Layer(ed) Cake

I  looked back on the last blog that I wrote about my son and chocolate cake.  Something struck me mid week and today while doing my own work I stumbled upon a couple stark realizations.

I was penning a new blog where I opened with the admission that I was a thief.  It was matter-of-fact and final.  It was wrong and judgmental and I directed  it precisely at me.  I was unapologetic and fully willing to take the blame and I’ve done that for the last 41 years.

There was something in that last blog that did not sit right with me.  It was the image of me as kid,  sitting at a classroom desk waiting for birthday treats that did not come my way because of allergies.  I wrote out of what I knew to be truth at the time.  It was truth until I peeled back some layers of the cake and revealed a crumbly center.

You see, at that time I wrote that my parents had forgotten to send to the school treats that I could eat.  I trumped up every excuse in my mind, or truths that I  told myself over  41 years, so much so that any other reality was inconceivable.  I never thought to question it, it was my reality.  Then I  discovered there was nothing accidental or forgetful in their actions.  Nothing.

I have 2 children, and my job as a parent is to make smooth the road to adult independence.  It is my job to advocate, support, cheerlead, mourn, celebrate, and “be” in it with and for them.  It is my obligation to do all I can to arm them with the tools they need to be successful citizens, husbands, and God willing, fathers.  Forgetfulness happens and can be forgiven.  Intentional neglect does not.

It nearly guts me to type those words, believe me, it broke me to utter them today.  Even though I was in a trusted and safe place, the amount of pain I encountered is something I will have to muck around in for awhile.  Even in the midst of that safe space I fought like hell the tears that ekked out, revealing my vulnerability.

Intentional neglect.  That is quite an accusation and one I do not entertain lightly.  But, if I examine the facts, it is the only conclusion.  In this day and age, peanut and gluten allergies are as commonplace as uttering the phrase Common Core. (not getting into that debate)  There are whole tables dedicated to the “non” peanut eater and special menu considerations exist for those with gluten allergies.  It is a given that if one child is affected, the whole class is made aware; every effort is made to ensure that all children feel like they belong and no one is left out.

I did not have that luxury and now I am beginning to feel the full impact of that alienation.  While we did not have the internet or smart phones when I was young, the invention of the telephone DID exist…even if we had to use a rotary dial to make the call.  Parent-teacher communication was available.  There was still snail mail, teacher conferences still happened, a stop in to the school was always welcome.  The fact remains that those measures were not utilized.  That intentional inaction led to my feeling even more ostracized and alone, lonely and afraid in a time when perceptions of school were just beginning to take shape.  I learned at an early age that I did not fit, that there was something “wrong” with me, that I was not like the others.

Edward Kleban, lyricist for “A Chorus Line” provided some words that resonate with me

“Diff’rent” is nice, but it sure isn’t pretty.
“Pretty” is what it’s about.
I never met anyone who was “diff’rent”
Who couldn’t figure that out.
So beautiful, I’d never live to see.

Without knowing it, I adopted this philosophy and claimed it as truth.  It’s wrong and it kills me to type that.

Why?  Because what the hell do you do when you put A and B together (and I don’t do math) and discover the truth you thought you knew and what you had constructed your whole outlook on is incorrect?  Worse yet,  that truth is destructive and unhealthy?  What do you do when you realize that people who were charged with your care intentionally neglected to follow through?  What do you do when you peel back a layer and find that there is no excuse for their actions?

They could have picked up the phone to check in every once in awhile.  They could have brought items in during teacher conferences.  They had a whole host of options.  They chose not to.

My mother told me once that because I was such a difficult child, that I was reluctant to embrace her as my adopted mother, and show her love, she quit.   She quit trying.  I never forgot those words and they ring a different tune now.  They quit–they intentionally quit.

Even now I am rolling that around my head and beginning to question 41 years of beliefs I have and finding myself at ground zero.  I don’t know what to do, and I usually have an intellectual analysis, or at the very least, a smart ass comment to diffuse the situation.  I have none.  When I wrote the words, “I was a thief”, I was writing out of a truth that I believed wholeheartedly and called myself.  I was a thief because I used to take sweets from locations in the house, hide them, eat them, and try to smuggle out the evidence.  Sometimes I got away with it, often I did not.  Each time I was caught I was punished for stealing and sneaking around and taking things that did not belong to me.

You know what?  Oreo cookies rocked then, and they rock now.  I know that because I took them, ate them, and liked them.  Maybe instead of stealing, I was surviving.  Maybe instead of looking at the situation and swallowing that I was a bad kid who stole and lied, I was someone who was resourceful and just sassy enough to buck a system I could not control.  Maybe.

That’s a hefty piece of cake.  But, I think it’s important to pick apart all the layers and see what they’re made of.  I think I owe it to myself.  Because what I’m finding that while the cake is chocolate, and appears to be chocolate throughout, there are pockets and whole layers that are bitter like baker’s chocolate.  I know it’s bitter because in one of my sweets’ forays, I took what I thought to be chocolate from the refrigerator and well, let’s just say, baker’s chocolate should be left for its intended purpose…..for baking.

I’ve thought about this understanding all day today and tried to put it in perspective as I parent my children.  I watched my son inhale a  slice of cake for breakfast and I grabbed a piece too.  I smiled at him as he took his first bite and I smile now remembering how his eyes rolled back into his head.  You know what?  Chocolate cake is flippin awesome—it tastes amazing.  It tastes even more amazing when you know someone made it for you, out of love.  Scratch that. Chocolate cake is FREAKIN awesome (insert the intended expletive if you choose)  You know what else?  I am a flippin good mom……I got to share in this moment with my son and I will never forget it.  My son may, but what I hope he remembers is how he felt when he expressed his needs or desires and they were met.

I thought about my mother in those terms today and for a split second I felt sad; sad for both my parents.  I could try to justify this whole blog by saying I was willful, difficult, unruly, and that I did not get those moments with my parents.  Today, a new layer revealed that THEY did not get those moments with ME.  They chose not to.  They quit, intentionally.

