Prior Lake Priorities - On Bullying

I know everyone likes to see nice and sunny, funny stories about my sister Amanda, who despite (or maybe partially due to) having Down syndrome, has an offbeat, self-deprecating sense of humor and a characteristic bluntness.  Her one-liners quickly became a hit when I started publishing them on my FB page.

For instance: Amanda is obsessed with past relationships.  I was married twice; once in a prior lifetime, back in the early eighties.  Even now, all these years later, she still occasionally brings that up -- an ancient history that I would just as soon forget.  Now Amanda and I both are drifting into *gasp* middle age, complete with the side effects of wrinkled brows and curly blonde chin hairs.  But she still loves to ask people about their exes, and to my chagrin, she has extended this inquisition to various men that I've dated.  She queried one guy about his ex wife's appearance and he replied, "She's four feet tall and has a beard and a mustache."

"Oh," Amanda said.  "She looks like me."

Unfortunately, with these light-hearted moments come an occasional darker one.  It's especially sad that for us, the darker ones are usually dealt by family members.  It was my normal MO to ignore other people's bad behavior, and focus on the positive side of life.  But now I am finding that ignoring bad behavior doesn't make it go away.  The book I co-authored with Amanda has raised a number of eyebrows, with or without the chin whiskers. 

The bottom line is, bullies don't like being called out. 

Today the trend on Facebook is all about the video of one Bradley Knudson, from Prior Lake Minnesota, whose daughter is the victim of bullying.  Mr. Knudson is calling them out by name, in a YouTube video now thankfully going viral.  I say, "thankfully" because shedding light on this problem is the best way to solve it.  I applaud him.

People who don't have enough conscience or personal integrity to self-monitor should be stripped of their cloaking devices.  My siblings have threatened Amanda, her guardian and me with lawsuits and who knows what else, because we have exposed their bad behavior in THE NORTH SIDE OF DOWN.  We've even lost one of our five-star Amazon reviews, which our reader apparently deleted after the threats went public.

The funny thing is, in reading these reviews, one sees that they don't focus on the bad behavior of siblings. They focus on Amanda's strength, her inherent wisdom, her bravery.  This tells me that our message is ringing true loud and clear:  Get your affairs in order.  Be kind.  Stay strong.  Follow the love.  No matter who you are, what your disability, age, color, gender, chromosome or DNA, you have a voice.  Don't let anyone force you into silence.

For Those Who Try to Shut Me Up

It's a little bit ironic that yesterday, of all days, I got the phone call. The whole world was reeling from the sight  of three hooded terrorists, screaming about Muhammed, their spattered gunfire echoing through the streets of Paris.  How much nerve does it take to run into an office building and gun down a bunch of artists?  I am sure I was not the only one visualizing a "bullseye" on the heads of those criminals while I watched that video.

I have a bit more of an insider perspective  than most, being an artist myself and having worked with a bunch of animators and cartoonists.  Cartoonists, for the most part, are just dorks.  They are the most innocuous people you will find.  Some of them come from horrific dysfunctional backgrounds, and so they draw happy pictures in order to simplify  the world in their minds eye.  They are rarely violent, often internalizing  their anger, letting it come out on the page.  They are often wistful and usually kind.

My heart aches for the families of these victims, who, as far as I can tell, have been nothing short of heroic in their response.  I think it was the editor's daughter who posted a photo of his empty desk; a poignant reminder of his simple occupation...  "Armed" with pencils.

So yesterday, as I was enraged like the rest of the world over the murders of the Charlie Hebdo artists, the phone rang. It was my sister, Amanda. 

"Hey girl!" she used her customary greeting.  "I've got something to tell  you.  I'm going into the bedroom so they don't overhear me."

I could hear her thunking gait and then the door click as she closed it.  "There now.  Did you know that (R3) is threatening to file a lawsuit over our book?"

She was talking about THE NORTH SIDE OF DOWN, our story about how Amanda, who  has Down syndrome, was abused by some of our family members and pulled into a guardianship dispute right after our dad's death.

The irony of the timing, of course, was not lost on me.

