Tuesday, August 26, 2014

Robin Williams

Now we all have a great need for acceptance, but you must trust that your beliefs are unique, your own, even though others may think them odd or unpopular, even though the herd may go, [imitating a goat]  "that's baaaaad." Robert Frost said, "Two roads diverged in the wood and I, I took the one less traveled by, and that has made all the difference." Dead Poet's Society

One of my favorite Williams movies is Dead Poets Society.  It came out when I was 21 and in college, and it was one of the teenage angst movies that I love and still smile when I think of it.  I also love this quote from Robert Frost, and I hope that I can emulate that in my own life.

I was in shock when I heard of Robin's death.  As the days passed and I heard more of his struggles and the gruesome way he died, I wondered why?  I knew he was depressed.  He struggled with it for years.  I have too.  But I guess I thought as he was older he was past the impetuous age of youth who make such senseless decisions.

As people speculated and tried to answer that very question, more questions seemed to arise than answers.  All these questions and no answers.  I hear of celebrities dying, and the older I get the more commonplace it seems.  Usually they die from an overdose or old age, so it is no surprise to me.  Sad, but not surprising.

But this time, it wore on me. Maybe I felt his pain, as a fellow long-time sufferer of mental illness.  Maybe because I know the hopelessness that he must have felt.  But I also felt for his family.  How could he do such a thing to them?  I know how suicide causes such great pain and grief that never totally goes away.  I have seen it.  There is no peace for those who are left behind. 

So I guess I write this in the hopes that if anyone is depressed and wanting to die, get help!  Remember, there are those who love you and it would break their hearts if you made that choice.  Even if you think you'd be doing them a favor, you aren't.  You will bring more pain.  So get help.  Tell someone.  Take your meds.  Seek support. Don't give up.  There is always hope.

After the first time I got remission from my depression I thought I would never be depressed again.  I was finally healed.  But then I got depression, again.  I soon realized that I couldn't hope that I would never be depressed again.   But I can have hope in the only One who can provide that: Jesus.  God is with me.  He will never forsake me.  God is in control.  God sees me and hears me.  That I put my hope in.  Because people come and go, through no fault of their own sometimes.  It is a part of life.  But God is there, always. 

It took me a long time to realize this.  Even now I struggle with trusting Him.  I guess it is in my nature, maybe every human nature, to not trust Him.  To trust only myself, to want control.  But I know there is little I can control, even in me sometimes.  I can't straighten my spine.  I can't make myself not be depressed or anxious when I am in that deep pit of despair.  All the well wishes and prayers and what not in the world can't change the fact that I have a long family history of depression and anxiety, and sometimes meds are necessary.  And that is OK. 

Mental illness is still so stigmatized, I actually feel angry when people judge it.  I live with it.  It is hell on earth!  I wanted to die many times growing up.  But I was too afraid of death to actually commit.  I just wanted to wake up in the morning with a new life, like a fairy tale.

But I have found healing.  Through meds, support, family, church, and most importantly, God.  There is hope.  I have seen it.  I have lived it.  Don't give up.  Life is too precious to end.  There is a purpose for your life.   You do have meaning, value, and worth.  Your life means something.  You are here for a reason.

Through this terrible tragedy, I can only hope that at least one person will not give up .  I hope that person will make a call, reach out, and find help.  I hope that person wakes up to a new day.

Tuesday, August 19, 2014

A Stranger on this Planet

I was born with Klippel-Feil syndrome (KFS).  Named after two doctors who first discovered it in France in the early 1900s, the main characteristic is fusion of the neck before birth.  I was also born with a cleft palate and hearing defect.  The doctors didn’t want my parents to see me.  Instead, they wanted to stow me away in an institution.  They informed my parents that I would die or become a “vegetable.”  My parents ignored the so-called professionals’ dire news and took me home after a month in an incubator.

Because I was so small when I was born, the surgeon chose to wait until I gained some weight to operate on my cleft palate.  I couldn’t suck, so my mom had to use a syringe-like instrument to pour milk down my throat.  After six months, I had the surgery.  I had a second operation in my mouth when I was eight years old to correct my speech.  Until then, no one but my sister could understand me.  She was my interpreter.  Unfortunately, this second surgery caused me to develop sleep apnea, of which I didn’t know I had until my mid-30s.  I also couldn’t breathe through my nose or blow it.  I used a mini turkey baster-like device to suck out the nasal discharge.  When I became an adult I was finally able to blow my nose, although I still can’t breathe through it.

In my elementary years I developed kyphosis, like a hunchback, so I wore a brace that was a metal cage for my torso.  The metal put a hole in every one of my shirts.  I wore that thing for five years, twenty-three out of twenty-four hours a day.  It didn’t hurt me, but it was a lazy excuse for bullies to tease me.  I paid them back by telling them to put their finger under my chin.  Then I squished it between my chin and neck brace.  Ha-ha!  Sweet revenge.

In my teens I developed scoliosis, so I wore a muscle stimulator at night, every night, for two years.  Rubber pads were put on the shoulder blade that stuck out because of the crooked spine pushing against it.  The pads connected to an electric box that would give a quick “shock” every minute to press this shoulder blade against the spine, to keep the curve from getting worse.  If the pads weren’t put on right, it felt like a bee sting.

I also developed an underbite over the years, so much so that I couldn’t chew meat or hard foods.  I had jaw surgery as a teen, awake since I couldn’t be intubated.  The surgery lasted four hours.  I remember the saw that cut the bone, which vibrated my head so much that I feared I would pass out, if I didn’t focus on one spot on the ceiling. The saw sounded like a drill, and for years after that I felt nauseous and dizzy every time I heard one. I had nightmares years after of losing my teeth, or  my jaw falling apart.

