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Kathleen A Keena

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Living Well with Multiple Sclerosis #1
by Kathleen A Keena   

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Category: 

Self-Help

Publisher:  seeking Type: 
Pages: 

25

Copyright:  October 1, 2004
Non-Fiction

This brief book offers personal narrative and poetry specifically about having the chronic illness, Multiple Sclerosis.

Borders
Kathy Keena

LIVING WELL WITH MULTIPLE SCLEROSIS
(A PERSONAL NARRATIVE)

PREFACE

CHAPTER ONE: DIAGNOSIS REALIZED

CHAPTER TWO: SYMPTOMS

CHAPTER THREE: LOSS

CHAPTER FOUR: MENTAL CONFUSION

CHAPTER FIVE: COMPROMISED JUDGEMENT

CHAPTER SIX: LIVING WELL WITH M.S.


PREFACE
It took me awhile to get it. I was diagnosed with M.S. following a balance problem and drop foot gait, which had persisted for several weeks. I also experienced coldness and numbness in my left foot. Two prior episodes of numbness had occurred. My first had been at 28, when the left side of my body had become numb. I was diagnosed depressed and prescribed antidepressants. The numbness subsided. My next episode of numbness was at 33; I became numb from my toes to my waist. I was diagnosed, this time, with underactive thyroid and prescribed medication. As my doctors now speculate, the two instances of numbness were probably symptoms of M.S. My third episode confirmed M.S., following an MRI for lesions on my spine. A later MRI of my brain showed lesions with varying levels of damage. At the time, I had no discernable brain damage and physical problems were more inconvenient than disruptive.
My younger brothers and I had lost our 35 year old brother and our uncle in a private plane crash in 1991. I was 37. A knifelike pain had invaded my heart, running into my chest and through my back. This site was later the source of my breast cancer, which developed when I was 41.
Before Johnny died, I had been working at the local community college seven years, teaching English, Theater, and directing plays. There I collaborated with a colleague, Clark Bowlen, who eventually became my husband. Our brother died in winter, I was committed to direct Shakespeare's "A Midsummer Night's Dream" for the spring. It was difficult to focus during rehearsal and I wondered whether I should continue directing. The output it required was truly beyond me. For this show, I had to direct three different sets of rehearsals; the story, the story within the story and the hip hop choreography and rapping of Shakespeare verse. We had an excellent cast, but I felt as if I was donating my blood to the rehearsals.
Perhaps because I was feeling wounded, and felt the need to know how to care for myself, I decided to study counseling. During that period of intense grief my artistic inspiration went underground. Fortunately, my apitude for counseling was high and I graduated Summa Cum Laude within the year. It also helped to know that people survive disasters and to understand that survival can be the opportunity for a deeper, more mature life. I had finished my second Masters' degree and, by networking, found an internship at a dual diagnosis (substance abuse and mental health) facility.
After a successful internship, in which I learned to conduct intakes, design treatment plans, chart progress, and start a woman's group, I was eager to work. Facilitating the woman's group sharpened my clinical awareness of gender differential as a cultural power issue. I was offered the Partial Hospital Co-ordinator position, where I remained for three years. It was difficult to work in such an intensive environment; the program was an ambulatory emergency room for substance dependence. People in acute distress struggled with intense cravings, physically and emotionally, as they began their lives in sobriety.
Being an drug addict is more complex than participating in ritualiztic use of a substance. It is accompanied by a dangerously exciting but deadly life style that addicts crave emotionally, once the physical craving had diminished. In brief, who am I when I am not using? Clients would confront this question for the first time in their lives. It was an extraordinary opportunity to be with people during a major turning point; for some, those days were the difference between life or death. There was an urgency to retrieve, however retrospectively, the years that had been lost and make up to loved ones for their mistakes. This parelleled my grief; I was sensitized to loss and regret most acutely due to our family losses.