God, I wish I could explain the pain that admitting that brings.  I wish I could walk someone through what it feels like to sit and watch 41 years  begin to tumble as jenga block by block is removed.  I wish I could describe the fear of what happens as each block displacement sets the structure to swaying, wondering if the next removal causes it to topple.  I wish I could articulate the confusion I am encountering as I twist and turn this Rubik’s cube, trying to make sense of a reality and truth that is without explanation.  Worse yet, that that truth is wrong.  I wish I could say that this is easy and there is an instant resolution to the 24 minute “Full House” episode where everyone hugs. wipes away tears, promises, and forgives.

It’s not Lifetime movie night.  It’s not easy, it is the hardest work I’ve done because it requires vulnerable honesty, brutal admissions, and concentrated courage.  And, I’m not sure that I’ve got it.  I’m not sure I’m up for the challenge.

All I know is that today, my fork ran into a layer that I did not expect.  Does it cause me to gag, retch, spit out the piece, throw out the rest of the cake; rendering it worthless?  I don’t know.   Do I look deeper into the piece to find out how much of the cake is affected and do I go back to the recipe to determine what happened?  Do I take the information I discover and apply it to my next recipe?  Do I have the guts to enter into the  original story and create a new reality?  Do I have the balls to allow others to join me in baking a new cake?

Tonight, I iust don’t know.  Ask me tomorrow, I may have a different answer.

shalom,

cahl

Carpe What Huh?

The recent death of Robin Williams shakes many of us to the core, but to the core of what?  What is at the core that rips us of a blanket of security that shields us like a blanket.  I look at the quotes which have been posted, I posted right along with them.  It was not until I was in the safety of my car this morning, did I pause a moment to mourn.

What?  Why could I possibly have to mourn in the death of a star with whom you have never met, yet was soooo impacted by his story relived on the movie screen.  When we laughingly toss  Carpe Diem around believing somehow we have our crap together. How am I supposed to seize the day when I dread going to school?

What, you?  You have so much going for you>>>>   Ah, you don’t remember or encountered me during some of those hellish years.  I remember I used to walk around the block that our elementary was located.  I remember so many trips around there, singing and talking to myself.  I spun the pourings of my heart, of how I knew that I would never be accepted and that I was somehow “weird”.  I knew from a young age that I would never go to prom, (I wasn’t) or to be asked on a real date (it never happened).  I knew in my heart what I thought was real, was in fact real.

I hated everything about myself.  I used to look in the mirror and tell off the reflection that stared back at me.  I hated her.  I wanted her vanquished, I wanted her dead.  Yup, I said that.  I wanted her dead.

That is so hard to write, some believing that at almost 40 I have it together..I don’t–none of us do.

Honestly if you had told me to Carpe Diem in high school and much of college I would remarked some deprecating slam and “beat them to punch”  I knew they hated me, why not beat them to the punch and throw out the comments as bitingly as possible.  If I could turn it so the response was mine, they could not touch me.  Sure.  I beat em to the punch.  You know what happened?  No one, I mean NO ONE wanted to hang with me.  High school classmates would never invite me to their homes ( that changed a bit my senior year..they were wonderful peeps to me)  Collegiate theatre majors dubbed me weird and cautioned anyone who might be a friend that I was not someone to be accepted.  This did nothing but make me hate that girl in the mirror even more.  Trying like hell to see at least 1 production in which I was cast…it never happened.  I still feel the pangs of hurt and rejection in both those scenarios

I remember my junior year especially, it was a  fairly good year.  I faked most people out and those I didn’t I severed those relationships with a biting  remark that left them shaking their head.  I lost many a friend, I still mourn those people.  Senior year spawned hell in every sense of the word.

I did not qualify for Nationals like I had the year before–gotta do it one more time–  In January I lost the one person I had looked up to and idolized from day 1.  They washed their hands of me, refused to acknowledge my existence.  They were friends with my friends ( the same ones I had severed ties) .  They were so damn talented it sickened me…I knew I would never reach that pinnacle of greatest.  But, damn I tried hard.  With every fail, with every second place finish I hated the girl in the mirror that much more.  I scored up a stash of blades, I wanted to be gone…I stashed them and there are still scars that dot my right and left arm.  I am ambidextrous you see.  I could go both ways.  I had bottles of sleeping pills–I worked at a grocery store, no one thought anything of the purchases I made.  Hell, no one thought much about me anyone..I knew it and it hurt like crazy….still does once in awhile.  I remember the night I had not qualified, almost but not quite.  The general smirk of the one who had seen my victory the previous year now watched me lose.  That one stings badly.  That night I also received a letter from the state college to which I had applied.  It was a letter negating my acceptance into their college.  The work that had to be done just to get me there….Finally a scholarship in theatre was awarded so that I could attend…See, if a dept. offered an incoming freshman a scholarship there was little else the Adminstration  could do to negate it.  In hindsight, I think I got it for the sake of another freshman coming in, talented and pretty–so pretty.  I never ever fit the bill, no matter how I tried.

That night I went outside, sat with my big Labrador (who i had spilled most of my life) and held the massive bottle of aspirin in my hand and the sleeping pills in another.  In a fit of anger, I downed a good share of both of them….then fear hit.  An all consuming fear spread over me…..I still do not know what caused me to throw them up–you see I was a talented Binge and Purger, I knew all about taking care of unwanted food—you throw it up.  There were members of my family who watched me do this…it was not to first time…I lost a lot in those years, years I will never get back as hard as I try.

You see, to declare to a person, Carpe Diem…well, that hurts in a place so deep and dark they can’t explain.  How can I seize the day when I so hated and loathed the person I saw staring back at me?  How can I be  joyous when I hated going to school where there are relationships were cut to the quick so that no one would even talk to me…You see, I did it first before any of them had a chance…I held that manipulation like a banner—ha ha ha ha,  I hurt me first before you even had a chance to…ha hahahahah.  The thing is, I wanted them to hurt as much as I did.  Silly me, it hurts worse than I can imagine.  Sometimes the dark rears its ugly head and I wrestle with depression, loneliness, hurt and self hate.  I often see that girl staring back at me.  I see her amid all the good and wonderful people in my, in those who were watching from afar…(they know who they are), amid a successful career and the beginning of some great connections and respect.  I look at her and wonder…what the hell are they thinking…me?  I dunno.  The dreams that I hold are so jam packed with concepts of redemption and reconciliation are as near and dear to me as breathing…..the writing, the speaking, the moments to speak for those who can’t.

