A Covid lake outing

July 27, 2020

“Steve!  How are you,” shouts the bartender across State Street.  “Okay.  I miss you.  How are you,” I asked, yelling back to him.  “Hanging in there.  We were talking about you yesterday and wondering how you were.  We miss you, too.  When this is over, you come back.  There is a free beer with your name on it.  Take care, Steve,” the bartender says, going back into the bar.  My boss and I spent an afternoon together.  We looked at a house on the Westside.  The house is vacant and needs some paint and the bathroom needs a shower.  It has a bedroom and an office.  I’m moving before the second wave hits.  Whatever that means.  A house without a roommate for the winter and I have a say in who moves in.  Beautiful neighborhoods with parks and stores nearby.  And friends can visit this winter.  I said, “Yes.”  We spent an hour, looking at the lake.  If I don’t make it through this, I want part of my ashes in the lake.  It’s my favorite spot to write and sleep.  I looked at the artwork on State Street, calling for justice and equality. Yes, there is a long way to go yet.  We have a larger and more important fight to tackle, the virus.  Social justice can wait if one thousand Americans are dying each day.  Until we dedicate ourselves to beating CONVID we will be a segregated society.  People with disabilities will remain hidden away while the country moves onward.  That’s unamerican.   I savored my outing with my boss especially the lake.  It made me wonder if Americans have the fortitude to sacrifice for the greater good for all or are we going to be selfish, saying, “I’m going to what I want and the hell with everyone else.” That was probably the last time this year I will see the lake.  It’s time for Americans to wake up.  And stop being in denial like our president.  Make people take one ride and shut it down for three months.  That’s what is needed for a united country.

Annual Review

July 20, 2020

Next week is my annual review.  The annual review is my budget for services for the year. My consultant, agent, and two case managers will have a meeting on Zoom to discuss my plan.  I will sign the paperwork this week for $100,300 to take care of me for the year.  It is ridiculous to have my managers involved for a five-minute conversation.  Life is simple: write and sleep.  This year is gone. A thousand bus tickets sit on my desk.  Until there is a vaccination, nothing will change, but the State has to follow their rules, making sure people with disabilities are okay.  I’m just a statistic costing the State money.

Thoughts on coping

July 6, 2020

Americans are spoiled, impatient, and short-sighted people.  Our attention span to anything is nil.  We can’t just ignore this pandemic like we do with a disease in a “third world” country.  That’s how we got into this mess anyway.  We always believe that we don’t have to worry, “Yes, it is sad.  Oh well, it is over there not here.”  Guess what?  That kind of thinking is killing us.  And CONVID is here to stay.  Disabled advocates tell consumers it will be over soon.  It will be several years before life is normal, if that, for us.  I went to the park yesterday; a Badger Bus was sitting in a parking lot.  So, I drove up to it to say Hi.  The bus driver opened the door.  We exchanged pleasant comments and we said we missed each other. The driver said, “It will be over in a while.” I went on my way to sit on the hill, watching traffic on Washington Avenue for three hours.  Life goes on with people living it.  You couldn’t lock down people if you tried.  The cow has left the barn.  Let the slaughter begin.  That’s what it is.  Who will survive?  It is like giving an animal an area to run while you shoot at it.  Eventually, you die.  My independence is lost.  Yes, I could go to a store to buy something or get take-out but it isn’t worth losing my freedom to go outside.  That’s something people take for granted.

Inspection!

June 29, 2020

My office is cleaned which means it is inspection time.  This is a joke!  A supervisor from my agency will come to inspect the house, fulfilling one of the stupid state mandates.  So, the manager has the staff cleaning the house from top to bottom.  The garbage is full of boxes and appliances.  Oh, we have an oven now!  Thanks to my nagging and emailing people.  “Steve knows too much.  Don’t tell him anything,” the manager told the staff at a meeting.  This is funny.  I see everything in this house and I could manage it.  I’m always observing — like today I was at the park and a group of black men walked by.  “I was a care worker, and he shouldn’t be out alone,” said a man to the group, smoking weed. I drove off to another part of the park.  I sat watching the traffic on Washington Avenue on a hill for a couple of hours, thinking about life.  That man could have called the police, creating another mess for me.  I might have lost my freedom to go outside.  In the past, people called the police.  I observe things to avoid problems.  And writers observe their surroundings.  I have to do more so.  People talk about equality these days.  Inequality is a part of my life until I die.  I live with it.  My favorite attendant asked, “Are you ready for the inspection?” I don’t care.  I have bigger issues than an inspection.

Life ain’t life.

June 22, 2020

I talked to my Dad today at the park, staring at the perfect blue skies.  He has been gone for 33 years.  Time keeps moving along.  This messed up world with the virus and the racial problem.  It’s too much to think about.  I closed my eyes and took a nap.  People don’t know how lucky they are.  The oven still doesn’t work.  The refrigerator is full of food but it can’t be cooked.  The virus isn’t in the house, but no repairman can come into the house because of the virus.  People would have a fit.  The State has to cover their ass.  A month ago, my senior case manager sent an email to the staff, saying, “Steve can’t order take-out without my permission.” She has changed her mind, but says, “Home cooked meals are better to have.” I have to fight daily to keep my independence. Equality is a constant struggle.  The disabled have lost so much.  The world keeps moving leaving people with disabilities behind.

Endurance is life.

June 15, 2020

It’s been quite a week.  Getting tested, turning up negative, having a broken oven, eating sandwiches for supper, the case manager forgets to buy bread, and of the buddy buttons has a rip in it.  I keep moving onwards as my staff complains about being tested saying they don’t want to work.  They are paid double.  No repairmen can enter the house because of the virus even though we are negative.  The oven decided to work allowing me to eat a decent meal.  Living here is always interesting.  There is never a dull moment.  The staff will start going on vacation.  More positives will happen meaning more scares.  Eventually, disabled people will get it and die. And all of the state protective measures, protecting people with disabilities are for naught.

