Reframing The View

I like to reframe things.  Why not? Life is full of experiences we’d rather avoid–pelvic exams, traffic, canned asparagus, Andrew Dice Clay–so learning to take a different view of an unpleasant experience is essential if we’re going to grow and progress in spite of our circumstances.

Enter Dolores.  Dolores called me up last week.  Dolores is a “certified social worker” who works for our insurance company.  Let me rephrase that, Dolores is a certified social worker who, according to a close friend, works for Satan’s left testicle.  When Grace was in the hospital our insurance company harassed her treating psychiatrist on a daily basis, and they forced her early release.  Her psychiatrist wanted her there another three to five days, but our insurance company refused to cover her inpatient treatment.  This is very typical.  So, the next time someone goes postal in a shopping mall and it’s revealed on CNN that said maniac was mentally ill and untreated, you’ll know one of the primary reasons why–insurance companies.  They loathe paying for treatment.  It’s also why many of us call them ‘Satan’s left testicle’.  I digress…

I picked up my phone and there was this voice which I can only describe as Marge Simpson’s sister, Selma Bouvier, except with a distinct Kentucky twang:

“Hello, this is Dolores.  I’m from United Behavioral Health.  I’m a certified social worker.  I’d like to talk about aftercare.  So, let’s get started.  We’re going to talk about what’s needed now, but first I’d like to get into the reasons for admission so tell me what was going on at the time of admission.”

That was it.  There was no “How are you? How is Grace?”  She didn’t even use Grace’s name.  She just went for it.  I was shocked.

Here’s one of the silver linings of this journey I’ve taken with Grace.  I’ve learned assertiveness.  I used to be a doormat.  I used to apologize for breathing.  “I’m sorry! I’m sorry! I’m sorry!” No more of that! These people will talk you into a corner if you let them, and it takes a certain brand of firmness to deal with them.  Not rudeness because it’s important to know how to be collaborative when necessary.  Firm politeness.  Dolores, however, was a different creature.

“Dolores, who are you calling about? Are you calling about one of my children?”

“Oh, uh, yes.  I’m calling about Grace.  Let’s get started on her aftercare.  So, she’s taking Lamictal.”

“Dolores, we need to stop.  Do you realize that you have not asked me one question? You have not asked how Grace is doing? You have not asked how I am doing? You have not asked if this is a a good time to call? You are representing the insurance company that bounced my daughter from the hospital against her treating psychiatrist’s orders.  So, from where I’m sitting, there might be a conflict of interest in my talking to you.  I have aftercare lined up.  Grace has profound needs.  Don’t you have her file in front of you? If you know her medications, then you know her diagnosis.  Have you even read her file? Have you looked at her date of birth? You can’t simply call up a family who’s been through what we have and behave this way.  You’re a social worker! You ought to know better!”

Dolores was silent.  Dolores tried to speak, but she could only stutter.  I waited.

“I’m sorry.  I…I should have introduced myself properly.  I’m not affiliated with that part of your insurance company.  I really am a resource for you.  I went about this all wrong.  I’m sorry.  Really.  I….I don’t know what to say.  I’ll give you my number, and if you need any help, then please don’t hesitate to call me.  Now that I’m looking at her file I can see she’s received some pretty big interventions, and I can’t imagine what you and your family have been through.  I…here’s my number.  If you need me…”

I took her number, and I have it.  I doubt I will use it.  We have almost too much aftercare lined up.  It’s ridiculous.  What I have observed in the mental healthcare community is a lot of burn-out in clinicians.  Many people have been doing this work for a long time, and they forget how to treat people.  Dolores sounded like she’s one step away from retirement which tells me that she’s seen a lot.  Maybe too much.  Empathy burn-out is not uncommon, and that’s why it’s so important that we learn how to advocate for ourselves.  Some people either forget how to treat others, or they find their little patch of influence within the kingdom of mental healthcare and rule it with an iron fist.  This is where you’ll find your Nurse Ratcheds.  Oddly, they dwell in the medical records department, too.  You’ll recognize them by their love of the ROR–release of records.

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“You want those records? Sign this…and this…and this…and give me your left retina. We need it for future scans.”

All this is to say that you can reframe all your experiences with your special children and loved ones.  It is rare to find a person who comes by self-advocacy naturally.  We learn it experientially, and you will have myriad experiences to learn it once you have a child or loved one with special needs.  It might seem like a burden, but, if you reframe it, it can become a privilege.

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Slaying Dragons

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I have to say this so that it’s on the record.  My life is not sad.  Our family life isn’t dark and pervaded by doom and gloom.  I don’t think that our life is really that different from yours.  We all have dragons to slay.  Some are behemoth fire-breathing drakes, majestic and awe-inspiring in their ability to infuse us with paralyzing fear.  They’ve lived in the territory of our family lines for generations, just over the hills, demanding that pound of flesh from our ancestors, grandparents, parents, and now us, and we’ve had enough.  It’s up to us to do something different if that monstrous beast of oppression is to be killed once and for all.  Some dragons are smaller and more annoying, stealing joy, resources, and time.  Some people might even keep one or two little ones as pets giving them cute names like “social drinking” and “cutting”, but, in the end, they’re vampiric.  Underneath our clothes, we’re all wearing armor, and we’re all beat up somewhere.  I suppose it’s just a matter of who has dropped their swords and who has not.

