Mental Health and Hormones

This might be an odd topic to discuss, but it’s actually very important in terms of adolescent mental health particularly if there is a biologically-based brain disorder on the table.

What happens when puberty strikes?

Let me get this off my chest.  I hate the word ‘puberty’.  I don’t know why.  It’s a weird word, isn’t it? I don’t even like to say it aloud.  “Puuuuuuuuuberty.”  No.  Just…no.

What else can I call it? Game Day? The Dawn of a New Age? Rites of Passage? Pledge Week? These all sound like terrible movies, cults, or something that happens to you at a Greek Week event.  But, isn’t that what puberty feels like? I digress…

Everyone warned me that puberty would be an über nightmare for Grace as opposed to the standard nightmare that the neurotypical folks experience because the sudden surge in hormones might possibly increase the intensity of her diagnosis–schizophrenia spectrum disorder.  I winced.  It is a valid concern because onset of puberty is often the time when schizophrenia and bipolar spectrum disorders emerge.  If you have a child who has a childhood-onset diagnosis, then what might puberty change or exacerbate?

So, how has it been?

Well, the first thing to note here is that Grace has been taking Abilify since she was 11 years-old, and Abilify affected her sexual development.  She didn’t experience any signs of puberty until she was well into her 15th year.  That’s late.  It was concerning.  We were almost referred to an endocrinologist.

The second thing to note is that her symptoms were in no way exacerbated by her diagnosis.  She was a very typical teenager if ‘typical’ is a thing.  In other words, her behavior and thoughts were well within the bell curve for what I would define as normative although she has favored emo-angsty self-expression for about a year.  It’s like living with a character from a knock-off John Hughes movie.  The month prior to menarche (another word that should never be used), however, she became an asshole, and no one knew why.

Also, she wanted to snort and mainline sugar.  I had to practically build a wall between her and the kitchen just to keep her away from anything potentially sugary–even granulated sugar! She hated everything as well.  She was rude.  She wanted to be left alone.  Everything was bad.  And, she cried all the time.  She is my third daughter.  I’ve seen all this before but not quite at this level.  A friend commented, “Wow, she just hates everything.”

Well, when her first period arrived, it all crystallized, and her mood cleared up.  It’s damn hard being a girl.

We did not, however, have any psychotic symptoms.  We did not have a surge in mania.  It was fairly typical.  Everyone in the house gets a bit moody and upset as their hormones ebb and flow.  Doireann cries.  Eadaoin gets punchy.  Grace hates everyone and everything.  I feel irritable.  It is life.  You learn to go with the flow (sorry about the pun…).

The good news? There was no apocalypse, and that means a lot because more than a few people prognosticated the end of the world for Grace when Shark Week hit.

So, should you be in a similar situation, wondering how your child will do when the surge of hormones bathes their brain in all the colors of the moody, developmental rainbow, have hope.  Sometimes things go smoothly and everything works out.

Just as you hoped it would.

 

 

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The Imaginary Audience

Happy 2016, one and all! I feel like asking, “How are you?” And, I hope that some of you tell me!

I have been adjusting to life as a single parent, and I have to admit that it is exhausting not to mention the Groundhog Day Effect.  I clean one room, leave it, return to it, and find that it looks just like it did before I cleaned it–all within the space of ten minutes.  So, my days are starting to feel just like Bill Murray’s in the film “Groundhog Day”.  Interminable sameness.  “Didn’t I just pick up this exact piece of paper from this exact spot yesterday?” No.  Am I losing my grasp on reality? No.  Have I bridged the space/time continuum? No.

What is going on then?

The answer? I have three daughters at home, and they don’t observe a lot outside of K-Pop, manga, their insatiable desire for savory snacks, and their obsessions du jour.  Okay, okay, there are other things going on as well, but you get the picture.  I will admit that relaxing into it seems to be the way to go.  I’m not pushing the river, so to speak, when it comes to the culture at home.  With the atmospheric oppression lifted, I have wanted to see how the girls would expand in their own right.  What might evolve in terms of family culture in our home? Doireann is living on campus now so the home dynamic has changed.  Everyone living at home carries a DSM diagnosis.  We have three biologically-based brain disorders at play.  What might emerge?

The first thing that happened was a kind of collective deep breath followed by the predictable release of emotions.  Everyone had been walking on eggshells around my ex-husband (their father).  No one knew any peace in the home due to fear.  When safety and predictability were finally established, everyone freaked out.  We had crying jags, externalized emotional expressions of fear, anger, confusion, and expression for the sake of expression.  Just because they could.  There was an outpouring of verbal expression that sounded a lot like hatred: “I hate him!”  It’s rooted in feelings of betrayal, confusion, and profound emotional pain.  There was a month, after he moved out, in which the girls refused to see him.  To his credit, he did not push them.  Doireann, however, has cut him out of her life.  She has her reasons, and they are valid.  This is her journey now.  She is almost 19 (can you believe that?).

Grace began high school, and Milly began middle school so the school year, in a word, has sucked.  They are, however, developing resiliency, and that is what I have wanted for them.  It is difficult as a parent to watch our kids swim through the shark tanks of both middle and high school.  We remember what it was like.  I’ve only met one person in my entire life who liked high school.  No one looks back on middle school fondly.  It seems that everyone turns feral during that time in adolescence.  Instinctively, I would spare them that particular suffering, but, at the same time, how will they find out what they’re made of? To quote T.S. Eliot, “If you aren’t in over your head, how do you know how tall you are?” For those of us with children with mental health issues, we walk a very fine line when it comes to helping our children develop resiliency because we are never sure of what their tipping point is.  On a good day, they can handle a lot.  On a bad day, they can’t.  And, there is no predicting in the morning if a day will be good or bad in terms of their ability to cope.

