Hush hush

It has been 3 years since I heard the door close on a children’s behavioral unit and left my son there for assessment and diagnosis.  It was the singularly the most scared and vulnerable I have ever felt.  Even though I knew these doctor and nurses well, I had been working with them for half a year as a chaplain, I could not control what went on behind those doors.  I was powerless.

Many of us feel the same way.  The diseases and illnesses that attack us every day sometimes render us powerless.  One thought continues to plague me though.  I have watched as tons of my friends, and as I age, tons of my classmates battle the ravages of cancer….an all consuming claim on mind, body, and soul.  I watch as people I know fight and fight, and rally, and win.  God Bless them!

I have also watched as tragedy upon violent tragedy happen across the US in our public places—schools, malls, movie theatres.  The list seems endless.  I have watched as the number of people without homes increase, I ask myself why.  I watch the news as violent events happen and the first comment made is “oh, they must have some kind of mental illness”  I have watched as people will do things which people do not like.  The response is almost always, “oh, they must have some “issues””

Wait!  How come no one treats other illness as a hush hush swear word?  It’s not as though depression is on the same level as “The name which shall not be spoken”  By the way, it’s Voldemort.  See, I said it and the world did not come to a screeching halt.  Good thing!  Whew!  I thought I was a goner there!  😉

Seriously though.  I want to unpack this concept a bit.  We are so accustomed to hearing of the battles of the seeable illnesses.  As well we should.  The fight is real, it is fierce, and requires everthing of the person diagnosed.  They are not the only ones diagnosed and fighting, it permeates the whole household.  Ok.  If that is the case, let’s transfer that to the illnesses which are not as readily seen.

The rate of persons diagnosed with a mental illness is skyrocketing.  As I pen this I imagine all the instances mental illness   to the top of a list.  How many of us become agitated when the weather turns gloomy for an extended period of time?  Seasonal Affective Disorder… Do any of us suffer anxiety over speaking in public, taking tests, heights….?  Those are better known as a phobias–psychologically defined as a type of anxiety disorder.  This applies to almost every one of us..me included.

I write this as I watch my oldest son twirl a piece of hair on this forehead as he turns circles on his knees in the middle of the livingroom floor.  Reminds me of the old days with a sit and spin…..only this will go on sporadically for hours, just after he attempts to wrestle our pug—resulting in a scratch on his armpit, which will enrage him….what he will not be able to realize is that it was the wrestling with the dog which brought about the scratch in the first place.  He will not clue in to that.  I watch him everyday.  There are days I cheer as loud as I can (silently) that we have had a good day.  There are other days that I hang my head in near defeat…wondering what more I can do….what I could have possibly done…..if there was a way I could take this from him.  I can’t.  I have my own to manage…..

The frustration, if you will, is when horrible things happen (and they are horrible) and we jump to a conclusion of a mental illness which HAS to explain the whole situation.  Wow!  I was not aware we could do that unless all of the research has proven without a shadow of a doubt, that a mental illness is the sole reason.

Take ADHD.  My son is diagnosed with this.  If you do not believe me, spend a weekend with him without his medicine.  You will be exhausted after 2 hours….guaranteed!

I live and love for this kiddo with all that I am.  He drives me nuts…or rather his illness does.  I can never determine what will set him off in a flurry of activity….I rue the days (many of them) where he is up at the crack of dawn, running around the house screaming because he has too much energy and he does not know what to do.  Mornings are hell.  I do not say that lightly.  His ability to transition and focus his energy makes organization difficult.  Mom does much behind the scenes to smooth over anticipated rough spots and tells no one the worry she holds as report cards or conferences happen each school year.  I cringe when I wonder about his friends at school. Some understand him, embrace him, others claim he is odd and weird, and wash their hands of him.  I cannot control that.  Nor can I control the unspoken hurt I see in his eyes when his younger brother is invited to outings with his own friends…and he is not.  Mom again does much behind the scenes to set up play dates so the situation is a bit easier.