Carpe Pencil?  Seize the pencil?  Write the words, speak….ah, if only I were not so terrified of the person I see in the mirror.  There parts of me that grieve–losses in family, friends, opportunities–(prom–you who giggle probably had a date and the stories from them) I don’t and I knew it all the way back to 3rd grade.  Could I rewind the clock?  Many times I say yes ( and tell the one in the mirror to go to hell, I scream it and pray it transcends to the whole of me), then again I think of all the students I taught, the people I speak with, and those who allow me to journey with them—showing me a glimpse of their reality.  Not sure where I stand ( no pun at all Captain)…that is an ever present fight.

Today instead of Carpe Diem, I challenge us all to say Carpe Rogare!  Seize the Question–How are you,and wait, wait, wait for the answer.  You may be surprised at what you hear.

 

Shalom my friends

I am an Addict

There is no way to sugar coat this reality.  I am a drug addict.  I am not ashamed to admit this, but am not addicted in the way you may be thinking.  I am addicted to drugs, that is the truth.

I have taken anti-depressant medications coupled with anti anxiety meds for quite some time now.  As anyone who takes medications like this will tell you, sometimes it takes a bit to get the dosage and the combination correct.  What worked months ago, may not work in the present, for whatever reason.  Constant awareness of body and mind has to  be a top priority as well as continual conversation with the doctors in charge of care.

It became clear this past fall that the meds I was on were not doing the trick.  In order to make a move to a more stable med regimen, I needed to wean off of one med in order to take another one.  There are a number of meds that cannot and should not be quit “cold turkey.”  Extreme care and caution has to be taken to make sure that there are no big time reactions.

Cymbalta is one of those meds which cannot be quit rapidly…one that has to be monitored with dosages lowered at a rate that the body can handle.  No matter how slow you go, the impacts are still there.

I had been on Cymbalta for quite some time and really had no idea how I was supposed to feel.  I felt no different than any other day.  The decision was made to do some tweaking…first I had to wean off of it.

I have never thought myself addicted to anything, not really.  I mean I like my Diet Coke, but I choose to drink that.  If I decided to stop, I could and would.  This was a a purposeful removal of something the body was using and something the mind knew it needed.  Whether it was working to its highest level is inconsequential.  The body had it, needed it, and wanted it.  To deprive the body of this would prove harder than I expected.

I was instructed to wean off at a slow pace, but was also warned that some days would be tough.  Oh my goodness.  Never have I felt more at a loss and on the edge of a dark hole than I did at that time.  I felt constantly agitated, irritable, on edge, borderline bitchy all the time.  I could hear myself saying things, thinking this was not me saying these things, and I could not stop.  I screamed in my head…STOP STOP STOP, this is not you!  Then I would feel bad for saying and doing things I could not control.  There were times I could not stop the thoughts in my head…could not tell whether I was coming or going or how I was going to feel hour-by-hour.

Physically I felt worse than I had in a long time.  My stomach ached all the time, headaches were worse than ever, nothing tasted good, I did not want to eat, could not sleep…the list was endless.  I look horrid, I acted worse.

As my body continued to release the medication and my body attempted to reset, the cravings kicked in full force.  These were not food cravings.  These were the intense desires to feel leveled out..to feel normal-at least the normal I felt when I was on the drug.  I would hold the remaining pills in the bottle, my hand shaking, willing myself not to take one….I attempted half doses….and yes.  There were times I told no one and took one to make it through.  I felt guilty and sneaky for doing so.  I hated the fact that I could feel so out of whack by the removal of one med. I was angry that my body needed it, my mind demanded it, and it felt like I was powerless to stop what I was feeling.

After the physical, the mental mess I was in was not something I anticipated.  I could not form a coherent thought and did not want to.   I wanted to scream and yell and throw every kind of temper tantrum known to man…and in some ways I did.  There were times I did not recognize the person looking back at me, I know others felt the same.  knowing that made me hate myself and how I felt even more.  I could not control it.  I craved to feel level.  So, I caved.  I gave in…then some light broke through.

I was under the watchful eyes of my doctor, her staff and nurses were incredible to me and for me.  They kept close tabs on me, asking my symptoms, let me talk some frustrations out and told me that I would get through it.  I wanted to quit many times.  I wanted to swear and tell everyone around me that I didn’t give a damn about anyone and I would say and do what I wanted.  There were times my skin itched, my mind ached, I could not tell if what I dreamt was real or hallucination….it was hell.

A couple of people finally asked what in the world was happening.  I had told no one except my dr what was happening.  I broke down and told them I was going through a med withdrawal and I could not tell when it would be over.  They looked at me with such relief and concern…I did not expect that response.  I expected them to hate me, I certainly did not like the person I was becoming.  Out of care, they asked why I had not said something before, why did I think I had to go through it alone?  Why did I possibly think that no one would care or want to help me.  Instead of making me feel small and weak, they were there to bolster me, to lend me their strength and love.  They loved me no matter how nasty I became.  In fact, they showed me more grace, knowing that what was happening was temporary.  They checked in on me, they asked questions, they did not leave me alone.  I made it through.  I could not have done it without that collective care.

Sooooo many people do not have that.  I have never been addicted to alcohol or other recreational drugs, painkillers, gambling, or other addictions.  I do not know what that feels like….but I do.  I do know what feeling deprived of something the mind and body needs to feel normal…or at least the normal I understood.  I know what it feels like to be alone, or at least feel like I am alone.  I know what it feels like to sneak around, to have almost every waking moment consumed with how I could get a hit.  What could I do….how can I get it…will anyone know if I sneak one?  Will it matter?  Maybe this is not that big a deal.  Maybe they are wrong, maybe I do need this.  How can I possibly be addicted, that happens to “those” people.

Those people, indeed.