Yesterday, for example, Milly seemed okay.  I have to drive fifteen miles to her school as she is open-enrolled in another district.  We leave early so that we can hold to our morning tradition of stopping at the Caribou Coffee across the street from the school.  I get coffee, and she used her allowance to buy a drink of her choice.  Yesterday, she chose hot chocolate.

It is worth noting for the sake of this story that when Milly was younger she would never speak in public.  She would hold onto my legs and hide behind me.  Sometimes, when I would walk, she would slip down my legs, and it would look like I was dragging her behind me.  Oh, the looks I got! She was terrified.  She was almost agoraphobic.  She is on the autism spectrum (what the DSM-IV labeled as Asperger’s Syndrome), and she has an anxiety disorder as well as a depressive disorder.  Co-morbid to this are sensory processing issues.  Milly has always been the way she is.  From Day 1.  And, she has been receiving countless kinds of interventions since she was a toddler to bring her to a place of functionality.

Yesterday, however, she marched up to the counter, ordered her drink, paid for it, and sat down at our chosen table–just like a neurotypical kid.  I almost take it for granted now.  She was talking to me about a documentary that she had watched; she is really into documentaries: “Mom, some of these documentaries are hard to watch, but I think that it is our responsibility as people to know the truth about what is happening in the world.  It is important, and part of that is feeling uncomfortable.  I feel a responsibility to know so that I can help.”  My 12 year-old said this to me! I was amazed.  As she was sharing this, she knocked her drink over, and it splashed all over her pants.

Time slowed.  I saw her face.  Her eyes widened.  She was frozen.  Tears started.  She couldn’t move or respond.  Her diagnoses came to the forefront.  I wasn’t dealing with Milly anymore.  Hello, Anxiety.  Hello, Depression.  Hello, Autism.  She was enveloped in them.  And, this was the moment to talk to her rather than try to save her.  If I could reach her, then I could get some neurons to fire.  “Hey, hey, it’s okay.  It’s just a drink.  I need you to stand up and go ask for a rag.  This isn’t a big deal.  Can you move?”  She couldn’t.  She was using all her emotional energy to hold it together.  “Can we leave? Can we leave? Can we leave? I wanna go home.  I wanna go home.”

Suddenly, a woman appeared with napkins.  “I saw what happened.  You clearly need help.”  She looked at Milly with kindness, and then she looked at me judgmentally as if I wasn’t helping my daughter.  I wasn’t helping her in a way that she would help.  I am accustomed to this.  I have developed some shame resiliency.  I thanked her and got up to ask for help.  Another person had already intervened on our behalf and a barista was on her way over.  Milly was able to stand up, but she was trembling.  Her bottom lip was quivering.  She ran to the door and stood there.  She was ready to bolt.  The barista cleaned up the table and chair, and I sat down.  I motioned for Milly to return, but she shook her head at me.  I mouthed, “Come here please,” and she slowly returned.  Her pants were indeed saturated with hot chocolate.  She could not go to school like that.

“Everyone is staring at me!” she said quietly starting to cry.

“Here is a secret,” I said.  “No one really cares what you are doing.  If you take care of what you are doing and carry on as if nothing worth looking at happened, then people won’t care either.  But, when you sit there in your chair frozen and rigid, refuse to help yourself, and run across the store to stand by the door, then people will stare.  Those are unusual behaviors, and people stare at unusual behaviors.”  She was able to hear that.  She made her “thinking face”.

“Oh,” she said, “so if I act like nothing happened even though it’s so hard, then people won’t really stare that much?”  she asked.

“For the most part, yes.” I answered.

“But, there was a group of kids staring at me,” she said pointing directly at them.

And, here we landed on the Imaginary Audience.  There may have been a group of kids staring at her; in fact, I don’t doubt it.  But, why is this form of social anxiety so heightened in adolescence and even more so with young people on the high-functioning end of the autism spectrum? It is due to the developmental phase characterized by the egocentric state known as the imaginary audience:

“David Elkind coined the term “imaginary audience” in 1967. The basic premise of the topic is that people who are experiencing it feel as though their behavior or actions are the main focus of other people’s attention. It is defined as how willing a child is to reveal alternative forms of themselves. The imaginary audience is a psychological concept common to the adolescent stage of human development. It refers to the belief that a person is under constant, close observation by peers, family, and strangers. This imaginary audience is proposed to account for a variety of adolescent behaviors and experiences, such as heightened self-consciousness, distortions of others’ views of the self, and a tendency toward conformity and faddisms. This act stems from the concept of ego-centrism in adolescents.[1]

Elkind studied the effects of imaginary audience and measured it using the Imaginary Audience Scale (IAS). The results of his research showed that boys were more willing than girls to express different sides of themselves to an audience. This apprehension from girls has given rise to further research on the value of privacy to girls. Imaginary audience influences behavior later in life in regards to risky behaviors and decision-making techniques. A possibility is that imaginary audience is correlated with a fear of evaluation or self-representation effects on self-esteem.[1]  