My next position was to design and implement a job readiness program for battered female substance abusers. Utilizing my years of teaching and the politics of power I had learned through feminist theater, the first half of the program was devoted to trauma recovery. The second half of the year, women pursued jobs or prepared themselves for jobs by writing resumes, conducting mock interviews, practicing assertiveness without aggression, dressing for business and building self esteem as they experienced support and success.
Unfortunately, the funding was not renewed the following year and the program was discontinued. I worked to place women in outpatient services and continued to counsel many. Within the year, the Clinical Directorship opened, I applied was appointed Clinical Director. My supervisor mentored me through multiple credentialled programs and in the years that followed I earned a wall of degrees, licenses, certificates and special appointments.
My supervisor was not only kind to me but saw my potential and actively helped me to develop professionally. He saw competence in me that I couldn't see myself, but with his support I grew into the role and made it my own. We also had a warm, compassionate psychiatrist on staff who I had worked with since my Partial Hospital days. As I became clinically seasoned, my judgement, leadership, ability to think on my feet and instantly assess difficult situations was maturing. The clinical staff grew and we began to operate as a team. When problems were presented to me I did my best to see as many viewpoints as I could, and consider the impact for all.
Almost four years after John's death (1995) I developed breast cancer. The malignancy was directly over my heart and where the piercing pain of his death had first physically stabbed me. I underwent surgery, chemotherapy and radiation by 42. Treatments were exhausting and facing mortality; first my brother's death, now my own, was frightening. Throughout treatment, I did not reveal my diagnosis to clients, which was difficult because it was such an important part of my life. Although I never returned to pre-chemo functioning or stamina, my professional life continued to thrive. Three years later, in 1998, I was diagnosed with M.S. This time I was angry. Come on! I said to myself. Give me a break! Our brother, our uncle crash in a private plane, the family is devastated. I get cancer, recover and I'm diagnosed with a progressive and unpredictable nerve disease by 44.
I have been told I had little obvious performance performance difficulties until 01. Abruptly, it seemed, I was making numerous errors. I would transform numbers and forget what I said to therapists. My supervisor was very supportive, but I could feel myself being scrutinized at work and became increasingly anxious under a broader critical gaze. I was used to producing exceptional work. Now it was taking more out of me to go to work and come home without being agitated, self doubting and exhausted. I don't know if I would have taken it in stride if I had not been sick. But, of course, my illness was affecting performance. Over time, my reservoir of strength had been waning. My job, which I had once thought of as creative, fun and challenging, was now dreadful. I would count days to weekends and vacations, only to come back more fatigued than I had left. I could no longer multi-task and crisis work left me stuttering. I told him I needed to quit. Gently, he once again advised me of areas I needed to correct. At some point, I blurted out that I WAS doing my best, that this was the best I had to give and no amount of advice could correct it. I think for a time he believed I was willfully refusing to improve. I was fearful of my lack of concentration, low tolerance for others, memory lapses with the computer, difficulty learning new tasks. I could no longer explain myself, I lost track of what I had been saying. Why was it that I was supported the least when I needed it the most?
I did not improve at work. One day, struggling to speak, I saw a look of horror come over my bosses face. I stuttered that I had M.S. and could not prevent the symptoms he was seeing. I saw him look at me, finally believing there was something wrong. After that, he eased up, encouraging me to see my neurologist. It took several months to schedule an appointment with a neuropsychologist, and by that time it was too late. After two days of extensive oral and written testing, she concluded I had extensive frontal lobe damage "of a permanent nature". This would account for recent lapses in attention, memory, learning, assessment; all the areas I had previously excelled in. We began to talk disability. I knew it would change our marriage structure. But I also knew how impossibly tired I was every day, that I would lie in my car for an hour or on my office floor to make it through the day. Many collegues insisted there was nothing wrong with me and labeling me unfit was ridiculous. These people, many, my staff, had adapted to my limitations.