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So tiny, so cute, but not so nice…

Happiness is a choice, isn’t it, because those dragons are everywhere.  It’s black and white, and, if you know me, I will rarely say that.  I love grey.  I live in the grey.  In this case, however, it’s black and white.  We are either engaged in our lives, or we are not.  We are either willing to take up our swords and fight for our happiness and the capacity for happiness for those in our lives, or we are not willing to do that.  If we can’t, if we ourselves are hindered because of one of those dragons, then it’s up to us to ask for help from another intrepid fighter.  Sometimes it means going low, facing darkness, feeling things we’ve not wanted to feel, engaging in a proper grief work, letting go of resentments, forgiving people who really don’t deserve it, and taking an inventory of our inner lives.  To some, this seems wasteful, but what do you think invites the dragons in the first place? What might they feed upon? Us.

I was once in a place in life where I was too weak to even stand up much less wear armor or fight for myself, but I found that it all started with one choice.  “What do you want?” It starts with knowing what you want.  “I want to be well.  I want to be empowered.  I want to be happy.”  And, step by step, army crawling my way through the mud until I could stand, I progressed…until I could not only fight for myself but for those around me who were still too weak to advocate for themselves.

You’ve read my thoughts here as we enter into new territory with a child diagnosed with a lifelong illness.  I’ve written it here because it helps me organize my thoughts, and it’s cathartic.  Better to let it go than stuff it down and swallow the bitter pills.  I don’t, however, want to be misunderstood.  I have not made my dwelling place in grief.  I do not live in a place ruled by sadness and mourning.  These emotions are a necessary part of dealing with a child’s mental illness diagnosis as well as the subsequent loss of friendships, and, if a parent is to properly advocate for and raise their children, then they must attend to their own grief process.  That is a vital part of self-care and modeling mental health to one’s family.  American society does not “do grief” well.  Loss is part of life, and loss doesn’t just mean ‘death’.  Loss in all its forms from the loss of health, relationships, jobs, and financial resources to death and  the loss of dreams and hopes deferred  are all a part of the human experience; and, loss is a dragon that every one of us will face.  How we face it is what determines the course of our futures.

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I know people whose lives have been taken prisoner by the Dragon of Loss much like Smaug the Terrible invading Dale and laying claim to Erebor in J.R.R. Tolkien’s The Hobbit.  Feeling overwhelmed and kicked out of their own lives, they become impotent, rootless nomads, wandering around in a state of constant mourning overcome by what I can only describe as a ‘spirit of victimization’.  They are transformed into the Professional Victim, perpetually complaining about how difficult their lives are, how horrible their children are, and how much they hate their children’s problems, disease, and circumstances.  They have become blinded to their own abilities, talents, and capacity for strength and resiliency.  They perpetually look back at what used to be, yearning for what was, hating what is, fearing what is to come.  This paralysis is the result of avoiding working the grief process.  The Dragon of Loss is demanding their pound of flesh, and they are giving it up willingly whether they know it or not.

I have lived as both people–victimized and empowered.  Sometimes I’m battling both narratives at the same time.  “Who are you? Are you resilient and strong, or are you fearful, paralyzed, and unable to ask for help? What will you choose right now?” Sometimes people release their own dragons into our lives leaving us little choice but to deal with our own dragons and theirs as well.  What’s the most common dragon you’ll deal with? The Dragon of Judgment.  The interesting thing about this dragon is that he never travels alone.  He always has his partners in crime–shame and discouragement.  When we’re judged we seem to either want to lash out and unleash our own dragons or cower, run and hide, and agree with the booming voices coming at us from the Triumvirate of Terror flying overhead.  What’s more terrifying and provocative? When the Great Terribles aim for our vulnerable children, and they will.  Society as a whole does not understand mental illness and developmental disorders so they fear it.  People judge what they fear and do not understand.  Slay the Dragon of Ignorance and watch the skies slowly clear.

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The Triumvirate of Terror–Judgment, Shame, and Discouragement

Believe it or not, empathy is the antidote.  It is the sure and straight arrow that will find its way into the singular chink in almost any dragon’s armor.  It is not a matter of screaming, “I will not stand for that!” It is a matter of stating what you stand FOR.  It is not a matter of harnessing anger and using it.  The Dragon of Anger will always overpower us in the end.  It’s a matter of collaborating and not bearing a grudge no matter how much you’d like to, finding common ground, and working towards a common purpose.  Finally, it’s a matter of being in the present and looking to the future with hope because while there will be dragons in the skies, you will have a quiver, too.  And, with every step you take, you will fill it with more and more arrows because you might have fallen a time or two or three.  But, it doesn’t matter, does it? It only matters that you get up again so that you can help the vulnerable, special person next to you get up, too.

