A Slight Misunderstanding

Milly has been sensory seeking all weekend, and it’s been getting on my last nerve.  Truly.  “Mom-mom-mom-mom-mom-moooOOOoooooOOoooom!”

“I wanna go for a bike ride! Can I ask Jack to play? Can I run around the block? Can I go to the park? Can I paint in the basement? Can I…Can I…Can i…I I I I I I iiiiiiiiiiiiiii……”

Grace has been particularly irritable as well what with her week-long migraine.  We see the extra-special neurologist on Tuesday.  We’ve been waiting for this appointment for months!

So, today, as Milly came into the kitchen I girded my loins.  She appeared to twitch.  She looked like one of my cats right before they start ripping around the house.  She sighed loudly and threw herself onto the kitchen floor.  Just what every mother loves to see her child do.

“MooOOOooooOOOm! There’s no one to play with! I’ve asked everyone, and Grace won’t play with me! Eadaoin isn’t here.  MooOOOOooooOOOOoooom!!!!! I wanna play outside! Mom! Mom! There’s no one to play with!” she kvetched as she flopped on the floor like a fish on the shore.

I grit my teeth, sighed, and said, “It’s a gorgeous day, Milly.  Just go outside and play with yourself.”

My husband poked his head into the kitchen with a cocked eyebrow.  I thought about what I’d said and inwardly groaned.  Milly got up and left the kitchen but not without hissing, “I hate playing with myself.”

That is so going to come back to haunt me most likely at an important appointment wherein a doctor will ask Milly to tell him of her likes and dislikes.  Being a contrarian by nature, she will be sure to speak of her dislikes first with a robust tone:

“Well, doctor, I can tell you this.  I hate playing with myself, but my mother makes me do it all the time.  She says that’s it good for me and helps me develop a good imagination and a sense of independence.  Playing with myself, my mother says, will help me in the future for all those times when I’m alone, but I gotta say right now–I don’t like it.”

And, you know what? It’s going to happen! Just like that! Why? Because these things happen to me.  And, the doctor will look upon me with horror and judgment, and then I’ll be forced to explain.

“Well, you see, doc, it all happened one day when she threw herself on the kitchen floor…”

The Swallow Study

Grace went in for her swallow study.  It was very interesting to watch.  The OT in charge was incredibly nice, and she was so willing to think on her feet when Grace couldn’t eat the barium cookie.  We didn’t know if it was gluten-free.  An aside: A barium cookie? GROSS!!!

The big issue with Grace’s swallowing difficulties is the Abilify.  Grace takes 15 mg of Abilify per day to control her psychosis, and this drug works really well for her when combined with Lithium.  It’s the best combination we’ve found.  One side effect, however, of Abilify is swallowing difficulties so Dr. Awesome was on high alert when I observed that Grace was losing weight due to her inability to swallow her food.

What Nancy the OT observed during the swallow study is that Grace’s swallowing “mechanism” works.  What doesn’t work well is her tongue.  When I think of swallowing, I usually always think of my throat.  You know, the action of swallowing.  I don’t really think about my tongue, but swallowing food begins in the mouth with the act of the tongue pushing the food down into the back of the throat.  This was Grace’s problem.  Her tongue has low tone.  Plus, it was noted that she has a high palate.  Her tongue is not able to reach the palate, make contact, and complete the action of pushing the food into the esophagus.  It was noted that she chews her food for a bit too long, and she attempts to swallow her food twice before being able to successfully do this.  There is food left on her tongue and palate after the initial swallow.  Why is this important?

It’s making a stronger case for Ehlers-Danlos.  One of the markers for EDS is a high palate as well as hypotonia, low muscle tone.  I’ve been reading about EDS and hypotonia.  It’s funny because I’ve not seen anyone mention a hypotonic tongue, but that’s possible. (Hypotonic Tongue…that sounds like some kind of band name.)

So, why write post this? Well, when you have a child who presents with something as complex as schizoaffective disorder-bipolar type, the first thing a doctor or clinician will tell the child and the parent when the child says, “I can’t swallow” is that the child is most likely anxious.  Not being able to swallow one’s food appears to be a somatic complaint.  Even adults get anxious and don’t want to eat.  Children often don’t have the self-awareness to describe how they feel in their bodies so they’ll complain of tummy aches, headaches, and weird sensations in their throats particularly if they are anxious.  Anxiety disorders are often co-morbid with bipolar and schizophrenia spectrum disorders because, well shit, wouldn’t you be anxious if you were a kid with such a big diagnosis? All the adults in your world are most likely anxious now because of you.