CHAPTERE ONE
Diagnosis Realized


I didn't believe I had M.S. I didn't even know what it was. The first reason I attributed my balance difficulties to was our old office building, previously a chemical processing factory for carpets, circa early 1900's.
The brick surfaces were corroded and easily spilled into sand. The building was a hundred years old; a Northeastern historic landmark. I had heard of "sick buildings" carrying airborne infections in their ventilating systems. It did appear others people were similarily affected. A few years before, I had developed breast cancer. Several woman had been diagnosed with Fibromyalgia. All I associated with fibromyalgia was the title of the book a friend had sent me, "Screaming To Be Heard".
With my love of drama, I entertained my husband by loudly acting out the title. But I knew several of my friends outside of work had also been diagnosed, and knew it was an unpredictable, painful and recently known disease. Allegedly, there might be a link between fibromyalgia and M.S.
There were those bouts of flu that cycled through the office in an endless loop of sinus problems, coughs, sore throats, bronchitis, fever and unidentified flying viruses. I requested the property managers have the air quality checked. Despite their reassurance that all was fine, it was a relief to move into our new office building; which, comparably, was a modern technological marvel.
Nevertheless, I continued to be troubled with symptoms and developed new ones. Numbness in my left foot, floppy gait, a diminishing ability to handle simultaneous events without becoming overwhelmed. Difficulty with word retrieval, especially under pressure. This was not terrific, since I was an administrator and supervisor of crisis work. My job required that I make sound decisions fast, and do so calmly, reassurring others.
I did not relate mental confusion, loss of words, chronic fatigue with M.S. I did begin to notice others glancing at me sideways. These co-workers had been, in the past, co-operative and I was emotionally thrown by such unfamiliar disapproval. Throughout these months, my supervisor would gently encourage areas of my work that needed improvement. My staff continued to be very supportive, finishing sentences for me or retrieving words I could not find.
My MRIs found multiple lesions on my spine, affecting co-ordination, balance, impulse reaction time. One lesion appearred new, accounting for vertigo, falls, recent crashes. Lesions are areas in the spinal cord and brain where the protective "cord" surrounding nerves (Mylon Sheath) is attacked by one's own immune system.The scar tissue surrounding the damage is a lesion. Sometimes, nerves find alternative pathways to deliver electrical signals to the brain. Sometimes there is permanent loss of nerve transmission.
Not understanding that these symptoms could be due to M.S., I went to local M.S. support group and met younger and more seriously progressed (or so it seemed to me then) group members. Despite my limp, I walked into the meeting while others were in chairs or dependent on walkers or canes. I remember thinking how comparatively mild my case must be. Issues of stamina, lack of understanding from others, and the American Disabilities Act did not concern me then, but that changed as I progressed.
I didn't think much of it when I fell off my bike the first time. I blamed carelessness and continued to ride. I had a second and third episode dropping the bike before realizing it was compromised co-ordination. My neurologist told me to walk instead of ride. I took this as a validation that my problem was not serious. Then I rolled down the riverbank in our backyard, trying to steady our kayak back on its rack. The steep drop was littered with tree trunks, random branches and rocks. I rolled for two full rolls before stopping at the bank in the soft, wet earth. My brain had told me to reach out and grab a tree trunk to break the fall, but my body refused to comply.
As I rolled, I recognized that my body had been unable to respond quickly to mental directives. I lost my balance and fell several other occasions before I learned that I could not move as I once had. I fell down our porch step, head slamming forward into the door frame, then smashing the back of my head on landscape rocks. This one stunned me. I sat there, sore, dizzy and incredulous, before I could walk inside.
Then there was the night I injected myself with my weekly dose of Avonex. (Beta Interferon that slows M.S. progression). I am frequently unable to sleep these nights. By one a.m. I decided to go downstairs to read. I slipped, left foot curling under me, with my left toes curled in reverse direction as I bang, bang, banged down those stairs. Despite the railing, I was unable, once again, to break the fall. Instead, I had broken my toe.
I also noticed people at work were acting concerned about my balance. Once, I fell off my desk watering my plants. I had been watering plants standing on my desk for a decade! That crash would have needed a safety helmet to break. I was collecting bumps on my head and bruises all over my body, not remembering how they had happened.
The falls left me fearful and insecure. How could I trust my perception and former range of activity? M.S. rapidly taught me adaptation. Everything physical had to be done slower. M.S. provided immediate feedback. I was no longer surefooted as I had been in earlier theater days.



Unapologetically Taken

I don't know when it happened;
I had twenty dollars at the Christmas
Tree Farm,
and then I didn't.

My gloves and scarves would steal away.
My hats dove down to
sales floors, camouflaged,
without consent.


At the post office, for example.
With my bills and change safely
stode away.
The reason I was there:
Equally irretrievable.

