Mast Cells, Migraines, and New Possibilities

Good morning, everyone (Science jargon incoming so put your thinking hats on)!

I’ve come bearing some interesting news that might help you.  Let me provide the context.

If you’ve read any of the content of this blog, then you know that I started it when my daughter was diagnosed with childhood-onset bipolar disorder in 2011.  A few months later she was diagnosed with childhood-onset schizophrenia.  A few months later, she was diagnosed with schizoaffective disorder-bipolar type.  It was quite a time for an 11 year-old girl.

We saw so many specialists during that time that I am still paying off the medical bills, and we had health insurance! That was five years ago! Suffice it to say, those years are a blur.  Some kind of lucid nightmare.  So, what news do I have?

Ever heard of a mast cell?

If you have not and you yourself or someone you care about has a biologically-based brain disorder, then heads up.

A mast cell is a type of white blood cell produced in our bone marrow.  More specifically, it is a type of granulocyte.  A granulocyte is a cell (-cyte means ‘cell’) that contains ‘granules’ which the cell will eject into nearby tissue or the bloodstream once ‘activated’ or signaled to do so.  The granules are like a chemical cocktail in that these granules are chemically varied.  In other words, there are a lot of different chemicals inside a mast cell, and when the mast cell activates it dumps its chemical payload wherever it is in the body.

The granules consist of familiar sounding chemical mediators like histamine, heparin (anticoagulant), and serotonin.  Some of the chemical mediators within the mast cell may not sound so familiar like prostaglandins and cytokines, for example.  Mast cells are heavily involved with allergic reactions, hives and flushing, asthma, and anaphylaxis.  They are also involved with modulating the blood-brain barrier (BBB).  Recent research has shown that mast cells are involved in a lot of other bodily activities, too, which is why they can be such troublemakers.


A mast cell with visible granules

What does this little white blood cell have to do with, well, anything pertaining to you?

About ten years ago, a disorder called Mast Cell Activation Disorder (MCAD) was “discovered” on the heels of another rather rare neoplastic disorder called mastocytosis (there’s that word root again –cyte).  A mastocyte is a mast cell.  The suffix -osis means “condition”, but it often describes an increase in number or a proliferation.  So, mastocytosis is a condition in which mast cells proliferate and in which there is an abnormal condition of the mast cells themselves.  They do not behave like they should.  It was also determined that there should be a spectrum of mast cell disorders, and MCAD and mastocytosis should be on that spectrum–mastocytosis being on the severe end of that spectrum; MCAD being somewhere in the middle.  Anaphylaxis Syndrome, another manifestation of a mast cell disorder, is also on this spectrum.

What does this spectrum have to do with mental health?

It has been determined by specialists studying mast cell disorders that neuropsychiatric disorders can be a manifestation of activated mast cells.  Wha….?


Mast cell activation disease: An underappreciated cause of neurologic and psychiatric symptoms and diseases.

And that’s just one study.

Here’s some anecdotal evidence.  I recently visited my friendly, local allergist who just returned to my city from practicing at the Mayo Clinic.  I have a long history of weird health issues.  Weird health issues.  Also? Over the years, I have acquired a long-ass list of allergies which almost always result in anaphylaxis.  I almost die a few times a year.  I grew tired of almost dying so frequently and made an appointment with an allergist in the know.  After Dr. Allergy reviewed my history and case, she said, “I think you have a mast cell disorder.”  Off to the local mega-versity for fancy tests!  When I saw her for my follow-up, she declared that I was on the mast cell disorder spectrum.  Okaaaaay…now what?

Lots and lots of antihistamines every day to manage the unruly mast cells.  Multiple Epipens placed everywhere in my house and on my person at all times.  Benadryl as well.  Low-histamine diet.  Anaphylaxis action plan in the house, with family and friends, and with me for trips to the ER as well as blood and urine panel orders for the ER every time I show up there with an allergic reaction.  What a pain in the…

Here is what I noticed from the high antihistamine doses:

  • my chronic migraines suddenly got better
  • migraines were treatable with a single dose of triptan and antihistamine (second-generation)
  • GI issues improved dramatically
  • body pains improved
  • anxiety issues improved dramatically

Note: high doses of Benadryl lowers seizure threshold.

Here comes the really interesting part.

