersed in the emotional pain

of my physical weakness.

For most of each day

all the physical strength I need

is enough to push the tiny switch

which activates my computer.

When I sit here working on pieces like this,

I am barely aware

of my physical limitations.

I can express myself

clearly and intelligently,

I can make my thoughts or feelings

known to others,

I can cheat,

I can feel strong,

I have a sense of self-worth.

This is why helping me

will be such a challenge for you.

We are not hiring you

to watch me work on my computer;

we are hiring you to tend

to my bodily needs.

You will be helping me

during that small part of each day

when I take care of

the activities I hate doing

because they remind me of how much I’ve lost

due to this devastating illness.

In addition to the unhappiness

I always experience

when doing these things

will be the embarrassment I’ll feel

having you touch parts of my body

only my husband has touched up to now.

It doesn’t make me feel better to know

there are millions of quadriplegics

in the world

who must endure similar indignities.

This is MY body

and I want to take care of it!

It was hard enough for me

to fight my natural tendency to me modest

when John took over responsibility

for my personal hygiene.

I had to let go of

my modesty,

my privacy

and my independence.

I had no choice back then

and I have no choice now

about letting other people

do these things

because I can’t.

I must accept someone’s help

with the needs of my body

whether I like it or not.

Through psychotherapy and my writing,

I have learned some amazing things

during the six years of my illness.

My greatest revelations

have always come

after I’ve gone through

major emotional crises

brought about by changes in my life.

I am learning illuminating things

about God, myself

and what is most important in life.

I am being spiritually awakened

by my suffering

because I CHOOSE learning

even when it is painful

instead of shutting myself down

and waiting to die.

Your time working with me

will teach me things

God wants me to know

IF I choose to openly receive them.

In a little different way,

you are being given an opportunity to learn

from the experience of helping me.

I hope we all ace this course.

While you are here,

I will whimper and cry a lot,

I will throw fits,

I will frustrate you.

Yet if you can be patient

and understanding of my weaknesses,

perhaps you will begin to see my strengths.

We can become each other’s teachers,

guiding one another to new understandings

about God, ourselves

and what is most important in life.

In this way

I will become YOUR caregiver,

helping your spirit

as you are helping my body.

Looking at your presence in my life

from this perspective,

I can more easily accept

the role you will play in it.

I can see

that I have a challenging job

ahead of me too.

but I bet we will ace this course.

By Laura Schiller

June 1, 1990

Fate In A Lovely Shade of Gray

Erin,

I am very impressed with your science fiction story and know I couldn’t have written a story as well developed and focused as yours is when I was your age. You grabbed my attention right away with the time travel theme and kept it by staying focused on the main character’s direct experiences during the assassins’ successful attempts to kill famous people. You never wandered off the subject by having him explore other events taking place during each time period.

I think the introduction of Fate to the story was brilliant. Fate always is there whether or not we understand or accept it. Having Fate wink at the main character at the end was the perfect ironic conclusion. I loved it and would like to hear it again!

I can help you correct it line by line the way I used to if you want. I won’t try to change your story.

I’d like you to make noodles romanoff @5:45. Okay?

Dear Mom,

My fate is to be a writer. Could you have known this? Could you have known this when referring back to my story about the time-traveler and his run in with Fate? Could you have known it when you wrote “Fate always is there whether or not we understand or accept it?” I’ve spent far too much time in my life asking black and white questions like this only to discover the answers are gray. In my mind you live in a beautiful shade of gray where words and ideas are constantly blurring and taking different form to fit the moment.

Formerly, not only did I refuse to accept gray answers, they terrified me. Now I seek comfort in gray. I’ve found that it’s in the blurry places where the greatest possibilities blossom and grow. Finding this note from you in my folder of personal letters brings me comfort—soft gray comfort. If I looked at your words in black and white, I would not see them beyond face value. I would lack the ability to internalize a very important self-discovery. I wouldn’t have realized that my fate is sealed.

Of course I’ve always know from the time I was a small child that I loved to write. I have notebooks full of quirky characters, goofy plot lines, and even a science fiction story where my protagonist attempts to unlock the mysteries of a personified version of “Fate.” College-ruled-paper pages full of barely legible, insanely horrible grammar and spelling have waited years to not merely be acknowledged, so much as to be accepted as evidence of my fate. Fate always is there whether or not we understand or accept it.

You accepted my fate—my gift. You wrapped it in gray while I still clung to black and white. When all throughout my school years I circulated through one blasé teacher and instructor after another, my writing not so much berated by them as ignored or cast aside as mediocre (a much worse fate for a writer, believe me), you were my steadfast encouragement. I remember as a young girl, in my teens and tweens, sitting by your side. You in your recliner—the sick chair, and me in an uncomfortable dining-room chair—the petulant-child chair.