To Get You Started or Just Help You Keep Going:

“How To Win Your Inner Creative Battles and Reclaim Ownership of Your Mind” by Tom Morkes

On Lithium

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Grace: Would you play cards with me?

Me: Sure!

Eadaoin (14 year-old sister): Ooh, I wanna play, too!

Grace: Okay!

Me: What are we playing?

Grace: Egyptian War…

Me: Egyptian Wart? Wha….?

Grace: NO! Egyptian WARRRRRR! Not wart! Eeeew!

Me: OOoooOOOh, well, that makes more sense.

Grace: I’m hungry.  Eadaoin, will you shuffle the deck while I make some toast?

Eadaoin: Sure!

Grace: (pausing as if to process her thoughts…Eadaoin taking the deck of cards out of Grace’s hands) Hey! Don’t take those cards away from me! What are you doing?

Eadaoin: Uh…you asked me to shuffle them? Why are you mad?

Grace: What? I asked you…huh?

Me: Grace? Are you okay?

Grace: (looking confused) Where’s my toast?

Me: You were going to make yourself some.

Grace: I asked you to make it.

Me: No, you said you were going to make it.

Grace: I did?

Me: Yes…

Grace: I’m not hungry.  I don’t want anything.  I’m going to bed.  I’m leaving…

This is Grace on Lithium.  Her mood is much more stable now, but now she’s…uh…hmmm.  What can I say? She’s stereotypically schizophrenic now.  It’s weird.  Really, really weird.  It’s an improvement, right? At least she’s not trying to stab herself now.

Why I Left Facebook

I am currently sitting at my kitchen table surrounded by various family members.  It’s a relatively peaceful morning.  Grace is home.  She’s doing fairly well for her.  She got home on St. Valentine’s Day at 6:45 PM.  I promised her that we would not celebrate that holiday until she got home so all of us pretended that it was not Valentine’s Day for her sake.  When I got the call that she was being discharged–on Valentine’s Day, I realized that not only had I forgotten to actually acquire valentines for my family, but I didn’t have cheese, chocolate, fruit, and gluten-free bread for our traditional Valentine’s Day fondue dinner! I, of course, ran around town like a woman with my hair on fire and made it happen.  In the end, we celebrated St. Valentine’s Day how we always have, and Grace was tucked into her own bed at the end of the evening which gave my husband and me immeasurable peace and happiness.

Yesterday, one of my friends spontaneously invited me out for lunch.  It was very last minute, and I was very excited to see her.  Grace was home, and my daughter Milly is now a virtual student so she is home with me when her sisters go to their “brick and mortar” schools, as they say.  We went to a rather quiet venue, but Grace needed to come home and take a nap afterwards citing that she found it overwhelming.  She didn’t hallucinate which is excellent progress, and I’m glad that she was able to rest.  I suspect that the low stimulus environment of the hospital lowered her threshold for sensory input.  Once out and about in town, she found the noises, colors, people, and even the sounds of the fluorescent lights irritating and overwhelming.  For now, she just wants to stay in the house.

I was moving at a good clip.  I really was.  I was feeling at peace, not looking to my left or to my right, and then I did what I should not do.  I logged into Facebook and stumbled.  I tripped and skidded on my face to a painful, grinding halt.  So, what’s got me upset?

There is one primary reason I left social media behind.  Grief.  Well, and something else.  I didn’t know what to say.  Let’s be honest.  People aren’t exactly honest on Facebook Fakebook.  I kind of wish someone would put together another form of social media and call it OpenFace (maybe it already exists), and all the ads on the side would be for therapists, therapeutic approaches, books, different kinds of support groups, links to NAMI and other mental health associations, perhaps different religious and/or spiritual groups, a variety of 12 Step groups, and anything else empowering and helpful that I haven’t thought of.  Of course, the drug companies would be advertising their wares, and we’d all see some talking head cautioning us against priapism at least 12 times a day.  On OpenFace, members would be encouraged to be, well, open about their lives.  None of this: “Dig me in my string bikini! Doesn’t my ass look awesome?!” or “Check me and my bros out…we’re drinking in Cabo, smokin’ a few Cubans, just f*cked some chicks…it doesn’t get much better than this.” or “My two-year old is learning Mandarin! And, he’s tapdancing….AND he’s eating with chopsticks…AND he can tell the difference between Baroque and Romantic music!” or “Look at our pics from our latest trip to Switzerland! The kids had a ball! The wife and I hit the slopes, the kids ski better than we do now, and we even had a chance to visit some homeless shelters and teach the kids about gratitude.  We had an epic time!”