"How do you know this?"

"She sent an email.  She threatened to sue me, my guardian, and you."

"Don't worry.  Our lawyer said she's got nothing."


"I thought so.  But my guardian is very upset about it."

"Tell him not to worry.  We will handle it.  Did you see your face on the front page of the newspaper?"

"YES!" she squealed.

"YOU'RE FAMOUS!" I roared.

She laughed and we shouted together about this wonderful experience of being co-authors, partners, and having our own book. 

"We tell it like it is!" she added.

"Yes we do!  And hopefully it will help someone else."

"I hope so, too," she said.

After our talk, I gave my attorney a heads-up about the lawsuit threats.  We know there is no case.

I was irritated, though not surprised, that Amanda is having to go through this after all she has already endured.  Terrorism, I realized, comes in many forms.  The narcissistic need for control surpasses all rational thought and will usurp an otherwise peaceful existence.  The answer, of course, is in changing nothing.  Stay the course.  Keep writing, or drawing, or whatever it is you do.  Film is forever.  Pictures are forever.  Stories are forever. 

If you don't want to be remembered as a jerk, then don't be one.  Terrorism will be exposed for what it is, even when the victims are artists, or animals or people with disabilities.   Expression is life.  As Amanda said, "We tell it like it is."

How To Say Goodbye - With Cats

My best friend is dying. We met in 1989, and became daily companions. But after 8 years I had moved away, and we had seen each other sporadically thereafter.  Now that the cancer is taking its toll, of course, I wish I had put more energy into calling her.  Whenever I did call, she would fire questions at me.  How did my gallery show go?  What is happening with the baby horse?  How is the writing coming? 

 

I am learning the sad fact that the current trend is to resent this type of inquisition.  It's been labeled, "Interviewing." This stems from the habit of questioning for information to use as an arsenal.

 

But we were never like that.  The quick exchange of information is a treasured thing.  My friend Rita is an excellent listener, with a razor-sharp mind and ravenous curiosity.  She is a great lover of animals, especially cats.  She had established a cat rescue in Ann Arbor, called Mosaic Feline Refuge, which she kept open for 22 years.  They finally closed this spring.  They couldn't keep up the time, energy, and the vast expense of caring for and surgically altering and then homing hoards of roaming house cats and kittens.  "I just felt like I never did enough," she told me.

 

"That's because you see the bigger picture," I said.  "But what are the numbers?  I mean, how many cats did you save?"

 

"I don't know.  I'm sure they're logged somewhere."  She sighed, a futile huff acknowledging the vastness of an unending problem.  I thought the numbers might make her feel better.  After all, one saved cat can prevent literally thousands of unwanted kittens.  And Rita had saved, certainly, thousands of cats.

 

I had called her a week before Christmas, because I needed a name for my own rescued kitty.  Rita was the first one that came to mind.  She is endlessly creative and names all her cats and dogs after food.  Over the years she's had some real classics -- Toast and Trifle, Lamb Chop and Wafer.  But her husband returned the call and told my voicemail that she was in hospice and hopefully coming home in a few days.  He didn't know if she would want company.

 

I called back, thinking I would be able to maintain composure, and then left a sobbing mess of a message on his answering machine.  I didn't know what to say.  I stammered that I wanted a name for my kitty.  "He likes his belly rubbed!"  I wailed.

 

I was able to finally talk to Rita yesterday.  She was home.  "Chuckles," she said immediately.  "You know, those candies that come in all the colors?  They stick -- and your guy has stuck."

 

The moment she said it, I knew, of course, that this was indeed his name.  I had found this silly ornament on Christmas Eve, a tiny handmade kitty that looked like my kitty, but it was wearing a clown hat.  I brought it home and put it on the window sill next to the wooden chicken.  Rita, with her uncanny insight, had called out the name "Chuckles", and that ornament says it.  Chuckles.  Chuckie.  Chuck Chuck.  A final gift from someone who has already given so much.