I was sooo lucky.  I had people, when I let them in, who rallied in and around me and saw me through that time.  There are tons of people who suffer silently, never saying a word and beat themselves up for what is happening.  They continue muddling through.  Or they refuse to admit that there may be a problem, unable to take steps to remedy it.

I was so lucky.  I do not know what it looks like to battle an addiction that has been there for decades.  I  do not know how it feels to try and try again…hoping that this time it will work.  I do understand how quickly an addiction takes hold, how strongly it grips mind, body, soul.  I know what it is to feel powerless, succumbing to something stronger than myself, forgetting that I am stronger than this drug.  I do not know what it means to sacrifice everything and lose everything to keep a norm.  I am so thankful I have not had that experience.  My heart breaks in a new way for anyone wrestling with any kind of addiction…it does not matter what it is.  I know what dark and twisty feels like and I know what it means for people to pull me through.  I am lucky.

I am also lucky to know this side of me.  I am thankful to catch a glimpse of what a world encased in addiction looks like.  It is not a place I would wish on anyone.  It is not a place anyone would want to camp.  It is not a place that people hope to get to and remain, no one wants to lose control of themselves.  I think most of us would just like the chance to escape or dull a pain that exists, for whatever reason.  I think many of us wonder what it feels like to feel good…laughingly, lovingly, ridiculously good.

I do not have the answers, but my eyes are open, my mind is cleared….I understand…if only for a moment.  I will remain today and always, Addicted.

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,

4:34

My son  found a journal I had started some years ago.  It dates back to the time I had my first son, I think though, that it may just apply with any child, anywhere.

    Jolted,  awake, the silence ripped open.  I squint, trying to read the numbers on the clock.  They glare red, 4:34 am.  Inwardly, i groan, pull back the covers that held me in dreams just moments ago.  What started as slight whimpering increases in intensity as time ticks.

I pause, straining my ears to hear if whimper give way to sleep.  No sound, I sigh and relax.  Too late, I waited too long, cries split the stillness, amplified by the hour and its lateness.

Void of glasses or contacts, I stumble toward his room. making a quick pit stop.  I take fifteen quick seconds to myself and will him to wait only a moment to two more.

     Retrieving the bottle left in the warmer from the last go around, I am thankful for 2 items:  the light from the overhead stove and organization.  Without them, cries would soon develop into screams.

I wander into his room and make my way to the crib.  A nightlight given to him by his grandmother shine softly to guide me while a CD his father made plays in the background.  “O Come all Ye Faithful” does not sound so out-of-place at this hour.  I smile faintly.

Wrapped in yellow he flails his arms, waiting for security once again.  He whimpers, then quiets as he sees I am near.  Scooping him in my arms, we travel to the livingroom floor where wet becomes dry and I try to snuggle him once more.

It’s a makeshift cocoon and I figure if he feels safe, he won’t mind so much how the blanket looks as it swaddles him.  Settled in our chair, I cuddle him close, he squirms, anticipating the bottle he is sure is coming,

He sighs as I place it within his reach and I feel his whole body relax.  Eyes grow droopy and his breathing softens, he is at peace.  Sated from this feeding we burp and I rock slowly.  I remind myself to take a mental picture, moments like this are too few.  Head propped on my shoulder, he dozes, I rest my cheek against his and I listen.

The house comes alive at times like these. The ticking of the clock, a lone car drives by, the family dog resettling for a nap all reveal themselves.  Against his cheek I feel the smooth of baby skin, cool to the touch.  A slight movement of my shoulder and I discover he is smiling.   Knowing and seeing this causes my face to erupt in a wide grin, and I am gifted to receive another in return.

     Through the stillness, through the quiet, love transcends communication and my heart bursts.  Without words or eye contact, I know love and it is real.  I feel it in my son’s smile.  Tears well behind my eyes as I offer a silent prayer of thanks, praises, and requests for this little wonder entrusted to my care.  Again, I feel his smile and my heart soars.

     He inspires me, this little miracle.  With a look, a cry, a squeal, or a smile, he turns my world on its end.  Sitting here in the dark, I cease to wonder the time.  I find no longer care about the trivial details.

     In a sigh and a smile, my son captures my heart and claims it for his own. Sniffling back tears, I pat his back, and together; we Rock.

Shalom,

cahl

Best Defense is an Even BETTER Offense!

Garden and Greenhouse  www.groundworks-midwest.com

This is a picture of a greenhouse at a public school playground in the midst of Sioux Falls, SD,  The growth, the joy, the learning, and the planning has blossomed in the last five years.  This past September, 2013, began year 6.  On Saturday, October, 26, 2013, the greenhouse which served as the symbol of the first teaching garden sponsored by multiples of local and regional partners, and the non-profit, Ground Works, saw its last day at the pavement locked school.

Students from Northwestern College in Orange City, IA gathered with teachers from Lowell Elementary, volunteers from the neighborhood, and the staff of Ground Works to take down the structure which was originally donated from a Wal-Mart in Pierre, SD,  4 of the people who were part of the original build and dedication donned gloves and dismantled the symbol, which for 5 years has been such a source of hope and pride.

You may ask why this had to happen.  1 word:  Vandalism.

Short, not sweet, but certainly to the point.

A flourishing  garden naturally lends itself to some curiosity.  The sight of purple eggplants growing in the sun provides as much temptation as  ripe tomatoes hanging from their vines.  Some innocent exploration and the occasional splat is understandable and expected.  Hey, at least they are in the garden and taking enough time inspecting to cause a little commotion.  Even the innocent removal of a watermelon or pumpkin from its moorings provides a moment of learning for young hands who try to attach it after its been plucked.  One can smile at that and use it as a learning and teaching moment of  growth, science, and measurement.  The possibilities are endless for instruction.

HOWEVER!!!!! One cannot stand for nor tolerate the intentional destructive and violent actions of persons bent on destroying something that belongs to the children, families, teachers, and neighbors who reside in and near the school where the garden grows.  Yes, the violent and destructive nature of vandalism has visited not only this garden but 2 others in the Sioux Falls area.  No leads on the individuals or the motives have surfaced, but it begs the question as to what is happening recently.