On OpenFace, if someone posted something like that, their friends would quickly point out, “Ashley, I saw you in that bikini, and you totally photoshopped that picture! Why are you posting almost naked, photoshopped images to social media and then begging for attention? I’m coming over and taking you out for coffee…”  or “Yeah, Steve, you got drunk in Cabo and slept with a chick, but you also caught the clap and she stole your wallet! Come on, man, you did NOT have a good time.  You don’t need to pretend that you’re not pissed off that you spent all that money on a trip that went to hell.  We all get it.  Dude, let’s meet for a beer tonight.” or  “Lindsey, your son is listening to Mandarin lullabies, but he doesn’t speak it.  He hits you with your daughter’s tap shoes and throws his chopsticks on the floor.  As for the music? I’m pretty sure you made that up because you don’t even know the difference.  You hate classical music.  There’s no rush! Cletus is a fantastic boy.  Let him grow up in his own time.  Leave the competitive parenting behind.  Your friends love him, and your friends love you!”  or, “Jake, take those pics down! You and Linda are separating.  She tells all her friends that you haven’t had sex in a year, and you can’t stop flirting with every woman that you see.  Your son has autism and wouldn’t have the physical ability to ski if a gold medalist tutored him for a year! Your daughter never left the chalet.  For crying out loud! Just be honest!!! We care about you! Come over for dinner tonight! We want to be with the real you…not your false self.”  That’s the thing.  OpenFace wouldn’t be anonymous, and you could actually tell the truth.  If you were having a bad day, then you could say it.  If you were anxious or scared, then you could say it.  If you were facing a crisis, then you could admit it.  The number of friends we might have on OpenFace would probably be smaller, but I wonder if it might be a more authentic experience.

So, what leads me to say all this? A few people I know only communicate via Facebook messaging so when I stopped onto Facebook this morning, I read this:

“We’re going to Sweden this summer! Any advice?”

My stomach dropped.  This couple, they take trips frequently compared to my husband and me.  They have kids.  They drop them off with grandparents and head out.  We can’t do that.  My husband’s father died 16 years ago, and his mother is…Faulkneresque.  She’s not around.  My father remarried in the 70s and got a new family.  He’s long gone.  My mother is…uh…not around either.  So, it’s just us.  We’ve never taken a trip together.  Just the two of us.  Ever.  We dream about it, but now? Grace can’t even go to a restaurant without glazing over and requiring a Seroquel and a nap.  I...sigh…

I went to Devon, England two years ago during the springtime.  Alone.  For ten days.  It was magnificent and magical.  I want nothing more than to bring my whole family back there to the estate where I stayed.  I want them to meet that family that so graciously hosted me.  I want Milly to see her godmother.  I want them to marinate in the ethereal goodness that permeated that landscape.  If fairies are real, then they live in Devon.  Grace wants to go there, too.  All my girls want to go and meet all the people I talk about.  My husband aches to go.  He hasn’t traveled abroad aside from living in the UK as a child.  But, will Grace be able to do that? If she can’t even sit in a restaurant, how will she endure traveling? Traveling can be very hard on a psyche.  The TSA anyone? Plane rides with crying babies? There are no guarantees that your trip will be peaceful not to mention adjusting to a new culture.  I’ve traveled to many, many countries and even lived in another country so I seldom get culture shocked anymore, but that won’t be the case for a child new to traveling.

All this is to say that I’m grieved.  Grace might be able to travel one day, but it’s more than that.  My husband and I will not be experiencing that intimate trip alone.  We have to stay behind and care for her because there is no one else who can fill in for us.  Okay, I’m holding back; there is something more.  This couple that is traveling to Sweden? In the past, they complained quite a bit about needing breaks from their children–their completely healthy, neurotypical children, and they had frequent dates and breaks to begin with.  They only have two.  At this point, I don’t get it.  Perhaps I am losing my ability to empathize.  I don’t remember what it used to be like anymore.  I think it used to be easier.  A lot easier.  I have four daughters, and three of them have needs.  Two of them have special needs.  Grace has profound needs.  I rarely get a break.  My husband and I get a date once a month if that.  When our kids were younger, we got a date once a year.  Twice if a friend offered to babysit.  I have friends in similar situations.  There’s no money because it goes to paying medical bills, and there’s no one available to watch their child aside from a PCA.  So, they are homebound with their special child all…the…time.  It’s hard.  Parents with healthy kids don’t understand.  They take a lot for granted.  Their vacations, dates, and free time.  The fact that their child can even leave the house? That someone other than themselves, their partner, or a trained professional can care for their child? Grandparents? What I wouldn’t give to have healthy grandparents in the lives of my children.  Oh, what a gift that would be.

