Ghosts, Mental Health

During This Quarantine, You Will Be Visited by Nine Ghosts

1. The Ghost of Material Objects downloadPast – Remember that rose quartz soothing face-massage roller from GOOP that cost $50 and promised to “Wake up your entire face with the cooling, soothing power of rose quartz crystal and promote circulation for glowy, healthy-looking skin, release tension in facial muscles, and cooling to help reduce the appearance of puffiness and under-eye bags.” that you thought you’d never need? Your order will be arriving in 3-5 business days–not a moment too soon because whenever you look in a mirror these days, you see Charlize Theron as Aileen Wuornos in Monster. 

2. The Ghost of Forgotten Foods Past – That half jar of lentils, the two-year-old can of sardines in oil, the chia seeds you bought for smoothies then forgot about, and the half eaten gummy worms from last Halloween have come together to inspire a new dish: Pantry Trash Surprise. 

3. The Ghost of Junk Drawers Past – A photobooth film strip with your metalhead friend Bruno from when you worked at the hardware store, the note to yourself that inexplicably says “so many worlds,” a small American flag you bought for a fourth of July celebration that you forgot to wield and wouldn’t dream of wielding now (or ever again), dozens of Thai baat coins carelessly flung in there (maybe you were saving them for the next time your travels took you to Southeast Asia, if travels take you anywhere besides your second bedroom ever again), the guardianship papers for your brother you crumpled up and shoved down deep until the day inevitably comes when they serve as the chains you have inextricably–and willingly–bound yourself with.

4. The Ghost of Medications Present – Adderall, Lamictal, Abilify, Klonopin. One to get you through each phase of the day. The Adderall so you can work and pretend it’s business as usual. The Lamictal so you don’t spiral into an episode that feels like it’s already nearing. The Abilify to lift your mood (from bleh to meh). The Klonopin to temporarily make you think that nothing is that important, that nothing will last, that lets the chips fall where they may, even if they fall off the table.

5. The Ghost of Tarot Cards Present – You do at minimum three readings a day for yourself: all different spreads: Past, Present, Future; Situation, Obstacle, Outcome; Inner, Outer, Action. They tell you nothing concrete yet they tell you everything. “What kind of sandwich should I eat for lunch?” you ask. And the cards always say some variation of the same thing: your’re strong, resilient, dark times, but, hey, you’ll persevere. There’s an abundance of Cups cards. The suite of emotions. Give me a goddamn sword for once, would you? I need intellect to guide my decisions, for feelings are no longer to be trusted.

6. The Ghost of Zoom Hangouts Present – I thought it was called social distancing for a reason. It’s melancholy, a screen of disconnected heads with no bodies, a screen of smiles that are doing their best not to cry, a screen of worries, concerns, anxieties, sorrow, grief, loneliness. I feel it through the screen, so i zoom the fuck out of there within 10 minutes.

7. The Ghost of Shelter-in-Place Extensions Future – Virginia, until June 10. New York and Chicago to inevitably follow suit. My 80-year-old father taking care of my 30-year-old disabled brother in a 900 square foot apartment. My brother’s demands, my father’s capitulations. I doubt they’re washing their hands. I have Settlers of Catan and a room full of books to sustain me. They have nothing. Settlers won’t help them anyway, and there’s no book on how to manage a toddler trapped in an adults body during a global pandemic.

8. The Ghost of “If I Could Have Done Something” Future – You will not do something. You will do nothing. Because nothing–NOTHING–is in your control. And it never was.

9. The Ghost of Coronavirus Future – The imminent threat may pass. But nothing will ever be the same again. In some ways, it’s what we need. In some ways, it will take years and lifetimes to heal from the trauma of watching people around us die, our social systems crumble, the things we believed in–about the world, about our loved ones, about ourselves. Don’t get me wrong, we will be the lucky ones, the ones immune to the virus. But really, none of us is immune to the precarious framework we’ve built our lives around. The virus pulled the thread, and the whole thing came unraveled. Not even The Tiger King will be able to save us.

