Category Archives: Common Variable Immunodeficiency

The Day A Hero Became A Villain

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It was a a day that lets you breathe air fully
sun a blazing light
so bright you cannot look into it
sky a healing fantastical blue
suggesting boundless possibilities
gossamer clouds spelling peace
birds singing a song of spring
a day suggesting freedom and hope.

Today I ponder how I came to this place
where I was irrevocably harmed.
How an epic hero doctor on a beautiful day
wearing his white cape and a brilliant smile
worshiped by many
admired by most
used to giving comfort and thoughtful care
made a deliberate decision to betray himself
violate ethics and morality
and selfishly harm a patient.

I’ve howled my own pain to the sky
written volumes of rage
torn papers into shreds with my pen
while I examined my feelings
indignation
betrayal
rage
distress
woundedness
devastation
grief
sadness
resignation
acceptance.

Today, I’m writing his story.
It’s a cautionary tale
a warning for all of us
how a good man could go so wrong
and fall from grace.

There was a moment
a second
an infinitesimal instant.
He could have gone either way
hero or villain.

He chose villain
when he made a coward’s decision
to hide his mistake
instead of face it and
be the person he had been before.

It is true that I was irrevocably damaged
by his decision and cowardice.
It is equally true that he changed his
character in that second
and was himself irrevocably damaged
by his behavior.

No more hero
coward
wimp
weakling
chicken
yellow-belly
candy-ass
craven
cur
scaredy cat

I had lymphoma and finished 8 rounds of chemo.
Six months later, my CT Scan showed a new mass.
Ideally we would have run a PET Scan before I was hospitalized
but insurance was being difficult.
He ran the PET Scan the morning of my admission to the hospital.
The results of that testing told him not to give me chemotherapy
but treatment had already begun.
Those results that said I had no new cancer.
He could have stopped the treatment.
It had only been an hour or two of poison in my veins.

All else followed from that one cowardly decision.
He lost his ethics, morality, and integrity.
It’s a warning for all of us
how one bad decision leads to another and another
until finally you have lost your soul to evil.

Instead of being honest and facing a mistake
he waited a day and lied.
He told me the machine was broken
and had the test run again.
Another moment in time
another decision to be a hero or a villain
show courage or be a coward.

The results were the same
no cancer.
He chose to be a coward
protect himself
wait to find out what to do.
Truly I can only guess at his motivation
his thought process.
I imagine he panicked and envisioned his
life going down the drain.
Maybe the medical center lawyers were involved.
Who really knows what was going on in the privacy of his mind?
Whatever his reasoning
he did not tell me
he did not stop the chemotherapy at all.

Seven days of advanced chemotherapy
24 hours per day for seven days
168 hours of poison designed
for the purpose of flattening my immune system
and making way for a bone marrow transplant.

He telephoned me a month later after I lost my hair
and was completely chemo sick
to tell me in a quirky way that I was lucky.
“Good news,” he said
“You don’t have cancer again at all,”
ignoring the elephant he had placed between us.

He did say, “sorry” before he became brutal
blocking my disability
refusing to sign any papers
preventing me from obtaining any medical care
at all.

That’s the descent into villainhood.
From one decision to another and another
until he behaved as a monster.
Making me sick by accident
and keeping me sick on purpose.

And that’s the story, morning glory.
It was thirteen years ago and in a different state.
It took a long time to figure it all out.
I worked very diligently and
got out from under the thumb of a former hero.

A hero who made a mistake and then did a very bad thing.
He treated me as an object causing him a problem
instead of the living breathing human being he had harmed.
I found medical care after I moved away and
blocked anyone from obtaining my medical records.

This is a true story and it bears a repeated warning.
Cherish your honor and make it your own
because every decision you make leads to your next decision.
Every casual selfishness creates your future life
because whatever we do builds into our next action
and we too, each of us
can change from a hero to a villain.
It begins with a small decision and
the fall into becoming a despicable human being
spirals faster and faster
until you might not even know yourself anymore.

My emphasis is on walking your journey with you as you work toward realizing your dreams, hopes, wishes, and goals.