Bringing this back around to Facebook…here’s the rub about a lot of those photos and updates.  They don’t tell the real truth about us.  That’s why I left Facebook.  People don’t join Facebook to tell the truth.  People join Facebook for a number of reasons but presenting an authentic picture of one’s life is most likely not one of the Top 10 reasons people are there.  I know that there is a certain tacit etiquette that rules social media.  No one likes a party pooper.  No one wants to read depressing updates or even truthful updates.  CNN has devoted articles to “The Ten Commandments of Facebook” (although many of these do need to be said for the sake of manners).   Do you suppose there is a connection to the rise in loneliness and a sense of isolation people are experiencing today and this phenomenon of cultivating a false self? (Yep, there is! “Is Facebook Making Us Lonely?” Stephen Marche,  The Atlantic) It takes a lot of courage to admit that you need help when you’re competing with perfect family vacations, perfect asses, perfect jobs, and perfect lives.  Where on earth would you want to admit that you gave up on your diet and ate a stick of butter while crying over your ex-boyfriend? On OpenFace!

I know, it’s a fantasy, but the truth is I have these moments where I feel overwhelmed, and I wish that none of this had ever happened.  I wish that I could click my ruby slippers and say, “There’s no place like home.  There’s no place like home…”, and I would wake up to find that it was all just a weird dream.  I would find that Grace was a normal sixth grade girl with her whole life ahead of her.  We could make plans, call our friends in Devon, and put some money aside–all that money tied up in payment plans going to hospitals where Grace stayed last year.  Alas, this is our journey, and I’ll walk it with as much courage as I can muster.

I cried to my husband today.  I admitted that I was jealous of that couple who were going to Sweden.  I told him that I felt angry because they seemed to take a lot for granted–their healthy kids and their family who so willingly steps in to love on their kids so that they can take their trips.  I cried in public.  I don’t do that.  Ever.  He just told me, “Baby, sometimes it takes adversity to help us see what we really have.  You can’t really blame them, can you? It’ll be our turn one day.”   That made sense to me, and it helped me let go a bit.  I don’t feel jealous in the sense that I don’t want good things for others.  I just want something good for my family, too, and it feels like we’ve had our share of adversity although I suppose we could have more.  So, I’m thankful for what we do have.  In truth, it could always be worse.  We could be uninsured.  Could you imagine? I bet some of you could.

I don’t know how to end my emotional rant.  Part of me feels like taking a picture of my bum in skinny jeans and posting it just because I can.  Just to be…cheeky.  ::snicker::  You know what I’ll do? I’ll recommend a cookbook because that’s very Facebook-y.  We are very busy so I like to use my slow cooker, but I really don’t like traditional slow cooker recipes: “Here’s a side of carbs with a side of carbs, some cream of mushroom soup, some cheese, and another side of carbs.” In the end, it’s just not very good.  I recently discovered a stellar cookbook called “The Mediterranean Slow Cooker” by Michele Scicolone.  We have made quite a few recipes from this book (we are even making one tonight), and they have all been excellent.  No cream of mushroom soup here! So, if you like Mediterranean food, lead a busy life, and own a slow cooker? Give this book a go! (Here’s a secret…I used to live on the Med, and some of these recipes are pretty darn authentic!)

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Sad

It finally happened.  It was a matter of time.  I think the few people in our support network are burning out.  Not all, but most.  They are growing weary of hearing about Grace, and, frankly, I’m getting tired of talking about it.  Last week’s email from my friend, the one regarding my absence from Facebook which must mean “our lives must have somehow become perfect and Grace must be all better now” just about broke my heart.  Last summer, I told one of my friends that Grace was struggling with what then appeared to be bipolar disorder, and she simply said that she was familiar with mental illness.  She expressed her sympathy, of course,  but that’s all she wrote.  I’ve not heard from her since; she’s Grace’s godmother, by the way.  We were once the best of friends.  Time and distance have gotten in the way of our once close kinship, but I’ll say this: If she contacted me in any way to update me on my godchild’s health, I would be in close contact.  I would be sending encouraging cards and gifts.  I would want to do something.  I would not wash my hands of the child and the family!

I don’t get it.

I wonder if it has to do with mortality.  A woman I know lost a baby to a rare, genetic disease, and she told me that the most painful time she and her husband experienced was actually after their baby girl’s funeral.  Everyone sent meals for a few weeks after their sweet daughter passed.  People were concerned and wanted to express their sympathy and grief over a life lost before its time.  People, however, don’t want to linger in grief so they move on.  We are not a culture comfortable with discussing death, and chronic illness represents our mortality.  My friend said that two weeks after the funeral people stopped calling.  She and her husband were left alone with their immense sadness, loneliness, and grief.  Everyone else got to go back to their lives, children, and pregnancies.  They, however, had to sit in a house with an empty crib–face the loss and trudge through all the feelings of just having helplessly witnessed their first baby deteriorate before their eyes until she died.