 

 

When she answered the phone, she sounded down, but the more we talked, the more she seemed like her old self.  We laughed and talked about cats and dogs, and Clifford and Trudy, and their new little brother.  She asked if I was riding him yet.  "No!" I said.  "I don't bounce like I used to!"

 

"I understand that," she said.

 

She asked about my new book, THE NORTH SIDE OF DOWN.  "Any way you can send it to me?"

 

She is a voracious reader.  She has devoured everything I've ever written.  She said, "Everyone's been sending me books!  You wouldn't believe the stacks of them around here.  I've been telling people it's the only thing I can still do."

 

I was so anxious for her to read this, because she knows Amanda, and she has her own history with family dysfunction.  Her opinion is so important.  I'm working on getting a copy to her ASAP.  I know at this time in life, every day is precious.  While we talked, I kept wondering if this would be our last conversation.

 

I wish she wasn't going.  But at least, this time, I had a chance to tell her she was dear to me; she was like a sister.  No, better than a sister.  She just laughed and said, "Yeah, you're family."

 

Through the whole conversation I worried that she might be getting tired.  But she rattled on and on, laughing and chatting.  I was driving to a friend's house and when I finally reached my destination and regrettably had to hang up, we both said, "Bye!" quickly, just like always.

 

There comes a point when there is nothing more to say, and yet so many things to say.  If I could have a friend like this for the rest of my life, we would never run out of things to talk about, or run out of questions.  I hope I can help her though whatever remains of her lifetime.  But the irony is, in reality, she is helping me.

 

 

 

 



The Interview, The Thugs and The North Side of Down

Creativity seems to attract bullies.  Like many other movie buffs, I have watched with interest as Seth Rogan's new film, "The Interview" was yanked from its schedule, caving to apparent non-specific threats from an angry Korean bunch.  One could only feel the pride of patriotism when Sony was verbally spanked for this decision by everyone who mattered, including the likes of George Clooney and President Obama.

In what amounts to either the biggest international scandal ever caused by a film, or the smartest publicity stunt ever concocted, "The Interview" is due to release right on schedule.  But the message is clear:  We don't negotiate with terrorists.

While this scenario was unfolding, a similar situation (on a much smaller scale) was happening in my own life.  However, "The Interview" is a work of fiction.  Our story is all true.  On Thursday, December 18 at 9:14 pm, I received a barrage of text messages from a family member.  "I strongly recommend that you remove, 'The North Side of Down' from public review.... Others will strike back."

They went on to say that Amanda would lose her guardian, and I would lose all assets including any horses, dogs and vehicle, and face potential jail time. 

Amanda and I had anticipated a reaction like this.  After all, our story unfolds within a volatile, belligerent family.  But we had decided that our message was too important to ignore: That people with disabilities need to have a voice.  That it is important for people to get their affairs in order, to make their wishes known in a legal, undisputable way.  That just because someone is a blood relative, they don't need to be in your life.  That no one has the right to take your happiness.  That real love can withstand anything.

She knows I have a lawyer standing by, and that our manuscript was scrutinized with a fine-toothed comb before release.  As my attorney said, "The truth will set you free."

I waited through most of the texts, which went on and on.  Then I replied with, "You had better treat Amanda with nothing but kindness and respect from now on", and, "Please stop contacting me."

After the texts stop coming in, I looked around at my four dogs, sprawled around the room and panting happily, and wondered how in the heck they qualify as "assets."  Have I missed something?

Because Mean People Suck

 

I have a sweet friend who is slipping away.  Even though I haven't seen her in a year's time, I can feel her spirit leaving.  It might be because my consciousness knows she is going, and I am becoming resigned to the idea. 

I met her in 1989.  She is a great lover of animals and a champion of homeless cats, especially.  She is a tremendous patron of the arts.

But she is fragile.  The abuse she was witness to has hit her hard.  She was bombarded with dysfunction in her family and, probably because of her involvement in rescue, she had a high number of encounters with jerks.  Her sadness pervaded and there was always an air of desperation about her; an energy of forced attempt at happiness.

She wanted to die for a long time, but she was resigned to living.  Finally, cancer is having its way with her.  And this is our loss.  The world is losing a tremendous benefactor, a vessel of generosity.