The problem is that the side effects of the medications used to treat these Axis I disorders have some nasty side effects like tremors and tics…and swallowing difficulties.  So, even if a child expresses themselves and their issues through somatic complaints, it’s important to pay attention.  The other problem is that a child could actually have an unrelated health problem that is masked by the symptoms of her mental health problems.  When a child is psychotic, manic, clinically depressed, or in a mixed state, hypotonia and swallowing problems do not make the Top Ten.  When that child is stable, then you can go back to wondering why your kid has always walked like Shaggy from “Scooby-Doo”.  Here is something to think about: if your child has early-onset schizophrenia or a schizophrenia spectrum disorder, then pay attention to other neurological issues and family history.  Schizophrenia is a genetic, neuropsychiatric disease, and it can be tied to 22q11 deletions on the human genome.  Strangely enough, studies are beginning to find that there is a genetic link between schizophrenia and autism, and that is certainly true in our family.  I have a daughter with autism and another with a schizophrenia spectrum disorder.

All this is to say, don’t dismiss somatic complaints in your child.  Look back on their history and behaviors.  Grace used to chew her food and spit it out when she was very little.  I thought she was just being a kid.  Then, I looked back over my own childhood.  I was the same way.  I, too, had a very hard time swallowing certain foods.  During the swallow study, Nancy the OT asked if she could look in my mouth to check out my palate.  I told her she could, but she would see the same thing.  I know I have a high palate.  She did indeed check, and she nodded: “Yep.  Your mouth looks the same.”  I’m not hypotonic, but Grace’s joint hypermobility problems are similar to mine.  Her shoulders aren’t dislocating randomly, but the kid is like Gumby.  That was me as a kid.  It’s why my swimming coach loved me.  Swimming is definitely a sport that exploits hypermobility.  If you’ve ever watched the Olympic swimmers warm up their shoulders before a race while watching the Olympics, note that their weird flexibility and strange floppiness is not normal.  They will all end up in an orthopedist’s office someday for “blown shoulders”.  And, when the orthopedist looks at their x-rays with that crinkled brow that says, “WTF,” they’ll need only say, “I used to swim competitively.”  The orthopedist will then say, “Oooooh! That explains it.  Well, no more swimming for you.  I’m sending you to Helga, our shoulder PT.  Have fun and work hard.”  I digress…

You, your child, or a child you know might present with many symptoms, and you might be seeing a specialist or many specialists.  Perhaps you feel that something is still not being addressed.  You feel it in your bones.  Go with your gut on that.  Do your research.  Find a doctor who will collaborate and listen to you.  Dr. Awesome has been very helpful to us.  She has been prodding us on to get to the bottom of what is absolutely not psychiatric, and, most important, she believes Grace.  She doesn’t just tell her that it’s all in her head.  Also, just because it’s rare doesn’t mean it’s impossible.  EDS is rare, but I may be the carrier of it.  So, while Grace is being worked up for it, I have to be worked up for it.  Get in there and do your due diligence.

Lastly, don’t give up.  Things get better.  They do.  So, keep going, and…don’t forget to take care of yourself.

Monday Merriment

There are few things that have me in stitches and rolling on the floor laughing my ass off, but this did it for me.  I don’t know if it’s the illustration style, the content, or my daughter’s reaction when she came to see why I was laughing so hard–“HIS FACE! WHAT’S WRONG WITH HIS FACE?” 

I don’t know who to credit for this comic as it was sent to me today without any sources, but, dear artist and illustrator, thank you for your comic genius.  You made me laugh so hard.  So, I give you all the gift of laughter on today, this Merry Monday…

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House A’Fire

Over the weekend, I stepped out to run some errands leaving the girls home alone.  Doireann was upstairs in her lair.  Eadaoin overcame her crippling social anxiety and went to a party hosted at one of her friend’s homes wherein her entire group of friends known collectively as the Nerd Herd would be gathered.  This left Grace and Milly in the living room with all their stuff strewn about.  Grace is obsessed with Muppets so she was making a puppet while watching old episodes of “The Muppet Show” while Camille was playing “Animal Crossing: A New Leaf”.

Everything was fine when I left.