That’s a bit like what this feels like.  Now that we know what’s wrong with Grace–“Your daughter has a schizophrenia spectrum disorder.  The prognosis isn’t good.  I’m sorry.”–no one’s coming around anymore.  They don’t want to hear about what her life is like and what it takes to manage a mentally ill child.  They don’t want to know how she was doing last night at the hospital (She looked like an owl.  It was positively weird.  Her pupils were dilated and she wasn’t blinking.  She took her first dose of Lithium last night).  They don’t want to know that my husband finally realized LAST NIGHT that Grace is really ill, and he came home and cried after he saw her at the hospital.  I wish I had been more sympathetic, but my response was, “It’s about time.  Where have you been?”  Denial is a bitch.  I suppose I am as well sometimes.  People simply don’t want to be reminded of this.  Grace seemed to be fine…until she wasn’t.  If it can happen to her, then it can happen to you.  Who wants to stick around for that somber reality check? Grace’s case manager asks me all the time what I’m doing to support myself.  As her primary caregiver, I’m supposed to be getting support.  From where? The social worker, psychiatrist, and therapist at Grace’s hospital can’t even figure out what kind of therapeutic intervention will best support a kid like Grace.  Where am I going to go then?

I don’t think I’m alone in this.  I know I’m not the first parent who has watched her friends bow out not so gracefully in the name of “That stresses me out!” or “I don’t want to be around that.” or “I don’t know what to say!” or “I just don’t want to hear anymore.” or “It’s not like I can fix it so why bother?”

Well, I’ll just say this.  I don’t expect anyone to fix anything.  I sure as hell can’t fix anything so why would I ever expect that of anyone else? I don’t have a Messiah Complex nor do I want anyone else developing one on our behalf.  Most of the time, I don’t even get off on talking about what’s going on with Grace.  I have to spend a lot of time talking about her with tons of people–teachers, social workers, therapists, and psychiatrists.  I talk a lot, and I’m an introvert.  It takes a toll.  So, I blog.  It helps me process everything.  When I see my friends, however, I want to talk to them about their lives, and I want to talk to them about other aspects of my life outside of Grace.  Grace is not my sun, and I’m not orbiting her although there are days…I want to feel like a woman who has something to do other than take care of her.  Many of my friends who have disappeared assume that I have become one-dimensional simply because I have an ill child.  They assume that I am weak, tired, and overwhelmed.  They assume that I am neglecting myself, that I have let my house go, my sex life go, and that I don’t care for my other children because Grace must be all-consuming.  They assume that I am handling these circumstances as they might handle it.  It’s a complete theory of mind failure!

I’ll admit it.  I was sort of a mess last summer.  Yeah, I forgot to wear underwear.  I wasn’t sleeping or eating, and I don’t know if my husband and I were having sexy rumpus.  I don’t remember! It was hellish, but we’re not there now! We found our footing.

I miss my friends.  I wish they hadn’t disappeared, and I wish Grace didn’t have schizophrenia.  I wish for a lot of things.  This is life, I suppose.  We grieve what we lose and keep moving forward.  It makes the few remaining friendships that I have all the more meaningful.

Still…I think it sucks.

Now, I will share something with you that made me laugh today:

shoot-for-the-moon

Even if you miss, you’ll land among the stars. Of course, then your eyeballs will boil and your lungs explode from decompression. But that’s what you get for being a damn showoff.

Redemption

My 14 year-old was recently diagnosed with cyclothymia which is on the bipolar spectrum.  She gets that from me.  I’ve lived most of my life in some form of hypomanic state, which might last for months or, conversely, in a dark place of melancholia.  I didn’t know that my experience of the world was unusual.  I only knew that there was relief when I was prescribed Topamax for chronic migraines.  Suddenly, the oppression in my mind lifted, and my capacity for happiness increased.  I lost my ability to achieve hypomania which I found very inconvenient.  I feel less intelligent now somehow, but the quality of my relationships is so much better.  I’m better even though my brain’s processing speed has slowed.  Topamax is an anticonvulsant after all.

There is something, however, that no drug can give you.  A sense of a future.  That you will be alive to face tomorrow.  That you will be alive in ten years.  That you can make plans, dream, imagine…that you can hope.  There is something called “a sense of a foreshortened future”, and it’s a lesser known symptom of a certain anxiety disorder.  I’ve spent many years of my life doing a lot of work–really good work–with gifted clinicians, but I’ve never been able to overcome my sense of a foreshortened future.  That has been one of the last little goblins, gnawing at me, preventing me from moving forward, painting me into a corner of wrong perceptions and distorted fears.  Until now.

I was backed into a corner last summer, overcome with paralyzing fear, convinced that we had been abandoned.  My sense of a foreshortened future started cannibalizing me, and I was barely functional.  Grace wasn’t functional at all.  I was so terrified and almost beginning to dissociate that I forgot to wear underwear…under a short denim skirt.  And, I flashed my local UPS driver whilst getting out of the family’s Mystery Machine.  The look on that man’s face was priceless.  The look on my face was less so.  Oddly, I saw a lot more of him after that.  Just cruisin’ up and down my street…waving at me when I was outside.  ::shudder::

Anyway, that very embarrassing faux pas was the cold slap to the face that I needed although I’m being reminded of that scene from the comedy flick “Airplane” where passengers are lining up to beat up the hysterical woman with various weapons.  Maybe that’s what I really needed.  A good beating.

imgres

Snap out of it!!!!