Yesterday I had an unpleasant encounter with an unhappy person who oozes hatred, who puts her energy into twisting words and facts in order to trick people and fool people and cause dissension.  I am faced with the age-old question:  Why are the creeps allowed to stick around, while this beautiful, educated, kind hearted friend's life is cut short when she is barely 60 years old?

Because mean people suck!  They suck the living life blood right out of you.  They suck your energy.  They suck away your happiness and your positive thoughts.  They spread misery because it is all they know.

This is why the kind-hearted often succumb to disease, while the evil people forge onward.

Evil people will kill you.

I learned a valuable lesson from my sister Amanda, who has Down's syndrome, and recently went through a horrific time following the death of our Dad.  In the midst of bad behavior among her relatives, she stayed focused on what was important to her:  Love.  She was somehow able to shed all the abuse and hysteria that was heaped upon her, and concentrate on the thing that mattered most:  Her love for her family.

Now with my friend's demise, I am reminded again how important it is to turn away from the negativity dished out by those who thrive on it.  Concentrate on people who make you laugh, who love you, who are grateful for the time here.  Life is a brief and precious gift.  No matter who someone is, be they blood relative; be it a sibling or a spouse or a parent; no one has the right to steal your life away.  Get rid of the jerks; move on; stay focused on those who are kind, who have empathy, and who know how to love.  It's never too late to learn to truly live.

The North Side of Down

 

 

"There are two powers in the world; one is the sword and the other is the pen. There is a great competition and rivalry between the two. There is a third power stronger than both, that of the women."

- Muhammad Ali Jinnah

 

It has been a rough couple of years:  Rougher even than my divorce, or the subsequent foreclosure of my home.  What made the past few so difficult was the loss of my parents, magnetized by the suffering of my poor sister, Amanda.  She has Down's syndrome and became the object of a feud between two siblings vying for guardianship.  Amanda had made her choice, but the entire family was still dragged through an excruciating legal process that lasted for nearly two months, immediately following my Dad's death.

 

During these weeks I devoted nearly all my time attempting to comfort and reassure her.  Though terribly depressed, grieving, confused and scared, she handled the situation with tremendous dignity.  She handled it better than I did.  I was furious.

 

Amanda is in her forties.  She spent her whole life living with my parents in the remote Northern Michigan village.  She was their buffer, their companion, their servant (often unwilling), and their endless source of entertainment.  Amanda is a brilliant wit and, since she is universally underestimated, her snappy one-liners can ambush the innocent bystander.

 

For instance:

 

Me: Did you have a good birthday?
Amanda: Yes.
Me: I would hope so. THREE birthday cakes, jeesh...
Amanda: Yeah. Tomorrow it's back to normal food. Snickers and Milky Way.

One thing Amanda and I have in common is that we both love to write.  During those terrible weeks in 2013, we found solace in sharing our thoughts, and putting words on paper.  Even then, I saw the start of a book happening.  We were living it.  Every day that we were together, we made notes.  Often Amanda would initiate these sessions by saying, "Let's work on our book."

It brought tremendous comfort to both of us.  Now I am finding that most memoirs having to do with Down's syndrome are about babies, written by the parents...  People reeling from the reality of how their life will never be the same, and not in ways they expected.  But Amanda's story is one of later years, and hopefully will serve as a warning to folks about getting their affairs in order.  I hope that this story will spring from the ashes and help someone. 

The manuscript is in the final editing stages now; our story is told.  We are searching for a publisher, but teetering on the brink of indecision, as there are so many self-publishing options available.  Please follow us on Facebook for regular updates.

THE NORTH SIDE OF DOWN will describe, as no other book has, what life is like growing up with someone with Down's syndrome. It will show how sometimes those with the softest voice have the most to say. It will show how appearances can deceive, not only in those who seem simple, but in those who seem the most loyal. It will examine how the legal system can paralyze a disabled person in the wake of the loss of a guardian. Perhaps most importantly, it explains the concept of true forgiveness.