And that's how it was.
Every day.
A fight to find
the cleaning supplies or
get out of my own way.

To work hard
following conversations.
To dismiss the thoughtlessness
of condescension.

Don't tell me you understand
because you don't.
To lose
what you once knew
each day
to have it so aggressively,
unapologetically,
taken away.


CHAPTER TWO
SYMPTOMS


Between 1999 and 2000, I realized I was having difficulty accessing words. It started before I knew I was compensating. The thought would come, but the words to express the idea were hidden across a chasm of wordlessness. The bridge had collapsed. I would find simplied language to express my idea, although meaning was often compromised and I spent twice the time explaining the thought. As someone who had competently taught, managed stores and directed a clinical staff, a muddled ability to explain had never been a problem. I relied on my ability to speak spontaneously and clearly, provide a broader context and identify how the issue at hand could enhance an individual therapist's professional development.
My staff, intuitively understanding my word access was diminishing, had developed the habit of finishing sentences I would stumble over. They could see my embarrassment and frustration as I struggled for words. They knew it was a matter of access, not comprehension, and worked with me supportively, with "I know what you mean" or "is it like this?" to cue me for words.
During my last years of employment I was doing much more supportive listening than problem solving. Staff had learned how I thought clinically and my limitations actually challenged them to be more self directed. I believe this was beneficial to the staff, it was certainly supportive to me.
The department had stabilized; clinicians were making sound clinical decisions and checking with me the next day. The department was running smoothly with less centralized leadership. I have always been an advocate of team building and the simple
key to this style is, I believe, seeing and acknowledging each person's diverse strengths. Clinical personnel knew they could come to me, I would listen, and I would value each person's perspective. Building on strengths, I was able to emphasize the benefit of change for all.
But it was obvious to me that I was not responding to crisis with my characteristic level headedness. Instead, I now became confused when information came to me rapidly, and would feel flooded. I would direct myself to slow down and mentally rerun what I knew about similar situations. It was a conscious effort to pull myself back far enough to appropriate view the situation. I did find, however, if I could team the situation with another clinician, my thoughts had more clarity. I was thinking more slowly and needed to take it a step at a time now. I learned that my ability to sequence had been compromised, explaining why simple steps now left me confused. I've never been a good map reader or direction taker. But now it was possible to get lost in my home town. Suddenly everyday sights and places looked unfamiliar to me. Since sequencing and spacial relationships were disrupted, it became obvious why I was having computer difficulties. I was often given a series of directions and expected to follow through. Impaired memory compromises even the most reliable people. I compensated by carrying my clipboard, written words were more accessible than spoken.
I was certain my I.Q. was dipping. The connections I had assumed were no longer available. I notices lapses in attention and would find myself staring into space at times, unable to track conversation. It was as if I was on a delay timer and I had been set too late to comprehend verbal communication. I could still engage in right brain functions such as face and body reading, I could identify emotional states of clients, actuallythis skill was now amplified. So the emotional subtext would come screaming at me, and overwhelm me with a barrage of contradictory feelings. What had been in bold face print before mentally was now written in the same print as every insignificant detail. Discernment skills were, at best, delayed. Left brain functioning tangled with giant mismatched circuits.
I was, in fact, misfiring. M.S. frays nerve pathways to the brain. I had lost enough now to short circuit in meetings, discussions, decisions. I could retain new information consistantly only with tight, step by step organization. It is an odd and terrifying experience to recognize you are losing brainpower. I became less confident and hence more vunerable to criticism. My own self doubt would trip me up. The descent
down the stairs of self doubt seemed infinite. Sure, the weekly injections seemed to slow progression, nevertheless, changes had occurred. Numbers became inverted, spelling was inaccessible since I could no longer visualize the word in my mind's eye. At times, word retrieval problems would cause me to lose the thought itself. I consistently knew about the damage but did not know how to compensate.



Dreams/Fears

Being Fired
In our backyard people are set on fire, then rolled down the riverbank. Rain is pouring heavily. These people are about to be disgarded. (about to lose their identity or job). Tormentors (coworkers) are afraid the burns may contaminate them. Therefore, the injured, burned people are chained (bound in illness) and eliminated.

