“Steve, I can’t sit you up,” an attendant says.  “My back hurts.”  Later that night the same attendant says, “I can only roll you over once because my back hurts.” Another attendant asks, “Steve, can you email the office to get my job back here?” This is an attendant, who let my nonverbal friend pee on herself in bed not answering the entire night.  That attendant did the same thing to me twice.  The attendant has potential, but she dropped out of school in the second week of the semester.  I did earn five dollars from her for betting that she would drop out of school before October.  Another attendant says, “Steve, Helen doesn’t do her job.  Can you email the office?”  I have to fix everything here like the shower drain is clogged with hair, but my female staff doesn’t know what to do.  I tell them and they don’t do it.  I fixed the electric wheelchair.  And then I’m told that I’m mean etc. Then I am supposed to solve the politics of the house.  Meanwhile, my agent has edited the manuscript.  More rewriting.  I’m writing another manuscript and a screenplay.  I’m an author not a case manager.

Mom Is Proud

October 21, 2019

“Steve, the Hoyer doesn’t work,” said the attendant.  “You guys need to charge it,” I tell her.  “You need get a new one,” the attendant told me.  I mumbled while laughing inside.  Hoyers don’t grow on trees.   The Hoyer was plugged in.  And magic, it worked.  Life is a challenge.  There is always a problem.   Whether it’s the electric wheelchair, the computer, attendant’s laziness, or the career.  I look forward to hearing from you, emails to write or answer.  And writing to do.  Plus, my roommate.  And running errands.  Most disabled people don’t go on vacation, but starting on early Friday I am on vacation going to Kansas City to see the Packers game and eat barbecue.  Four days without any demands.  And on the way, I’m visiting Mom.  I’m telling her that I’m independent now.  I miss her.  Life is so good now.  With friends and a career.  I probably won’t get published again.  My agent is too busy with a part-time job to read new manuscripts, even though I was given the go-ahead to write another manuscript by my agent.  Two radio interviews are lined up and a screenplay is being read by two filmmakers.  I will tell Mom that New York will happen someday.  That’s an author’s life!  Mom is proud.

Trouble Ahead

October 15, 2019

My care agency is under investigation by the fed for abuse, money laundry, and fraud.  That’s what happens when the State makes long-term health care a business.  The agency has grown too fast.   In the last ten months the agency has bought forty houses without hiring more case managers to overlook these homes.  There is a high demand for residential health care houses for the disabled from the northeast where they don’t have many long-term health care houses.  Case managers of my agency manage five or six houses.  Managers are responsible to see that all consumers are provided for.  As I have written many times, this is sadly the case.  My roommate is a perfect example.  She goes without things like toothpaste and she doesn’t have any spending money for Dairy Queen or to see a movie.  Her family doesn’t check on her and she doesn’t know any better.  She believes that she has money, but she is destitute.  Most of the agency’s consumers are mentally incompetent.  If you feed them, they are happy.  An author can see what is going on and write it.  Today I saw my future home.  It’s two blocks away from the capitol, a block from the theater, five blocks from the grocery store, a short drive from my bar, and the Memorial Union.  It’s ideal for me.  I can go to a soccer game at Breeze Stevens Field.  My play group is a short distance to drive there.   No more bus.  Most of my staff are coming with me. They are awesome!  Of course, the agency doesn’t know this.  Like when I leave I’m taking all of the plates, glasses, and bowls because Mom bought them.  So, I will be in the doghouse.  The agency will be happy to be rid of me.  They won’t like the radio interview in November.  An author shouldn’t be living in a behavior house with a person who harasses him every day.

A Sunday in fall

October 8, 2019

Another case manager bites the dust.  It’s funny my agency keeps promoting case managers to grow the company when consumers go without food or necessities.  My case manager had to work the house today.  No staff wanted to work or were available.  It was the first time that she worked in the house.  Of course, I wasn’t here.  I’m never here on Sundays.  I was at the bar with the guys drinking and enjoying another Packer’s win.  Basically I was home.  State Street is home to me.  Before the game I drove around the Capitol savoring the last of the warm weather.  It was beautiful with a light chilly breeze in the air and locust leaves on the sidewalks.  Fall is definitely here with the sweet smell of leaves.  On Monday I did the same thing seeing homeless people sleeping on benches or in doorways I listened to the panhandlers play music.  I needed bread Friday and I was at the theater. After the play I went to Walgreens to buy some bread.  On Sunday I rode the bus with a mentally incompetent person and his attendant.  The attendant takes the person places every day, going to all these great social programs for the cognitively disabled in Madison.  The attendant asked the driver where I was going.  “Steve, is going to the bar.”  The attendant was surprised. “He spends a couple of hours there and does what he wants,” the driver tells him.  I got off the bus and went down State Street.  My roommate probably slept all day.  It doesn’t matter anymore.  I’m moving home in May without a case manager.  I will manage my staff!  I do it now anyway.