Before Grace became symptomatic or entered the prodrome, she was hit hard with a mycoplasma infection.  Mycoplasma is a class of a bacteria that lack a cell wall making them more amoeba-like and invulnerable to most classes of antibiotics because many antibiotics work by breaking down the cell walls.  In the case of a mycoplasma infection, the antibiotics paralyze the bacteria to prevent further multiplication so that your immune system can kill it.  This can take weeks to months depending upon which variety of mycoplasma you’ve got (there are over 200 types), and symptoms can recur years after infection.  Sort of like a bad knee aching before it rains.  Well, aside from mycoplasma making you really sick, what else do they do? This:

Mycoplasma pneumoniae –induced activation and cytokine production in rodent mast cells

What does this mean? The type of mycoplasma bacteria that causes pneumonia and upper respiratory infections activates mast cells.  What kind of cascade can happen from there?

Eosinophilia in Mast Cell Disease

Eosinophilia is an increase in eosinophils which is another granulocyte associated with allergic reactions, parasites, inflammation, and cancer.  In very simple terms, eosinophilia, a high eosinophil count in the bloodstream, would be, for example, common to see during ragweed season if you are allergic to ragweed.  Your eosinophil count would be elevated due to the presence of an allergen.  What does eosinophilia have to do with anything? Mast cells influence eosinophils and vice-versa.  When Grace was released from her first hospital setting, she had eosinophilia.  The pediatrician on duty spoke to me about it.  She didn’t know what to make of it but told me it was noteworthy.  I should look into it.  I told our pediatrician.  No one knew what to do about it at the time.  Then.  But, now? I wondered in light of what I am learning about mastocytosis.

So, what did I do? I experimented.

Grace gets terrible migraines–even now.  It was a hallmark of her prodromal symptomology.  We would have to take her to the specialty hospital for Toradol injections to stop the migraine cycle.  So, when she started getting a migraine two weeks ago, I wondered if a naproxen-antihistamine cocktail would stop it.  Naproxen targets prostaglandins (a chemical mediator produced by mast cells)–although NSAIDs are often contraindicated for people with mast cell problems– while the antihistamine (second-generation) targets certain histamines.  Guess what? It worked.  It stopped her migraine cycle.

I added a second-generation antihistamine to her medication regimen–an AM and PM dose.  She has not had a migraine since, and her mood has improved.  She is no longer experiencing cycling in her mood.  Her focus is better.  She is less irritable and agitated.  Her daily flushing is gone.  She is sleeping better.  Her affect has improved, and persistent urticaria (hives) have healed as well.

MCAD is a new disorder.  Few doctors are familiar with it.  My rheumatologist admitted to knowing what it is but knowing next to nothing about it.  She had little understanding and yet mast cells affect connective tissue and the immune system significantly.

Mast Cell and Autoimmune Diseases


Mast Cells in the Inflammatory Connective Diseases

So, what is the conclusion?

Not everything is always as it seems.  What we know today about our current health status may not be what we know tomorrow.

If you want to know more about mast cell disorders, then go here:

The Mastocytosis Society (recommended to me by my allergist)

MAST ATTACK: EDUCATING PEOPLE ABOUT LIFE WITH MAST CELL DISORDERS (An outstanding blog maintained by a scientist with a mast cell disorder)




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.



Marriage and Caregiving Can Go Together

When I got married, I did not expect to get divorced.  That is probably what every divorced person says.  It’s almost funny.  It’s funny because it’s true.  I expected it to be hard.  I expected it to even be an ordeal at times.  I also expected it to be good.

So, what went wrong?

I don’t have any divorced friends.  I am the black sheep within my social circle now.  I’m also very private by nature so only a select few know the real truth behind my divorce–the reasons I ended it.

Domestic abuse.

I’ve been silent for a while on this blog because I’ve been active elsewhere, documenting the entire process.  It’s kept me sane.

That’s not what I’m here to discuss though.  I’m here to talk about how caring for children with special needs and/or disabilities can and will impact your marriage.  How it will distill your personalities and reveal the flaws and what you can do about it so that you become better, not run over in the process of caregiving.

My marriage was never great.  That should be stated.  It wasn’t even good.  It was middling.  We should never have had children together, and I don’t mean that in a regretful way.  What I mean is that children should be born into a family where they are equally desired by both parents.  In retrospect, I don’t think he wanted them or knew what it meant to be a father.  A good father anyway.  He was the distant, uninvolved father who worked, brought home the paycheck, and involved himself with them at his convenience.  He was Generation X’s Don Draper.