Upon my return as I walked into my home I was practically smacked in the face with a foul odor.  My husband followed.  Not one to mince words he exclaimed, “Damn! It stinks in here.” Scrunching up my nose, I began trying to figure out what the cause of the offending aroma might be.  Did someone burn popcorn? That can stink up a house like nothing else.  No.  No burned popcorn.

I started to unpack the groceries, but I could not concentrate on the task at hand.  The smell seemed to linger or even grow worse! Lord, why did my house smell like an old diaper mixed with Indian food and boiled cabbage? I began opening windows attempting to get away from the oppressive scent, but it seemed to follow me.

Maybe it was one of the cats? I stared at them.  They looked normal.  For cats.

In my frustration, I began talking to myself.  “Why does our house smell so bad?! What if someone dropped by? It smells like ass in here!” That’s when Grace spoke up.

“Oh, yeah, sorry.  I’ve been lightin’ it up in here…”

You have to know Grace to understand why her statement is so hilariously shocking.  She is utterly feminine and girlish.  She came out of the womb with a bedazzler.  When she was quite small, I used to say that Liberace was her patron saint.

“You’ve been...lightin’ it up in here, you say?” I asked.

“Yeah,” Grace admitted with some embarrassment.

“I see.  Well, please do open a window,” I politely asked doing my best to stifle my laughter.

I returned to the kitchen to finish putting the groceries away.  My husband asked me if I had discovered the source of “the stank”.  I informed him that I had indeed solved the mystery.

“Well?” he inquired.

“Grace told me that she was lightin’ it up in here while we were gone.”

He paused.  He bit his lip.  He tried to look serious.  He asked, “She said what?”

“She was lightin’ it up!”

He put his hands on his hips and laughed, “Is that right? She lit it up?”

“Uh huh.  Grace has made the leap.  We now live with a 13 year-old boy.”

“Yep.  I think we do.  Speaking of which,” he said grabbing his iPad,” I think I need to go light it up myself.”

I don’t know which sound was louder–the sound of my husband locking the bathroom door or the sound of my eyes rolling.  In any case, between Grace and my husband my house is on fire almost daily now.

I need an extinguisher.

Ginger and Snowbell Live in A House

We have two cats.  You’ve already been introduced to our resident evil mastermind, Snowbell.

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Snowbell the Cat

It’s a suitable name for her really.  She’s a diminutive, blue-eyed girl with an almost lilac coat who was, I suspect, the runt of her litter.  She, therefore, has an obsession with her food dish being full at all times.  She compulsively checks it throughout the day just to make certain that she cannot, under any circumstances, see the bottom of the dish.  If her dish is full but the bottom of the dish is visible, then Snowbell behaves in one of two ways.  She might choose the Sicilian Mobster approach wherein she will find me and make threats upon my mortal body.  This involves staring at me in a sinister way from a corner of the room, creeping quietly under furniture unbeknownst to me, and then launching attacks upon my ankles in a Moray Eel like fashion or simply launching herself at my head and upper body while I’m sitting.  Or, she will utilize the Chinese Water Torture strategy.  This is always used between 3 and 4:30 am.  This involves making annoying scratching sounds on a piece of maple furniture in my bedroom.  She always begins with a light, more polite sort of scratching.  If my husband or I do not respond, then she makes a more annoying scratching sound.  If we still ignore her, she’ll move on to the mattress and give it a nice, long S-C-R-A-T-C-H! Historically, my husband has reached down and grabbed her little, insolent scruff and tossed her out into hallway, thus, locking her out of our room.  Snowbell has made adjustments to her strategy now so she scratches and runs.  My husband can no longer catch her.  If we still ignore her, she moves on to our bodies.  She always goes for my husband.  She usually scratches his face and runs off immediately.  She’s a damn smart cat.  My husband usually sits up in bed, thoroughly pissed off at the cat and yells something absurd like, “What the hell was that for? Get your damn ass off my bed or I’ll cut your tail off and wear it to work!”  Snowbell’s personality and total obsession with having an abundantly full food dish dictates that she will not give up until someone gets up and fills her dish.

My husband was away on business not too long ago, and I knew that Snowbell and I were going to be in for a stand off in the night.  I want my sleep.  She wants a full dish.  Obviously, we both can’t have what we want, and I am not going to lose this battle to a house cat.