I am riding a train. I decide to jump off inside a tunnel and now stand beside the tracks. Another train is coming from the opposite direction. Before I can turn around, my head and body are severed. I watch my head roll away with some acceptance. I am still in my body, briefly, until I am mashed to a pulp. I hear people say "if only they could have shut down the railway for a few hours, she would have been fine. But they just couldn't stand losing 2 hours profit, no matter who it killed".

I am in a reliable boat, deep at sea. Abruptly I become aware the two halves of the boat have separated, leaving me in a flat, open room without walls, doors or windows. I can still walk around what used to be my home, but I know I am sinking. I think to myself I'd better get my things out before I lose them permanently. Brother Richard is helping me salvage what we could.


Losing Words

I tell a friend
I'm losing words.
Losing thoughts.
Can't track someone's line of reasoning.

You're getting older,
she says.
At fifty? Yes.
It happens to all of us.

I look robust, he says.
I can look robust, I admit.
For a few hours in the morning
or
if I've rested the day before
in bed.
Otherwise,
I collapse in the afternoon
my attention gone.
My reasons to do
what I wanted to do
vanished.

I learn to compensate;
substituting words for
those I can no long access.
I find synonyms in my closets,
I drag out my drama training.

I learn how to
soundlessly fall
so
no one knows
at one a.m.
I've broken my toe.






Bicycle Back Tire Flat


Bicycle back tire flat,
gas gauge on empty.
I am lost on the road
of my non-rechargable life.

I wasn't supposed to take
this turn.
In circles, spinning
or floating or swimming
nerves short circuit.
I do not know what
will fry next.

The body operates
through electric impulses
transmitted by nerves
to the brain.
Sometimes things go astray.

In the sunshine,
it is audible, tactile, visual.

Audible in the energy missing
from my voice,
in sighs of powerlessness.
Surrendering,
a rustling leaf
trusting the breeze.

Visual
in my disheveled hair.
Dark circles under my eyes.
A permanent frown
carved by
blinding headaches.

Tactile in tremors.
The shakiness of my hand
as I labor to write
all I used to
scribble thoughtlessly.
Those spastic jolts of electricity
waking me
involuntarily.




River Cats

Next door
your river cat
stands on gray stones while
dangling from his mouth
by the neck he holds
a dead chipmuck.

His river eyes are fierce.
He is a carnivore cat,
he warns me
not to come closer.

The bushy tail
of his prey
dangles pathetically.
You said
he'd eat the head.
That's what cats did.

Those river cats
who lie at our feet
stretched elegantly
on lambskin rugs,
the little cats
who rub up against us
and lick our fingers clean.

Don't be deceived.




Five Terrorists

So there were
five terrorists
with only one saw,
there was their prisoner,
lately a citizen,
blindfolded,
begging for mercy.

They made a film of themselves
sawing into
the blindfolded man's neck
as he screamed.
Sent it to the U.S.

He screamed
his head off.

Days ago
in his home
he had never imagined
death like that.
Slow, horrifying,
death without god
slicing away his humanity
into a headless corpse.

What do you
call it
when there are five terrorists,
one saw,
a prisoner
and a video camera?

Mutilation.
Abomination.
Desecration.





My M.S. Symptom Progression

Diagnosis 1998 to 2004
compromised balance, frequent falls
dizziness
coldness and "pins and needles"
in limbs
tremour in limbs when fatigued
sudden exhaustion, resulting in
overall performance decline
low tolerance of frustration for everyday stress
inability to multi-task
inability to regulate stamina
mental confusion under time limited circumstances
slowed thinking
decreased comprehension
slower physical responses
limited concentration span
memory lapses
stammering, incoherency
poor word retrival
difficulty visualizing words
random moments of not being able to identify familiar places, situations, sheet music
frequent blinding headaches
difficulty learning new tasks
difficulty sequencing
heat intolerance
difficulty following more than one instruction at a time
difficulty applying assessment skills utilized in discretionary judgement
intolerance for unsupportive others



CHAPTER THREE
LOSS

In My Bones
The loss of my desk,
the loss of my boss,
the loss of my office,
windows accepting light from
across the parking lot,
bright with morning sun.