Uncategorized

The AirPods Played On

He wants AirPods for his birthday but I buy him a plane ticket to Chicago instead to come see me, trying not to condone or enable his obsessive compulsion around cellphones or anything having to do with cellphones. “Buy me AirPods please sister,” he said. “I’m bringing you to Chicago for a week, isn’t that better?” I text back. I guess not. Because what ensues is a weeks’ long military blitz about the AirPods, with every form of communication a weapon he wields deftly. For days, for weeks, I am accosted by these AirPods. No tactic works against his relentlessness; I try them all: ignoring, begging, reason, threats, bribes. He never lets up—his mind a steel trap for a singular cause.

I imagine him dreaming about the AirPods, but what do those dreams even look like? He’ll never use them if he gets them, and he’ll be on to the next item as soon as the AirPods are his, thrown into a pile with his 15 cell phones, 8 wireless chargers, and 5 juice packs. “Just get him the AirPods and it’ll be over,” some say. But what they don’t know, and what I only admit to myself in the darkest part of the night, is that it is just the beginning for me. A lifetime of AirPods that bring me to tears at the oddest hours, an endless barrage of demands I feel too overwhelmed with guilt to ignore.

The AirPods will alleviate his pain momentarily, he’ll snap out of his dogged trance—for a time.

The AirPods will be a thing of the past for him soon enough. But their very name will play over and over in my head until I can’t distinguish between the thing they are, the thing they mean, the thing he is.

 

Uncategorized

A Few Words on the Eve of War with Iran

IMG_0205I’m sitting here in my apartment in Chicago, thousands of miles away from Iran, scrolling Twitter for the latest news. An hour ago, the irrational and reckless leaders of a nation retaliated with a missile airstrike for the assassination of General Soleimani, the work of another irrational and reckless leader of another nation. “We are not done,” they say. “This is just the beginning,” they say. I never realized I belonged to two nations, both seeking destruction of the other. I never realized a beginning could feel like the end.

I won’t pretend to know the intricacies of foreign policy between the US and Iran. I know what I’ve been told my whole life (a coup, a revolution, an embargo, a nuclear treaty, a reversal) and what I come across in the news these days and what the commentators say on TV and what all these newly-minted experts spout so freely on social media. One thing feels for certain: War is coming, war is inevitable, war is here. And I feel very alone.

I have many aunts and uncles still living in Tehran and in northern Iran. I am scared for them and for what they may have to endure in the coming months, or even years. But I’m overcome with a feeling that I can’t even fully understand—something akin to patriotism, but the true sense of the word. Not in the way it’s used in the United States now—racism and jingoism and hatred.

But rather, the patriotism of feeling part of a beautiful heritage that welcomes others, that values poetry and art, that demonstrates a generosity that is in the very genetic makeup of its people. I recall the Tehran of my youth, the summers I spent visiting thousand-year-old palaces and picking mulberries off the trees and popping them into my mouth and sipping tea brewed from fresh leaves and buying barbari bread fresh from the stone oven and the sound of the busy Shemran streets and the streams of Karaj. Did the president of the United States ever watch from his grandparents’ balcony as the neighborhood erupted into a bright festival for the birth of a child? Did he ever run his hands along the sun-worn stones of Persepolis where kings led a great empire? Did he ever listen to the music of the Persian language as his grandfather recited Hafez and Saadi? Did he ever let the taste of rose water faloodeh tickle his tongue?

People are always dying. My three grandparents are dead. My parents will follow, and then so will I. More will die. And then even more. We each take with us a part of our culture, a piece of our homeland. We carry with us the memory of Iran, and she carries with her the memory of us. When she is gone, we will all be gone.

I know this feeling after all; it has a name. Or rather, a not-name. It is erasure.

 

 

Family, Feminism

Ariadne

yellow dressBy the time I entered 8th grade, I had already attended six schools. My family had just moved back to small town Virginia and I was back at the private school I’d started Kindergarten in. It was January when I came back, I was fat, and my parents were getting a divorce. It was 1998. I was 12.

