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Shelley Nixon is a 24-year old student at Cabrini College in Radnor, PA, studying Human Services with her goal being to counsel children with disabilities. Shelly has quadraplegic cerebral palsy. She serves on Cabrini's Disability Awareness Committee, is a board member of AbleArts (a theater group for people with and without disabilities), is a member of the Federal Communication Commission's Consumer/Disability Telecommunications Advisory Committee, and serves on a subcommittee for Access by People with Disabilities. The following poems and more can be found in her autobiography, From Where I Sit - Making My Way With Cerebral Palsy (Scholastic, 1999). Shelley loves people, music, movies, snow skiing -- and is learning to scuba dive.
Lessons Learned
I cannot walk; I need my wheelchair.
But I met a person whose memory is no longer
there.
She can walk but she doesn’t know her name.
Suddenly walking doesn’t mean the same.
It’s all from your point of view.
My speech is slow and I stumble some.
But I met a man whose speech he has none.
A car wreck robbed him of a voice for his
thoughts.
To him my slowness means naught.
It’s all from your point of view.
I cannot write, so I must type.
But typing can serve my needs.
I met a doctor, just graduated, who can no
longer type or read.
A brain aneurysm pushed "erase" and his
words are mixed and tossed.
Suddenly the inability to write doesn’t seem such
a loss.
It’s all from your point of view.
A doctor, a lawyer, an engineer.
A dress designer, a student, a young mother . . .
they are all there in the rehab hospital.
All fighting back from a loss in life’s lotteries.
What you have,
What you value,
What you
can do.
It’s all from your point of view.
Shelley Nixon
© Scholastic, 1999
Independence
I I love to be independent.
N Nevertheless, I sometimes have to ask for help.
D
During my life as a handicapped girl, independence
has become very
important to me.
E Even the smallest act of independence is precious to me.
P
Pretty often, ignorant people take away my feelings of
independence by
assuming I can’t talk or understand.
E
Eventually, it is up to me to prove to them that I
have capabilities
N Nothing deters me from my quest for independence.
D
Decision-making is hard for me because so many
people make
decisions for me about my life;
other teenagers
don’t face that.
E Egos
are easily destroyed when you are handicapped
because you have
to ask for help for very personal things.
N
Non-handicapped people often don’t think of inviting
me places, which
would let me enjoy more independence from my family.
C
Cerebral Palsy makes me vulnerable in my friendships
because I’m
always afraid they will leave me because
they would rather
have a friend that can do more.
E Everyone deserves independence.
Shelley Nixon
© Scholastic, 1999
Comrades in Battle
"Nothing is simple in a life" marked by disability
or measured by color of skin.
Each day we must get up and face battle again.
The ignorance of prejudice makes us "vulner-
able – open, like a wound."
We must fight the "idea of oneself" based on
what others assume.
"The humble and submissive place in society
allotted" our kind
Makes us cry, "Equality!" Our declaration of
Independence is unsigned.
We must do what "enables us to keep our self-
respect."
Not what is deemed by others to be politically
correct.
Are we "happy for battle?"
Absolutely NO!
But, "circumstances bring out our abilities"
And make us grow.
Shelley Nixon
© Scholastic, 1999
A Tree for Me
My cerebral palsy anchors me in so many ways.
It is the anchor that tugs and keeps me from
drifting toward my desires.
One of my dreams has always been to climb a
tree.
A simple wish, but one impossible.
So, at night the person I wish I could be directs
my dreams and allows me to soar in places
unknown:
I grasp at branches while my feet search and
scramble for footholds.
Higher and higher and higher.
Until I almost reach the sky!
I sit among the leaves.
They caress me.
Their touch is intimate and they murmur,
"You are free, free, free!"
The sturdy branches cradle me.
If I shed a tear it would careen downward,
skipping off leaves to a tiny muddy "plop"
below.
When I shed a tear now it mocks me as it
splatters on my tray.
Can’t there be a tree out there for me?
Shelley Nixon
© Scholastic, 1999
Paula Michal-Johnson, PhD
Now a mother of two active teenage girls, Dr. Michal-Johnson was diagnosed in 1995 with
Chronic Fatigue Syndrome. She returned to work as a health communication researcher and
teacher at Villanova in 1998. She is often reminding herself to be still, like the snail,
so the poetry muses can visit. She is a firm believer that her illness has been a great
teacher.
The Snail
There is no bus to catch, no timeclock to punch,
Only me to explore, only me to prepare for the next step.
The opportunity, a gift from my inner cells, collaborating
To relieve me of my worldly ball and chain
It had grown heavy, predictable, embattled.
I tired of wearing armor, watching every step.
There are those who see the slowness of my movement
as reason to rue this pause. They sigh and say with amazement
"How can you accept this with such grace?" "It must be hard for you
always a mover and shaker, to rest. I would just be climbing the walls."
Inside my heart enjoys the thought of them climbing walls, while I sit quietly allowing
the sun to warm my respite from a world preoccupied with results.