Well, I got a good beating in the form of my daughter’s mental illness and repeated co-morbid crises, and somewhere in the middle of it all the bottom of that corner fell right out from under me.  I didn’t realize it when it happened, but I started making plans.  I had to.  For Grace! My husband and I had to start thinking in the longterm which is something I’ve never been able to do before.  I’ve tried.  I’ve really tried, but I’ve always lacked the capacity to do it.  I’ve always kept one foot in surviving my circumstances and entertained putting the other foot in thriving in them.  I’ve never, however, been able to leave surviving behind.  That’s all I’ve ever done.  Survive…or fight to survive.  And, I’m a fighter.  That’s what put me in that corner.  Fighting everything.  Fixing everything.

I fought the school district.  Boy, did I ever.  I had to fight Grace’s clinicians in the very beginning because they were misdiagnosing her.  It’s not a small thing to diagnose an 11 year-old with bipolar disorder or schizophrenia.  I know that, but don’t you want a truthful diagnosis which will lead to proper treatment? I tried to fix everything and everyone.  I tried to fix Grace, and when I realized that I couldn’t fix her…I fell to pieces.  It felt like giving up, and I don’t give up.

Here’s the deal: I’m alive because I have a ridiculous drive to never stop progressing.  Never surrender.  I’m a survivor of human trafficking.  I was 18, and I fought like hell to escape, tricking the man who abducted me…twice…to get away.  That drive has pervaded every part of my life, and it blinded me.  It’s also why I couldn’t see my own future.  When you’re treading water all the time, you can’t see beyond yourself.  It’s a protective mechanism.  Frankly, it had to go, and I couldn’t fix it.

So, I surrendered.  I acknowledged that I could no longer fix Grace, myself, my husband…or anything else.  I just stopped treading water.  It felt like a breakdown, but that’s not what happened.  Peace settled.  A kind of peace I’ve never experienced.  I said that the bottom fell out from under me.  It’s true, and I went with it.  I fell into a new place.  A wide, open space.  I could finally breathe, and I could finally see something beyond this moment.  Not only could I imagine my own future and that of my children, but I could be present in a far more meaningful way–even if the present moment was terrifying.  I didn’t fear it.  I didn’t want to run away from Grace’s mixed states or the hospitals calling for their money or that one collector that always calls at 8 PM every fucking night (yeah, I have one medical bill that I just can’t seem to pay off although I’ve worked out a payment plan) or Milly’s autistic challenges or my own marital conflicts or…whatever life is throwing at me.  I realized that I am okay.  It’s not a matter of “It’s going to be okay.”  No, it is okay.  Right now.  Yes, it’s painful, but if I run away in my mind to Neverland, I’ll miss the joy.  I’ll be less than who I am, and I want to show up not only for the people in my life that need and love me but for myself.  I don’t want to live a mediocre life.  I think that terrifies me more than anything.

I used to call myself “The Girl Who Got Away” because I am one of the few girls who escaped the trafficking world.  Because of what is happening with Grace, for whatever reason, I have stopped defining myself in terms of that one life-changing event.  My entire narrative has changed.  The power of the love within our family has risen up and bonded us together, and it is obliterating that twisted, dark, wicked perception that has haunted me for so many years.  I am so much more resilient and stronger than I thought, and God has not abandoned us.  Not at all.  He is expanding.

So, why share this? Well, we all have our battles to fight.  We all have demons that chase us down, clawing at our backs, biting at our heels, oppressing us.  We say that we can’t do it.  We think that we don’t have what it takes.  We believe what people have said about us and to us.  Many of us have been traumatized in one form or another, and perhaps we find ourselves trapped in a reality that we didn’t choose, enveloped in a sense of hopelessness and helplessness.  I have been there.  I have been in very dark places not of my choosing, and, when I escaped, it felt like part of me was still captive.  I believed for a very long time that I would always be broken, never the same again.

I’m here to tell you that twenty years later, nothing could be further from the truth.  What is the gift of Grace’s schizophrenia? Redemption.  Somewhere in the middle of all this my husband and I were completely wrung out, turned inside out, and turned around.  We are not the same.  Issues that I have tried to fix in therapy over and over again have resolved in the span of five months.  I don’t know if it was my surrendering to the ceaseless suffering and acknowledging my limitations, choosing compassion for others and myself instead, or refusing to embrace a victim’s paradigm and simply deciding to be present.  One has to be present every second of the day when one’s child is schizophrenic.  The act of practicing mindfulness for the sake of Grace might have created new neural pathways which led to the healing of my sense of a foreshortened future.  In any case, I have come to believe that if redemption is possible for my husband and me, then I know that it’s possible for Grace.  I don’t know what form it will take, and I don’t limit.  This, however, is how I get up every day, maintaining a posture of hope, peace, and optimism.