Imaginary audience effects are not a neurological disorder, but more a personality or developmental stage of life. It is not aroused by a life event; rather it is a part of the developmental process throughout adolescence. It is a natural part of the process of developing a healthy understanding of one’s relationship with the world. Most people will eventually gain a more realistic perspective on the roles they play in their peer groups as they mature. This natural developmental process can lead to high paranoia about whether the adolescence is being watched, if they are doing a task right and if people are judging them. Imaginary audience will likely cease before adolescence ends, as it is a huge part of personality development. Imaginary audience can be as simple as having to change multiple times in the morning because the adolescent still feels unsatisfactory about arriving at a destination about his/her appearance even though he/she will appear the same as everyone else. The number of adolescents who experience an imaginary audience effect cannot be described with any sort of statistics because an imaginary audience is experienced in all adolescents.” (online source)

The imaginary audience phenomenon is one reason why adolescence is so damn awful.  We feel perpetually observed and scrutinized.  For the person with autism it is even worse because of the clash between a deficiency in theory of mind and this:

“According to Jean Piaget, a Swiss developmental psychologist known for his epistemological studies with children, every child experiences imaginary audience during the preoperational stage of development. He also stated that children will outgrow this stage by age 7, but as we know now this stage lasts much longer than that. Piaget also said imaginary audience happens because young children believe others see what they see, know what they know, hear what they hear, and feel what they feel.”

Piaget’s assessment that young children believe that others see, know, hear, and feel as they do is, in fact, the definition of a theory of mind deficiency.  This is the hallmark struggle of Asperger’s Syndrome.  If we were to recall then our own middle school experiences, we would see that one of our greatest social anxieties revolved around fear of being discovered.  “Everyone sees this.  Everyone notices this one thing that I hate about myself.  I look terrible today, and everyone sees.”  In this, we see the imaginary audience in addition to the belief that “everyone” is aware of what we are trying to mask.  Keeping in mind, every single person in our peer group is experiencing the same developmental phenomenon, it is no wonder that adolescence is a horrible experience.  It’s like squeezing hordes of porcupines into a shoebox and asking them not to prick each other.

What is the outcome?

 The extremes to which adolescents experience an imaginary audience, however, varies from child to child. Some children are considered to be more “egocentric” than others and experience more of an extreme imaginary audience or have more of an elaborate personal fable.[2] Therefore, children then subconsciously put more value on the idea that everyone cares about what they are doing at all times. This is very common in adolescents during this level of development as the child is going through Erik Erikson’s identity vs. identity confusion.[3][4]

The child is struggling to figure out their identity and formulating congruent values, beliefs, morals, political views, and religious views. So, on top of experiencing an identity moratorium in which they are exploring different identities, children feel they are constantly being watched or evaluated by those around them. This leads to intense pressure being placed on the child and may also influence later self-esteem.[2][5][3][4]

Comedian and former Saturday Night Live writer John Mulaney jokes about this here:

13-year-olds are the meanest people in the world. They terrify me to this day. If I’m on the street on like a Friday at 3 PM and I see a group of 8th graders on one side of the street, I will cross to the other side of the street. Because 8th graders will make fun of you, but in an accurate way.  They will get to the thing that you don’t like about you. They don’t even need to look at you for long, they’ll just be like, “Ha ha ha ha ha! Ha ha ha ha ha! Hey, look at that high-waisted man! He got feminine hips!”  And I’m like,  “No!! That’s the thing I’m sensitive about!!!!”

Doesn’t this feel absolutely true?! And, it feels true because of our past developmental experience with the imaginary audience and our own theory of mind.
The point here is that our experience in adolescence of our own imaginary audience does, in fact, affect our self-esteem later on in life.  So, those odd teenaged behaviors and rituals that we as parents and caregivers observe in our kids do matter.  We are observing an identity being birthed, and it is vital that we assist in that with empathy, kindness, and nurturing.
You might not value or even like how your child is attempting to mitigate the intense pressure of the imaginary audience, but it is worth asking how you can be a support and resource while they individuate and, ultimately, differentiate.  My goal as a parent is that their self-esteem is intact, strong, and well-founded along with their sense of identity so that they don’t fear 13 year-olds walking down a street one day when they’re 30 years-old.
Is this possible? Even with our children with special needs? I believe so.  It is hard.  As hard as you expect it to be, you find yourself wishing that it were that easy.  For me, however, I have found that no moment has been wasted in my efforts to prepare my kids for the life they have today or the life awaiting them–regardless of what that life will look like or what their present limitations are today.

 

 

The Executive Decision

We are a very forgiving household.  This is why almost all my daughters’ friends spend their time here.  It’s also why most of them call me ‘Mom’.  I feel too young for that.  Or, I feel like someone’s mother-in-law.  “Hey Mom!”  It’s a weird feeling to have multiple teenagers call you ‘Mom’, but it’s a sign of affection and respect.  It’s also a sign that their own home lives are lacking in something.  They feel comfortable here.  One young woman comes here to sleep.  Her home environment is highly abusive.  One of her family members has tried to strangle her in her sleep numerous times.  She, therefore, doesn’t sleep well if at all at her house so she comes here from time to time just to sleep.  She slips out quietly in the morning.  I’ve called CPS twice about that situation to no avail.

Another girl comes here to be herself.  She is forced to care for her younger brother who by all accounts meets the criteria for having some sort of developmental disability.  Her parents work all day so she must be his caregiver.  She’s a senior in high school this year, and she’s getting out.  She comes here for a break.  Being a house full of girls, we usually get only girls coming here, but, on occasion, we do get a boy.  He is a transgender boy.  His parents hate him.  They “forget” to pick him up and neglect him.  They ignore him completely.  They gave him a Bible for Christmas.  That’s it.  He comes over to our house occasionally but largely keeps to himself.  He’s skittish and shy and understandably so.  He’s being emotionally abused by his family.

