December 31, 2018

It’s New Years.  My new roommate was admitted on Christmas Eve after threatening to kill my cat, calling the staff niggers, and hitting the case manager, but she will be back home on New Year’s Day.  The staff has already forgiven her and my autism roommate misses her.  If I said that to the staff, I would hear about it for weeks.  She accused him of stealing her TV and called him a nigger.  Luckily he was with his parents, enjoying Christmas or he would have cried.  The hope is she will be a brand-new person with different medication but I doubt it.  It’s funny that now my care agency puts these mental people in a medical house.  It’s all about money.  Let’s see now what happens.  I’m running out of food and I don’t have any baby wipes.  The roommate ate most of my food and the manager gave her some of my food before going grocery shopping for her.  There hasn’t been any ice cream in this house for a week now.  This week I will get my food money for the month $225 instead of $250.  The agency takes twenty five dollars for some reason.  At the end of the month there is not much food left, but my roommates always have food to eat.  They eat three meals a day and I eat one meal.  Explain that to me.  That’s my life.  It makes me want to quit, but I keep moving forward looking for a new second part-time job, a girlfriend, writing another book and getting ready for the writing conference in April. The simple lives of my roommates doesn’t compare to mine.

Merry Christmas

December 26, 2018

It’s Christmas.  I went to my bar yesterday to watch the Packers game.  The guys were not there since the season is over and it’s Christmas.  I’m a diehard fan.  “We suck this year, but next year.  .  .”  I drank and watched the Packers win in overtime.  I sat watching the Steelers and the Saints, dreading about going home.  Christmas brought me a new roommate a week early.  She is bipolar and looks like Mom.  One minute she is sweet, kind, and innocent, then in the next moment she is spewing obscenities.  She talks nonstop saying the same stuff over from seven in the morning until eleven at night.  My family is laughing since I have always talked to myself which drove my sister crazy.  I was practicing being a writer.  The roommate talks about her parents up in heaven, her money, friends, and brothers.  One brother is deceased and the other brother doesn’t want anything to do with her.  She says that she has friends and had two husbands.  She “married” me.  So, I’m the next to die.  She will be alone for the rest of her life trapped in her world. It’s sad.  I hide in my office or my room to avoid her with the doors locked.  She knocks on the door, disturbing me.  That’s life in a group home.  She can’t go out and would eat all day.  In fact she ate a gallon of my favorite ice cream in five minutes.  My food is hidden now, including my Christmas cookies.  Sitting at the bar my family surprised me.  They bought me Christmas presents.  The girl’s were clothes, which I need.  It is them that I always think about like my classmates.  Of course my cousin tried to tell me what to do and write.  He should give that up but he won’t.  The bus came.  We said our goodbyes, but as I was leaving the bartenders said, “Merry Christmas, Steve.  See you soon.  I’m loved and cared about.  She won’t ever have that.

Whiskey Tango Foxtrot

December 19, 2018

This week another bus driver said to me that I shouldn’t go out without a care attendant.   I was getting used to a new head array on the electric wheelchair.  After enjoying a movie with a friend, I have to listen to a bus driver rant about me being out alone.  I became angry saying F-bombs.  Of course, I was wrong.  It reminds me of being at a festival with my Dad, wanting to go on the Zipper but the barker said no since I was disabled.  I was upset.  It was the first time that I can remember being discriminated against.  Dad found the barker’s boss and got me on the ride.  I stayed home the rest of the week, avoiding the world.  Writing a new book and working over forty hours at home I need people.  Adult day-care isn’t for me.  My agency won’t pay for an attendant to go to my bar with me nor do I want staff everywhere that I go.  I like my staff, but I need a break from them and work.  I went to the theater, my bar, and today, I will go to a writing group.  The first thing that I hear when I go to these places is, “Hi, Steve.” Those two words are everything to me.  It means that I’m a part of this community and look after when I’m out.  I will always be cognitively disabled to some people, but the people get to know me, discover a hidden gem.

Circles of Fury

December 3, 2018

My electric wheelchair has been broken for about a week now.  I emailed the wheelchair vendor several times but he doesn’t answer for whatever reason.  The probability is the private issues that disabled advocates have to abide by the law.  The law doesn’t take into count people like me who are independent, but use specialized computer software that can’t open encrypt emails.  My emails are being sent but he doesn’t reply or answer voice mail from my case manager.  The vendor could be sick or on vacation.  He is overworked serving many counties, including Madison.  the wheelchair business won’t hire more rehabilitation specialists or can’t find qualified people.  He is the only rehabilitation specialist.  My electric wheelchair sits waiting to be repaired.  The wheelchair goes around in circles and when I turn it on again an error makes the wheelchair inoperable.  My electric wheelchair probably needs the head array fix again which means getting a loaner taking two weeks while waiting two months for my head array to be repaired.  This electric wheelchair is always broken for whatever reason and I used it twice a week.   A year ago a rehabilitation specialist wanted to put a communication device on the electric wheelchair, allowing me to communicate with people and work anywhere.   I wasn’t interested.  The specialists thought it was that I needed a different seat to sit more upright.  The real reason that I never told the specialists is the wheelchair is unreliable.  The communication device gathers dust in a closet.  Meanwhile bus drivers say that I shouldn’t go out without an attendant, but the director of my care agency doesn’t pay attendants to go to bars with a client.  A bus driver said that I was a liability going to bars.  What I’m supposed to do?  Go to Cap class or adult day-care?  No.  I can’t even go to the movies with a friend.  Please fix the electric wheelchair.  Thank you.