Computer screen
booting up Microsoft
green leafy plants
in hanging pots
sacred space in which
I have witnessed
so many lost hearts healing.

Worn chairs filled
by years
of hurting people
who have agreed
to let me in;
to find and forgive
their own humanity.

In this office I've sat with mothers
estranged from family.
Cried with bereaved.
Spoken gently
to veterans who
have killed for peace.

I've witnessed courage,
generosity and outrage,
indigination and compassion.
I've seen the beauty of
individuality
in souls
who learned to love
just moments ago.

It is so difficult to leave
this desk, this office,
this shelter zone
created through
tears and years
of being alone
and energy
no longer
in my bones.



My Friend's Face

My friend's face,
surrounded by white pillows,
tubes in her chest.
Meals are delivered
and retrieved;
she doesn't eat.

The birthday cake
chocolate blue green white,
half eaten by visitors
at the foot of her bed
says happy 53!
as she,
shrinking woman,
lies starving.

My friends checkbones
are skeletal,
she sleeps a drugged sleep.
One eye open,
the other sightless.


The Eighth Floor

At first
she wanted the shades up.
Sunlight streaming
into the sick room,
spring colors leaping in.

Then she wanted
the lights on but
the shades closed.
And don't turn off
that bathroom light, please!

And did she have enough
ice packs, towels,
morphine? And
where was her angel;
did you see her angel sculpture?

The tiny red roses
on the sill droop,
unattended.
A dozen or more
floral arrangements
crowd the tables.
"Get well soon!" and
"Thinking of you".

She would whisper
"speak softly" or
"don't touch me,
I'm not the touchy feely type"
and I obeyed.
She became smaller
every day.
She sank into the quicksand
of that bed.

Next, the shades
were drawn,
the lights were off.
The room floated in
nether world twilight.

Flowers migrated
to the floor.
A giant fruit sculpture
delivered itself.
Then
empty vases stacked
against the bathroom
counter.

Vases and vases
of sagging blooms
a fold up cot
against the wall.
Dark room.



Do You Believe Me Now?

Do you believe me when I say
I'm not okay?
Do you believe
I might not understand
all that is happening to me?

MRI's verify it
neuropsych tests confirm it
people who know me
people who love me
tell me there has been some error.

Watch me shopping for fruit, I say.
Watch me wandering produce,
dazzled by displays,
enchanted by colors,
absentminded.
Muzak playing
hypnotically
I return home, weak.

I know I used to do it well.
But now I sort of mutter
half articulated sentences
to myself.
Losing connections to purposes,
no longer
able to access words.

Hearing the walls and windows
of my past
I lapse
into fragmented memory.



Right Brain Engaged, Left Brain Divorced

Today,
remembering lines
from Arthur Miller's play;
"you're the handsomest man, Willy,
the handsomest!"
I hear my mother say
"I'm at the end of my rope!" and
"You kids drive me to distraction".
Then I hear her voice
in mine
her lilt, her pace, her tone.
I remember when
her veins swam in my own.

But today
The volume is ampted up.
Way, way, way up.

A movie starts
a story begins
and I can tell you
how it will end
for all eight characters
with minutes,
or, lately,
play music without a score;
my fingers hearing
the pitch of every
inevitably single key.

It rather scary.
And always loud.
I am walking through
childhood neighborhoods
where
everything comes forward
urgently
to sing to speak to yell;
very, very, very loudly.





Can We Just Forget About M.S.?

Lets just forget about M.S.
trash the infinite updates
demanding descriptions
of illness progression.

Can I do housework?
Can I still drive?
And lets forget about
the Neurologist, Psychologist,
Oncologist, Neuropsychologist,
the G.P.
the P.T.
the O.T.,
OK?
I hadn't planned
to define myself
as a disability.

Some people disapprove
on moral grounds
as my productivity slows down.
Yet
I didn't choose to give away
tolerance for stress
or find myself exhausted
before I'm dressed.

I feel those brightly burning stares
sear beneath my skin.
Then
I remember why
I can't pretend.
Hey. Remember me?
M.S., yes?
I'm not leaving.


Blank Page Blues

This page intentionally left blank
This future intentionally left blank, too
Silently fearing
I may not be able
to get around.
I may not drive
or visit friends.
The mobility I assumed,
abbreviated.