All this is to say that I see a lot of behaviors come and go.  I hear what many adults would deem “inappropriate talk”.  One identifies it and moves on.  Most kids who come here want to be better particularly the ones who call me ‘Mom’.  They want to be respectful.  They, however, may not know how to be because they haven’t been taught well, or they haven’t been given enough real opportunities.  No one has believed in their goodness enough to give them a second or even third chance.  Everyone fails.  Everyone needs to be given opportunities to try again.

There are kids who come here, however, who do not want to be better.  They do not really care.  They have learned to be exploitative to get their needs met, and they’ll display rather cruel behaviors in unexpected ways.  That happened last weekend.  Eadaoin needed help with a school project so she invited one of her newer school friends over to spend the night.  Her name was Lauren.  Lauren was initially quite friendly and extremely talkative.  She talked so much, in fact, that I couldn’t get a moment’s peace.  Wherever I went, there was Lauren.  Lauren in the evening.  Lauren in the morning.  Lauren in the afternoon.  Lauren did not pick up on social cues either, and Lauren spoke very openly about her alcoholic stepfather and his abuse as if it were normal: “You know how adults are.  They drink when they’re stressed.”  She then went on to recount how she, her siblings, and her mother had to leave one night to get away from him.  I just nodded my head and listened.  There were other stories she told about her friends that raised red flags.  To her, it was all fine.  Good.  She was perfect.  Her life was great.

Grace’s friend, her former BFF, came over as well.  That friendship has been evolving as middle school friendships do.  She has been less than kind to Grace during the last year and a half displaying relational aggression.  We’ve been unsure how to handle it.  Does Grace end the friendship? Should she talk to her sometimes? Wanting to believe the best about her, she didn’t want to simply write her off.  These are important decisions for young people.

Grace came to me on Monday morning crying.  She told me that Lauren and her former BFF had called her ‘stupid’.  She had been trying to keep up with them in a board game, but she could not.  This is a reality for many young adults with schizophrenia spectrum disorders and for people taking certain drugs.  There is cognitive slowing.  It can’t be helped.  When she wasn’t able to process the game as fast as they thought she should, Lauren laughed at her and said, “You are so stupid.”  Her BFF laughed at her, too, and said, “Yeah, you are so stupid!”  They then went on to laugh at her together.  It didn’t end there.  Someone began teasing her for not being as physically developed as other girls.  “So, when are you gonna get your boobs?!”  And, that’s when the pointing and laughing really started.

As a mother, I felt something rise up in me that might be called rage.  As a woman who has watched other girls victimize girls in this way, I wanted to punch a hole in my wall.  As a host, I wanted to take these girls and shout at them, “How dare you treat my daughter like that in MY house!”  I did neither of these things.  I had to sit there and collect myself.  I had to take deep breaths.  I wanted to cry on her behalf.  Her face! She just stood there full of shame, tears collecting in her eyes.

At what point do we say, “No more.  That person can no longer come here”? I had to ask myself that question.  I may be called ‘Mom’ by a lot of these kids, but I am not their mother.  I had to remember that.  I am, however, Grace’s mother, and she is vulnerable.  So, I made an executive decision.  “Grace, BFF can’t come here anymore.  She is displaying a pattern of cruelty when she comes here.  I’ve talked to her about it more than once, and she won’t stop.  You cry when she leaves.”  I talked to Eadaoin about Lauren.  She might be a perfectly appropriate “school friend”, but she is not going to be a good choice for bringing home.  She lacks compassion and empathy.  I am truly sorry that she is enduring abuse at home.  That is probably why she has learned to normalize abuse and why she is repeating those behaviors.  She is merely doing what has been done to her.

These red flags, however, must be observed, and we have to follow our instincts.  This is how we learn to make good choices in our relationships.  If I don’t want to raise my daughters to tolerate abuse in their relationships, then I have to make the tough decisions about who will and will not come here.  They have to know that they are worth something.  They are worth more than something.  Do they want to hang out with people who think it’s funny to bully and call vulnerable people names? Do they want to be with girls who engage in relational aggression? This is how we develop a conscience in our children.  We point out these behaviors and ask them what they think.  In the end, Grace cried out of relief.  She had not wanted BFF to come to our home anymore.  She simply didn’t know what to do about it.  She was glad that I made the executive decision for her.  Eadaoin understood, too.  She said that she didn’t realize that Lauren would behave so badly, and she apologized to Grace.

It was a very fine line for me to walk.  I remember being 16.  I tied my identity to my choice of friends.  If my mom didn’t like my friends, then she didn’t like me.  I had to be so careful in how I talked about Lauren to Eadaoin.  I wanted her to know that she could still make good decisions.  I still believed in her, and I didn’t view Lauren as ‘all bad’.

I keep waiting for life to get easier, but I think that’s magical thinking.  I think we just need to increase our stamina.  Life is the ultimate marathon.  People praise and admire those who finish the IRONMAN triathlon or the Leadville 100.  I think finishing life well should not go unnoticed.  It is the greatest test of character, will, and endurance.  Feel good about yourself today.  You showed up for your life.  I guess now it’s a matter of how we show up, isn’t it?

 

Endings and Beginnings

2014 is coming to a close, and I am so glad.  This has been one helluva year.  I’m having yet another brain MRI today–the day after Christmas.  The year has to go out with a bang, I guess.  Well, I say, let it! So long as 2015 is inaugurated with celebration.  We made it through 2014, and we’re better for it.

