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.

My Sister, the Author

Our book is published today. THE NORTH SIDE OF DOWN joins the select few books actually written by an author (or co-author) with Down's syndrome.

Amanda has long been a writer at heart.  When she was a baby, she used to climb the stairs and sit with me in my bedroom while I wrote page after page on spiral-bound note paper.  I wrote and illustrated hundreds of pages of horse stories while my patient companion was content to just sit cross-legged on the bed near my desk, watching me or quietly coloring or just waiting.

At that time, I didn't realize the impact this was having.  Amanda was just a baby then. I graduated, moved away to Alaska and then the western states.  In the meantime, Amanda grew up illiterate.  Finally, when she was around 20 years old, I had moved back to Michigan and was spending lots of time with her.  I sat with her in the big gold chair in the living room looking at the back of an Eddie Rabbitt album.  She was a huge country music fan.  I was reading the words to, "I Love a Rainy Night."

She was attentive as always, and I began pointing out the letters and sounding them out.  When we reached the end of each line, we would sing it.

Perhaps it was the simplistic repetition of the song, but I thought she was catching on.

Later, watching a "Hooked on Phonics" infomercial, I told my then-husband, "This might work for Amanda.  They use music, see?"

He wanted no part of spending $200 on that program.  So, I saved my money and ordered one, and brought it home on my next trip North, along with a couple of Dr. Seuss children's books.  Mom and Dad wisely sent the program to Amanda's school.  It not only helped Amanda. but other kids in her special ed class learned to read, too.  When I asked Dad about her progress later, Dad said, "Yes, she is learning, but it's going to be limited."

I will never forget the first time Amanda stumbled through, "Green Eggs and Ham."  I was in tears.  She was 21 years old by then, and opening a whole new door for herself.

From that point on, the household exploded with paper and notebooks.  Amanda was filling every spiral-bound notebook in sight, practicing her writing in her shaky, angular cursive hand.  She copied pages of old paperbacks.  Eventually she began writing her own thoughts; page after page.

A writer was born.

When finally she began journaling after our Mom's death, I asked her, "How would you like to write a book with me?  We can write about our mother, and Dad, and our experiences with the family."

She loved the idea.  We pored over our story, building it one page at a time, editing and discussing and reading to each other.  We lost Mom, and we cried and wrote.  We lost Dad, and we cried and wrote some more.  Our siblings battled over Amanda's guardianship, and we wrote on in determination.  We were partners in a combined effort.  This was our project; our journey.  When I asked her if she was ready to become a published author, she said, "I cannot wait!  I. CAN. NOT. WAIT!"

So the little girl who quietly sat by has become a literary force in her own right.  Unencumbered by her disability, she forges onward.

"Limited," indeed!  ...If Dad could see her now.

Click to Order

Coming December 1

Click to order!

My new book, "The North Side of Down" will be available in just a couple of days. This is a bittersweet time for me, as this is my sister Amanda's story, and it involved a lot of heartache for both of us.  Amanda has Down's syndrome and she lost both of her parents within the space of 3 years.  As if that wasn't bad enough, she became enmeshed in a belligerent guardianship dispute between two siblings.

"The North Side of Down" tells how Amanda bore the pain of this era, this life-changing state, as she was hurtled through funerals, fights, being moved from one home to the next, court cases and isolation.  She managed it all without losing her dignity and in fact, came out smiling.

As much as I am horrified by the behavior of our siblings, I marvel at Amanda's elegance.  It's unfortunate that, due to more legal red tape, I was unable to keep her name on the book as my co-author.  But this is her story, heart and soul.  She will still get 50% royalties and I still expect her to attend events and book signings with me.

Our hope is that this story will give others a heads-up to get affairs in order.  You may grow up with someone, but you may not really know them until the chips are down.  At that point, you will find your true hero.

 

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.

Owl Totem

The owl is the universal symbol of wisdom and insight. Perhaps that is what I am seeking since I have been painting owls all weekend. Today's subject is a barred owl. He sits amid branches that are orchestrated to repeat the arches and angles of his wide-eyed orb.

I envy some of his qualities, most of all his focus. I am scattered in a thousand directions and my body is manifesting the emotional disarray. Mom's illness was just the beginning. When she died on the New Year's Eve that ushered in 2011, Dad not surprisingly went downhill. The first year after her death, he required emotional support and attention. Then last year in 2012, his health began to fail.

All summer, I was plagued with a persistent cough as I delivered him to one doctor after another, in a vain attempt to find the source of his back pain. It was a rough year. I had very little time with my horses, as they were boarded a half hour away. We didn't get to go to Drummond. Dad became more and more crippled with his pain and my frustration levels rose. It was so hard to watch him suffer, while dealing with the never-ending bureaucratic red tape of the medical community.  He had a new pacemaker installed, surgery for bone spurs in his neck, and pain injections in his shoulder. The pain would not quit.

Though I have a huge family with seven siblings, the others were of minimal help, choosing to immerse themselves in the details of their own lives. As seems to the be the wont of many families, they were quick to criticize everything I did. My cough hung on as Dad finally began to have trouble breathing. He was diagnosed with congestive heart failure. I knew this was wrong, and I made an appointment with his cardiologist. Dad became very angry with me when I insisted on having him admitted, but then under the care of a pulmonologist, we finally found the source of the pain. There was a tumor capping the upper left lobe of his lung. It had been hiding behind the pacemaker, so didn't show up in the many x rays we had ordered over the months he had suffered with it.

Dad couldn't stay up in the far north and have treatment for lung cancer. A brother stepped forward to take him in. My dogs were not welcome in the brother's home, so Dad's care shifted to him.  When Dad started radiation treatments, my cough immediately stopped. I was convinced that it was psychosomatic, connected to Dad as I was. After all, my bond with him was the closest of all people I had known.

But the cough was replaced with terrible pain in my right shoulder. I realized that somehow I had torn my rotary cuff.  I couldn't remember doing it, and it brought home the fact that I had not been caring for myself.  At this point, after two years of being consumed by worry and care for a sick parent and disabled younger sister, I realized that I had to find my own life again, spiritually, physically, economically and in every way imaginable.

My faith had been shaken, not only by the experiences of the past couple of years, but by the religious zealotry of siblings who didn't help. I realized that life would never be the same. I could use some of Owl's wisdom and insight now.

A good friend let me stay in her house while she went away for a few days. I knew I had to recover. I decided to begin with the outside. I started lifting weights again and took walks in the snow. I drank lots of water. I sat in the tub for a long time tonight, letting the heat soak into my shoulder, clearing my mind. I noticed the shower curtain nearby had some text on it. It was a Bible verse:  

The LORD will guide you always; he will satisfy your needs and will strengthen your frame. You will be like a well-watered garden, like a spring whose waters never fail. -Isaiah 58:11

Printed on the shower curtain was a picture of an owl.

Hair

A regular social event for Mom and Dad and Amanda is a trip to the hair salon. The salon owner’s dog, Abbey, has known Dad since a puppy and now the minute he walks in the door she starts hitting on him. She wants him to play ball with her. Abbey is a Chesapeake Bay Retriever with a voracious play drive. Dad takes the ball and takes her outside and throws it for her. He also takes Peggy Sue, the Jack Russell, out for a potty break and sweeps up the floor!