Finally, my hearing loss.  I was born with some defect in my right ear.  As time went on, I had recurrent ear infections so I had to have ventilation tubes put in my ears.  I still do, as my Eustachian tubes, the connection between the ear and the throat, are unable to properly drain.  No one knew about my loss until I was three, my being able to adapt so well.  In high school I acquired hearing aids.  Finally I could hear a cat’s purr or a frog’s croak. 

Since KFS was so rare, I felt like an alien from another planet that got lost on my journey and found myself in the wrong place.  Seven years ago I started an online support group for others like me.  We have more than a hundred members, about ten regular contributors to the discussion.  Now there are other KFS groups online for other languages.  The worldwide web helped us come together in a way never thought possible before, and for that I no longer feel alone or a stranger on this planet.

Thursday, August 14, 2014

A Bullied Life

My first day of school was my first experience of bullying.  I remember being excited to make some friends, so I chattered on to the boy next to me.  After a while of him not saying anything but just staring at me, I started to feel self-conscious.  All throughout my elementary school career, whenever he saw me, he stopped whatever he was doing and stared.

Another boy in my Kindergarten class picked me up and swung me around the room.  I screamed and cried for him to put me down, but he kept swinging until I supposed he tired himself out.  The teacher never intervened.  The boy’s name was Robbie.

A third boy on the bus tortured me as well, all throughout those grammar school years.  I don’t remember what he did, only that when we moved after fourth grade, I rejoiced to never have to suffer his abuses again.  His name was Jack.

Countless other boys in grade school mocked me by lurching about like monkeys.  I didn’t know why they did this; I didn’t look or move about like a monkey.  Nevertheless, I hated it, and no one stopped them.  I cried too many times to count, even more frustrated at the lack of assistance by teachers.  My only solace was the library, or the nurse’s office. 

In my first year away at college, I had bullies in my dorm.  These were girls this time.  They physically bullied me, the first time I ever experienced that.   I was always smaller than everyone else, so I felt powerless even more so in being able to stop them. 

I never knew what to do about bullying.  My mom told me to ignore them, but that didn’t stop them.  Only one time I stood up to the boys, I kicked them in the shins.  I guess I didn’t know yet about inflicting pain in the groin area.  In college, I only stood up once there too.  After a girl shoved me into my closet door, I spat in her face.  I am still surprised that I managed such a trajectory.

After the suicides in the school district that I attended and still live in, I grieved for the students who felt so powerless and lost that they believed there was no other option.  I know that feeling.  If there is no consequence, if there is no support, bullying will continue, even into adulthood and the workplace.  No child should have to suffer this way.  I know my parents did all they could, but it was a time when children with disabilities were first integrated into regular classrooms in public schools.  There were no services for kids like me.  We were on our own. 

Some say that bullying is part of life, but I say it doesn’t have to be.  Who would want their child to suffer needlessly?  Who would want to live in a Lord of the Flies world?  I don’t want that for me or for future generations. Even though my niece is homeschooled, she suffers bullying in her after school programs.  I want to protect her forever from the cruelness of others, but I know, like me, we will suffer this all our lives.  We live in a world that doesn’t embrace difference.  It is survival of the fittest. 

But I also know that we have to be victorious and rise above the behaviors of others.  To retaliate in violence only escalates it.  I have tried to teach my niece that it is cool to be different.  We are fun and interesting, not boring.  I have tried to teach her to stand up for herself.  I hope that she will always have confidence, and not be like me, living in fear for most of my life.

Thursday, August 7, 2014

My Obsessive-Compulsive Disorder

I follow my sister Lisa around like a shadow.  She walks out the door; I turn off the light, the stereo.  I hate to waste electricity.  I follow my mom around too.  She leaves a cupboard open, I close the door.  Open cupboard doors are a recipe for disaster.  When alone, I check the stove, make sure it is off.  I am petrified of fire.

I check the locks on the door, lock-unlock, lock-unlock ten times.   On a good day.  On a bad day, the sets of ten go higher.  I glance at the burglar alarm to ensure it is on, ten glances.  Again, on a good day. I don’t want someone to kidnap me.  Prevention is worth all this work and energy that my mind expends.  A sinful thought, quick!  Think something good, I don’t know what.  After all these years the transformation is so automatic I can’t remember.

When I leave a room, I check the light, flip off-on, off-on, ten times.  The same good day/bad day rule.  Everything in its place.  After my mom dusts, I place everything back in its proper place.  Not a knick-knack a millimeter out of order.  Throw off the sheets every night; make sure there are no insects lurking in there, waiting to terrorize me in my slumber.   All my books in neat stacks, all my clothes neatly folded.  Not a typical kid’s room, nor a teenager’s. 

I have an aversion to fuzz, string, yarn, and lint.  If I see it, I feel nauseous.  I have to rid my sight of it.  I pick it up and throw it somewhere I can’t see it.  Out of sight, out of mind.  I have to yell, scream, or make peculiar noises to rid my mind of the sight.  I don’t like odd numbers, everything in evens, please. Toiletries must be oriented to the front, nothing touching.  Bathroom linens hanging on a rack must be straight, not a smidgen crooked. 

No one knows this shameful secret.  I can’t let anyone know I am crazy.  Looney. Going mad.  My silence protects me.  No one sees what I do, no one hears.