My girls and I spent an afternoon with one of my favorite friends the day before Christmas Eve.  Our two families have had a tradition for a decade now.  We get together and make gingerbread houses.  When we began this tradition, our children were young, and it was really just the two of us frosting and decorating the cookie cottages while attempting to keep the little hands from stealing all the candies.  Odd traditions began.  My friend would unfailingly put the roof on her house upside down.  Every year! She would yell out in frustration, “How could I do this again?!” This year, however, we reminisced about all those imperfections and repeated errors.  It has become mandatory that she put her roof on upside down.  It’s part of the charm.  Our kids, however, took over all the decorating this time.  Eadaoin is sixteen this year.  My friend’s daughter is eleven.  The kids no longer needed our help or advice.

We were able to relax in her living room with our warm beverages and chat while our kids decorated the gingerbread houses completely on their own–even Grace.  What a strange feeling.  She asked how I was doing.  Being a close girlfriend, she went for the jugular: “How’s the marriage?”

Isn’t it funny how girlfriends waste no time? We simply ask.  There is no chit-chat.  My answer? Everyone who reads my blog knows that this year has been grueling.  “Better.”  2013 ended on a precarious note where my marriage was concerned.  2014 will end on a better note.  Perhaps in a major key.

So, what happened? I’ll be as honest as I can be in hopes that it might help someone else should they find themselves in a similar spot.  The day I began writing this blog, the clinicians treating Grace–and there were many–believed that she was bipolar.  Within a month of that diagnosis she declined rapidly and was then diagnosed with a schizophrenia spectrum disorder.  She was not yet 11 years-old.  Her overall decline from healthy child to psychotic happened in less than a year.  It changed our entire family life.  Eadaoin is in therapy today, in part, due to witnessing Grace’s psychosis onset.  Doireann is a completely different young woman today because of Grace’s disease.  We are all different now.  Severe mental illness in a family affects everyone, and everyone behaves differently in terms of coping strategies.

Ordeal has a way of distilling personalities and bringing forth cracks within character and the relationships therein.  I am inherently tenacious.  This is both a blessing and a curse.  I do not give up.  I will hone in on a problem and attempt to fix it until it is no longer a problem or until I have died.  This approach to life worked well where Grace was concerned.  This approach to life worked well in almost all former circumstances.  It does not work well within a marriage when the problem is perceived to be a person.

My husband is as avoidant as I am tenacious.  This is his primary character flaw.  We are both exceedingly stubborn in our positions.  The more I pushed him to deal with those things that increased his anxiety, the more inert he became.  This only increased my drive to “solve him”.  What I did not understand was that he was coping with watching his daughter fall apart by using avoidance–his primary coping strategy.  Avoidance behavior is one of the go-to coping strategies used by those with anxiety disorders.  I do know this, but I couldn’t grasp it at the time.  How does one avoid one’s entire family? Why? One does this because one really lacks the capacity to deal with what is happening.

I observed this and insisted that he see a doctor in order to start anti-anxiety medication.  After almost 17 years of living with his anxiety disorder, I needed him to get his head in the game.  I needed my partner, my friend! I couldn’t do all this alone.  So, I issued him an ultimatum.  How awesome.  Ultimatums are never great, but he did see his internist for a physical.  It was then that he casually mentioned his anxiety.  He was given the standard anxiety check list; he passed it with flying colors.  He left with a prescription for Zoloft.  That’s it.

I must pause and say this.  If a person sees a psychiatrist, then one goes back to the psychiatrist every four weeks after beginning a new medication to discuss how one feels after beginning the drug.  The drug is tweaked or even discontinued in favor of a better or different one.  Internists should not manage psychiatric conditions.  This is where we went wrong, and this is also where I knew we were going wrong.  Recall what I said about my husband’s inertia.  Inertia was settling in at this point.

My husband had never taken a medication for his anxiety.  He had self-medicated with alcohol.  He stopped using alcohol at this point in favor of Zoloft.

A word about Zoloft: Zoloft is an SSRI.  On the spectrum of SSRIs, it is the most emotionally blunting while Prozac is the most activating.  Zoloft is also not a well-known anti-anxiety drug.  It does have some effectiveness for social anxiety, but it is not effective for generalized anxiety disorder (GAD).  Lexapro, on the other hand, is in the middle of the SSRI spectrum as far as emotional blunting and activation.  It is also known to treat depressive symptoms as well as anxiety without some of the better known side effects like suicidal and self-harming ideation for which Zoloft is known.

My husband, however, had never known life without his crippling anxiety, and Zoloft’s emotional blunting was just what he was looking for.  That dead feeling inside that the drug provided helped him cope with his own life as a father, provider, husband, and man.  He liked it.  He liked it a lot.  Perhaps he even needed it.  I, on the other hand, despised it.  He went from an anxious but likable man to a vacant, emotional corpse of a human being.  It seemed that there was no middle ground.  It was one extreme or another.

He disappeared from our entire life, but, in his mind, he was present.  He wasn’t.  He was like a wraith.  We stopped having sex.  For two years.  He had no desire.  In fact, he had no desire for anything.  He described it as feeling paralyzed under a heavy blanket, but he sort of liked it.  He just wanted to do nothing.  He wanted to lie in bed all the time or sit in his room.  He slept all the time.  A ridiculous amount of time.  He, however, was not anxious.  I don’t think he felt anything, and that’s the point of Zoloft.  Imagine a person who feels too much or a person who is completely overwhelmed to the point of being almost non-functional.  Zoloft would be very helpful because it would provide a much needed emotional balance.  Or, perhaps not feeling very much for a time would be helpful in order to learn to think rather than feel all the time.  A drug like Zoloft can be very helpful given the right brain and circumstances.  It was, however, not the right drug for my husband.

