Category Archives: Disabilities/Health

Acceptance

Bitter, rasping, grieving, raw
Pain drips, seeps, crawls
Enters every orifice
Building in complex patterns
So severe, so horrific
Chains I have anchored about me
Ensnaring me in a choking, godless bankruptcy
I cannot breathe through it
I am drowning in it
There is no me anymore
Just obligations, duties, responsibilities,
Contrived relationships
Confusion, my brain is seeping away
So I’ll be no more then the man downstairs
Constantly singing his toothless songs,
His cells are in me, so is the dominatrix’s,
Mine? Mine are gone –
There is no me anymore –
I having been missing the memory of her
The one who was so smart, but in the end no more than
A sack of liabilities dumped on the doorstep of a woman who shows love
By beating it out of you
For the good it will bring
Oh, I am drowning
In a reflection of me
There is no me anymore –
I traded her up for this shell
With no respect for the casing
for the heart
for the mind
when others didn’t respect me
I believed them
Soaking it all up like wine
Becoming drunk on deceit
These are crone fingers, brittle, grasping,
Seeking to hold onto what long ago went away
In bitter disgust
At the wretch shivered and hovering in the corner
Trying the hold onto the dust
Left in their footprints
Alone
And self-created
Effervescent ________________________________________
My daughter’s laugh is effervescent
Bubbling out of her wellspring
From a source I don’t know
She took the best and seized it
Grasped it in her precious fingers and held on for dear life
Until she found the right people to share it with
She has her own Zen iridescence,
Sparkling in the sun, soaking up all life-giving rays
She is this generation’s Job,
She has ground to cover
And making it fast
Not time for bonding now . . .
I turned away, thinking she was at my feet,
turned back and she was gone
the door open, the dog left out

A Summer’s Bloom

The bloom of summer is upon us –
Lush, verdant, foliage spilling out of every crevice,
Eagerly seeking their moments of glory
Before winter’s chill sends them in retreat.
Children cascade in movement –
A ballet of motion gracefully brimming with enthusiasm,
Ready for each new adventure,
Clamoring for attention and activity.
From my window I watch –
The rustling of the curtains not caused by breeze but by hand,
The air is too dense with heat and humidity
For my fragile lungs to take in –
Each inhalation is like breathing water.
My windows are frames for the seasons,
My vision to a world I can’t participate in.
My life without is confined to certain temperatures,
Low humidity, some seasons but not others.
An air conditioner and oxygen tank regulate the conditions in which I exist.
The ache of joints and spasm of muscles necessitate heat therapy
When it’s broiling outside –
There is irony in the wearing of warm clothes in air conditioning,
In the dense, slumberous heat of August in New England.
A family birthday bash – seventy odd people –
Festive tents, music, coach rides, and the joy of friendship shared –
Everyone outside, saturating themselves in the moment –
While I hold court with the infirm within . . .
Thirty or forty years younger but just as decrepit, maybe more,
I’ve forgotten what it means to enjoy
As my oxygen tank puts back the oxygen
We stripped from the planet via pollution and overcrowding
I regulate my days –
Quietly, pensively,
Searching for meaning and validity
In the rustling curtains of my windowsill.

A Worthy Life

What then is a worthy life?
A life that justifies the energy
needed to sustain it.
In my diminishment my essence feels shriveled,
parched, depleted
while within rages a torrential battle
against the walls of this confining body.
Suicide can’t be justified –
(that would be unworthy) –
my battles are not meant to scar others.
But the endless exhaustion and pain
that governs my days
may be no more than the last vestiges of inner warfare
– and yet – the wellspring of pain is mute,
steadfastly locked in my throat,
begging for release – but afraid,
oh so very afraid –
that should inner ravings be released
they would be viewed as obtuse, chaotic, crazy . . .
the erratic mumblings of a crone
whose tottering footsteps wore down paths
best left untrod
and whose actions spoke
not of integrity and honor
but as hollow offerings to a vacant God –
words as leaves dried and blown from trees,
spiraling down, to be whipped away in winter’s winds,
leaving no trace they had left their imprint
on the gracious and beautiful landscape
we are given the opportunity
to make a difference . . . a meaning . . . on.