***

One Sunday, among the boxes in the unfinished basement, I found my grandmother’s yellow and black lace tea-length tulle skirted party dress from the 1960s. I thought about Grease, Sandy and her flaxen hair and bright eyes. I saw myself wearing the dress to a prom, twirling around the dance floor with a cute boy. In this vision, I did not have my heavy black unibrow, the dark shadows under my eyes, the puke-green hued skin-tone (olive, some say, when being generous). In this vision, I did not have a mentally disabled brother or live in a home that was about to be foreclosed on. I fingered the soft lace, the scratchy tulle, and took the dress up to my room. The compromise the dress made with my body: you can put me on, but you can’t zip me up. So I wore it to school the next day as a skirt with a baggy t-shirt over top to hide the bared teeth of the unfastened zipper. Picture Ace Ventura, Pet Detective when he hides among the loonies in the loony bin by wearing a tutu and a plaid shirt and combat boots.

***

I couldn’t be like the other girls in my small class of 25 because they were pretty WASPs who rode horses and had moms who made their lunches at 6 am each day. My own mother would disappear for weeks at a time after fights with my dad—she’d lock them both in the bedroom as us kids would listen to the shouts and crashing frames and shattering vases from within. When she was gone though, I’d sneak into her walk-in closet and carefully sift through the hatboxes full of silk scarves and brooches, sashay among the glamorous hanging dresses I recognized from pictures taken in the south of France, try on the few things that somehow fit both a 37-year-old size 4 waist and a pre-teen whose belly stuck out farther than her boobs. No, I was not like the other girls in my class. No, I was not like the woman whose body I sprung from. And since I could not be beautiful or thin or stylish, I would be weird. Because weird was better than normal and normal was worse than nothing.

***

I collected Pez dispensers which I lined up neatly at the top of a bookshelf. I didn’t even like the Pez candy, but it satisfied me to stand each dispenser up next to another, each spaced exactly the same distance apart, each a bright color—vibrant and fun, but uniform. One day I found a long shoelace in my box of trash treasures and decided to string the Pez dispensers along the shoelace to see how many I could fit. It was 30 or so, and it was heavy and clunky and perfectly odd. I added it to my weekly outfit rotation, and soon my Pez necklace was famous, which meant I was famous too. “You’re so creative,” the girls at school would say, and I’d wear that as proudly as I wore my Pez necklace. I wasn’t dumb; I knew boys didn’t kiss girls with Pez necklaces, but there was no chance of that happening, necklace or no, so I hungrily took what I was given. It nourished me, just enough.

***

I didn’t own jeans, I didn’t own pleather Mary Janes, I didn’t own plaid pleated skirts like the ones Cher wears in Clueless. When you opened my closet doors—next to the Barbies I was too embarrassed to admit I still played with, all of whom would strut clothes-less in front of the only Ken I had—here’s what you’d find: multi-colored bowling shoes, oversized men’s button down shirts embroidered with sailboat insignia, corduroy floral overalls, a mesh neon hoodie, patterned tights I’d cut up into shirts (cut the feet off = sleeves, cut a hole in the crotch = the neckline), a bonnet from Colonial Williamsburg, plastic beads for my wrists ankles neck head, Hanes t-shirts doctored up with quotes from my favorite movies written in Sharpie in my sloppy handwriting (my favorite was “I saved Latin” from Rushmore), arts and craft wiring to braid into my hair, a pastel kimono, a pastel sleep jacket I found at Goodwill, a pastel knit sweater I found in a dumpster. A prized 60s prom dress.

***

I was young for my grade. Most of my friends were 13 but I wouldn’t cross into teenagehood until a month into my freshman year of high school. I was acutely aware of the changing bodies around me and while mine was changing—growing, growing, endlessly—it was not in the ways I wanted. My arms were the size of some of the girls’ thighs, my waist was lumpy and squishy, and you could see the lines and folds of my fat rolls in anything smaller than an XL shirt. I never showed skin, I never wore shorts, you’d sooner find me dead than in spaghetti straps. But my room was safe and light, and there my rules were relaxed. I’d read on the carpet in boxer shorts and a tank top, or rearrange my furniture every other week wearing a loose, flouncy dress.