He also rarely involved himself with me in meaningful ways.  One of his favorite ways to spend time was sitting in bed together, parallel reading.  I had something different in mind when it came to spending time in bed together, but he was not generally up for that–unless I wasn’t.  Then suddenly he was.  There were always games afoot.  Psychological warfare.  These games made him the victim in our relationship and in his life.  I didn’t see it until our youngest daughter was born.

Milly was our first daughter to be diagnosed with anything.  She was diagnosed with an autism spectrum disorder and anxiety along with sensory processing disorder at 4 years-old.  She, however, came into this world an overwhelmed mess.  She did not sleep as an infant or toddler which meant that I didn’t sleep.  I was diagnosed with chronic migraine disease and fibromyalgia a little before her diagnosis all due to four years of sleep deprivation and the strain of caring for a young child with some kind of undiagnosed disorder.  That was when I started getting sick.  That was also when he started hiding–running away from parental responsibilities.  In the midst of my search for answers as to why our daughter screamed constantly, he yelled at me, saying, “You just want something to be wrong with her!”

Pause and observe this.  This is denial, and this is a common reaction in couples.  One person in the coupling usually denies or minimizes the child’s “issues” and, statistically speaking, it’s usually the father.  I don’t know why.  It’s a frightening proposition to be faced with.  A sick child.  The “what if” script starts: “What if…what if…what if…”  A natural response might be to run away and pretend that nothing is wrong.  Another reaction is to blame the partner.  They might be doing something to make the child behave that way.  Is it the day care? Is it the in-laws? Is it your faulty genetics? Blame comes on the heels of denial, but blame is simply the emission of anger and emotional discomfort aimed at a target.  We all do it.

It is in this moment, however, when those first wedges are driven into relationships.  When one parent is seeking answers to help a potentially sick child while the other denies and shifts the blame.  This is what sets the stage for marital discord down the road.  Why? It erodes trust, and trust is the currency in all relationships.  In close relationships, I have to know that you have my back, and you must know that I have yours.  When your child is potentially ill and in need of help, that is the moment to come together and share fears.  So when one partner uses the other for target practice, that is a betrayal of that most sacred trust.  It is a form of abandonment within the relationship not to mention one partner has just left the other partner to figure out the problems all on their own.  The relationship was temporarily sacrificed as a coping strategy.

What happens from there? The abandoned partner usually begins remembering all the other times they were abandoned by their mate.  It’s a gestalt experience.  And the seeds of discord have not only been sown but are now being fertilized.  Depending upon emotional maturity, character development, and past issues with one’s family of origin, a person can either get past this or not.  I’ve seen this dynamic play out within other relationships wherein there were children in the middle of receiving a diagnosis, and it definitely played out within my own marriage.  It was a devastating experience.  As the primary caregiver, it caused feelings of isolation, anxiety, and fear, and I didn’t know who to turn to.  My spouse wasn’t on the list because he removed himself.  As far as he was concerned, his kid was fine, and, if his kid was fine, then I was fine, too.

Then, Grace got sick.  There’s nothing like a psychotic episode to wake a person from their oblivious slumber.  His denial reigned supreme.  Wash, rinse, repeat.

Eadaoin hit puberty and bipolar disorder came to the surface.  It was like someone signed us up for some kind of nightmare roller coaster ride, and we couldn’t get off.  I was barely holding it together, and I kept looking to him for some kind of support.  Anything.  He just locked himself away in our bedroom which he had turned into his office.  I had nowhere to go.  I thought that if we could maintain some kind of connection–any kind–maybe we could rely on each other for something.  I pushed for sexual connection.  That’s when the worst of the domestic abuse started.  Clearly, he didn’t want to be involved in anything.  We were on our own.

A year after I had corrective surgery on a hip injury he caused I called it: “I think it’s over.”

He agreed.

So, what is to be learned here?