The greenhouse frequently saw various items littering  the floor not once, but multiple times.  Each time the garden manager had a class out in the garden, she had to first canvas the area , ensuring that any nefarious items were disposed of appropriately.  Bottle rockets, broken pots and cinder blocks lay spewed on the ground, while the beds were the picture of upended plants, vegetation, and footprints.  We won’t even elaborate on the inappropriate material found which would cause any adult to shake their head in disgust and worry even more about the safety of the children in the neighborhood.  Rest assured whatever the mind may be imagining now  is nothing short of what has already been pictured.

For months, members who have been involved in this garden have hoped against all hopes that the activity would cease.  No such luck.  In fact, with each passing weekend, the activity increased and the destruction gained momentum.  With support from all partners, teachers involved, and earlier mentioned non-profit staff members,  the request of the principal for the greenhouse to be removed, was heeded.  Above all, the safety of the students, teachers, and neighbors trumps the presence of a structure–any structure.  With all partners and collaborators set on the mindset that this and other gardens exist for the purpose of education in academia, scientific inquiry, health and personal wellness, environmental sustainability, and the practice of being a great neighbor, plans were made and executed with good faith and attitude.

As the garden manager and long invested partners gathered to look at the greenhouse one last time, the feeling of anger and frustration surfaced once again as the issue of why now, why this place were left unanswered.  The anger, not directed at those dismantling, went to the core of those causing the violence and  the overall safety of the children to be compromised.   So, while 20 pound cinder blocks were stacked, ready for a flatbed, the frustration gave way to a unified  sense of satisfaction that the growing beds remain.  The learning continues, the bridge for school and community exists, and gathered on the pavement were people committed to the education of children.  Unspoken feelings of satisfaction replaced frustration as teams of people worked together to right the wrongs caused by those not able to see the benefit of what they sought to destroy.

There is the wonderful key….their destruction did not dampen the spirits of those rolling up their sleeves.  Their desire to deny others gave way to dreaming and planning of a different sort.  Those who have been present from day one 5 years ago remember fondly the seminary student who dared to ask, “What if?”  That same question came full circle yesterday.  Just as in the past, if something was uprooted, it was immediately replanted.  The ideas of expansion took shape and smiles spread across faces.  College students never before met,  served alongside teachers who cared.  Strangers, made friends demonstrated EXACTLY what the teaching gardens proclaim they do.  They bridge the divide of race, gender, station, desire, education, and financial or social standing.  Conversations of teamwork, student dreams, and future garden plans were discussed with good humor.  Throw in some sunshine, free food, laughter, and the ulterior motives of others were forgotten.  That is right, the motives of those who sought to ruin, were disregarded.  Violence did not have the last word, nor was it the attitude allowed to take root.  It did not take an  angry response to stop the behavior.  Hard work, teamwork, and community proved more important than reacting.  Proactive response demonstrated more maturity and collaboration than a few wreaking havoc.

There are other gardens in the area being targeted.   Ground Works offers  the hand of positive partnership to calling an end to such behavior.  We remain committed, along with others, that the cycles of violence and destruction have a source far deeper than what the surface represents. It is our obligation to go below that surface and ask the tough questions and listen when even tougher answers come forth.  It is our obligation to ensure that a safe and productive learning environment blossoms not only at the gardens we serve, but for those gardens experiencing similar issues.

Destruction has no place in our neighborhoods, or near our schools.  The group yesterday stood positive that quiet and well planned and executed response is of far more worth than misplaced anger.  Love wins, it always wins.  Now, try to destroy that!

Surreal

I have been thinking about death lately.  Now, don’t give me the eye roll and think, oh great, here we go.  Stay with me on this one as I brainstorm some ideas with which I am wrestling.

In the last year some pretty special people have either passed or are in the process of passing.  I am not sure why I cannot say with certainty that they died.  It feels almost like a sware word, or like on Harry Potter, the name which shall not be spoken.  I began thinking about my life, the fact that I recently turned another year and what that means.  I also thought about the process of transition from here to the next.

Now, I have taken my grief and bereavement classes and achieved the requirements for pastoral care and counseling.  They never really prepare a person to walk through that journey with another person.  So I thought about what it must be like.  The idea is daunting to say the least.  I mean, one minute you are there….doing whatever it is we are to do.  Then the next moment, what?  Is it like instantaneous?  Is it like the blink of an eye and then a transition occurs?  I don’t know.  I would venture to guess few, if anyone, can answer that question.

I think about those moments where an accident occurs and upon reaching the scene, and knowing there is nothing that can be done, what does that instant moment look like?  I believe there is a life and a destination when we leave this place and time.  I  do not believe that we are random or out of reach from a Creator who has a Divine plan.  I believe that something awaits each of us, something magnificent and unimaginable.  It is almost too much to consider.  In the situations where a long and painful illness occurs, is that last moment steeped in understanding and an absence of pain?  How does one know that this is IT?  How do we know that the transition is approaching, medical assessment aside?  Is there a definite sign?  Is the person passing accepting, much more so than those present?  What is their knowledge of that moment?  Is it resignation or a release?

All this thinking has me contemplating life as well.  In a surreal way I have, at times, come to a real understanding that I AM HERE.  I exist.  I have height, depth, movement, thought, and capability.  Not by mere coincidence I am here in this time and this place.  No one thinks the thoughts I have, the moment I have them. As individual as an eternity of snowflakes, so am I.  That is mind-blowing.    I have touch and an awareness of all my senses, I have not been created an animal, incapable of works, emotions, dreams, and actions.   I hurt, emotionally and physically, I walk, talk, interact, sleep, eat, drink, any number of menial tasks.  Are they really as menial and insignificant as many of us believe?  I think of those who are not able to perform the simplest of action or thought.  What does the world look like?

If I am as individual and un-reproducible as I believe, what is my obligation in this time and in this place? How does one embrace a life of lived fulfillment and not existence?  How is that possible?  If it is one steeped in existence, was that a moment in history missed?  Is my definition of a life lived exceptionally limited by my small world and after life knowledge?  To expand that would require?  Am I willing to jump into that mix and explore the necessity of our impact on one another and the world around us?  Am I willing to think of the legacy I choose to leave behind me, or am I content to remain quietly moving from place to place until the inevitable happens?