After living with him for almost two years on this drug, I truly began to believe that perhaps I was worthless and unlovable.  He did almost completely ignore me almost all the time.  There was, however, much to be learned here.  At some point in the middle of this, I realized that, as a woman, I gleaned a great deal of self-worth from the success of my relationships.  This is a rather female point of view.  I gave up a career to stay home and raise my daughters after all.  It’s not as if I have a career to fall back on at this point.  In my mind, what does it say about me if, after all this time, I come out of this with a shitty marriage and mentally ill children? I thought I had to be Martha Stewart for Pete’s sake!

What now? What if he really didn’t love me anymore? I had to get a life.  That was the loudest message that I heard throughout 2014.  Build a life.  I saw it everywhere.  A stranger in a restaurant even came up to me and told me that very thing if you can believe it–“Don’t wait for your husband to figure out what he wants.  Go out there and do what makes you happy.  Build a life for yourself.”  What an empowering message.  So, I stopped looking at him and what he was doing.  I started looking at me.  I aimed that tenacity at myself and left him alone.  I let him sit alone in our bedroom for months on end.  I let him sleep the days away.  I started making weekend plans with the girls.  I started…living.  It was hard because I felt like I was leaving something behind.  Something symbolic.  I realized, however, that we must always be bringing something vital into our relationships.  We must always be building our own happiness and internal resources as individuals if we are to attempt to build something worthwhile with another person.  Grace’s illness tapped me out, and I became so focused on her and my other daughters.  I forgot that I was a separate person, too.

So, what happened? He felt my emotional departure.  I didn’t abandon him.  I simply left him alone, and that changed the dynamic in our relationship.  He started asking to join me on our outings.  He was still emotionally comatose, and I was still seething with resentment; but, something was thawing.  Two months ago, he finally saw a psychiatrist, and she switched him from Zoloft to Lexapro.  He recently told me that he had no idea just how dead he felt on the inside on Zoloft until he didn’t feel that way anymore.  He then said, “I should have never been on that medication.”

Yes, I wanted to punch him.  The past two years have gutted me.  Our marriage has suffered in ways that I never thought it would, but perhaps it needed gutting.  There was never going to be an easy way through this leg of the journey with Grace.  It was always going to be horrendous.  We did what we had to do.  I, however, wonder if my health would be better today had he not abandoned ship as he did.

So, what’s the takeaway? I suppose that it’s this: Even if everyone else abandons you, don’t abandon yourself.  There will be crises in life.  Once those crises settle, come back to yourself.  In the end, no one is going to take better care of you than you.  Man or woman, we must always invest in our own development and healing.  That says that we are worthwhile and lovable.  We can’t expect others to love us if we don’t love ourselves.  It is, therefore, crucial that you find those expressions of self-love that are meaningful to you and claim them.  Make them a part of your life in a consistent way.  In this way, you will learn to weather the storms in life be they circumstantial, relational, or existential.  And practice the art of forgiveness.  This has been my greatest challenge and lifesaver.  Learning to move forward without giving up self-respect and, at the same time, granting pardon.  This is the grittiness of life. This is the hard stuff.  Knowing that pain and love often weave themselves together as we grow, and one doesn’t cancel out the other.  They often coexist.  Forgiveness doesn’t ease the pain, and pain doesn’t minimize love.

This is what I’ve learned in 2014.  It’s been a very painful year, but, as I said, I’m better for it.

I hope that as 2014 ends you are able to see where your paths have taken you, find a new horizon line, and begin the next leg of your journey with hope.

Shalom…

Finally…

I feel like a Who from Dr. Seuss’s Horton Hears a Who.  I need to shout, “I am here! I am here!”  There is one word that describes the past month: exhaustion.  This Lupus thing is no joke.  Plain vanilla exhaustion.  All. The. Time.

I think raising teenagers is adding to that sense of exhaustion.  “Oh look, I folded a towel and parented a teenager.  I need to lie down.”  I might say this with a little cheek, but my husband’s recent antics might be adding to the inordinate fatigue.

“Why is there a drunk man in our living room at 1 in the morning?”

“Well, Hank was driving us home from the client dinner.”

“Where is Hank?”

“He got arrested…for DUI.”

“How did you get here…with Paul?”

“The cops dropped us off.  I’m calling Paul a cab.”

“Wait, you let a drunk Hank drive you home?”

“I didn’t know he was drunk.  He looked completely sober.”

“Oh my god…”

Perhaps it’s Milly’s Canine Drama.  Her upper canine has been loose but refusing to come out.  She’s been yanking on that stubborn tooth for days and days and then complaining, “It huuUUUUUuuuuurts!”  Finally, in the car yesterday after picking her up from school, she shouted, “It came out! I can’t find it!” Blood was pooling in her mouth so it sounded more like, “Ih ame ou..I an’t ind it!” And then the crying started because she was bleeding not to mention she couldn’t spit out the blood.  She looked like a little vampire what with all the blood starting to stream down the sides of her mouth.  I was driving while simultaneously trying to find a tissue.  I then spied just what I needed! One of my older girls left a maxi pad in the car for some reason.  I think it fell out of a purse or backpack.  I grabbed it, opened it, and said, “Here! This is perfect! Spit out the blood onto this!” Eadaoin shouted, “Oh, yeah, actually that will work!” Milly looked horrified.  She held it out in front of her like it was a dead animal.  I was highly amused, looking in the rearview mirror to see my daughter with a pad sticking out of her mouth.