  1. Always put on your oxygen mask first.  What does this mean? Tend to your stuff! If that means going to therapy, then go.  If that means going to the doctor for a physical, then go.  If that means joining a gym and getting in shape, then go.  If that means changing jobs, then do it.  There is only one you, and, if you are a caregiver, then someone really needs you.  Take care of yourself so that you can be present.  More than that, if you are in a long-term relationship, then be the person who you would want to be in a relationship with.  I can’t emphasize that point enough.  Someone chose you.  They met you, liked you, and then fell in love.  With you.  They decided that they wanted to spend their life with you.  That’s a very big deal.  Never forget that they can always change their mind should you suddenly become a total dick.  I’m being frank here because it needs to be said.  We must always be developing our character and maturing our personality as well as taking care of our bodies so that we can rise to the circumstances that life throws our way.  This is why you must, must, must make your health, well-being, and ontological state a priority.
  2. Assess the state of your relationships.  Doing a survey of how you are doing in your relationships is key to developing your character as well as addressing bad habits that naturally develop over time.  Are you known for anything in particular by your friends and family? Are you the person who loses their temper? Well, get on that.  It’s time to be known for something better.  Are you always late? For everything? Develop your empathy and address that shortcoming.  Doing an honest personal inventory of who you are now vs. who you would like to be is a courageous and valuable thing to do.  It sets a course and provides a spark of momentum.  It’s intentional and says to the important people in your life, “You matter to me.  I know that I affect you.  I want to do better by being better.”
  3. Make amends.  This is a hard one, but it goes a long way.  Talk to the people in your life.  Had my ex-husband and I actually discussed past hurts in a meaningful way and combined them with a plan to heal the wounds (this is accountability), there might be less pain today.  He was never able to engage me in any kind of emotional discussion.  Nothing was ever addressed.  So, I was never able to hold him accountable for anything.  In the end, I was blamed for my own abuse.
  4. Grow up.  I know many people who hold onto childhood dreams of what family and marriage should look like.  They insist on keeping certain traditions alive because they find it personally fulfilling, but it hurts their family relationships.  When you have children with special needs, nothing in your life will ever be all-or-nothing again.  Everything will become about compromising, and you will take the hits.  This will feel painful to you.  I guarantee that.  You will have a moment, at least one, when you step back and look at the landscape of your life, and it will feel utterly unfamiliar to you.  This feeling of depersonalization often ushers in the experience of grief.  It’s at this moment when you feel just how hard it all is.  How much you have lost.  Just be honest with yourself and let it flow.  It’s okay.  You can see the good in the child or children you love while feeling hurt and betrayed at the same time.  That’s the dialectic of caregiving.
  5. Do a proper grief work.  If you do a proper grief work together, sharing your experiences with each other, then you will grow closer.  Ordeal is one of the best bonding experiences.  My ex-husband never went to the hospital with Grace and me.  He never went to an appointment.  He never went to the Behavioral Health ER either.  You know who did? Girlfriends.  Do you know who I am close to now? Girlfriends.  My girlfriends and I remember those early days of the disease onset, and we can even laugh about it as macabre as that sounds.  We were scared together.  They loved Grace, too.  So, I grieved with them instead of with my husband since he never left the bedroom.
  6. Stick together.  Above all, be a couple.  You were together before you had children.  Don’t ever forget that.  Find at least one thing that makes you feel connected and commit yourselves to it.  Never give that up.  If it’s sex, then have sex often.  If it’s hiking, then hike as often as you can.  If it’s watching sports together or playing sports together, then get out there and do it.  Protect your relationship fiercely.  Do not let in-laws tread upon it no matter how well-meaning they are.  This is your relationship.  Make it the number one priority in your life.  Even above your kids.

This is what I have learned after nineteen and half years of marriage and nine months of separation with a pending divorce.  I have never been someone to look to statistics for answers.  Of course, now I am a statistic.  You don’t have to be.

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 State of Grace

I wonder if any of you are wondering how Grace is doing? Or Eadaoin, Doireann, or Milly for that matter.  Even me.  I disappeared for a bit.  From this blog anyway.

Life is never short of roller coaster-like.  At this point, I have chosen the front car, and I’m determined to ride with my hands up while screaming the entire time.  I’m going to be that girl.  One may as well truly commit to “the ride” so to speak.

Grace is doing remarkably well.  In fact, she is so stable that her psychiatrist is left scratching her head and saying, “I’m not touching anything.”  The last time that Grace experienced any psychosis was before she started taking lithium.  As Grace has said, “This lithium sure is awesome.”  Yeah, it can be.  Her psychosis was most evident when she was in the sixth grade.  Unbelievably, she will be starting high school in the fall.  I cannot believe that I’ve maintained this blog since Grace was in the sixth grade.