I don’t know, I pray this is not morose or depressing, but an invitation to thought and contemplation.  These are not questions with easy answers, nor are they ones that I can answer for anyone else.  As I rejoice in memories of those who have died (ouch) and those who are actively dying, I think also of the meaning of the here and now and what lies beyond what we see.

shalom,

cahl

 

I was READY….to quit.

As a little girl I was allergic to EVERYTHING!!!  I mean everything made me sick.  Sugar, milk, citrus, and most spices sent my stomach into fits of pain and bloat.  While all of my classmates celebrated birthdays with great cakes laden with tons of multi colored frosting, I looked longingly at huge slices of cake and tall glasses of ice-cold milk.  Both items would have sent me over the edge and seen me visiting the bathroom each hour.

I snuck it when I was a kid, even retreating to the basement to drink a shot of pure syrup out of the bottle.  I got in major trouble when I was a kid and my parent’s found out, it is a little funnier now that I am older and can picture my sons doing something similar.  I think that most of the time I was not sneaking goods out of some evil plot to undermine my parents, I think I wanted to know what it was like to eat and taste like everyone else.  I got so sick of diet candy, many of which contained some dye or sweetener that I could not stomach either.  The sight of diet pop==TAB cola made me want to yak a good yak.  I had uncles (my uncle walt) especially, who would throw me a treat at special holidays once in a while–usually my mother saw what it was…hours later as I was sick in the toilet.  To say that I was stubborn and unwilling to listen was an understatement.

All through school I watched what I ate, what time I ate, and how much.  I got so sick of peanut butter sandwiches that I cannot stand the sight of them to this day.  Remember they would be only peanut butter no jelly.  My fruit and veggie intake also had to be monitored because too much citrus or too much ruffage caused even more problem. Dry cereal took the place of dry toast, and hot dogs and hamburgers were eaten with no ketchup.  I grew used to this, and sometimes my parents would make something special.  I craved rice with raisins and cinnamon.  Today, I would rather have a meal of “real” food than a bunch of junk,  to eat a donut in the morning is almost unheard of in my world.

After years and years of battling I got pretty good at predicting what I could and could not do.  As I aged and stress levels increased I noticed some other issues arise.  With the more stress, the more intense the pain I carried.  The more worried I became, the more intense and sick I felt.  My stomach became a barometer for what was happening in the environments around me, and for many many years it has been hell.

Tension and stress gave way to acid creeping up my stomach into my throat and I choked back chunks daily.  This got worse and worse until doctors discovered that I could lean over and cause acid and reflux to rear its ugly head.  My first colonoscopy was at 25 when I ended up in the Spencer, IA hospital for a couple of days.   Procedure after procedure I endured…radioactive eggs, barium drinks, more radioactive eggs, CT scans, more endoscopes and colonoscopies than any person should endure.  I endured.

In the last 3 years I have seen almost 20 polyps some of which have been cancerous, many pre-cancerous.  I have awakened at night in pain, refrained from eating because I was in pain, and undergone a laparoscopic nissen and the removal of my gall bladder.  Whatever organ which is not necessary has been removed, except my appendix.   Up until the last month, I believed my life was sentenced to this roller coaster called my stomach.

You see, not so long ago I sat with my adopted file and it spelled out in great detail much of my early life, including how my biological parents interacted with me.  The file described a pre-mature baby who had really bad gastro problems from birth.   The implication was that there was not adequate pre natal care and improper feeding taking place.  There was also mentions of bottles of beer being fed to me as well as bottles of straight formula given to me as a newborn.  This caused so much internal damage that we believe it will take a lifetime to recover-if ever.

Knowing this information, coupled with my track record had me so depressed and downtrodden.  I felt like I would always battle to feel level.  I was ready to quit.  I dreaded every doctor appointment, had seen too many ER visits, and found most pain medicine made me sicker.  I hated get togethers where good food was on display, I ate but within 20 minutes I would be sicker than a dog and regretting that I had eaten.  I lived this way, day in day out for 38 years.

Until now.  I found  a gastroenterologist who told me that he would not stop until he had come to the bottom of the pain (no pun intended).  No one had ever treated me like that before, no one had promised to care for me until the pain was gone.  Every other doctor looked at the symptoms and treated them, making me endure procedure and haphazard guess, none of it alleviated the pain.  I cried at night, dreaded every meal.  Now that I am in a drug test where it appears I have received a drug which has cut down on the pain and other unpleasant side effects, I can think of more than where the closest bathroom is.  I can see beyond the last meal I ate to thinking about how to feel even better.

I did not care, really, until a couple of weeks ago, what my future held.  It felt like each day was more of the same and the colors were always grey and dreary.  Never did I feel like running down the hill, grabbing after the sunshine and laughing.  Today, I feel a bit differently.  I am just under halfway through the drug trial and my pain has decreased from a solid 8 to a 1 or 2 and the number of bathroom visits down from 8-9 to 1 maybe 2.  This is monumental in my world.  This is freeing in my world.

The effects of all the damage may not be gone, I will have to watch the inflammation and scar tissue for the rest of my life.  There will never be a time when I won’t have to have endoscopes and colonoscopies, I will have to watch them carefully–constantly aware.  Today, though I received my next dosages of medicine.  I am more hopeful than I have ever been.  In fact, I made a decent batch of banana bread and am looking forward to eating it.  I want to eat it.  I am thinking about a work-out regime not for 2013, but for me personally.  I want to feel better, I want to feel more physically strong, and if the insides are healing, I want the outside to match.  I want to experience what WHOLE body and soul healing looks and feels like.  For the first time I am willing to consider what tomorrow looks like…I have never lived like that.  I never wanted to think that there would be a tomorrow.  I was ready to quit…to embrace the rest of my life in a dark tunnel where everyday looked exactly like yesterday.