Of course, Grace is having terrible migraines again except she is experiencing prosopagnosia with them now.  What a weird thing.  That’s been going on for a week.  We are going to the specialty hospital today for a Toradol injection and quick neurological check.  I also get the feedback from Eadaoin’s neuropsychological profile at the same time! So, do you know what I did? I told my husband that he had to come.  He has never been to any meeting or appointment where Grace is concerned.  Not once.  I put my foot down.  Guess what? He’s coming.  So, he’ll go with Grace while I go to the feedback session.  He gets to meet her neurologist.  Finally.

He also finally saw a psychiatrist and had his first intake last week.  Another ‘finally’.

We are off to the races this morning, and all I want to do is lie down.  I can do it.

Right? Right.  ::whimper::

 

A Meditation

I was pondering the state of the union last night (i.e. thinking about my marriage).  This blog covers a lot of ground.  Keeping the magic alive is easier when you aren’t caregiving.  I’ll be honest.  Caregiving sounds almost pleasant.  Even when I think about caregiving, I picture bringing a piece of pie to my grandmother.  That’s what the word conjures in my imagination.

Say the word ‘caregiver’, and I see myself offering gentle care to quietly needy people.  Or, nurses offering water to patients.  Or even mothers and their young children–the primary caregivers.  These images are not congruent with reality when it comes to giving care to an individual with mental illness.  I don’t know what life is like for someone else.  I can only speak for myself.  Mental illness is a game changer.  A permanent mental health illness diagnosis like schizophrenia is a life changer for everyone.  Schizophrenia diagnosed in a child? Our entire family has been changed by Grace’s diagnosis.  Doireann’s personal essay for college entry was about how her life and Weltanschauung had changed since schizophrenia entered our family.  She, too, has been a caregiver.  Eadaoin has been a caregiver.  Even Milly has been a caregiver.

We have all had to learn to offer care to Grace despite our own abilities in the moment or even desires.  We’ve all had to give things up.  Caregiving becomes 24/7, or, at least one parent has to step into that primary role.  That’s me.  I am the case manager, caregiver, and on-call emergency contact at all times.  I can makes plans, but those plans are subject to cancellation at all times.  There is no family to call for back-up.  My husband is my back-up, and if he’s out-of-town or unavailable…

A few years of this creates bone-deep exhaustion, and my husband and I just want to lie down and vegetate.  We’ve achieved something spectacular if our feet touch.  “Oh look, our toes are touching!”  It takes concentrated effort to make knees touch.  Caregiving is exhausting when you’re the therapist, the case manager, the heavy, the parent, and the end all and be all for a vulnerable person.  It’s even harder when there are others standing in line behind that person who need you, too.

But, this is life.  How do we make our circumstances work for us to propel us forward rather than oppress us? This is a question that I ask often.  Not everyone cares for a mentally ill child or even a child with special needs, but everyone has a battle to fight.  Everyone.  Every single person with whom you cross paths has a personal dragon to slay.  Some have more than one.  Some people’s lives are overrun.  In any case, this is what makes humans alike–suffering.  Your station, race, gender, religion, sexual orientation, and anything else don’t preclude you from suffering.  In this, we can all come together and agree.

The view I have chosen to take then is one of personal development.  It’s easier to see it in my children than in myself.  My daughters are now keenly aware of the mistreatment of others particularly those who are vulnerable.  Doireann, who learns empathy through experience, is now almost ferocious when others make ignorant remarks about mental illness.  She has made it her goal in life to educate others admitting that she was once a person who knew nothing about mental illness.  Eadaoin has always been sensitive to social exclusion, but she is far bolder now with her friends if they mistreat a peer in school with special needs.  She goes out of her way to befriend and express affection to her special needs peers, educating her friends and acquaintances on how to treat everyone.  Milly is the biggest surprise to me.  Milly has begun to defend her special needs peers at school.  Elementary school is very difficult socially for anyone who is different.  It is not uncommon to see children running away from a child with Down’s Syndrome yelling, “Monster!” Something like this happened in front of Milly, and she scolded her neurotypical classmates explaining that all special needs children were just like they were.  They just had different needs.  It was wrong to mistreat them, and then she played with one of these children during recess.  She explained to me that one of her friends apologized for making fun of a particular child and never did it again.

Compassion.  This is the fruit of suffering.  There is really no other way to learn it.  Empathy is the ability to put yourself in another’s shoes.  Compassion is the drive to do something about what you feel after you’ve done so.  It is active.  It is never passive.  Suffering and ordeal grow compassion in us.  When we can approach our painful circumstances through the lens of character development rather than a “Why me?” paradigm, then we are far more empowered to move forward rather than stagnate.  The members of our family who are as affected by those circumstances can learn to see themselves as empowered as well.  Suffering can be looked upon differently–a portal to greater understanding, kindness, patience, and personality development.  We can’t really give that to our children.  Life develops that in us, but we can frame it for them so that they can see it more quickly in themselves and others so that ordeal becomes valuable rather than loathed.