We have had zero trips to the Behavioral Health ER since sixth grade.  No inpatient treatment since then either.  No day treatment.  I want to sit back and figure out why in hopes that this might be replicated, but I don’t know if it can be.  I think that schizophrenia spectrum disorders are a lot like autism spectrum disorders.  When you meet one person on the autism spectrum, you’ve only met one person with one representation and/or experience of autism.  It feels almost impossible to generalize their experience to others.  So it would seem with something like schizoaffective disorder, bipolar type.

So, why is there stability in Grace when everyone in the field tells me that there should not be? I can only describe factors that might contribute to her stability.  I can’t provide concrete answers, but neither can the experts:

1.  Grace was diagnosed quickly.  Within two months of her first psychotic episode, we had the correct diagnosis.  This is almost unheard of.  Our journey getting any kind of diagnosis was rather painful, and you can read about the journey here.  Nonetheless, once Grace was psychotic, I moved quickly and used the resources available to us at the time.  Grace was already in an In-Home Crisis Management program wherein a therapist visited our home as many times as needed in order to help Grace achieve stability.  This was one reason I was able to hook Grace up with resources so quickly.  We were already in the system.

2.  Grace saw two psychiatrists who were not afraid to aggressively treat her psychosis.  They also were not afraid to diagnose her with schizoaffective disorder.  They wasted little time in trying whatever medications they could to achieve rapid stability.  Grace was a rapid cycler during her hallucinations.  Suicidal ideation is highest during rapid cycling in people with mood disorders.  Grace was suicidal during this phase.  This was when she was admitted into an inpatient treatment setting for medication management.

3.  I researched the hell out of bipolar disorder, schizophrenia, and schizoaffective disorder so that I could have discussions with Grace’s clinicians about her treatment.  Grace saw pediatric psychiatrists.  What I discovered is that pediatric psychiatrists knew little about long-term treatment of psychotic disorders in children.  They talked about therapy, but they had little understanding of what treatment approach would be most effective.  The therapists were of little help as well.  No one knew what to do or how to proceed.  I had to fill in the gap or no one else would, and that is a heavy burden to bear as a parent.

4.  Biologically based mental health disorders are brain-based.  So, I looked to treatment plans for stroke patients to get a sense of how people who have lost gray matter are rehabilitated.  Many people who have lost gray matter due to stroke return to their lives somewhat impaired but fully functional again.  What if this held true for people with bipolar disorder but, more specific, people with schizophrenia spectrum disorders? Schizophrenia is neurodegenerative meaning that white/gray matter is lost due to the progression of the disease.  Could the brain compensate for the losses by rewiring itself? How might the brain be encouraged to do this? This was my primary question.

5.  The kind of therapy that was clearly the best choice for Grace was skills-based.  Due to white/gray matter loss because of the disease progression, Grace’s working memory and, consequently, her executive function skills were diminishing rapidly.  Her affect was affected and had become flat.  She was also losing ground in her social skills.  Milly, her sister with an autism spectrum disorder, had become more socially adept than her.  So, through a state grant, we were able to have a therapist come into our home for two hours weekly and do skills-based therapy with Grace.  The skills covered everything from breaking down everyday tasks into steps (executive function) in order to accomplish them to more emotionally based skills such as, “When I feel frustrated, what can I do with my feelings?”  I made a chart for Grace’s wall that held little cards.  On the front of each card was a feeling such as ‘sad’ or ‘bored’.  On the back of each card was a list of skills that she could utilize to “ride the wave” of that feeling until it passed.  That is one example of a skill–learning distress tolerance.  Distress tolerance is so important in managing both the negative and positive symptoms of schizophrenia.  Learning coping strategies ties for first place here.

6.  Grace attends a school for students with needs that differ from your average student.  In fact, this school does have a program for truly gifted students as well.  Grace’s program is for students with emotional and behavioral disorders.  She was one of six students in her class with high needs.  Her school is also very skills-based and uses the Nurtured Heart approach in its classroom management.  One of the most important things to remember when it comes to managing biologically based mental health disorders is stress management.  Eliminating unnecessary stress is key in promoting well-being.  Changing the school environment was an obvious choice although not an easy task at all.  Grace’s high school will also be within this intermediate district.