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Pearls in My Soul

 

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Photo attribution at bottom

A few moments ago I answered the phone. I was writing this posting on positive thought and stopped. Oh, yuk, that was unpleasant! Not what I wanted to hear. Not at all. My mood evaporated, and I brooded. A full on stomp my feet, yell and express my unhappiness tantrum. It’s tempting to roll around in negativity. It’s difficult to shift into an affirmative frame of mind.

I closed the program and shut my computer off. It took a few minutes for me to find my inspiration again. It was an uphill battle against falling mud thoughts decorated with negative rocks of ugly, painful feelings.

My experience today sheds real light on positive thinking.

Life spits on all of us to greater and lesser degrees. Things happen. Abuse, crime, poverty, discrimination, and much ugliness. People die, others get sick. Cancer. Oh, cancer sucks!

We don’t get the job we wanted or the partner we lusted after. We stub our toes, fall down and have automobile accidents. On and on, I could fill this page with the anguish inducing events in life.

I don’t want to live inside the painful events of my life. I’m kind of a big baby. I want pleasure in my life, not pain. And what I focus upon is what I experience. My most important environment is inside my heart and head. What I concentrate on is where I dwell. I can view pain or pleasure.

I cherish the spiritual power of positive thought. I’ve been working on this skill for the past 43 years. I believe our lives conform to what we hold in our minds. If we can change our insides at a deep enough level, we can also influence our outside experience. An ongoing dedication to this process makes a huge difference. I trust this.

I have confidence in the psychological power of positive thought. We can make or break our days in our thoughts. It’s an effort sometimes. Like today. I had to put some mental elbow grease into my mental processes. After that telephone call, I was tempted to watch television, read a book, or something mindless. After all, I deserve it! Because, because, well, just because. There is the pull of whining and “it’s so awful!”

I wanted to write about my experience of yesterday’s (8/21/17) total eclipse. I was joyful in my ability to sit and write in spite of chronic illness and my history of abuse. Yet, I almost let one telephone call derail me.

So, here, this is me. Deciding once again to take the positive path. Maybe even the “road less traveled” (Frost, Robert, The Road Not Taken, 1916).

I collect memories. I think of them as lustrous and finely colored pearls. My memories are gems of great value. Large pearls, small pearls, fresh water pearls, deep from the ocean pearls, black pearls, perfect ones and misshapen gems. Each memory added to a strand residing in the center of my being. I look at them often.

Memories of delight, pleasure, triumph, happiness, rebellion, and freedom. I pull them up and review them at will. Rejoicing in a long ago event. Pearl memories inside me that cheer me up, make me smile and enrich my life day-to-day. With friends. Laughter on the telephone with other friends. Intimate sharing conversations with people I like and love.

That sunny day I mastered the high diving board at the swimming pool. Climbing the ladder, walking to the final third of that board, striding the board and launching. Flying in the air for that few seconds before I hit the water.

My defiant friends in high school. Smoking on the corner, slouching with great attitude. Hours on the telephone. Walking and walking all over town, talking and thinking of mischief.

My first day at college, feeling free and grown up, walking across the campus of Kentucky blue grass. It’s not an authentic blue, but a beautiful blue-green in the summer.

The births of my sons, holding them in my arms first the first time. Different boys, different years, and different experiences, each one a memory pearl that adds to my inner necklace of warmth and happiness.

My small weddings, surrounded by loving people and simple dresses.

The day my husband, Keith, got on his knees to propose. We’d already agreed to marry and I still smile as I remember him asking again with the ring.

The day I walked across the stage for my Ph.D. diploma, hearing my son yell in the crowd, “There’s my mom!”

Or the one year we celebrated Christmas twice. So like children, we were, opening our presents too early until there were none. We decided to do it again.

The eclipse on August 21, 2017, is one of those pearls. We planned and prepared. I couldn’t explain the sense of need and urgency I had about this. I wanted, needed. I live with somewhat debilitating chronic illness, so we had to plan and prepare.

My sense of awe and raw pleasure sitting on our front porch, surrounded by an all around sunset. Then totality. The full eclipse. Our one country street light went on. The earth dimmed. The universe lowered the lights an increment at a time. I watched birds fly west in a group. A few birds flew back east as the lights came back a little at a time. Words fail me to describe this memory and the feelings it produced inside me.