One evening, after my dad moved out, I sat on my bed painting polka dots on my toenails with white-out. There was a knock on my door—we were a family of bargers—and I tentatively told the mystery guest to come in. It was a man with dark gray hair, a man I’d seen once before. He walked over to my bed and sat down, accidentally on my leg. I pulled it out from under him and huddled my knees into my chest to cover my braless nipples. He said some things to me, but I only remember one: “I’m going to take care of your mother.” I think he meant it sweet. He touched my knee and smiled and left. I put on a bra as soon as I heard his footsteps down the hall. I slept on my beanbag chair that night. I did not wear a tank top again for years, not when it was 100 degrees outside, not after I lost a bunch of weight, not even in my room at night when everything was quiet.

***

I got a solo at the Spring Concert that year. I practiced my song, The Rose by Bette Midler, nonstop. The auditorium at school housed a few hundred people and I would be on stage alone. My family would be there; who knew who else might be there—maybe a casting director for a local theater. I thought about what I would wear for weeks, and it was during this time I realized what a fraud I was. A true weirdo would have taken the opportunity to wear her most outlandish outfit. But I wasn’t a true weirdo. I wasn’t a true anything. Because I didn’t even know what the truth was. My dad was living in a motel. My brother didn’t have fine motor skills. Our heat had been turned off half the winter. But that was temporarily ok, because I had the solo.

My friend’s mom took a group of us to the mall an hour away where I sifted through racks of size 12 dresses, tried on slides and sandals, and experimented with tasteful makeup instead of the blue glitter eyeliner I normally wore. I didn’t like what I saw in the mirror—no configuration of fabric could hide my gut—but I finally settled on a black and white block stripe sleeveless dress and black platform sandals.

When the night of concert finally came, I changed into my outfit at school in the girls’ locker room. Backstage was buzzing with excitement as students practiced their songs and mothers helped their daughters with their updos. I sat in front of a mirror and examined each millimeter of my face and body. I looked normal. I looked pretty. In the reflection, I saw my chorus teacher walking toward me trailed by two of my classmates. I turned around as he started talking. “We’ve decided to turn your solo into a trio,” he said brightly, clapping his hands together. I felt my face get hot, and my dress was suddenly too tight, my shoes pinched my toes. I wanted to throw a tantrum, flail around and scream and demand the song remain mine and mine alone. But that’s not what I did. I muttered an ok, and we began to practice our respective parts and harmonies.

Some say love, it is a river, that drowns the tender reed
Some say love, it is a razor, that leaves your soul to bleed
Some say love, it is a hunger, an endless aching need

At the reception after the concert, there was no casting director, no bouquet of roses. My dad hadn’t showed up, and when my mom saw me, she said, “What is this outfit you’re wearing? It doesn’t look good.”

***

When I was little, my mom—like so many others—put together my Halloween costumes. But my costumes were always comprised of odds and ends in her closet, items that didn’t belong together and constituted no particular character or theme. No princesses or superheroes or ballerinas for me. One year I was a gypsy/peasant hybrid wearing a traditional Iranian skirt and headscarf with tassels and oversized sequins sewn on. The next year I graduated to what I like to call “the old French whore” costume: my mom’s hot pink cocktail dress with the poufy sleeves, a black velvet chapeau tilted at an angle, and enough blush to make me look like I had a fever or had been slapped in the face. Trick-or-treating with my friends was a delicate mix of anxiety, attempt at being ok with my lot, and subtle shame that demonstrated my awareness of my situation: an oddball who obviously had parents who did not put time or thought into the effects of this mismatched, haphazard costume. “What are you?” the little girls in my class would ask. “I don’t know,” was my non-answer, and still was.

***

The summer after 8th grade, my mom fell into a deep depression and spent most of her time in her room. I was getting ready to go to high school, a small private school where I’d be with many of my middle school classmates. One of the summer reading books was Edith Hamilton’s Mythology: Timeless Tales of Heroes and Gods. I was particularly in awe of Ariadne, who spun the golden thread that led Theseus to the center of a labyrinth of the Minotaur and safely out again after its defeat. Perhaps my spun threads would do the same for me as I navigated the turns of the maze, the maze with walls so high I couldn’t see beyond them.

Two weeks before the semester started, my parents told me they couldn’t afford to send me to the private school and that I’d be going the following Monday to the public high school, which had begun a week-and-a-half prior. Ok, I said. I understand, I said. I ran up the stairs and hid in my closet for an hour, sobbing. My grandmother’s dress was crumpled on the floor in front of me. I put it on and added an armful of bangles, a dozen strands of fake pearls and faux gold chains, and a plastic crown atop my head. The queen of freak island, the heir to the outcast throne.