On rare occasion you and I would delight in sharing one of my literary creations, but mostly (and sadly) I recall complaining relentlessly at having to endure your editing sessions and commentary. The computer you so painstakingly used to communicate with was a menacing time-sucker that I became increasingly resentful toward. Oh but if I could turn back time … I would gladly sit by your side for hours, days, and weeks, sucking up every edit, suggestion, and comment you had to offer—Fate is always there whether or not we understand or accept it.

When you passed, 18 years ago this month (so hard to believe) I tried to outrun, outsmart, and deny my fate. For years I swapped pen and paper for liquid insanity and oblivion making sure everything was black and white—mostly black. Any hope for creativity was blighted by too much untreated sorrow and resentment.

It took two years of being clean and free of resentment before I could even consider the possibility of allowing fate to catch up with me. Anyone (including me) who seriously believes they have a jump start on fate is a fool. My fate has, was, and always is—with me … whether I accept it or not. Putting pen to paper was just like riding a bike again, but accepting my ability to put pen to paper was more like breathing fresh air after years of living underground. A long, long, long time underground.

As liberating as it was to write again I was consumed with doubt and insecurity. As fate would have it, however, someone who reminds me a little of you, someone warm, encouraging, and convincing looked me straight in the eye and told me (in her unmistakable Kentucky accent), “Honey, you are a writer!” I began to believe. I began to accept. I began to slip into the gray.

Since then days and years have passed. I’ve sat beside others who have offered edits and commentary on my writing. I’m grateful to each and every one of them. They have continued to be warm, encouraging and convincing. I no longer try to outsmart or outquestion my fate. Sometimes I still regret not having spent more time with you in the dining-room chair, saddened by all I could have learned, but then I remember—it’s not all black and white. What you gave me before you left was priceless and invaluable. You taught me how to not only see, but to live in gray. Fate always is there whether or not we understand or accept it.

In The Eye of The Storm

It’s scary

how some of us discover

we’re alone.

Lorna says

most people make that discovery

when they are in their forties

so it must sometimes coincide

with the experience of

the so-called “mid-life crisis.”

But I also think it is possible

to realize that fact

when a person is younger than forty

and it is likewise possible

that a person could live a lifetime

without ever learning

that he or she is alone.

By “alone” I mean

finding out you are

a completely separate entity

from everyone you know and love,

that no one will experience life

in exactly the same way you do,

that no one can truly understand your pain,

and that life will go on

virtually without change

whether or not you are around.

I plunged into this ice cold realization

at the age of 35

when I learned I had

an incurable illness.

In the months immediately following

this realization,

I spent every waking minute

thinking about and fearing my aloneness.

When we went on family outings,

I’d look at the houses we passed

and think,

life goes on in these homes

just as it always has.

In them are families

going about their regular business—

eating, sleeping, going to school or work,

watching TV, reading books, cleaning house—

as if nothing has changed.

How can this be

when the structure of my life

is crumbling into ruin around me?

It must mean

that my problems and I are insignificant

and I am truly alone

in this experience!

During that same period of time,

I would lie on my bed in the afternoon,

not resting,

but probing my conscious mind

in a frenzied effort

to find ways out

of my predicament.

My eyes never fixed

on features of the room

or on how the light

streaming through the window

struck the furniture in the room.

Instead,

they darted back and forth feverishly

in a desperate attempt

to escape from

a very tricky, very lonely maze.

None of my mental pacing helped

because I was seeking a cure

for the aloneness I felt

outside myself

rather than from inside myself

where the answer waited for me

to discover it.

Time, Lorna’s psychotherapy,

and my earnest desire

to find inner peace,

have brought me to the place

where I am right now.

It isn’t a joyful place

(because I never would have chosen

to have the experience of this illness)

but it is a place of peace

like that which is found

in the center or “eye” of a hurricane.

Whenever I stop thrashing

at the raging hurricane outside myself,

I soar like a seabird

over the ocean far below me.

I am in the eye of the storm

and I find healing in the quiet there.

While I know God is with me

at all times,

I only FEEL his presence

when I enter the eye.

I wish I could always remain

in this gentle, peaceful place

where the pain of my loss

doesn’t hurt so much.

But I am human

and, therefore, am very attached

to the world.

I can remain in the eye of the storm

only so long as

I allow my conscious mind

with its worldly concerns

to rest.

When I turn to the world,

which turns me away from God

and from the vast healing resources

within my unconscious mind,

I am thrown back into the hurricane again.

Now when I look back on

the early months of my illness,

I feel sympathetic ache

for my struggle to accept it.

It took a long time

for me to feel comfortable at all

with the knowledge

that as far as the world is concerned,

my illness and I are alone together.

But if I could get

just one point across

to the readers of this poem,

it would be

that given time, professional guidance,

and earnest desire

to find inner peace,

they can join me

in the place where I am now.

I am not alone here.

By, Laura Schiller

November 15, 1988