Life in the trenches

September 16, 2019

“Hey, Busy,” I said to my friend at the bar. “I don’t have any gloves at home and Walgreens doesn’t have gloves.”  Busy used to work for Jimmy Johns and goes across the street to get a box of gloves.  My friend, Tanner is the manager of Jimmy Johns, but he was at the Packer game.  When I got up, the attendant said, “Steve, there are no gloves.  I called the manager, but she says that she bought a box of gloves on Friday.  I don’t have to get you up without gloves, but I will since it is game day.”  The case manager doesn’t work on the weekend even though it is in the case manager’s manual that case managers need to be available for consumers on the weekend.  My care agency has over 100 consumers and 40 houses now.  The agency is opened eight hours a day, Monday to Friday.  The agency has doubled in the last six months.  They don’t read my emails anymore.  I’m just a complainer.  I buy stuff downtown all of the time since the case manager is too busy managing six houses.  The agency doesn’t want my staff to tell me anything.  That’s a joke!  I run this house.  I’m not stupid.  The agency doesn’t want to keep me.  I’m too much trouble.  That will change in October when Wisconsin Public Radio airs my story and I have a radio interview in November in Sun Prairie. Then I will be their favorite author. That’s how it is.  What the agency forgets people read my blog.  They don’t want me to move, but I will.  I’m tired of being harassed by my roommate.  It’s sad. Most consumers of the agency are mentally incompetent and don’t know any better.  The owner lines his pockets with money.

Troublemaker

September 9, 2019

“Steve, is constantly complaining and he will email anyone he can,” an assistant of my care agency replied in an email to the new CEO and the new program director.  I emailed to complain about my case manager, who I see five minutes a week and doesn’t keep the house running properly.  Household supplies run out and my roommate goes without what she wants.  Ice cream and cigarettes namely.  That’s her life.  The case manager writes up good care attendants for being five minutes late.  Stupid stuff.  I received the email and I replied, asking for an apology.  The next day I received an apology from the assistant, saying, “I’m sorry.  We have over 100 consumers and over 400 employees.  You want something all of the time.  I see that your needs met.”  First, I’m an employee of the agency.  I should be editing manuals for the agency, but the assistant says that she had sent the attachment several times.  There are no attachments.  I’m being paid for doing nothing.  The case manager doesn’t deposit the paychecks in my checking account.  What did I do this week?  Let’s me see.  I sent queries to New York publishers of my newest middle-grade manuscript.  Also, I sent my screen play to a couple of people to read.  I sent my second memoir to a friend to edit.  I ran errands downtown because my case manager is too busy.  I have an accessible affordable downtown apartment in eight months.  My own place with two bedrooms, a bathroom with a roll-in-shower, a kitchen, and a living room.  Lindy can come, too.  I have three care attendants lined up already.  My agency will love the Wisconsin Public Radio story in October.  A radio crew is coming to the house to record the sound of Morse code for the story.  Another radio interview comes in early November.  Does my agency have anyone like me?  I think of only one person.  Most of our consumers are mentally incompetent, who don’t demand a lot.  Feed them they are happy.  I’m sorry that doesn’t work for me.  People demand a lot out of me and I expect the same.  I receive over $100,000 a year from the state to pay for my care.  I can’t earn an income because of all that money to pay for care.  Then if I have a problem my agency will hear about it.  If they don’t want a consumer like me, then the agency truly doesn’t know what an independent consumer.

School invites me back.

September 3, 2019

It’s time for school. I was at the Memorial Union Saturday evening writing in my head the next manuscript in the Sunset Lounge.  I saw that the doors to the Union Theater were open.  I drove inside of the theater’s lobby hoping to see the inside, but an assistant said, “Sorry, sir.  This is a student event.  I laughed imagining becoming a student again.  The English family would kill me if I did me.   That’s life even though this is the last semester of critiquing papers. I’m thinking of writing student’s papers for fifty dollars a paper.  Another attendant moved on to go to school.  She is young and a bit lazy.  I gave her tips about college.  Of course, it went in one ear and out the other.  She will learn.  Some of my staff calls me Dad.  I’m old.  I don’t feel old driving along University Avenue to buy a watermelon and vinegar.  Going downtown is home.  I was at the Taste of Madison today without an attendant.  My favorite attendant was hungover.  She stayed here sleeping and puking.  I was disappointed.  Of course, there was no meal when I returned.  I could have gotten take-out for supper.  A woman danced with me.  She is out there somewhere.  When I find her, I will treat her well not like my sisters.