She started scratching around 4 am.  Unlike my husband, I am not of a reactionary disposition, and I am also very tenacious.  I was convinced that I could outlast Snowbell.  I waited in a groggy state for her to begin her annoying scratching which she did.  I waited for the mattress hit and run.  She is predictable.  I then watched her jump on the bed.  She quietly approached my husband’s side of the bed.  She began looking for him.  Aha! He wasn’t there.  No man face to maul.  What would she do? I watched her consider her options.  In our house, my husband is the beta where the animals are concerned.  I am the alpha.  When we had our Australian Shepherd, I was her shepherd.  She loved my husband, but that dog followed me everywhere.  My husband would issue her a command, and she would ponder obeying.  If I even looked at her funny, her behind hit the floor.  It’s much like that with our cats.  If they are up to no good, my husband can give his command in his best executive voice, and they do listen.  All I have to do is show up.  So, when Snowbell turned her head and gazed at my face, stalked toward me, and lifted up her paw, I opened my eyes widely and stared directly into hers.  She froze.  “Don’t you even think about scratching my face, Snowbell, or I will turn you into a hat!”

Now, people say that animals don’t understand spoken language.  They understand tone.  I’m not entirely sure what animals understand because upon the utterance of my words, Snowbell backed up her feline body, slinked to the foot of my bed, let out a defeated yowl, and fell over as if she had just died.

Victory was mine.

I, of course, told my husband of this great triumph, but he didn’t feel the same pleasure as I.  He has never defeated our tenacious house cat.  He doesn’t know Victory’s sweet taste as I do.

Our other cat is Snowbell’s sister, and they do behave as such.  Ginger (she came with that name) is opposite in size and disposition to Snowbell.  She is very large and quite fat.  While Snowbell seems to be utterly feline in her nature, Ginger is almost canine.  She likes everyone–even dogs.  She greets everyone at the door upon their arrival, strangers and friends alike.  Snowbell also sits by the door when people arrive, but this doesn’t seem to be motivated by friendliness.  She acts more like a bouncer at an exclusive club.  People have commented that they feel judged by Snowbell.  She actually causes people to feel uncomfortable! It’s her cold stares, I suspect.  Like there’s an old misanthropic judge residing in her body determining the content of the character of all my guests.  Ginger, on the other hand, just wants to love everyone.  Her size reminds us of a large teddy bear.  Ginger will let my children hold her, drag her around, and cuddle her.  If she is bothered, she doesn’t say.  She will even let them wrestle her on the floor–gently, of course.

Both of these cats are half-Siamese which means they have a bit of that breed’s temperament.  Siamese cats are very social cats as well as a needy breed.  They do not tolerate being alone often.  They remind me a bit of dogs in their need for attention and companionship.  This probably explains Ginger’s disposition.  So, why write about my cats? Well, there is something extraordinary about them.

Ginger has a special sense that I’ve not encountered in any of my other pets.  Ginger knows when anyone in the family needs emotional help.  She has become the Therapy Cat.  I didn’t realize that she was like this during the first year of owning her, but I have watched it evolve.  When Grace was going through her diagnosis process last year and enduring so much suffering, Ginger followed Grace everywhere, chirping, meowing, and yowling as Siamese cats do.  Ginger possesses that Siamese voice and all its quirky vocal characteristics.  She is extremely talkative and will engage us in very long conversations.  Grace became annoyed by Ginger’s constant attention, but Ginger would not leave her side.  Ginger insisted upon being carried around like a sack of potatoes.  She slept on top of Grace like a weighted blanket.  She groomed Grace’s hair.  She sat next to Grace on the couch.  Grace came to rely on Ginger, and Ginger clearly loved Grace.

Eadaoin, however, began to tell me how much time Ginger was spending with her.  How is this possible, I wondered.  Ginger is always with Grace.  Well, Eadaoin was hypomanic and up very late.  Grace went to bed at 8 pm.  Eadaoin was just getting her second wind when Grace fell asleep.  So, Ginger would apparently wait for Grace to fall asleep and then spend the evening and midnight hours with Eadaoin.  Eadaoin would tell me that she and Ginger talked, played, and cuddled.  She began to call Ginger by a nickname after a cartoon that she loved: ‘Pusheen’.  Pusheen looked just like Ginger.  Ginger will now answer to Pusheen if Eadaoin calls her that.  At that same time, Milly told me how she was waking up with Ginger.  She would wake up in the night feeling unable to sleep, and Ginger would appear.  They would snuggle together.  Ginger would let Milly hold her tightly like a teddy bear.  Milly would fall asleep holding Ginger like this.  I was amazed! I started observing Ginger.  Sure enough, this cat would go from child to child checking on them in the night, being for each child what she could to ease them.  If she sensed that one child needed prompting to engage her, she would chase her.  She would yowl and carry on until that child finally sat down and played with her.