If we are looking for opportunities to become better and more mature with a better developed character, then suffering is your gateway into that process of development.  This is what I’ve learned.  Resisting that process leads to more suffering.  Embracing it and going with the flow quickens our development leading us to the most unlikely place.  Gratitude.

At some point, we will actually be grateful for the events that we once tried to escape.

Life is so brilliantly odd that way.

 

 

An Evening Post

Grace cried this evening.

It wasn’t tears brought on by lability.  One grows used to those tears.  Sometimes those tears seem almost like crocodile tears.  I almost feel numb to that sort of emotional display because it seems to be brought on by a shift in brain chemistry.  I know that Grace’s medications need to be adjusted.  It almost feels like a surreality.

This was different.  This was honest.

Grace didn’t cry often as a baby, and she rarely cried as a toddler.  She cried when she woke up from her naps.  That’s it.  Her preschool teacher once told me that she didn’t think she could ever stand to see Grace cry.  She has always been that sort of girl.  Happy and somewhat quirky.  Even as a toddler.  In her own world.  And whatever her world was like, there was no crying.

So, when she cries, it affects me.  I don’t like to see anyone cry.  I might cry if someone cries in front of me.  When Grace cries? I suffer.

She wanted to help Eadaoin babysit tonight, and Eadaoin looked at me in silent desperation–a plea for help.

“Grace, I think it’s better if Eadaoin goes alone.  You had a sleepover last night, and you said that you were really tired earlier today.”

“But I love taking care of little kids, Mom!”

Eadaoin looked conflicted.  “Grace, it’s just that it’s going to be late, and it’s hard for me to babysit with other people with me sometimes.”

Grace didn’t understand.  I looked at Eadaoin.  I looked at Grace.  I decided to tell her the truth.

“Grace, I think what she’s trying to say is that she feels responsible for you, too, when she’s babysitting, and she wants to focus on taking care of the children that she’s being paid to look after.”

“Yes!” Eadaoin said with relief.

Grace looked confused for a moment, and then her expression changed.  She looked at me.  She looked at Eadaoin.  I saw tears well up in her eyes.  She understood, and in her understanding of what was being implied I felt pain bloom in my chest because I knew that something painful was blooming in Grace’s chest, too.

She turned around and silently walked up the stairs, but I could hear her crying.  I couldn’t let her go upstairs alone and cry by herself.  I found her on the edge of her bed, tears streaming down her face.  I had no idea what to do.  I just wanted to take it all away.

What’s the right thing to do? What’s reality here? She can’t babysit.  Just yesterday she told me that she didn’t recognize her dad.  For a moment, she forgot who he was.  She needs to take constant breaks in the day.  She needs supervision.  And yet, she is still a 13 year-old girl who couldn’t wait to babysit when she was nine.  She loves children.  She still wants what every other girl wants.  She still talks about being married one day.  She still has dreams.

I sat quietly on her floor.  I asked her what she was feeling.  She said, “I feel sad.  I don’t like what’s happening to me…”

I cannot adequately express how painful this is to watch.  I want to understand it.  I want to know why this is allowed.  There are no satisfactory answers, and I know that.  Right now there are people in hospices watching their loved ones die of terminal illnesses.  There are people with early-onset Alzheimer’s who are slowly losing their lives, and their families must witness it.  There are cancers and diseases the world over, and there are no good answers as to why innocents suffer.  They just do.  It is the human condition.

It is brutal.  It is the great equalizer.  It won’t matter who you are, where you come from, or the size of your bank account.  Suffering knows no bias.  Everyone will experience it.

I spent time with Gracie in her room.  I tried so hard to just listen this time.  I wanted to validate her rather than be Supermom and fix everything.  I can’t.  I can’t fix everything, but I can be her witness.  I can let her know that I’m here.  I have no good answers, but my presence is an answer albeit a poor one sometimes.

I went downstairs to make bread, and, as I was measuring out the gluten-free flours, a scene from “Steel Magnolias” played in my mind.  Sally Fields’ character was angry.  She was standing in front of her daughter’s coffin, who had died due to her body’s rejection of a kidney.  She was surrounded by her friends who were all crying and trying to comfort her.  She stopped and suddenly shouted out that she wanted to know why.  She just wanted to know why her daughter had to die.  That’s how I felt.

Why did my daughter have to have schizophrenia? Why did she have to be regressing so quickly? Why did she have to experience so much suffering? And why did she have to be aware of it? She knows! And her self-awareness is causing her so much pain.  WHY?!

And then I started crying.  And I really hate to cry.

But then the rest of the scene continued to play as I cried, and there in my kitchen I watched Olympia Dukakis drag Shirley MacLaine forward to be punched in the face: “Knock her lights out! Take a whack at Weezer!”

 

And, I laughed.  Such is life.  It is truly bittersweet.  Mine doesn’t stop.  A friend commented today that she has never understood my life.  We never get a break.  It’s true.  We don’t, but that is our life.  I don’t know if there is purpose in that or not, but I suspect that we are the ones who determine that.  I can add meaning to all this should I choose to.

I am grieved to my core that my daughter is in pain, but I have the privilege of sharing her journey with her.  And, I will be with her to the end be that in body or spirit, however she chooses to let me.  I will do whatever I can to honor and add to her dignity so that she always knows that she is beloved and worthwhile regardless of her momentary abilities.

And so, for tonight, I stop asking why.  I turn to Christian theologian Stanley Hauerwas who once said, “What we owe a mentally or physically disabled child is not to ask why God permits this, but to ask ourselves what kind of community we must be so that this child can live as full a life as possible.”

That? I can do that.