Good news, bad news

August 28, 2019

This week was spent outside and downtown.  Home is too much at times.  Everything is written down.  What did I eat, where did I go, did I poop, did I pee, when did I go out and come back, and what were my activities for the day?  Supposedly the state looks at that garbage in order to pay my care agency to pay my staff.  I’m just a statistic costing the state money.  I go without what I need or want at times. It’s funny.  I have to live like that. There are politics at home with the staff. “Steve, email the manager about this or that.”  I don’t care about who did or didn’t do something or someone doesn’t like someone.  When I moved here, I played the politics game.  It was just a waste of time.  This week I finished a ten-minute play.  The producer of Wisconsin Public Radio emailed me, saying, “Steve, the story is too long.  Can you cut it or rewrite it?”  I do what every writer does when people tell us to rewrite.  I balked.  That’s natural.  So, I grumbled for an afternoon.  I went out coming up with an idea to write.  I started writing that night.  Two nights later it was finished.  I emailed it to the producer and I went out.  Later that night I checked my email.  The producer replied, “Steve, this is fantastic.” That’s an author’s life.  I sat at the Memorial Union thinking for hours about the next manuscript that I will start this week.  But my agent still hasn’t read my newest manuscript.  She gave me the go-ahead to write another manuscript.  My heart doesn’t know what to do.  Then my IRIS consultant says, “Steve, don’t go over the income limit.” I don’t care anymore about that.  One of my attendants is so uneducated and can’t even go to the grocery store to get ice cream.  And I have to worry about income.  It’s stupid.  I’m taking the money anyway.  ! The State!  They will gripe again this year like always and I will get mad.  Sometimes it would be easy to quit.  Someday I will be a New York author.

Life on

August 19, 2019

I went to church today.  No, I didn’t laugh.  I didn’t find her. Oh well, at least I sold a couple of books.  It was a long week.  The battery was dead on the electric wheelchair.  The wheelchair vendor said that he couldn’t come until Tuesday.  I have places to go and people to see.  So, I got up early Wednesday to get a new battery.  An old camp counselor contacted me.  I still remember being tipped over in a canoe in the Root River.  She was joking around and canoe tipped into the muddy water.  I had a crush on her.  That’s nothing new.  Friday I went to my bar and saw the guys.  I had to fix the wheelchair the power switch came off.  Little Velcro and superglue put me back in business.  Saturday I went to the farmer’s market and afterwards I drove to the Memorial Union to attend a writing retreat.  A day with writers.  I picked up a sub from my friend’s shop for supper.  After church I went to the Memorial Union, I sat by the lake when my friend Busy came.  We had a beer watching the sun set.  My attendants tried to mess up my weekend like not showing up to take me to the bathroom and leaving my wallet on my bed.  That’s life.  My roommate is hidden away, but I’m living life to the fullest. And today I have a reading of my screenplay.

Lucky Steve

August 12, 2019

It’s been four years since I moved here.  It doesn’t seem possible.  Yet I deal with the same problems.  Last night vomit sat on the floor and excrement filled my pants.  I ate too many fresh vegetables and watermelon.  When I woke up my nineteen-old-year care attendant to put me to bed at three o’clock in the morning, she wasn’t too happy with me.  “Really, Steve.  I have to clean this up and I get paid $13 an hour.  And I have to handle this when I made $15 an hour at a behavioral house doing nothing.” She threw her hands up in the air and said, “Ugh.”  She’s right.  This house is a behavioral house even though it is a medical house because I live here.  That doesn’t make any sense.  It’s all about money.  I would die if I could make $13 an hour instead of working for peanuts.  That’s the stupid government for you but not many disabled people work like I do.  Today I went to the grocery store and bought a month worth of food.  I was three dollars over, but I pulled my debit card and paid for it.  The refrigerator is full of vegetables and fruits.  My roommates have their TV dinners and frozen crap.  My case manager shops for my bipolar roommate when she isn’t too busy and buys not enough food to last two weeks.  It’s sad.  Of course, my roommate doesn’t know that.  If there is food in front of her, she will eat it like Mikey.  I gave her chocolate chip mint ice cream and a dill pickle with pickle juice.  She ate it.   She always says, “I have money, Honey.” This is the hard reality for some people with disabilities.  They sleep and eat without a voice … like the government wants.  I think about that when I sit by the lake or on State Street having a beer with my friend, Busy.  Staring at the evening sky I see how lucky I am.