Needs

August 7, 2017

Preseason football began last week.  Football, writing, and women are all that I need.  And of course beer. 
Dave,
Poor guy.  I have four women now.  And you bit the bullet, but Sarah is awesome.  We will keep that a secret.  I’m you now.  Life is so different.  It’s not easy, but I’m independent.  Well, I’m coming to the party paying one hundred and eighty for a cab.  Don’t tell Sarah.  She means a lot to me.  She knew that I can make it.  You take good care of her.  She is special.  Maybe someday I will find her. 
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Argh

August 7, 2017

I have to fight everything now because a case manager moved one of the best attendants for not liking her.  Now my understaffed staff thinks that I have to go to bed before eleven since my attendants can’t use the Hoyer.  I’m just an awful person according to some of my staff.  What he is doing all night writing?  They will never understand what I do.  Authors work every single day.  They write and sell books.  My attendants can’t do that.  I have to make sure things are taken care of like doctor’s appointments.  They don’t do book signings.  One day I will get out of this hell hole.

Vacations

August 6, 2017

People go on vacation now, including my staff.  I want to go on vacation, but finding a care attendant to go with me is a nearly impossible task.  I work every day about fifty hours a week.  That’s working.  Don’t I deserve a vacation and travel to experience life in order to keep writing.

Increasing Frustration

July 17, 2017

My friend, Stasia has severe Cerebral palsy and is a professional painter.  She paints using her head.  She is like me, dedicating countless hours to our craft.  We spend time together going to places and talking in our special language.  She understands the ups and downs of having a career unlike most people with disabilities, who sit watching TV or have jobs.  I love her, but I love any woman, who shows interest in me.  She is taken of course.  It is easier for an educated disabled woman to find a boyfriend because a male can pick her up.  It takes a special woman to love a man with a severe physical disability.  I have a lot to offer a woman but I can’t give her much.  I hate being alone.  Will I always be alone?  Fooling around isn’t enough anymore or writing all of the time.  I want a woman to go out with, talk to, and make love to.  She is out there somewhere.  I have been emailing women instead of writing.

Two Years, Mom …

July 14, 2017

Mom has been gone for two years now.  Sometimes I wonder why I’m still here.  According to my staff I’m rude, selfish, disrespectful and a brat.  Suicide enters into my mind, but I keep moving forward making decisions.  I had a plan to kill myself this week.  Sometimes I just want to die.  I’m tired, Mom.  I wear so many hats these days.  It reminds me of the rainbow a couple of days after you passed.  I was in a parking lot, waiting for my cousin to come out of a store.  It was downpouring for several minutes.  I was talking to you.  Rain rattled against the van’s windows.  I had just hired my care agency, becoming a man.  I was bewildered and lost.  The skies cleared and a beautiful rainbow appeared.  The rainbow lit the sky against the blue horizon.  Of course, i looked for the pot of gold at the end of the rainbow.  I thought that I would be a New York author in a matter of days, changing my life forever.  Life did change and it took two years to get published.  Publicity is slow hard work, but people are buying the books.  The end of the rainbow is near now.  Another book is being written.  There will always be tough times.  I have realized that I’m loved by many people.  That’s a part of life, but there are rewards, too.  Some of you don’t want to know about.  Sorry Mom, but I have needs like every man does.  I will move onwards. 

Attendants

July 3, 2017

“I don’t like her.  She is lazy and the house is a mess on the weekend, but the client likes her,” the case manager says on the phone.  “She will be gone soon,” the case manager says.  This care attendant works thirty two hours every weekend taking care of my roommates and me.  She is always on time.  The case manager likes a care attendant, who comes to work to sleep on the sofa and gets sick when he cleans up excrement.  The care manager likes this worthless attendant.  My favorite attendant knows how to fix my electric wheelchair and when it breaks she calls the fix people, telling them how fix it.  When I go out on Sunday, there is always is a home cooked meal waiting for me when I get back.  Who works every weekend and all weekend.  Who does that?
Amy,
Let me take you out to eat.  Anytime and anyplace.  I miss you.  Love, Steve

Big health companies are replacing Dane County health long-term care system in a year.  Currently in Dane County ninety-three percent of the disabled are employed which is the highest percentage in the county.  This could all change when the big companies take over.  Most people with disabilities don’t know this, but I have been attending disabled meetings about this sad reality.  I think about my artistic roommate, who does laundry at a hotel four days a week for three hours a day.  He looks forward to going to going a work each day.  He gets paid and brightens the hotel with his smile.  His employer does small things for him like giving him a rose for Valentine’s Day.  The cognitively disabled need jobs or they will sit at home, watching TV.  It won’t affect me.  I have a career.  I’m the author with two publishers and an agent.

Aunt Nancy

June 19, 2017

I sat on the terrace, looking at the blue sky with puffy white clouds,
floating above.A cold wind blew making the lake choppy, but sail boats glide
across the water.  I talked to Aunt Nancy, the monarch of our family.  Nancy
was always there to talk to and listen to our problems.  She would smile at
you and offer her two cents of advice.  You took it or left it.  Most of the
time she was right.  Nancy didn’t want anything.  She never complained like
Mom.  All that she wanted was family.  Nancy, Uncle John, Uncle Larry, Dad,
and Mom are gone now.  My generation are the elders.  It makes me feel old.
Our lives are busy with commitments and careers, but time moves on.  The
pain that my cousins are feeling now I still feel.  Some days are easier
than others.  I miss Mom but I don’t miss her.  I’m an independent man with
another book on its way.  Sorry about not making it, but I was there in
spirit.

 

Going Out

June 19, 2017

I will go to Concert on the Square to listen to music.  I’m alone like always sitting on the square, enjoying the warm summer breeze.  It’s relaxing, but lonely.  Couples are everywhere.  Women smile at me, saying hi.  My heart jumps as I say hi back, but she walks away.  I listen to the music for two hours before going home to write until four in the morning.  Write another novel, trying to escape the pain of loneliness.  The career is meaningless without her to spend my life with.