What about those lesions
in my brain and spine...
what else will they steal?
What will disconnected
circuitry
lie to me is real?

Concentration, focus,
memory,
energy gone.

M.S. steals my dignity.
I don't want to lose my mind.
I don't want
to lose me.
I don't want people
to look at me oddly
and whisper quietly
assuming
they must "handle" me.



Disappearring

Leave wave securely
on their surdy limbs,
abundently alive.

Leaves show me
the wind.
Breath giving
life affirming wind.
Bringing the fragrant memory
of the summer night
I first fell in love.

The wind, too,
speaks of its' power,
its' duplicity,
its' willingness to destroy.

The silence inside
the car I drive
the glass windshield
that blocks out the actual
tells me otherwise.

While I
tell my lie
to the wind.



Becoming

I've seen people live
and slowly die
without awakening.
Others who,
living in tragedy,
become it.

I've know people
who have been unloved
yet discover,
beautifully,
they are lovable.

I've met people who,
given the opportunity
to travel inside,
accept.

To learn the language
of flying squirrels or
diving birds
swooping into the river.

The language of now.
The language
inside the pause,
the language of
every culture.

This language;
mute,
ancient and new,
our birthright,
our life work to realize.
To become
ourselves.




Onion

I'm peeling back layers,
a translucent onion;
a sunlit center.

My essence will be
nothing of today.

Scatter scraps
of me
falling brittle
on the ground. Crunchy.
Until
rain's cooling touch
will wash me past
the earth's
messy, muddy hold.

Wash me, rain,
to earth again.
I am an onion.
It is my path
to unfold.


Mid Life

She stood, in mid life,
baffled,
leaning on her cane.

She wondered if autumn would
spirit her away
like the water tumbling
over high rocks
in that mysterious place
she'd been.

Or would the day
spit her out
an empty husk?
Maybe it must.

She wondered this every day.

The blast of color
before gray
or white or black
stormy days and nights
would replace
the spectacular rush
of the season.

Yellow leaves whirling
over cliffs of years
she saw them fall,
while
everything in the autumn air
called "be careful".

And with her cane
planted firmly on ice
she taught herself
to fly,
a yellow leaf.










































                             


Excerpt

It took me awhile to get it. I was diagnosed at 45 with M.S. following a balance problem and drop foot gait, which persisted several weeks. I also experienced coldness and numbness in my left foot. Two prior instances had occurred.



Professional Reviews

Living Well with M.S.



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Reader Reviews for "Living Well with Multiple Sclerosis #1"

Reviewed by Tova Gabrielle 11/23/2005
viscerally breath-taking. intense, energetic, clear as a whistle, overpoweringly real, strong strong voice, amazing objective/subjective stance. eye opening. powerful poetry although the terrorist one doesn't seem to fit. powerful line "MS. I'm not going away." Informative, want to be reassured sooner as to how or that the MS is also a teacher, ie very strong hook re the right brain compensating. i'd work that up, or you probably do in the next part. bravo. interesting that the writing is intact. wonder how that works. sounds like the change in life is ripe with new ways of experiencing life, rich and spiritual and colorful. look forward to more magic in the unfolding story. makes me miss you.
Reviewed by Bill Keena 11/19/2004
Just a few immediate reactions after reading part one: It is interesting to me that this narrative about her experience with MS reveals a defining characteristic of Kathy which I am not sure she is aware that she shares with her mother. Namely, Kathy has spent her life serving others. How? Kathy has certainly done so as a counselor, opening rooms of pain with her clients and methodically showing them the light. She has also served in the theater where, she has helped actors and audiences to understand, to glance in to, to peel back the veils of psyche just a bit. This explains the sometimes painful subjects she has chosen to present. Kathy has done so with the feminist groups she has founded or supported, with the teaching she has done and even as a manager where her style was to admire and respect the talents of her team. Kathy is instantly trusting, accepting and supportive and attentive. This is what makes her a great counselor. Her desire to share her experiences and her skill as a writer combine with these traits to make this an intimate and truthful narrative. And once again, I believe it will help to serve others who take the time to read it. Congratulations, Kathy.


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