I walked out of the house and through the cemetery to town. I had nowhere to go but I kept walking up and down the main street, crowded with parked Mercedes and Jaguars and women in jodhpurs fresh from their morning rides through the countryside. I noticed a group of 30-something women walking toward me, they were smiling, their hair shiny, their eyes shining. “You look just like Madonna!” one of them said. “What a great costume,” said another. “Thanks!” I exclaimed. “I’m on my way to a costume party.” It just slipped out of my mouth, but I was relieved that it did. “Can we get a picture with you?” asked another woman. I laughed and said sure and we stood in a row after asking a passerby to take our photo. I smiled hard for the camera, my jaw petrified in place.

After they’d gotten their pictures, I made my way back toward my house, back through the cemetery. Between two burial plots, I took off my grandmother’s dress, laid it against a smooth, worn gravestone, and left it there among the dead.

Mental Health

Quit Trying to Sell Me on Your Happiness Myth

happinessEvery day we are all assaulted with the concept of happiness. Media, messaging, “research” touts this mythical framework, this unattainable state of being:

Five Steps to a Happier You
Happiness is a journey, not a destination.
Good Days Start with Gratitude

For years I struggled. I was constantly asking myself questions surrounding this nebulous idea:

  1. Why am I so unhappy?
  2. Why is everyone else happy?
  3. What did I do to deserve being unhappy?
  4. How can I get happier?
  5. If I lose weight and get a boyfriend, will I finally be happy?
  6. Am I fucked up for not being happy?
  7. Am I just an ungrateful asshole for being unhappy given that I have a roof over my head and food to eat?
  8. How can I hold onto happiness?
  9. If I am a better person and help others, then will I be happy?
  10. What does it mean to have a happy life?

But these questions had no answers. Everything was a lie. Because I have come to realize that happiness is a construct and not an actual way to live. Happiness comes at you in moments here and there but this overarching expectation that you do some kind of hard or virtuous work and you will get to a place of happiness is pure bullshit.

So I’m done with it. I reject this message. I will not fall for this propaganda anymore. My days of chasing the happiness dream are over and I refuse to promulgate this myth.

Life is fucking hard. I’ve got a mentally ill brother, a narcissist mother, an ill father, and a pile of student debt that will last at least my lifetime, if not my future children’s. I work 12 hours a day. I am faced each day with a society that hates women, hates people of color, hates immigrants. Climate change is real and the earth is dying. We are all dying.

But there are good things too: an incredible partner, supportive friends, a small baby-man-friend in the form of one rambunctious beagle. My apartment is cozy and I have an in-unit washer/dryer. I go on cool trips occasionally. I eat melted cheese on a regular basis. All of these things bring me joy.

Who among us can’t create their own parallel lists? Some things are terrible, some things are great, most things are meh. Is this what you think of when you think of a happy life? Probably not. But this is a real life, and one that I bet is remarkably similar in its ebbs and flows, ups and downs, to the lives of many of those who are clinging to this belief that they if they do this one thing, they will get to some kind of everlasting happiness realm. How are you different than me? Why do you think you will get there? Because you will it to be? Because you are more optimistic than me? I wouldn’t count on it.

I guess I just don’t understand why we are we still spreading the dangerous and harmful message that we must constantly be working, striving, busting our asses to achieve a thing that isn’t even real? For so long I thought there was something seriously wrong with me because I couldn’t grasp happiness. Every time I caught it, it slipped away in wisps, my nails digging into my fingertips as I tried so hard to hold onto it. It wasn’t fair, why was everyone else happy and I was so miserable? But it’s just not true. You are just as miserable at times as I am. And instead of trying to make me choke down this endless loop of positive mantras through your petrified-wood-smile plastered on a tear-streaked face, maybe we should all just admit our miseries, let each other cry and scream and be mad and ungrateful, and accept that we might be happy for 3 minutes and then unhappy for the next 72 hours and then happy again for 2.

I know I’d feel a lot less lonely.

