Why Open Another Box?

A unconditional conversation between mother and daughter...

Thursday, July 21, 2011


*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


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

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