 

Pieces of Me

Each time they demanded, I caved,
Giving just a little more, just a bit more,
Always emptying, never replenishing . . .
I’ve given so much of myself
I have forgotten who I was to begin with.
I cannot fit the pieces together –
Too many are frayed, jagged,
Others imperfect recreations of faulty memory.
Whole sections gone, vanished,
Black holes where vital life force flowed.
I look in the mirror, expecting a missing nose,
A hole in my throat,
My heart gone for sure,
Feathered away in fragments.
As a child I lay in night’s grass staring at the Milky Way –
So very many stars, eons of them,
A wide, white swath cut through the dark,
Carrying hope in silver rays.
The stars have faded now –
There are fewer, none so bright . . .
There is so much more night in my life.
Try as I might, I can’t find the light –
My body carries bruises and scars from bumping the unseen.
I should have been selfish,
Holding onto the pieces of me
Because one woman’s treasures
Are another person’s garbage.
My heart is a cast-off in some musty attic,
Caught in the dark,
With all the night’s lost stars.

Imprinting memories

He is the repository

of her secrets

lending them back

in dribs and drabs

 

Key moments even before

he was around

safe deposited for generations

to come

 

Sharing memories

in hopes, they’ll

become hers once again.

 

A note tacked on the

cabinet door

of an arrangement of events

one by one for

daily discourse

 

A continual litany

streaming forth

to brush the surface

in hopes it

will sink in

 becoming hers

once again

 

Care Receiver

I have been a caregiver for many years now.  Taking care of the elderly has been a privilege and hard work.  So now it is a humbling experience to be the recipient of care.  I had surgery on my foot and have to keep it elevated for a couple of weeks.  The past several days I have had a caregiver coming to care for me.  I feel all my secrets have been exposed . . . that extra roll around my middle, my fastidiousness, etc.

As I gain a little more mobility, I feel I am regaining myself.  To turn over my care to another is disconcerting, to say the least.  Being helpless is not a comfortable feeling.  It is giving me a sense of how it feels when I am caring for someone else.  You need to make allowances for the caregiver’s way of doing things – your way is not the only way.  Still, it can drive you a little crazy to see someone else’s handiwork where things are not exactly the way you do them.

There are clients I’ve had that instructed me step-by-oh-so-minute-step how to do every task, telling myself this person thinks through these things day-in, day-out, with little else to think about as the days wear on.  I understand a little of that now.

I am more than grateful to have a wonderful aide who has stood by me this week as I transition back to a somewhat more active life. Knowing the recovery is going to be 6 – 8 weeks long, I better learn how to be fully independent again.  Home care is not cheap.  But I have to admit, I like my knee scooter.  It’s like having a skateboard and I can move much quicker than otherwise, especially as I’m supposed to be off my foot (do they really think that’s entirely possible?)

It’s good to be back.

Anorexia

In the space between two breaths
she is caught unaware, unknowing –
having spent a short lifetime
eternally busy, frenetically paced
always in motion,
never internally directed –
she is lost, adrift,
her skills and talents
not having prepared her
for rejection, for misdirected words –
she has never allowed
for this contingency,
Who is she beyond the accolades,
the activities, the endless
leadership roles –
what lies beneath?
What feelings exist
in her picket fenced heart
which let in undulating waves
of anguish
filtering out love, trust, kindness.
Like a drug she moves
in perpetual motion –
running, leading, moving, teaching
no reflection of hows or whys
attempting to fill the void with verbs,
no static, resolute exploring
of hidden secrets and mysteries
which hold the heart’s true measure.
No breaking through the resistance.
The moments have arrived
when razor sharp clarity
begs for expression,
where it chips away subterfuge
so real work can begin,
to explore the dim reaches of the soul
to enter terms with
the bald face of reality,
finally unmasked, stripped,
laid bare, but . . .
will she take
the proffered challenge
to grow, or backpedal,
rewind the inner tape
until she can splice, edit,
a produce a facsimile
of the original in its unedited form,
honoring the pain motion covered
the fear leadership masked,
the need unhinged in teaching,
all the imports of a life
skated over in terror and avoidance

Dark is the soul

Dark is the soul that hides
sniveling and whining
behind bolted doors
of fear and remorse –
Barring entry of
kindly words –
to open to love
is to open to fear

Hunkered down, sniffing
fetid smells from spaces
too far removed
from fresh Spring breezes –
a mildewed room
holding only memories
of one long passed away –
the soul shivers
fends off silent enemies,
looks always to others
lest the truth be shown
and waits for answers
too long in coming
for escape from its
dismal corridors,
for the scent of hope
to find its way
through rusted shut doors.