 

 

Family, Mental Health

The War for Takkin

53-39989-mommie-dearest-1488384838I got a call from the lawyer in Takkin’s guardianship case yesterday saying that my mother had called and wanted to also be a co-guardian. This is a person who is unhinged, irresponsible, narcissistic, and has all but abandoned her son. Now she wants in.

I am currently grappling with this: can I enter into a legally-binding agreement with a woman who will put up roadblocks and hurdles at every point while I am fighting to do what’s in Takkin’s best interest? Can I work against Takkin’s illnesses, the insane bureaucracy and system, AND my self-absorbed mother, all at the same time? Honestly, it’s just too much… I don’t want to walk away, but this might lead me down a hole I won’t be able to dig out of.

Below is an email from my mother from today. My annotations are in italics. Note that spelling, capitalization, and sentence structure have not been changed.

it is not a good idea to show that we are not a family together doing things for takkin.
It does not bode well with either the lawyers involved or the Dr of the therapist.
We have not been a family since I was maybe 8 years old. Probably around that first time you picked up and left for several weeks because you couldn’t deal with your family anymore. Also, that is not the correct use of the word “bode.”

Dr. Ruiz said that Tara had called him.  I also talked to him.  Takkin was confused and disoriented because of the new drug.   I had to call 911.   Tara you didn’t call me because you think I am just a nobody.   But I am his mother.   I am his mother.   Do you get it?
I do get it. You are his mother by blood and by birth, not by action. I don’t think you’re a nobody, I think you’re somebody with so many issues of her own that she can’t even begin to be responsible for another person. And I don’t know how many goddamn times I have to tell you this, but Takkin’s doctor’s name is DR. RIUS. NOT RUIZ. You are so thoroughly involved in Takkin’s care that you can’t even remember his doctor’s name. 

If any of you think that I will the state take over Takkin’s life,  You are WRONG.  I saw that Bahram who is thousands of miles away is  a co-guardian but not his mother.
This is basically incomprehensible.

I take this not just insult but as a complete disrespect to me.   I am still alive and I will do whatever that it takes to make Takkin’s life a happy life.
As always, it’s about YOU. It’s about the insult and the disrespect to YOU. It has nothing to do with wanting what’s in Takkin’s best interest or making choices that make the most sense. It’s about how YOU feel, how YOU are perceived, how YOU have been wronged.

I am not gone.  When I am gone, of course all other parties can be involved.  Bahram is far away and if necessary we can seek his help or any other member of the family.
You’re not physically gone, no… but your mind is never fully present.

I resent the fact that Tara now thinks she knows everything and that all of us including me are just bystanders or completely stupid.
I don’t know everything. I hardly know anything. But I’ve researched, made phone calls, met with people, tried to gather as much information as I can to make informed decisions and figure out our options. All you’ve done is seek out stop-gap measures, send insane emails to people who have nothing to do with this situation, and talk about how much you cry over Takkin. Great. That’ll make a big difference. 

When did Heather or anyone else came to Takkin’s rescue when he was either at the hospital or at that horrible place. She never showed up.
How many times did you come to Takkin’s rescue when you moved to Delaware and chose your husband over your son?

Only family will be there for Takkin and Thank God he has many family members.
One thing we agree on…

I don’t believe win this shitty state of America and their services.  If they deliver that is fine.  But so far I have not seen anything.     Please spare me tara from one of your nasty emails.  I am sure you hate me but your hatred of me will not help Takkin.
That’s true. It doesn’t help Takkin. But I’m not going to lie, wrapping myself in a blanket of disdain for you does bring me a modicum of warmth; or at the very least, enough rage to keep up the fight.

Just hate me and resent me for the rest of your life.   But let me be also be a mother to Takkin.
I have no control over you being a mother to Takkin. But I sure as hell won’t let you be his guardian.

Family, Mental Health

Last Day with Takkin

IMG_2915I’m in the Uber on my way to the airport. Just popped a Klonopin. I slept four hours last night and my back hurts. But I made it. I did it. Ten days. It was the most difficult thing I have ever done and I got through it. Human will and resilience is a real thing people.

