Carpe diem, vita brevis

July 10, 2018

Three years ago my mother passed away on Thursday.  It still hurts.  The bond with my mother is strong and it will ever be.  I can laugh now doing things unimaginable with my life.  Like going to Boston in the fall to see the Packers, flying for the first time, hopefully producing a play, and publishing another book. I’m living life to the fullest.  My know-it-all cousin visited me this weekend, trying to tell me what to do like he always does.  Of course, I didn’t listen to his writing advice which I will never.  I have writers for that. He is stubborn, but he dearly loves me.  He was surprised that I was just arrived home from the farmer’s market with a week of fresh vegetables.  Just like Mom used to do.  He asked who went with me.  “Myself,” I said. Life is so good now, but it is a lot of work.

My roommate has cancer and needs a new liver.  He sleeps all of the time and doesn’t eat much.  He is confused and weak.  His declining health reminds me of Mom.  Life is short and precious.  The hard part is seeing my artistic roommate, who is very attached to my roommate but he doesn’t understand what is going on.  He is innocent and happy.  His life is about what he is eating and what is staff ate.

Last week I Googled authors with Cerebral palsy.  There are only five of us in the world and three are dead.  I’m number one on the list.  My cousin can shut up.  That’s impossible.  The author has many more books to write and someday I will be known.



June 25, 2018

“You can’t go,” the care attendant said.  I wanted vanilla ice cream to go with my fresh strawberries that I bought at the farmer’s market.  She couldn’t leave the house because someone has to stay with my roommate.  My cab didn’t come.  I took off down the sidewalk heading to Walgreens over a mile away. The wheelchair in the highest speed zoomed down the sidewalks.  I bought my ice cream and headed back home.  Three hours later I was home.  The ice cream and the strawberries were delicious.  I will always be less capable to some people, but I know who I am.  An author.


June 18, 2018

I can’t buy my books for a book signing using my trust fund.  I’m not allowed to make a profit from my trust.  The government probably wouldn’t help me.  I can’t work according to the government.  I have to buy bus tickets that are one hundred and seventeen dollars for forty tickets.  My new care company is still processing stupid paperwork even though I hired them in April.  Bus tickets are included in my budget plan with my care company.  Advocates always lie to me about how fast they can do anything except for my care agency, the wheelchair vendor, and the best case manager who gets calls from people when I’m out.  The wheelchair keeps acting up, but I figured out the problem.  I spent two hundred dollars on a new wireless head array system.  I keep writing, moving onward, despite these problems.

The Ache of Bourdain

June 18, 2018

The death of Anthony Bourdain has hurt the world.  He was a great writer encouraging us to look beyond ourselves and travel.  Writing is lonely, demanding, and hard career.  Authors are hard on themselves.  It is never good enough.  I wanted to die after Mom passed away.  Sometimes I think about how much people love and care about me when I’m down.  Suicide isn’t an option for me anymore.  It would hurt too many people that I love.


June 6, 2018

Yesterday I was gone the entire day.   I spent the day at the Memorial Union and I went to my bar to watch the NBA Finals.  An attendant came to feed me and used the bathroom.  I ate a hamburger, fries, and ice-cream cone.  My attendant said that I shouldn’t be spending money.  I save most of my money except for female entertainment and the computer.  Plus, I’m finally earning money from having two part-time jobs.  After Mom passed, my sister told me to enjoy life.  This is my life and I’m enjoying it.


May 23, 2018

Three years ago Governor Walker decided to establish two programs for long term care for the elderly and people with disabilities.  The counties used to manage long term care for residents with special needs.  The purpose was to give more options to the disabled while saving the state money.  The first program is called Iris which is a nonprofit and a self-directed allowing disabled people to manage their care plan budget with the help of a broker.  The second program is Family Care, which a profit care management business for hundreds of disabled people who are often incapable of managing their care plan budget.  Sadly, residents of group homes don’t get showers on the weekends since there is only one care attendant working the weekend and sometimes during the week.  Also, residents can only go out twice a week unless they “go to work” and services are being cut or eliminated like my home bound roommate’s weekly massage was eliminated.  It was not medical necessary.  The massage was the highlight of his week.  Why are we taking away things from people who have so little?

I’m not writing this week.  I’m working my two part-time jobs critiquing papers and rewriting meeting notes.  I will make over two hundred dollars this month.  I’m still unemployable and I will always be. And Care Wisconsin wants me “to go to work.” I’m just a failure and a statistic to the system.   I don’t care.  I’m an author.

Livin’ the Dream

May 7, 2018

Life is so good.  Saturday I went to a group book signing after going to the farmer’s market.  I talked to authors who I know and talked shop.  Authors are the best medicine for me.  They remind me how far I have come since Mom has passed.  When Mom passed, my dear friend, Patti, who retires in two weeks from Madison College offered encouragement and wisdom as I struggled with my new life.  I wanted to quit but Patti wouldn’t let me.  My counselor who is leaving to live in New York has me seen grow into a man, overcoming life challenges.  Saturday night I went to my bar where I greeted with a beer and danced with a woman.  This is life and I am living it.  And Care Wisconsin wanted me to stop going to my bar because “We can’t be liable.” And I was told that I only two times a week since I don’t “Go to work.”  Care Wisconsin lost an author after reducing the funding for my care and to many disabled people in order to make a profit for their shareholders.  Wisconsin is slowly going back to institutions for long term care.  Sunday I was at the Memorial Union and I saw another writer.  We talked.  I see how much people care about me while enjoying the beautiful afternoon on the terrace. Attendants come and go.  Some say that no one cares about me, but I know better.

Just do it.

April 9, 2018

Writers say that they can’t write.  I have published two books and written another book in three years.


April 4, 2018

April means the writing conference, being with writers, pitching to agents, and dreaming of becoming a New York author.  That’s why I have a career.