I sat in the park on Washington Avenue this weekend.  I asked permission to go from my case manager to go. A year ago I went where I want.  I would have been at the Memorial Union sitting by the lake, looking at the water, thinking about writing.  Maybe go to my bar and have a beer.  And head back to the lake or pick up take-out before going home.  Just seeing Washington Avenue was like going to a missing land.  I can’t describe it in words. After two and a half months not seeing anything but my neighborhood, I venture out into the world.  It was weird and eerie.  I sat under a tree for three hours just thinking what is my next writing move will be.  The country is falling apart and dying.  Of course, I didn’t know what was going on.  I saw my bar being attacked on TV by protestors.  I used “live” in that part of State Street spending hours there.  People are angry, tired, broke, and want justice.  The division in America is killing it.  Racial discrimination is morally wrong and justice too often gets shifted, but we have a bigger enemy now with the virus.  Americans whine about being home for two months.  That’s nothing.  More people will get sick and die.   Another lockdown will happen forcing people inside their homes for several months.  Most disabled are in their homes now and will pay for these actions for years to come.  People with disabilities are not allowed out in the community, protecting the most vulnerable.

Patterns and Changes

May 25, 2020

This week or next, my agency will move my roommate, who is bipolar.  In her mind she lives in a psych ward, waiting to see the doctor.  She has been in so many rehabilitation places she doesn’t know she is.  It reminds me of my Dad.  In fact he went to the same psych hospital she was in.  I remember sitting in the van, waiting to pick up Dad for a visit.  He talked about people, burning holes with cigarettes.  It scared me.  Dad was in and out of psych hospitals, halfway houses, and rehabilitation centers until he passed away alone. It’s weird.  She worked in Racine in the same industrial park that Dad did.  I attended high school in Racine.  Dad used to drink.  She was an alcoholic.  Her brain was fried from electric shock treatments like Dad. After the fifth suicide attempt in two years, mom, my sister, and I had had enough.  Dad went to California and never returned.  Yes, she has driven me nuts at times. I ran over her several times, and yelled at her.  But I have great empathy for her, yet she pushed me away.  I gave her turkey at Thanksgiving and ham at Easter.  I wanted her to have a good meal on a holiday and I provided it.  Her family dumped her leaving her without anyone.  She will probably die alone.  Her brother will get a call one day.  That’s the sad reality.

King for a day.

May 11, 2020

Once upon a time, there was a booming economy overseen by a president who was a millionaire businessman.  His irresistible charm appealed to the people who were tired of empty politicians’ promises and the same old government.  The people wanted the maverick who told what people wanted to hear.  He won the election.  The maverick cut taxes, regulations for the environment, health care, and the isolation from the rest of the world.  The economy soared and unemployment was at all-time low.  Three years it was pie in the sky, making the nation great again. He was a showman at rallies with people, waving signs as he pitted people against each other.  In his mind the world cheated the nation out of money.  He severed ties with the world to make the nation great.  The economy hits the roof.  People were working in the great nation.  Then an evil virus popped up in China making people sick and some died.  The sickness was spreading around the world, closing countries.  People kept dying, but he ignored the scientists, who warned him to get tests for the people.  That costs money!  So, he fired scientists.  The sickness came to the best nation, making many people sick and some died.  The soaring economy sunk and people didn’t work.  People hid in their homes.  He said, “It’s okay now go back to work.  Make the economy great.” Some people venture out, having cabin fever, and many died.  The economy was busted taking years for recovery.  More people died, but the king was determined to open the economy.  The scientists warned the king but he didn’t listen.  People were sick, hungry, homeless, and more died.  The king said, “It’s okay.  Go to work.”  The people, who were still alive overthrew the king.  A scientist was elected by the people, who developed a vaccine against the virus, saving the world.

Shakespeare didn’t write this, but it feels he did!  No, some author with severe Cerebral palsy wrote it.  Who could that be?  A writer told me last week when I die writers will be writing about me.  What a wonderful thought!

The Sting

May 4, 2020

Grandpa sat in the kitchen, smoking his corncob pipe when my cousin enters the house. Grandpa looks at John and says, “You should have mowed today.” John says, “It’s ninety-five degrees outside and I will mow tomorrow.”  Grandpa takes another puff on his pipe, saying, “You’re lazy and won’t amount to anything in this world.”  Several years after that, Grandpa moved in with Mom and me when I was attending college.  He was getting frail and needed some assistance.  Grandpa lived with us for a year or two. One day I came home from school, saying, “I got an A in Economics.  Everyone else failed. Taco Bell and basketball tonight.  No homework.”  He looks at me and Mom, saying, “He’s just a cripple.” I yelled, “I will get a degree and become a writer.” Years later John is a news cameraman in Minnesota for one of the top news media markets in the country.  He covered a funeral of a Corona virus victim last week.  A silver coffin sat above the grave. Four men in white jumpsuits buried the casket.  There were no mourners. Just another number going into the ground.  I wrote two editorials and a newsletter for my agency.  The editorial was in the Wisconsin State Journal about the need to test people with disabilities after one of my care attendants was tested positive.  Also, I wrote a newsletter for my agency, writing about the new life for the disabled.  Most of my agency’s consumers are developmentally disabled.  Their routine life is gone.  They don’t understand what is happening and are lost.  A year to them is like a decade. I wrote another article about care attendants being unsung heroes for the newsletter, reminding our consumers that they are not alone.  There is a new normal that some disabled people won’t understand.  And Trump proclaims everything is back to normal as more people die and the disabled are sheltered away.  He’s going to hell.