The guardian ad litem came this morning to interview Takkin and I about my guardianship petition. He and Tak joked around and had an easy rapport, while I sat and watched my brother gesticulate and answer questions enthusiastically. Much like the Hartwood intake assessment, the questions were geared at gaining a better understanding of his needs and skills. “What a friendly guy you are,” the guardian ad litem told Tak.

After 20 minutes or so, it was my turn and I was inundated with questions, most of which were rote and to be expected. Then he asked how old my dad is: 78. And I knew where the conversation was headed. “And what is the plan for when he can no longer care for your brother? What if the group home doesn’t work out?” In retrospect, of course he would ask this question, but for some reason, I was shell-shocked and sat dumb and numb for what felt like 5 minutes. I lifted out of my body and watched from above as the words came out. “I would never let anything happen to him. I’ll do what I have to do.” I didn’t even fully know what that meant, but it felt … final. Like I was signing something in blood.

So, what does it mean? I’ve been thinking about it all day:

  1. A lot can happen in even a few months. We were just at his psychiatrist’s office today and he added a new medication and plans to add another. Medication saved me, it could save him too.
  2. As evidenced by the past two weeks—save yesterday—he is pretty good with me. I could have more sway over him when it comes to staying in a group home or trying day programs and services. I haven’t lost credibility with him yet, and that goes a long way.
  3. We are so much better off than so many vulnerable populations out there; we own a home, we have family in the area and abroad who are willing to help; we know how to navigate the social services system (as much as anyone can know that insanity). Amazingly enough, I know that things could be much, much worse, and I am grateful for the things we have.
  4. I am not the first person who ever had a mentally ill brother. There are other stories that parallel mine and those people survived through it. I will find those people and learn.
  5. Yes, today I may be exhausted, but tomorrow I will not be. And I haven’t yet explored every resource, every service, every option out there. There is more to access and more to try. And I will try it all until something works. Something will work. Because it has to. And because when you love someone, you find the grit to keep going.

I’m almost to Reagan National Airport, and something just dawned on me: I did not water the house plants one single time these past 10 days.

I guess I was too busy.

* * *

Thanks to all who have supported me throughout this time and to those who followed me on this journey. I really wouldn’t have made it without you.

Family, Mental Health, Uncategorized

Day 10 with Takkin

IMG_2910Today has been one of the most harrowing days of my life. And I am too zapped of any life force to begin this essay with some flowery metaphor or theme that will be interwoven throughout the text, to crescendo with a lessons learned and come to a close with a nod to something positive. Instead, I will lay out, in facts, the day I have had.

I have had a relatively peaceful week with Takkin but today my mother showed up and everything fell apart within 5 minutes, no exaggeration.

He harassed her for 8 days about getting a phone. So she brought one. I don’t condone it but I understand why she did it. It’s a situation of: she’s damned if she does and she’s damned if she doesn’t. Well, she did, and she was damned. He immediately flew off the handle because he couldn’t find a sim card or some other nonsense as usual and he went back to carrying five phones. She left because he screamed at her. I stayed and made sure he went off with his tutor.

I ran errands while he was gone and when I came back two hours later, his tutor called my mother and I to say that my Takkin had accidentally spilled tea on his phones and on the table and blamed the tutor and started yelling at him, so the tutor left. Tak eventually texted the tutor to apologize. I went to pick him up to see if I could mollify him by driving around a bit. He calmed down and said he wanted our mom to come and spend time with us. We went to pick her up. She came to the car two minutes later than she said she would and he screamed at her, cursed us both, and slammed the door, then walked back to the apartment.

I broke down into tears and felt like I was about to vomit. He texted me that he hated me and wanted me to go away and that his family was awful. I didn’t know where to go so I drove back to the apartment and sat in the car and cried and hyperventilated for a bit. I took a klonopin and a breath. Then I called REACH mental health crisis services. I told them the situation and they pulled up his file, offered to call him to talk him down, and said they’d call me back. Takkin called me five minutes later and while he was talking to me he received a call from REACH on the other line. He started yelling at me “what should I do? Should I answer?” and I said “if you want to answer, you should, but if you don’t, you shouldn’t.” He screamed at me some more then hung up. REACH then called me and said they had a productive and good call with my brother but the phone cut off in the middle of the conversation. I informed them that it most certainly did not cut off, that he had, in fact, hung up. The REACH volunteer interrupted me to tell me that no, it got cut off, which was laughable because he hangs up every phone call he makes and apparently a woman who has spoken to him for 2.5 minutes knows him better than I do. They sent me his crisis plan which was scant and pointless because when he is in this state no amount of crisis intervention works.