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Pusheen the Cat

Cats are territorial.  So, Snowbell and Ginger will play ‘king of the mountain’ in our living room over one of the chairs.  It’s Ginger’s chair, and Snowbell wants it.  Snowbell has claimed my bedroom.  Ginger is rarely allowed in there these days, but I have watched something odd happen.  Ginger gave up her living room chair three days in a row this week.  Snowbell began sitting on it on Tuesday.  This NEVER happens! I wondered what dynamic changed in their relationship to allow such a power shift.  Well, I have been enduring some things in my personal life that have been causing me some pain.  I haven’t openly displayed that, but animals know things.  I don’t know if animals can smell stress hormones or if they are simply sensitive to our tone of voice.  Nonetheless, animals are far more sensitive to the life of humans than we are to them.  So, for the three days that Snowbell lounged on Ginger’s living room chair, Ginger quietly crept into our bedroom after I went to bed and curled up by my side as I fell asleep.  Snowbell did not come to sleep on the foot of the bed as she always does.  She slept on the chair…so that Ginger could sleep with me.  Ginger was being my therapy cat.  I don’t know how long she stayed.  She’s gone in the morning, but, if you met this cat, you would know that there is something special about her.  She’s got an intense nurturing drive.  She just wants to make it better–for everyone.  Even if she doesn’t know you.  I find that to be extraordinary.

As much as I’ve made Snowbell out to be a nefarious little thing, I’ve not told you one of her most amazing characteristics.  Snowbell is the protector, and she will beat up anyone or anything that hurts Ginger or, well, any of us.  Our Aussie, who died last year, didn’t like cats very much, but she knew better than to openly go after Snowbell.  She would, therefore, go after Ginger from time to time.  Snowbell would hear these run-ins and run from wherever she was in the house and attack the dog.  She would stand in between her sister and an Australian Shepherd bristling and ready for a brawl.  Snowbell is still like this today.  If anyone is heard to be crying, Snowbell runs from wherever she might be in the house to check on the sniffling person, ever ready to take on the offending party.

Animals are a blessing to the world.  They are like people.  Some are ornery.  Some are sweet.  Some are a bit mean.  Some are energetic and joyful.  Some just want to be left alone.  Some are overflowing with empathy and compassion.  Some just want a full dish of food and a nice pat.

I know a lot of people who think that cats are just independent creatures who want to eat and sleep.  I’m the first to disagree with them and say, “Well, you haven’t met my cats then…”

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Ginger the Cat

The Complete Pig

Yesterday was my birthday.  My birthday experience yesterday was drastically different from last year’s experience.  I’m still having trouble believing that a year has passed.  Here’s one bit of advice: never let your doctor schedule you for a mammogram on your birthday.  I turned 40 last year, and my physician thought that my 40th birthday was the perfect day to welcome me into the fold, so to speak, of 40 year-old women who get their boobs manhandled annually.  This was not an auspicious start to my year.  I ended up getting a less than ideal result, going in for a second, extra-fancy mammogram wherein the oncologist informed me that he didn’t like what he saw, and he did a biopsy on the spot.  Welcome to 40! So, why would I schedule myself to see my neurologist on my 41st birthday? Because something is wrong with me.  Clearly…

I really like my neurologist and her physician’s assistant.  They are both great people.  The appointment was at 9:30 AM, and this was just a med check appointment.  After going over the same old things, Becky, the PA, drew a conclusion that I’ve been waiting for–I need to go to my primary care physician and get a work-up for Ehlers-Danlos Syndrome.  Well, finally! Someone connected the dots.  I wasn’t going to do that for them.  Ehlers-Danlos Syndrome is a rather rare genetic disorder wherein the body’s connective tissue isn’t quite up to snuff.  This is rather good because Grace has some issues that might be explained by EDS like difficulty swallowing as well as her gait issues.  Hypotonia can be attributed to EDS.  Grace’s swallowing study is on Monday, and I will mention the EDS to the staff at the hospital.

I did enjoy a very peaceful day yesterday.  I was given some lovely gifts from some lovely friends.  My favorite things are just time spent with people, and I even got that! A lunch date and a coffee date! AND my lovely friend bought me coffee with extra whipped cream because she knows how much I LERVE it!