A once in a lifetime experience. A pearl in my soul. A new memory on my smiling necklace of happiness.

Today is my 72nd birthday. I’m writing, cheered at the freedom to sit here and share my thoughts. Keith came home with smiling flowers. Sunflowers, red carnations and something yellow. Another smile, one more pearl.

Now I’m finishing my medical treatment. A once weekly infusion of immunoglobulin to build up my failing immune system. The disease is called Common Variable Immunodeficiency. The treatment is an elixir full of gems, energy, and bullets aimed at bacteria and other beasties. This, too, is a pearl.

I can sit in my chair, sometimes almost unable to move and pull out that necklace. My memory necklace is long. Pearls too long to lift if the necklace was manifest in this world. Inside me, it’s just the right size.

Contact me if you’d like to create your own set of inside pearls.

Email: agentledrlaura@mail.com

Telephone: (615) 464-3791

©2017 by Laura Coleman, Ph.D.  All rights reserved.

*By Abhinaba Basu (Flickr: Laad Bazaar Pearls, Charminar) [CC BY 2.0 (http://creativecommons.org/licenses/by/2.0)%5D, via Wikimedia Commons

The 21st Century Cures Act Hurts My Feelings

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The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
I’m a zebra in a world of horses.
Will I tell my story?
Oh, no, what can I say?
I want to.
I don’t want to.
But I will.

Who will listen
anyway?
No one wants to know this.
I think.
It’s boring
doncha know?

Zebras have rare diseases.
Doctors say
If you hear hoof beats
think horses, not zebras.”
Rare diseases say
Think Zebra!
My rare disease
is Common Variable Immunodeficiency
leaving me vulnerable to infections
and sickness.
Subcutaneous Immunoglobulin
is my treatment.

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
The political system
IS brutal
and not made for
any special snowflake
or small population
like a rare disease.

A rare disease
a small population
has less political capital
less ability to advocate
just less.
Politics trades off
help some by inadvertently
harming others.
Zebras have less power
a smaller population
take the money from us
to benefit someone else
maybe we’ll just go away
or die quietly.

Anger
sarcasm
self pity
blame
blame who?
blame me
blame them
lawyers
politicians
policy people
unseen others
and their ilk.

<oh, sigh>
<oh, my>

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
Cuts the pay for my treatment
below the cost of the treatment
forcing pharmacies
into crisis
requiring big decisions:
hurt their bottom line
or refuse our medicines.

Having rare diseases
hurts my spirit.
It doesn’t feel special
or unique.
I’m a special snowflake
and I need proper care.
I’m a zebra in a world
of horses.

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
I don’t want to
ask for more
and different.
I don’t want to
say, “you just don’t understand.”
Hot burning shame
hiding my face
in embarrassment
telling people
I need this
Please help.

Being a special snowflake
is not my decision
not my want
not my desire
it just is.
Illness isn’t me
It is not who I am
except
illness defines my life
no matter what I do.

I lose myself
in the structure of days
spent taking care of this body
Eating on time
bathing on time
doing this rinse
and that rinse
doing this treatment
that treatment
figure out a schedule
that lets me go out of the house
and let me live a little
bit more richly today.

I’m a free spirit
trapped in routine
discipline
order
and self-care
all demanding
I be someone I’m not.

I want to tell my story
but I don’t want you to see my pain.
I want to tell my story
but I don’t want you to feel my sorrow.
I want to tell my story
but I don’t want you to know my anger.

Most of all I don’t want me to know.
Let me pretend
avoid
deny
and live in rainbows
unicorns
glitter
clouds
flowers
balloons
and
laughter.

I want to tell my story.
I know things
analyze and hypothesize
I have something to share.
I’ve been at this a long time
I have something to say
There is insight to provide
Insight that grew out
of years of suffering.

The 21st Century Cures Act
hurts my feelings
touted as a good thing
turned into harm for Zebras like me.
Will anyone listen?
Will anyone listen
in Washington?
Does anyone
really care?