I can finally say that I’m no longer “The Girl Who Got Away”.  I’m the woman who is present.  I’m the woman who has hope.  I’m the woman who can make plans.  I’m the woman who can love without fear of rejection.  I’m the woman who will continue to progress and teach her children how to do the same regardless of circumstances.  Peace, hope, and resiliency are not dependent upon circumstances; they are dependent upon me and what I believe.  That’s my starting point.  Every morning.

The Visit

My 14 year-old daughter and I visited Grace in the hospital last night.  It’s a new facility dedicated to children’s and adolescent psychiatry so it feels a bit like a large clinic although it’s called a psychiatric hospital.  The last time Grace was in the hospital, she was staying in a very old facility that was reminiscent of “One Flew Over The Cuckoo’s Nest”.  I’m quite certain Nurse Ratched did, in fact, find her employment there–maybe it’s her second job.  I’ll stop.  I’m being petty.

As soon as Grace saw us she burst into tears and ran to me.  “I wanna go home, I wanna go home, I wanna go home…” she cried, burying her face in my chest.  We went into her room appointed with a book shelf, desk and chair, and bed complete with nightstand.  It’s a very nice room all in all although Grace doesn’t think so.  Nothing is better than her room.

I asked about her day.

“How was school?”

“Boring.  I don’t like it.”

“How are the teachers?”

“Nice.”

“How are the kids?”

“The kids are so mean, Mom! There’s this new girl, and she slapped one of the little kids across the face today during class! She scribbled on my paper and scratched another kid on the arm! All the kids starting yelling and swearing.  They were saying the ‘F’ word and yelling, and one of the kids tried to hit her back.  They are mean!”

Admittedly, I was a little stunned.  “Are you okay? How did you feel about seeing that?”

“That was stressful! She had to stay in her room.  She’s not out with us.  I don’t like her.”

“Did she do that unprovoked?”

“Yes! Everyone was minding their own business.  I don’t understand.”

Welcome to inpatient hospitalization.  This is pretty standard.  There’s usually quite a bit of behavioral issues which is why the kids are admitted.  Grace is an aberration.  She’s not a behavioral problem.  She’s purely a “head case” although when she’s in a mixed state it’s a bit touch and go.  She’s a sensitive girl so these kinds of displays are tough on her.  What am I saying? If I were sitting in a room full of adults, and one of the women slapped a man across the face, scribbled nonsense on my work, and then started scratching another man, I think I would be fairly upset, too.

I was phoned yesterday for authorization to begin the Lamictal Taper.  It’s official.  They are weaning her off the drug.  I am following through on my assignment to research Lithium and Depakote.  Dr. Whiskey and I talked quite a bit about both drugs, and we ended our discussion with his assigning me the task of researching the drugs.  I am to come to a meeting on Tuesday with recommendations.  Isn’t that weird? He’ll be consulting with his colleagues, and I’m reading medical literature on the use of those drugs to treat schizophrenia, schizoaffective disorder, and bipolar disorder in pediatric populations as well as their side effects.  It’s quite the collaboration.  I think he has his opinions in place.  He likes Lithium, but Depakote will treat migraines and address any unknown seizure activity that might be going on since TLE runs in the family (Grace gets week-long, debilitating migraines which incidentally began during the prodromal phase of her illness).  It’s also a very effective mood stabilizer.  That’s my two cents, and that’s tripping him up.  “Oh my gosh, I 100% agree with you! I don’t know what to do! You do some research, and I don’t mean just read Wikipedia, and I’ll consult some other people.  We’ll meet on Tuesday.”  I’m not ignorant.  He might be asking me to do some reading so that I can live with the final recommendations simply because I am coming to the table with some knowledge about the pharmaceuticals.  In the end, this dude is the expert.  Not me.  BUT…I’m the expert on Grace.  By the way, all the cool and useful articles I find I post to Cool Info at the top of this blog.

In the meantime, the whole clan will be visiting Gracikins today, and we’ll be bringing her lots of books to read.  That’s how I calmed her down and gave her hope last night–“I know it’s too quiet in here at night–well, aside from the other kids screaming during the night, but what if we bring you lots of awesome stuff to read?!”.  My 14 year-old went to bed early so that she would have lots of energy for our morning bookstore outing.

An aside, we have two Siamese cats, and our big ol’ kitty, nicknamed Cleofatra, is very attached to Grace.  She is terribly sad and roaming about the house searching for her favorite person. Siamese cats are known to bond to just one or two people and remain loyal to them.  Cleofatra’s first love was me, but then an Australian Shepherd invaded our home; she was dethroned, and that cat has never forgiven me.  I am routinely shunned now for the love and affection of a certain 12 year-old who, in her mind, has abandoned her.  She now sings very sad songs caterwaulsall night long.  No one is sleeping peacefully now.

It will be nice to have our Gracie home although I don’t know when that will be.