I wanted to share something amusing about a gift I received.  A year ago, Grace was admitted into an inpatient setting for the first time.  She had just been diagnosed with a mood disorder and released from day treatment in a manic state.  We didn’t know what to do with her.  They were treating her with high doses of Zoloft.  Three days after her release she became suicidal, and we found ourselves at the Behavioral Health ER.  I remember feeling numb.  My mother has Borderline Personality Disorder, and I remember telling my husband that I was never grateful for growing up with a person who was constantly threatening to commit suicide–until that day.  I had some inner resources to draw on in those moments with Grace. This was familiar to me.  I didn’t like it, but I knew how to handle myself.  I didn’t panic.  I just found my peace, compartmentalized my fear and panic to deal with later, and turned my attention to Grace.  My husband had to stay home to care for our other daughters who were legitimately frightened so my business partner and friend joined me at the hospital.  She knew Grace well, and she was insistent on being with us–“You can’t go through this alone!”

We waited with Grace until the psychiatrist-on-call could see her.  Grace was admitted and sent up to the Children’s and Adolescents’ Behavioral Health Unit on the 7th floor wailing the entire time.  I was vibrating.  My friend was trying to distract Grace by talking about what they might do when she got out.  Nothing comforted her.  She was stuck in clinical depression.  She was fixated on going home.  She hated it there.  We were put in a little room that appeared to be some sort of library.  Someone locked us in.  Grace heard the ‘click’ and the wailing grew louder.  My friend looked at me and exhaled slowly.  This was enormously stressful.  A nurse came in to complete the intake.  She had a thick Caribbean accent, and I could scarcely understand a word.

“So, till may vot iz dah rayzon daht Grayz iz hayre?”

“She was just discharged from the day treatment program attached to this facility.  If you look….”

I speak French, and my friend’s first language is French.  I thought perhaps we could even switch to a different language, but she insisted on speaking English.  Grace’s wailing was so loud that I couldn’t hear the nurse’s questions nor could I understand her anyway, and I am pretty adept at parsing words! My friend decided to try to distract Grace by picking out a book from one of the shelves.  I remember hearing her say, “Hey Grace! Let’s read this book.  This looks good.  Hmmm….The Complete Pig.  What’s this about? Oh look, a book about pigs! Let’s see, oh, well, whadya know, it is a book entirely about pigs! I’m surprised a picture of my husband isn’t in here!”

Grace stopped crying.  The nurse and I turned our heads around and stared at my friend.  There was silence.  My friend looked up from her perusal.  “What?” The nurse just stared at the three of us with cold eyes.  I couldn’t take it anymore, and I started laughing hysterically.  I couldn’t answer her questions anymore.  The entire situation seemed utterly absurd to me.  My daughter was wailing and suicidal.  My friend was reading The Complete Pig out loud, and I couldn’t understand the nurse’s questions.

When the intake was finally complete, the nurse led Grace to her room and away from us.  I wanted to burst into tears, but I couldn’t cry in front of Grace.  I had to stay positive–“You’ll be home in no time! We’ll visit you tomorrow!”  I watched her walk away, her cries echoing down the hall.  I heard another nurse say behind my friend and me as we approached the elevators to leave, “The two moms will be coming back tomorrow, I think…” I looked at my friend trying to stifle an outburst of laughter, “Two moms?”

A year later, Grace looks nothing like she did that night.  We know that she doesn’t have a mood disorder.  She’s on the schizophrenia spectrum.  She’s properly medicated now.  She hasn’t had any suicidal ideation since last February.  Thank God for Lithium.

Yesterday, my friend gave me two presents.  She laughed ominously as I opened the first gift.  Lo, I held in my hand:

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“You bought me The Complete Pig? Ohmigod…” I was instructed to open my second gift tout de suite!

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“A pig mug and spoon?” My friend snorted and said that she was briefly overcome by a moment of girliness and needed to buy the pig mug.  “You know, that book was a bitch to find.  I think it’s out of print!”  My friend isn’t a sentimental sort of person.  She’s definitely an action above words girl.  But, I knew exactly what she was trying to tell me with this gift.  We have both been through hell and back since last August.  Her daughter has been through quite a bit, too, and we’ve leaned on each other.  For us, The Complete Pig is more than just some weird book that she read out loud in one of the more painful moments for Grace and myself.  It represents friendship under pressure and in times of suffering.  Loyalty.  It says, “I’ve got your back, and I’ll even make you laugh when it seems that there is absolutely nothing left to laugh about.  I’ll find it.  And, you’ll make it through this moment, too, because you’re not alone.  Grace isn’t alone either.”  This is how we flourish in hard circumstances.  We do so in the company of loyal, loving, and very imperfect friends.