7.  Diet matters.  For example, caffeine interferes with lithium absorption.  Grace, therefore, consumes little to no caffeine.  No soda! We are careful with what she eats, and I can’t say this enough–healthy fats.  The brain needs it.  It’s not possible to heal a brain without healthy fats.  Also, sugar is not her friend.  Sugar and schizophrenia are mortal enemies.

8.  Assume competence.  I do this with all my kids.  I assume that they are competent and able to do whatever is asked of them until they prove that they cannot.  It might look harsh to the outside observer, but, most of the time, they can actually do what I’m asking.  It might be hard.  They might not like it.  It might require ten times more effort for them to do what is a cinch for someone else.  But, can they do it? More often than not, yes.  This is what I want them to see.  Their limitation does not necessarily have to limit them.  It might slow them down.  They might have to arrive at the same point as everyone else from a different direction, but they, too, can get there all the same.  Assuming competence is one of the best things I’ve done for my kids.  When they finally do hit the boundaries of their own abilities, then we know where to focus our therapies if that limitation is something that can be overcome.  And, there is nothing more exhilarating than watching a person overcome something that they never thought they could.

Assuming competence is what has led Grace to overcome a lot of self-perceived limitations and, thusly, learn to take risks.  When a person is able to change their personal narrative from “I can’t do that” to “I might be able to do that,” things change.  They are willing to entertain possibilities and try new things.  They are willing to listen to other people give them suggestions.  Suddenly, when a doctor offers a suggestion, the doctor might be onto something.  There is hope.  And, ultimately, it is the cultivation of hope that keeps all of us going because we all have limitations in our lives.  The presence of those limitations need not rob us of our hope for a good future.  Tenacity and perseverance are forged in circumstances just like Grace’s, and she’s got them both in spades, in part, due to her life experience.

Today, she can babysit.  She can put on a puppet show.  She can problem solve.  She also still hallucinates with insight that they are not real, and she experiences hypomania and very mild rapid cycling.  She is aware of what it is and requests to take a lithium earlier in the day.  There are still bad days to be sure in which she levitates around the house like Creepy Susie, but now she is aware of herself and tries to do something about it.  Developing insight is one of the best skills a person can learn, and I am constantly engaging her on a deeper level so that she continues to develop that insight.

Currently, there is no cure for schizophrenia or bipolar disorder.  It is not, however, a death sentence.  There is hope.  Your life and the life of your child will never be the same if this is your child’s diagnosis, but it doesn’t mean that it’s over and done with either.  Different doesn’t mean bad.  Difficult doesn’t mean bad.

It does make for a bigger life with a lot more twists and turns, but, like I said, I’ve committed to the ride.  Front car.  Hands up.  I am going to enjoy this because it’s my life.  It’s our life.  And, most important, I want her to love her life as much as I love her.

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.


Whole-Assing It

I think it’s a good thing to remember what it’s like to be young.  I have vivid memories of middle school and high school.  I even remember Ms. Mercado, my fourth grade teacher, who never let anyone go to the bathroom even if they really had to go.  Consequently, Tyson Landry peed himself in the cafeteria.  I remember turning 18 at the beginning of my senior year of high school.  I was a legal adult! I could vote on who would become the next leader of the free world, but I still couldn’t go to the bathroom without a pass.

I also remember feeling out of place, insecure, and like I was under a captive audience.  That “feeling” that permeates our adolescent years is called the imaginary audience.  When Eadaoin and I were taking the DBT skills class together last summer, the group leaders discussed it.  Apparently, this is a developmental stage in adolescence, and everyone experiences it.  It’s what makes everything seem so much bigger and so much worse.  Those bad hair days are really bad because the brain somehow believes that it’s being watched and even judged by the entire world.  Every detail of every item of clothing is being looked upon.  Every tiny imperfection is magnified and picked apart.  That’s the perception.  This is the reality for adolescents without any DSM diagnoses.  Imagine what the invisible audience might be like for someone with an anxiety diagnosis or a mood disorder.  I think their audience might be full of hecklers and rotten tomato throwers.  What about shy people? Do people carry their imaginary audience into young adulthood? I did although it got better.

I spent most of my 20’s feeling exactly as I did in my teens–anxious and judged.  I spent my 30’s dismantling…everything, and now I don’t really care.  The adolescent experience, however, isn’t the 40 something experience.  As a parent, I must remember what it was like when I was 14 or 16 if I am to make a connection with my daughters even though they are wearing me out.