I don’t want to live victim to a past, a present, someone else’s reality, or a pre-conception of things being one way because they have always been that way.  Damage may have been done, but I do not have to exist victimized as a result of other’s actions or inactions.  I can live–I can live healed.  I am not sure what that looks like, but in the days and weeks to come I intend to explore that idea…I invite anyone and everyone to come along on the journey…if you have ideas or comments….please let me know.  Let’s do this together…let’s live this journey together.

Shalom,

cahl.

In ReVUE.

What can I say…I did not watch the ball drop at midnight, I imbibed no alcohol, I did not situate myself amidst major crowds, I am…boring.

I played Words with FRIENDS, beat my mother for the 6th straight game, wrestled with both my boys, and cuddled my pug till  fell asleep at 10 pm.  I was at work at a gas station bright and early, listening to large groups of men complain about their lives, wives, town, and occupation.  FUN  Then another group comes in, spending their whopping 75 cents while discussing their upcoming colonoscopies and the prep they must endure to undergo such procedures.  I wanted to scream at them that I have done at least 6 of them in my life in the last 10 years, but I opted to keep quiet this time and simply observe.

I watched this morning as the Facebook posts reiterated the plans people have for the upcoming year.  I have made no plans, no definite ones anyway.  I have things I would like to see happen, but I find if I make the plans, they have a tendency not to come true and then I am left feeling guilty about my lack of initiative.  I have hope for the first time, I think the first time I can remember.

It has been a whirlwind of a 2012.  I can honestly say that I have learned more this year than in years past.  So, what did I learn?

Well, graduating from Seminary does not mean that one has an instant pass around the Monopoly board.  There are many hoops to jump, some man-made, some that require time and contemplation.  At the end of 4 years, I have read more, analyzed my psyche’, written more papers, and questioned myself more than I have in any other year.   What I thought I would be doing, where I thought I would be going, I am not.  Fortunately, the ride is taking me some amazing places, so I ought not complain.  Although the planner in me would like a bit more control…

Family is not what I thought it was either.  I am not sure what my definition is, but suffice it to say that what I thought and the reality are 2 different animals.  I have people to whom I am related that I have not had contact with in decades.  There are immediate family members with whom I have not talked with or interacted since 1993.  I find that sad, but am coming to a different conclusion.  I also have other family members that I can go months without speaking to them, I hear about what they are doing, but there is no conversation.  I find that sad too.  However, I think I may be growing up a bit.  The other day I said aloud that I was done trying to put myself on someone else’s radar.  It hit me that the only one who suffers when I try to do that is me.  If I am not on the radar to begin with, their life is unaffected and unruffled in relation to my existence one way or another.  If I try to place myself in a position where I may be noticed, whether with affirmative or negative responses, the only one who gets hurt is me.  They still remain unaffected and I am left holding the empty bag of my expectations.  That was a rather painful realization to come to this week.  That means there will be a response…I will withhold my connections with those people and wait for their cue.  Am I a horrible person?  No.  We just do not see life in the same manner and I am sick to death of trying to make myself fit every stinking mold out there so that someone else feels comfortable with me.  To quote Popeye “I am what I am.”

Family looks different…there are people who have traveled hours to see me preach, they did not have to do that.  I have people at the station where I sub who have asked me to officiate their weddings.  I have 2 scheduled for 2013 already.  Preacher ME!  I have brothers and sisters who have no blood relation to me, but who chose to have more to do with me than my family.   That is by their choice, not my force.  They have shown me time and again what community looks like.  WE are willing to climb in the muck with one another and get dirty…and love each other through it.

My boys are the 2 most precious and best things I have ever done.  Sometimes I struggle with how I am doing as a mom, priorily learned methods of parenting sneak into my head, but I work like a dog to make sure they are loved.  Not a day goes by that I do not tell them at least a million times that they are loved.  I hope it is enough to cover them when I fail to live up to all they think I am.  It is amazing to see how they are coming into their own and becoming the people they are meant to be.  It is also humbling to see some of my personality visited on them…that mother’s curse is certainly alive and well in these two.

Health is something that has plagued me the last 38 years and it looks like I may have a handle on it…FINALLY!  From my past biological parents, I had suffered a lot of internal damage which causes much inflammation and scarring.  To make a long story short, there was not a day that I did not double over with stomach pains, cramping, and a host of other issues.  I have had every colonoscopy in the book, eaten radioactive eggs, done more barium drinks than I can count, and had most of my insides that are not major organs removed.  All that is left are those that HAVE to be there and my appendix.  I entered into a drug study as a guinea pig and it looks like the drug is actual drug and not placebo.  You have no clue the relief I feel not having a stomach ache every single day.  I told a good friend the other day that I was ready to give up, I was ready to give in and let it overtake me.  I will write more about that later.  From the physical sense, I felt trapped in a body that would not let me do what I wanted, did not give me the energy that I needed, and I wanted nothing more than to crawl into my blankets and lose myself.  I still have a ways to go to heal all the damage that has been done, and a good share will never be healed, but I feel better than I have in years and actually look forward to next year at this time.

Understanding people alludes me, but I am learning.  I am more apt to listen and watch than I am to respond.  I am choosing more carefully what I respond to and in what manner.  As a candidate for Ordained Ministry in the United Methodist Church, I hold to the concept of Social Justice with all that I am.  I am watching closely what I see and discerning what I hear and what my response should be.  There will be times of action, of contemplation, of learning, and of surrender.  I hope that I am wise enough to know the difference and to heed the counsel of those I trust.  More times than not, my impassioned heart and mouth can get the better of me, I need to temper that with quiet confidence and allow that to lead.  As I age, I am less tolerant of intolerance and find those who intend to hurt simply because they can not worth my time or energy.  I am coming into a more working knowledge of what ADVOCATE means.

2012 has taken me for a ride…catapulted me to depths of understanding and confusion that I did not think possible.  There has been loss, joy, frustration, forgiveness, understanding, and resignation.  I am more hopeful for this year…I am gonna try and just BE for a while and see how that goes.