I think everyone needs to read The Complete Pig: An Entertaining History of Pigs during a crisis.  Better yet, have someone else read it to you.  Pigs are social creatures.  So are humans.  Pigs are reminders that we were never meant to go it alone.  We need each other in all times–good and bad–to be complete.  Just like pigs.

Alchemy

I can’t believe I’m going to write this and yet here I am about to do so.

My husband and I went out for coffee yesterday, and I heard myself say out loud to him, “The best thing that could have happened to Grace is schizophrenia.”

He looked at me strangely, and I said, “Let me explain.”

I went on to say, “Think about Grace before her diagnosis.  She was the one kid in our family I could not read or reach.  She had so internalized all her experiences and emotions that I couldn’t relate to her or reach her.  She wouldn’t self-advocate, report, or communicate.  She was slipping through the cracks because of Milly.  I tried to run interference between Milly and Grace, but I couldn’t be there all the time, and when I wasn’t there Milly would hurt Grace.  Her autistic anger was always aimed at Grace, and she would bite her, hit her, and beat her up.  What would Grace do? Nothing.  She would just internalize everything and never tell me anything.  Look at her now.  She is completely open.  She can talk about her feelings.  She is flexible.  She is willing to try new things and take risks even when she has to fight through paranoia and anxiety.  She takes a risk anyway.  She has better coping strategies than most adults.  She knows about guided imagery, aromatherapy, cognitive distortions, deep breathing, and she knows her limits.  If I’m honest, she is probably the healthiest of all our kids when it comes to emotional health at this point.  And this happened in one year.  She’s still learning and growing,  but she is so self-aware now.  That is such a gift.  She would never have gained such ground had she not had a psychotic break.”

It was a strange epiphany.  The very idea felt foreign to me.  Was I really starting to feel, of all things, grateful for Grace’s schizophrenia? Was her schizophrenia a stepping stone to her emotional healing? It wasn’t an idea I was used to, and part of me was resistant.  Last week, however, two people sent me Eleanor Longdon’s TED talk:

She was diagnosed with schizophrenia during her first year of college after admitting to a physician that she was anxious, sad, and hearing voices.  She descended into madness, and, at some point, she was told that it would have been better had she been diagnosed with cancer because at least cancer can be treated.  I’ll admit that during Grace’s darker moments I have wished for something more treatable.  Longdon said that her mother never gave up on her, and this brought me to tears.  We all need someone who never gives up on us.  She went on to say that a doctor suggested a new way to experience her voices whilst she was in the middle of her psychosis.  What if her voices were trying to give voice to the parts of herself that were repressed, ignored, traumatized, and abused.  What if she needed to listen to them and enter into a therapeutic environment wherein these voices could be acknowledged, sort of like breadcrumbs.  Follow the breadcrumbs and find the source.  Administer healing to the wound and perhaps Longdon would be empowered to move forward.  It was a revolutionary idea.  Schizophrenia has never been viewed as treatable in therapeutic terms because, in part, it’s neurodegenerative.  Could such an approach work? For Longdon, it did.  Her TED talk is breathtakingly moving.  I cried throughout most of it.

I began to look back at Grace and her experience of schizophrenia.  She didn’t hear voices.  She saw men and one woman–The Three Men and The Creepy Lady.  They were after her.  They were armed.  They were dangerous.  The Creepy Lady was in charge of the men.  The more anxious and frightened Grace became in her life, the bigger their weapons became.  The more helpless and disempowered she felt, the more often she saw them.  Conversely, the more empowered Grace felt, the less she saw them.  Grace still hallucinates even on 15 mg of Abilify.  I have a friend who is on Abilify.  He’s 250 pounds.  His Abilify dose is 2 mg if that lets you know just how medicated Grace is.  She hallucinates when she feels anxious, disempowered, and afraid.  I have always told Grace that her hallucinations are the result of her fear and anxiety because they only show up when she’s not coping well. What if we took it a step further?  What if, as Longdon now says to her voices, Grace acknowledged her hallucinations?  What if she simply said, “Thank you for alerting me to this problem.  I will pay attention to that”?  She could then go to a place that she liked and do a self-check.  Is she nervous? Is there something feeding her anxiety? Is she feeling disempowered in an area of her life? Once she finds the issue, she can then direct her focus and utilize her coping strategies.

