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,

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1 Comment (+add yours?)

  1. Dawn
    Jan 04, 2014 @ 09:11:52

    I just bought a book and I’m not too far in yet, but you may want to read Healing ADD by Daniel Amen M.D. (It was on the new release areas at Barnes and Nobel.) It has some interesting things for those with ADD and ADHD that are supposed to help “heal.” While your son has more than just ADHD, I thought you may be interested in reading it as it has natural healing suggestions in additional to medical. (Dr. Amen has 2 children with ADD, so he has lived with it in addition to treating it.) It making more sense to me than what I was getting for information when we had been told our son had it and what we could do for it.

    Reply

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