SHALOM

cahl

 

 

With all the HYPE…

The Conneticut tragedy is still not far from my mind, I have read the account in the book, Columbine, and the area of mental health fascinates me.  If I could ever pass statistics, I would consider another Master’s in Psych or a focus in mental health for a PhD.  It’s that math thing that trips me up every time.  ANYWAY!!!

This day of all days has special significance for me.  It is  day which will be forever etched in the recesses of my mind, sometimes I take it out, look at it and feel immense guilt.  Other times I look at it from afar and wonder how in the world I made it through that time, still others I am thankful to observe from a more detached place where we were then and where we are now- 2 years later.

Lots of people are talking about the impacts of mental health and the need for more research and conversation surrounding these issues.  I would agree, but I would offer a word of caution as well.  Having a mental illness does not pre-determine an individual to violent behavior anymore than a person with heart disease or diabetes does.  It is something that needs to be recognized, honored, and treated.  Note that I included the word honored, here.  Just as we honor people with any disability or injury…or scratch that..We honor people simply because that is what they are, PEOPLE.  We honor one another  because it is part of human nature–because we MUST.

2 years ago I admitted my son to a psych floor at a local mental hospital.  It was the hardest moment of my life and I have written about it before–the sound of the locked door shutting….the feel of my keys in my hand that I could not use to save him.  I worked there at the time as a Chaplain and there was nothing I could do to rescue him, it was not my place to rescue him and I still can’t.

Many will continue to talk in the coming weeks and months about mental illness, touting solutions, pretending that they have the “answers” to the situation.  There is not one solution…and the problem of mental illness is such a personal and humbling realization.  Simply throwing money at it will not solve, banning individuals from certain rights with mental illness will not solve it, there is no blanket solution.  The sooner we understand that, the better strides we will be making in understanding and equipping one another to honor people with them.

confession:  my son has 2 mental diagnosis.  I also have propensity for a couple of them.  I have some PTSD from situations in my past, I possess a tendency toward anxiety and dysthymia as well as some Season Affective Disorder, I may also dabble in the ADHD realm.  All of these are interrelated and are linked to issues that go beyond what people think could or should be a blanket response.  Simply throwing medication at any of them will not solve the problem on its own.  It is a day in, day out understanding of who I am, who my son is and responding with grace and honor to who we are.  I am old enough to know and can tell when situations may be getting out of hand, and there are times when my medication has not been what it should have been.  There are times that I tried to go off my meds only to realize that I feel better, and am a better Me with my medication.  Thankfully I have had insurance the whole time, which has afforded me the chance to stay on meds.  But, throwing one medication or a cocktail approach does not warrant the only mode of treatment.

Do you know what it is like to live in what feels like a hole that continues to drop lower and lower, the bottom of which you cannot see or feel, but you know is there?  The hole sometimes closes in, making you feel suffocated and larger than life at the same time.  Sometimes it is so engulfing you think it may swallow you whole and take over your whole existence–you feel small and insignificant–and sometimes like the backpack you are carrying is so heavy you cannot take another step forward.  The weight of its contents so overwhelming it causes you to collapse under it right where you are–stuck.

There are moments of wonder and awe, when things are leveled and you feel good.  There are also moments of deep despair, confusion and frustration.  I have watched my son go from being a happy camper to someone who is so filled with anger that I do not know what to do.  I have witnessed him wake in the morning and go tearing through the house like the Energizer Bunny on  crack, and I am exhausted by it.  Do not get me wrong, he is a wonderful and loving boy…but he also drives me to tears in the wee hours of the night, when I lie awake and worry about his future.  Note that I have anxiety, so the guilt and worry factor is high here.

I worry about his classwork, his organization, his social standing in school.  I worry about how he feels about himself.  You see, he has not had a past of abuse or neglect, but he will claim that he hates himself and his life.  There is no reason for his lack of confidence in himself…he is loved, cherished, and encouraged to be the individual he is.  It is something in the brain that screws with his perceptions and the world around him. There is nothing wrong with him as a person and he is not predestined to a life of crime or a danger to society.  The most damage he will do will be to himself, in his own mind, to his own body, or to the 1 other person whom he trusts more than life itself….mom.

Each day is a lesson in learning about my son, the external stimuli, and his reaction to them.  I have to juggle his BIG personality and intelligence with tolerance to what his mind and body say he needs.  I also have another son who does not exhibit the same personality or mental illnesses…but is just as intelligent and capable.  I have to balance interacting with both of my sons, knowing that they are both individuals and the way I parent one is not the way I can parent the other.  It is a daily exercise in patience, which I lack in major degrees.

It takes a toll on every aspect of family life.  It strains marriages and consumes my thoughts, and I am guilty to paying more attention to my children than to myself and relationships that I have in my life.  It confuses grandparents who don’t see the effects of it everyday…who wonder why the need for meds and their desire to solve the problem motivates them to search for answers that are not readily available.  In their quest to love on their grandkids, they comment and grasp at straws…and those of us who deal with it 24-7 sit and watch and….hurt.  It may claim my marriage, it may not…..it remains to be seen how we weather the impact.  Statistics are not in favor for families who deal with any child with any level of disability.  It takes an immense amount of effort and the pressure is extreme.  I do not say that for a sympathy vote, I say  that as fact.

What is really needed is support and encouragement.  I want to   know as a person who takes medicine for a mental illness, that I am not alone.  I want to know that I have worth and importance as much as anyone else.  My affliction may not require I wear a brace, take my blood sugar, or spend my days in a wheel chair, but it is something which I must pay attention to each day.  I want to know that there are people out there who understand what it means to deal with it on their own, personally.  I want to know that there are people I can talk to who have children who wrestle with this…I want to know that I am not a bad parent with people waiting to sit in judgment of me and my family.  I want to breathe…large and long. I want to feel empowered and the know that the “it takes a village” idea actually works.  I want to use my knowledge to help others and to glean from them when I need it. Above all, my son and I want to feel NOT ALONE.

I think that is all I have at this time…my sons are now fighting over their individual bags of reese’s pieces and requesting I play Gangnam Style for the billionth time.  Excuse me while I go tear my hair out and run screaming from the building….aaaaahhhhh

Shalom dear ones,

cahl.

 

 

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