Paula Michal-Johnson, PhD, 1996
Trena LaVerne Pelham, MD is a Behavioral-Developmental Pediatrician who was diagnosed with MS in 1985. Although she retired from clinical practice in 1997 secondary to disability, Dr. Pelham is anything but retired. She is a member of the Board of Trustees of the Greater Delaware Valley Chapter of the MS Society. Additionally, she serves as a pediatric consultant to the Philadelphia Health Management Corporation, Health Care for the Homeless and is a member of a number of professional and community boards. Dr. Pelham has won several awards for her poetry.
MS GREETING
Good Morning. How are you?
I'm fine, thank you.
I think that I am, but you see . . .
It is hard to remember what feeling fine was like.
You see I feel better than I have,
but not as well as I used to,
I think I'm OK though.
I could feel worse than I do,
but
I'm not as well as I should be Feeling
OK though.
I'm fine thank you.
That is . . . I think I am, but you see . . .
it is hard to remember what feeling fine was like
Though,
How are you?
Trena LaVerne Pelham, MD, 1989 ©
THANKFUL DESPITE MULTIPLE SCLEROSIS
When I look at the ceiling without swirling due to vertigo,
I am thankful for the stillness.
When Iook at a view unobstructed by scotoma,
I am thankful for the vision.
When my facial muscles are not twitching due to myokymia,
I am thankful for the calm.
When my face is not pained by Tic Douloureaux,
I am thankful for the tranquility.
When I do not hear the stinging ring of tinnitus,
I am thankful for the silence.
When I play the guitar without parathesia,
I am thankful for the touch.
When I write without painful spasms,
I am thankful for the dexterity.
When I walk without stumbling,
I am thankful for the stability.
When I am ambulatory not incapacitated by paresis,
I am thankful for the strength.
When I have a clean, dry day without elimination
dysfunction,
I am thankful for the dignity.
When I speak with words not lost in a maze,
I am thankful for the fluency.
When I accomplish, not thwarted by fatigue,
I am thankful for the energy.
When I have a remission from an exacerbation,
I am thankful
that despite multiple sclerosis,
I can be thankful.
Trena LaVerne Pelham, MD, 1997
Alicia Conill, MD
Alicia M. Conill, M.D., Medical Director and CEO of the Conill Institute, is a physician living with multiple sclerosis. She is a Clinical Associate Professor at the University of Pennsylvania School of Medicine and the former Senior Medical Director for Quality Care at the University of Pennsylvania Health System.In recognition of her ongoing work with the chronically ill, Dr. Conill was winner of the 1997 National Multiple Sclerosis Society's Achievement Award and runner-up for the 1997 Health Care Heroes award. A native of Cuba, Dr. Conill speaks fluent Spanish and has participated in numerous community health fairs in Hispanic areas of Philadelphia. She is on the Professional Advisory Committee (PAC) and Board of Trustees of the National Multiple Sclerosis Society. She has published her insights and commentaries in several articles.
AFRICAN DRUMS
African drums, a slow, steady beat . . .
faster, faster, faster
STOP.
Silence.
Should I move to the rhythm
or lie still as I have been told to do?
The drums again, slow, steady,
faster, faster, faster
STOP
Silence.
Are they outside dancing,
dressed in brightly colored hues and rich textures,
with feathers of eagles and painted faces?
Perhaps a healing ritual
or a form of prayer and
sacred celebration?
The drums again, slow, steady . . .
the sound of metal magnets
circling, attracting, repelling,
taking snapshots of my brain.
Faster, faster, faster
STOP.
Silence.
The intercom clicks on
The MRI technician's voice fills the cold room . . .
Hold your breath, don't move.
There is no dance here and there are no
feathers,
The costumes are all white.
I close my eyes and
the drums begin again.
Slow, steady
faster, faster, faster
STOP.
Silence.
I pray for the healing ritual to begin.
Alicia Conill, MD
Published in The Journal of General Internal Medicine
Reprinted by permission of Blackwell Science, Inc.
Cling, clang, clunk
rubber squeaks on linoleum tile
cold metal grips my hands
Clench, grab, squeeze
Cane
Walker
crutches
wheelchair
motorized
or regular
shower seats
grab bars
oh no . . .
a commode
The language and sounds
of need
the armor of disability
Loud, metallic, sterile
Cling, clank, clunk, squeak
The feel of metal
hard, unyielding
when you want to melt into communality
when you long for anonymity
you hold your breath –
maybe none will hear you
or be disturbed by the intrusion
of Cling, Clang, Clunk, Squeak
The heads all turn
The noises become deafening
sorry stares
scary armor
of Cling, Clang, Clunk, Squeak
Alicia Conill, MD
The five year old boy
swings the metal around in a circle
and points it like a gun-
his father explains gently
that he should put the crutch down
because it is not a toy.
His blue eyes full of innocence
look puzzled for he really feels
it should be a toy.
The five year old girl
stares intently at the crutches
and suggests I could use them
as coat or umbrella racks
or put a flower pot in the metal rings
that hold up my arms.