This certainly isn’t a common treatment for schizophrenia spectrum disorders.  Hope and schizophrenia typically don’t go together.  When Grace and I sat in Dr. Awesome’s office last October to get a second opinion, I recall her somber expression as she told me that the prognostication would be poor.  I felt my stomach fall out, and I knew what she was implying.  My grandfather had schizophrenia.  He died by suicide after spending forty years in an institution.  His wife, my grandmother, also died by suicide after years and years of rootless wandering.  A family history like that always garners the attention of psychiatrists.

I know the truth about our situation.  Children diagnosed with schizophrenia before the age of 12 don’t have a good prognosis.  I’ve done my reading, and I suspect the reason for their suffering is due to neurodegeneration.  If the onset of schizophrenia is 18 or 25, then there is less time for the brain to lose white matter than if one is diagnosed at 11.  While I am a realist, I am also hopeful.  The brain is the most complex part of the human body, and I’ve seen stroke victims who have lost nearly half of their brain recover due to neuroplasticity and the brain’s extraordinary capacity to reroute its own wiring.  If a brain after a stroke can do it, then why can’t a brain losing white matter due to schizophrenia do it?

There was one thing that Longdon said in her TED talk that deeply resonated with me.  She said that it was time that mental healthcare providers stop asking people, “What’s wrong with you?” and begin asking “What’s happened to you?”  We all have had experiences that have affected us for both the better and the lesser.  In our narratives about our lives, there are metaphorical Persian rugs woven with pain, joys, sorrows, adventures, regrets, deep loves, betrayals, meaningful relationships, dreams, hopes deferred, fears, and even traumas.  We all have reasons to be anxious.  We all have reasons to be afraid.  We all have reasons to feel paralyzed at times or even feel rage.  Nothing is wrong with us because we feel intensely or even get stuck in a feeling.  Sometimes we need help being led out of what has happened to us into the present experience because the intensity of our emotions is too overwhelming.  Suffering and the events that surround suffering are part of the human experience, but joy, enthusiasm, goodness, kindness, forgiveness, and even happiness are also part of the human experience.  Finding a safe space to explore our narratives so that we can make room in our lives for the entirety of the human experience is part of the therapeutic process, and I do believe at this point that it might all begin with the question, “What’s happened to you?”  If we follow that question up with “What do you want?” then you have two questions that can catalyze immense change and growth.  Those are the two questions that were asked of me a decade ago by a male therapist who believed in me after everyone had washed their hands of me.  Everyone told me that I would never be happy.  I would never be a healed or whole person.  I would need to settle for a life riddled with anxiety and fear.  It simply wasn’t possible for a victim of human trafficking to ever know peace or happiness.  He didn’t agree, and he walked with me for three years, never once giving up on me.  I am not who I was ten years ago because a handful of people didn’t give up on me.  They believed in me.  They didn’t think that something was wrong with me.  They knew that something had happened to me, and they set out to walk with me while I dedicated myself to the healing process.

This is what I want for Grace.  No matter what, I don’t think that something is wrong with her.  Something happened.  She has a new storyline in her narrative, and I will walk with her until we add another storyline be that the theme of endurance or persistence.  Perhaps it will be about the love of family or something much more personal for her that I won’t be privy to.  It’s her story, and I want her to be the star in it.  I want this for everyone that I know and even don’t know, too.  I want everyone to be the stars of their own story and know that even the most seemingly tragic event can be spun into gold often when we aren’t expecting it.  It’s alchemy.  You and me? We get to be psychological and emotional alchemists.  If we commit to the process of moving forward, committing to each other as well as committing to our own hearts, we get to be a part of that mysterious transformation wherein devastations are rebuilt into castles, and our hearts become gold.  For me, this is one of the greatest privileges of life.  Grace’s schizophrenia was lead, but her own commitment to getting better has yielded gold in her character, her relationships, and her personality.  What’s more, she shares this gold with everyone she meets, and others benefit.  This is the profound beauty of humanity.  We are all alchemists.

No matter how Grace’s story unfolds, I can say this: a year ago we were living in a nightmare, and the word ‘schizophrenia’ felt like a death sentence.

Oh, what a difference a year makes.