Take the family who struggles with Autism.  The hurt, the frustration, the fatigue, the vigilant watch for a change in communication.  I have watched families lock arms and walk boldly into what that diagnosis means.  One of the awful realities is that often families feel like they have no one to turn to.

The isolation, hurt, frustration, the hope and strength it takes to move forward is incredible.

Ask any of those famillies…ask me if I ever believed that my son would ever hurt anyone—illness or not. When we cannot find an immediate answer to a tragedy, it seems unfair to pin it on one of any number of “explanations.”  Reminds me of the lyrics from “Kill the Beast” in Beauty in the Beast.  “We don’t like what we don’t understand, in fact it scares us.  So, kill the beast.”

I think back on that night 3 years ago and the heartache I felt as I left that hospital.  I watch the facebook posts of fellow parents, some I have met, some I have not, who are bravely walking in worlds which have no road maps.  There is not an easy solution, not a course of meds or surgery which can work in tandem bringing about an end or remission from something.  It is there….everyday no matter the day, holiday, or special event.  What surprises me is how few support methods are available for those in the midst of walking in these worlds of mental illness.

Sit down with a parent of an autistic child, a child with ADHD, bi polar, depression…the list grows.  Sit down with a family of an alzheimer’s relative.  Ask them how they feel watching and waiting, hoping and praying.  Ask them the questions, hear the answers.  Ask those who can articulate what having that illness means…ask them about their world…what does it look like, feel?  What do they hear?

The double diagnosis my son has scares the heck out of me every time I go back to a med check.  In a giggle the psych dr told me last time, “we knew he was one in a million….he is just that.  Every time we think we have it explained, he throws us another curve ball.  He will rival every box we try to put him in, he will never fit a true diagnosis.”   That is great and scary at the same time.  My son is one in a million….yes, yes he is.  There are times, like right now…when I wish he would fit neatly into textbook diagnosis.  It would provide answers and a more complete path of treatment.

For now, we move ahead, thankful that so far we have only had 1 hospital visit in 3 years.  If there need be more, I will not hesitate.  I will never stop advocating for him and others with mental illness.  I will never stop looking for ways for families to seek comfort and strength from one another and others shouldering the same burdens.  I will never stop, in the non-profit in which i work, look for options for those with diagnosed illness to find other options of walking through their illness.  What about the impact of a teaching garden to reduce stress and anxiety—re-focusing energy or providing hands on work which aids communication and learning?

I write each year around this time to honor him….my son, the light of my life–one of 2 reasons I am a better person.

shalom,

Moving Furniture

  Warning:  this one is from the heart, that is all I can say.

I posted before that my eldest son spent some time at Avera Behavioral last year.  I was honored to be able to work along some wonderful people there as Idid my Chaplain hours.  My life was forever changed by the people, patients, and atmosphere….I remain thankful for who they are and what they spoke into my life.–whether they knew it or not.

Every 8 weeks or so, we have to take my oldest son to his psychiatrist for a med check.  This is the first time that we are keeping with the same litany of meds since we started.  It is a roller coaster of emotion and a constant trial and error.  I hate it.  I hate the drain on time, resources, energy, and what it does to us personally.  My son seems rather unaffected….he goes in, happy as a clam and willing to tell his Dr. how he is feeling and thinking.  I am grateful for that.  I am also grateful for the Dr.  He is kind, thorough, intelligent, and responsive.  I do not like having to see him every 8 weeks.

I know that there are some out there that see hospitals and doctors every stinking day….it is not any more fair.  What I had been building in my head as of late was spoken to yesterday.  Now, there will be some that will read this and be instantly angry with me.  I guess that is ok, I cannot control that.  I am writing because this is a way to vent, and rearrange some of the furniture in my head.  My invitation are to those that do feel angry or irritated that I would post such a thing….I invite the exploration as to the anger. ‘Nuf said.

As per last conferences I skipped and danced  down the hall as I saw in black and white the progess my son has made in the last school year.  He has not leaped the 4-4.5 levels in reading—they were always there.  We are just now seeing some resolution to the hyperactivity we see.  When last year he could not even sit still long enough to take a one minute timed reading test, this year he has surpassed it and tripled his scores!  The school is seeing what we always knew to be true; we have an extremely gifted child on our hands. 