Her brown eyes full of innocence
look puzzled when her mother explains
that I need these coat racks to help me walk.
Neither child understands-
The little girl wishes that I
get better soon.
The little boy wants the crutch
to be a toy.
I want to see the day when
I give one to the little boy so he can
throw it in his toy box
and the other to the little girl so she can
plant a flower pot in the metal ring.
Alicia Conill, MD
I cannot remember the feeling of
running to catch the train
or dancing in a disco to pulsing, colored lights
or running up the steps of the Philadelphia Art museum
I cannot remember being acrobatic in love making
or bringing you breakfast in bed
carefully balanced on a pale pink linen covered tray
with a single white rose
These have been taken from us
unfairly,
sometimes slowly, insistently
like a thief in the night
Other times without warning
sudden, unexpected
an earthquake shaking our foundation
There are certain things you just cannot do
when your legs don’t work
no adaptation,
acquiescence,
ambition,
accommodation,
acceptance,
anger
can alter that
who ever said things would be fair?
Alicia Conill, MD
Candace R. Desrosiers
Candace is a devoted wife and mother of two, who has been diagnosed with Primary
Progressive MS since March of 1994. She has been writing poetry since high school and is
now in the process of writing a book about her life and experiences coping with MS. She
says that writing is not work to her, "the words just seem to flow onto the page once
I get started."
SOULMATE
He is the glue that holds together
the fractured pieces of my life.
He is the lifeblood that flows through
me and keeps me from strife.
When I am in pain,
he holds and kisses my hand.
When I have trouble walking,
he helps me to stand.
When my memory is Swiss cheese,
he fills in the blanks.
And when I have no energy,
he does the dishes without expecting
thanks.
He puts me on the couch to rest;
and then keeps the kids quiet-
Or at least he does his best!
When I am depressed, he lends an ear
and a shoulder to cry on.
He's always there with a joke or a pun.
He loves me despite all the habits
that
grate on his nerves.
He is my friend, my confidante,
my lover, my all.
He has been and always will be-
my soulmate.
Candace R. Desrosiers
THEY
I see their faces contorted
with giggles as they
Wrestle to the floor;
a mass of arms and legs
And I have to laugh.
I see them building rockets
and race cars,
Houses and garages;
flying to the moon and back
And I have to smile.
I hear them hurling insults
like dragons and trading
punches like mortal enemies;
then defend each other
vehemently against anyone
who would punish them.
Again I have to smile.
I feel them cover me and kiss me
on the cheek when I nod off on the
couch. I hear them say they'll
"play Nintendo quietly so you can
rest."
Again I smile as a tear escapes my
eye
for "they" are my children.
Candace R. Desrosiers
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AWAKE AGAIN
The house is filled with a
church-like quiet.
Once again I sit staring mindlessly at the T.V.
without really seeing what's happening on it.
The screen sheds the only light in the place.
The clock says three a.m., I should not be awake!
But my head is thumping like a huge bass drum
and both my arms are starting to go numb.
I pad across the carpet in my gown
and bare feet,
pour a glass of milk and rummage for something to eat.
I swallow some aspirin and reach for the chips;
and then think better of it.
Eating at this hour definitely will not help my diet.
And so...
I go back to the living room, climb into my seat;
too tired to be awake; too much pain to sleep!
Candace R. Desrosiers
THIEF
I am young, yet now I walk with a
cane.
I no longer live, as they say, in the fast lane.
Some days I drop things for no reason at all,
and trip over threads on the floor and I fall.
My memory has more holes than
a block of swiss cheese.
So I can no longer call up words
or thoughts with ease.
Many times I know exactly what to say.
But my brain and my tongue don't want to
work and play well together today.
Terrible fatigue.
My children say,"Mom, play ball with us ."
"I can't. I'm too tired."
They are disappointed but don't make a fuss.
Don't count me out yet. I'm not really done.
We have learned to compromise-we still have fun.
We play cards, Monopoly on Nintendo, or read;
No hand-eye coordination required!
The games we play still fill our needs.
So, you see, I'm not giving up without a fight.
MS will not take the simple joys from my life!
Candace R. Desrosiers
In Defiance
I'm really in here, can't you tell?
My look doesn't say it very well.
I hear, I see, I smell, I feel,
But can't lift the fork for my meal.
I'm stuck in here trying my best,
but my body says, "just have to rest."
"Come on, move, you lazy foot--
don't stop here, you'll grow a root."
I tell myself, "Move, you dope!"
My body laughs and chokes out "nope!"
Why can't you see I want to move,
just not enough gas to get in the groove?
You in the chair, get up and move!
Use what you have, before you lose
the gas that's needed to fuel the spark;
to talk, or blink, or try to bark.
I wish I could walk just one more block
where none would stare at me and take stock.
"Is that the two-step?" "Yes," I say;
"I hope that Parkinson's never comes your way."
Lynne Ruhling, RN
08/05/2003 10:37 AM