Lulled into a stupor
the soul awaits –
too dimwitted to realize
the greatest enemy of all
is only a mirror away,
silently congratulating itself
for the safety
its prison bars bring

Independence versus Compliance

I have lived life both as an independent person and one who relied on others to make my decisions and create change in my life.  People like my Mother who forcefully made my decisions, paid money to eradicate my debts, and made it easy for me to not stand for myself and my children.  An ex- husband who controlled everything in my life.  For a long time I looked to others for solutions to my problems and I can now declare independence beats passivity every time. My experience is not reflective of others; I just know passivity kept me a prisoner and made me sicker, emotionally, mentally and physically.

Years ago I was severely depressed and went to Western Mental Health Authority in Torrington, CT.  I tried some classes, counseling on financial matters, and was a phone counselor on the Warm Line (a service for the mentally and emotionally ill).  The classes made me feel worse because I saw people who I knew were so much more problematic than I doing better than me because my depression overrode everything else in my mind.  I had trouble relating to others in the programs.

But the Warm Line made me feel better because I had a Psychology background.  The down side was the same people called again and again, sometimes several times a night. I felt I was holding their hands over the phone lines but that I wasn’t making any effective change in their lives.  I didn’t hear recovery.

Slowly I was learning and progressing.  It took time and an experimentation of different psych meds.  I moved across the country, driving on my own, thinking I would have the connections I so sought with my children.  But I landed in a place where I lacked support, my children were busy building their own lives, my daughter was in Africa and my son was engaged to be married and very connected to his fiancee’s family.  Given that I’m shy and an introvert, it was tough going for a year.  Then I found a housing community for those over 50 in another town and began rebuilding my life.

Unfortunately, I became very ill with a 5% chance of living only with major surgery.  My body went septic and most major organs shut down.  Most of my intestines and my gall bladder were necrotic, I was on life support, and was put into a medically induced coma which ended up causing some traumatic brain injuries.  After three weeks of coma and another couple weeks in the hospital, I was moved to a rehabilitation center as I had lost all muscle memory and had to relearn to move every muscle in my body – every finger, toe, arm, everything was still.  No independence at all.  Not able to make any decisions on my own.  People had to feed me, clothe, me, bathe me.  I had a colostomy bag for a year which was a whole trauma in itself.  I was a slug.  My son came every day during that time to make sure I was following the decisions of doctors, nurses, aides and physical therapists.  Being stubborn, I fought this waste land of a body.  I tried standing and walking too soon, joining the Frequent Fallers Club.  So I had to learn that stubbornly acting against the wisdom of others in this case was working against me.

The experience forged an independence of spirit in me.  Every day was a struggle  and even though I was still battling Major Depression/Bipolar, I couldn’t let it claim me.  I had to get better.  I had to believe that God had saved me for some purpose or I wouldn’t be there.  I learned to walk first on bars, than on walkers, then on my own.  No wheelchairs.  I was responsible for my own steam.  For a long time a walk of any length once I left the rehab, required a walker which was embarrassing but essential.  Sometimes my legs would just give out on me, especially embarrassing in church, although there were a lot of prayers sent my way from both coasts. But I got better and after a year I was rid of the colostomy bag – a miracle, there was only enough space left in my intestines for them to be connected.

Now I prefer the life of an independent person.  When I do turn to others’, it is for advice but the decisions are mine.  I am financially responsible for myself.  I work part-time in service as a caregiver to others even though I still have disabilities impeding me.  I don’t appreciate being told by others what to do but I will listen respectfully then make my own determinations.  As I stubbornly didn’t let others  control my life, my relationships  improved.  I work hard to keep a lid on the Depression even though I feel it within me at all times, it does not dictate its’ force upon me.  Activity helps. Working helps.  It is an esteem builder, even though my job can be very difficult.  I just need to be aware of my limits.

Independence has given me a life worth living, one with purpose and meaning.