I think Eadaoin and Grace have crafted a plan to exhaust me before Hanukkah.  I’m not sure to what end but the means are clear.  Eadaoin’s school counselor phoned me yesterday morning.  She had her “I need to handle the parent” voice on.  Oh boy.

“Hi, this is Ms. Payne, Eadaoin’s school counselor.  I’ve got Eadaoin in here with me.  I think we need to talk together so I’m going to put you on speaker, okay?”

I rolled my eyes.  I know, I know.

“One of Eadaoin’s friends was concerned about her which is why she’s in here today.”

Oh boy! One of her friends was concerned? What is Eadaoin up to?

“It seems that Eadaoin is cutting.  Now, before you get upset I just need you to understand that cutting is not a suicide attempt.  So, let me tell you what cutting is…”

Stop.  Hold it.  I know what cutting is.  Eadaoin knows that I know that she cuts.  Eadaoin usually gives me her X-Acto knife when she starts cutting, or, at the very least, she tells me that she’s doing it.  I grew up with a mother who cut often.  It’s not something that causes me to run around flailing my arms in the air.  People generally cut for emotional pain relief and the subsequent endorphin release.  Our pain receptors and emotional pain receptors run on the same neural pathways in the brain.  This is why cutting makes sense as a coping strategy.  It’s highly maladaptive, but it is a strategy nonetheless.

I interrupted Ms. Payne, “I know that Eadaoin cuts.  I know the reasons behind cutting.  Eadaoin has been cutting for over a year.  This isn’t new to me.  Is this why she’s in your office?”

“Oh, well, okay.  No, there is another reason.  Apparently, she has been, on occasion, making herself throw up after she has eaten.”

And, there it is.  My empathetic parent wanted to get up and leave the house.  I felt done.  No more.  My inner well of patience felt dried up.  I needed to start digging.  I did not know what to say.  I could hear Ms. Payne say, “I would say that this is disordered eating.  It’s early.”

My next question was, “Does your therapist know, Eadaoin? Have you told Jessie?”

I knew exactly what she looked like when I heard her quiet response, “No…”


Ms. Payne answered for her, “She was afraid of telling you.  She thought that if her therapist knew that you would find out.”


“What have I ever done that would provoke fear?”

“Nothing.  I don’t know why I’m scared.”

Doireann has always said that everyone is afraid of disappointing me.  No one cares if they disappoint their dad, but it suddenly becomes real if I know.  From my perspective, I just want to know the truth so that I can connect them to the right resources.  They are afraid that I’ll be disappointed.  Truthfully, I was pissed.  I was angry because we’ve given Eadaoin every therapeutic opportunity possible short of an inpatient setting, and she half-asses her way through all of it.  I’ve got to agree with Ron Swanson on this one:


I really want Eadaoin to whole-ass therapy.  So, I asked her directly, “Eadaoin, do you want the inpatient experience? Are you trying to ask for that by increasing your target behaviors? It’s not enjoyable.  Grace can fill you in on that.”

She was quick to deny it.  No! She didn’t want that at all!

“Then, what is going on?”

Little was resolved on the phone what with Ms. Payne trying to be the counselor.  It wasn’t a long call.  She commented on what a short call it was.  Well, we’re not novices at this point.  Eadaoin may appear to be the mental health ingénue, but she’s far from it.  When I finally was able to speak to her in person, she admitted that cutting had become a habit.  She did it when she was stressed.  She also said that she wasn’t quite sure why she was making herself throw up.  She didn’t understand her own motivation.

It’s complicated.  I know that this isn’t necessarily uncommon for 16 year-olds with developing mood disorders.  I also know that it’s also common for teens to think that the rules don’t apply to them.  Somehow they are the first person in the world who doesn’t need to try in therapy.  Sure, their therapist has a PhD, but they know better.  They know more than their doctors.  I saw this in our DBT skills group–adolescent hubris.  No one wanted to look like they actually cared.  I recall feeling the same way as a teenager.

To be honest, Grace is easier to manage than Eadaoin because Grace knows that she needs help.  Grace seeks it out.  Eadaoin, on the other hand, isn’t attached to reality.  She seems to think that cutting and purging are all signs of mental stability and appropriate stress management tools.

Right.  And I want world peace and a self-warming toilet seat.

And a unicorn.