Wait….it is not just the ADD that presents an obstacle.  There is also the issue of mood swings, hyper mania, impulsivity, inappropriate conversation, and obsessive thoughts.  Of these he is plagued.  After his initial hospitalization, there was talk of Autism or Bi polar.  As time has progressed, the diagnosis for Autism has diminished as we understand the scope of some of his other challenge areas. 

I asked the Dr to speak boldly and plainly.  He did.  He asked my biological pathology.  He knows I am adopted and as of last April, I know definitively what my biological background entails.  NOTE!!!! this has nothing to do with those that adopted me!!!! This is uncovering the genetic link that may be present, and it is.  Within my family tree is mental retardation, depression, suicidal ideation, anger issues, severe developmental delays, manic depression, and PTSD.    WHAMO!@!!!!!  Note  this is not to describe me!  After many batteries of tests, I present a clean mental profile!  Isn’t that scary!

So, take that pathology and combine it with an ADD male child with an extremely high intelligence, intuitive and perceptive understanding and we have the formula for some difficult moments.  As the Dr talked yesterday and I watched my son fixate on telling the Dr that sometimes the dog likes to have sex with butts, I cringed.  NOOOOOO !  I looked at the Dr, and he confirmed what I already knew.  9 out of t10 times with a pathology such as mine and what my son brings to the table…the diagnosis Bi polar sticks.  He mentioned 90-95% of the time, with this combination, it is unlikely to avoid this type of problem.

DAMN DAMN DAMN.  Makes sense tho.  The blow ups, the changes in mood that come out of nowhere, the high levels of frustration that give way to violence and then berating himself.  I have watched it all. Damn, not my son–not anyone; but LORD, not my son!  Not my baby~

Some out there are cursing me for what I am revealing…ok.  Dear readers, I am a mom, a daughter, sister, friend, confidante, wife, master’s graduate, community leader and advocate, writer, and public speaker and none of it can take away the hurt.  None.  No matter what I achieve, how much I plow ahead and work, it will not alleviate the problem.  It will not take away the hurt I feel at a diagnosis that will likely increase as he ages and matures.  I want to solve it, take it away, and make it mine.  I can’t.  While I hold no diagnosis other than anxiety and a smattering of personal insanity…(that is a joke), it skipped the me generation and landed on my son. DAMN.  I want to find a safe place and bawl like a baby and I want someone with power and authority to tell me it’s gonna be ok– and they can’t.

I have to be the one to watch, listen, pray, and advocate on behalf of my son, and I will.  There is no other option.  However, there are moments, dear readers, when I am so tired and exhausted that I rue this motherhood gig.  There are times I am emotionally tired enough to tune out the world and sleep for a weekend….when my sense of being “on” all the time has to give way to release.  Those are the times I wish I was little and someone else called the shots for a while.  Those are the times I feel vulnerable and small….and yet I know I am always protected and seen.  Yes, that was a faith reference.

Why did I post this?  Who knows.  Will anyone respond?  I know not.  It was a comfort to hear from the Dr that there was nothing I did during my pregnancy that caused this.  There is no other blame that can be laid.  He laughed when I mentioned some of the struggle…thinking that I could have done something to cause this is just bad psychology.  As for any other physical anomalies that would trigger such a diagnosis….they don’t exist.  It is the tendency of our society to find someone or something to pin the blame to when we don’t understand a situation, and mental illness is the number 1 most stereotyped issue present.  We are talking about ADD, and autism and the spectrum of autism for young people, and we should.  The fact is, we are not talking about Bi polar and its links and this leads to isolation, loneliness, and misunderstanding.

So, there it is.  I heard it yesterday….sat with it most of the night and found a moment of quiet as I listen to the fish tank and drink my chai tea.  Be gentle with one another….carry with and for each other those burdens which we know would overwhelm….we are community, let us start to understand what that means.

Shalom,

cahl

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