When I returned to the house, he seemed ok. We went on a drive and tried to play basketball but it began to rain. We tried to get gas but there were too many people there. We tried to get gas at a different gas station and it was empty thank god. Even though my mother made dinner, he wanted kabob so we ordered it over the phone.

He has developed a rash on his neck and I am worried it is a result of increasing his medication. When my mother saw it, she commented on how bad it looked and that spiraled into another obsessive fixation on the rash. He said we should go to Urgent Care to check it out, so in the pouring rain I took him to Urgent Care. The front desk attendant couldn’t find his information within 30 seconds so he said fuck this place I want to go, so we left. Then we went to go pick up the kabob and during a timespan of 30 minutes, he called 20 people, ranging from my grandmother’s friends to old tutors to random previous doctors to ask about his rash. He demanded I make calls too, so I called his psychiatrist for the 4th time today to no avail. I called the emergency number on the doctor’s answering machine and they told me no one was available to talk to me and to call back in an hour.

We came back to the house and he ate dinner. I choked down a piece of bread because if I ate more I would throw up. Then my mom showed up and Takkin oscillated between hugging her and pinching and kicking her. He has been pacing around the apartment now for two hours cursing at everyone, or alternately giving me high fives. He has demanded that my mother spend the night and then he has demanded that she get the hell out. He has demanded that we all go to bed but is angry that we are in our beds. Now he wants my mom to take him to get coffee at 10PM. She agrees. Then he doesn’t want to go with her and wants me to go so I do. He promises decaf but gets caffeinated.

He promise 30 times a day to behave and be nice to mom but the words are empty, meaningless. He is incapable of behaving himself because he has the behavioral control of a 2-year old toddler. I know this is not his fault but here we are. I know the worst thing to do is give in to every whim but he is a terrorist and we are his hostages. I know had things been different during his childhood, much of this nightmare could have been avoided, but that is 30 years in the past and nothing can take us back to that time. He is currently joking and laughing with my mother as I write these words. Tomorrow he will call her a fucking bitch and throw a glass in her direction.

This situation is untenable. No amount of cognitive behavioral therapy will mitigate these problems. No amount of Therapeutic Alliance in-home support will alleviate the behavioral issues. He is unmanageable–completely and entirely. He is on four medications, and I, the strongest proponent of medication, am beginning to think he may as well be on none. It has been a decade and not one drug has worked or helped beyond a modicum of stabilization.

We have lost all power, and I know my parents have lost all hope. Mine is dwindling fast.

On September 14, I will be attending a court hearing to become his guardian. For the first time ever, I am grappling with every fiber of my being with this decision. He is my brother, he is a person. But I am a person too.

Tell me, please, please: what you would do if this were your brother, your son, your nephew?

 

Family, Mental Health

Day 9 with Takkin

IMG_2901In two months, I will be Takkin’s legal guardian, along with my father. We will be responsible for his medical and financial well-being and safety, among other things. He will not be able to vote, to marry, to open a bank account. He will have several rights taken away; he will be, legally, like a child.

I got the phone call today from the guardian ad litem–the counsel who has been appointed to interview Tak and the people petitioning for guardianship. He’s coming on Thursday to talk to us, and make sure the potential guardians aren’t petitioning for nefarious reasons. Which, trust me, I am not. Takkin’s fortune consists of five cell phones and some two-dollar bills our grandfather gave us.

I don’t want this job. I wish this job didn’t even exist.

There are so many things that need to fall into place for Takkin to have a chance at a stable life, and me gaining guardianship is just one of them. I’ve spent much of my time this past week and a half (and several years, to be honest), trying to put those things in place.

A couple months ago, I spent hours on the phone with one of Takkin’s caseworkers to talk about the long-term solutions and resources for him. The situation is obviously the incredibly complex, bureaucratically speaking. Last December, I took Takkin to see his caseworker so she could conduct what they called a VIDES assessment. This assessment makes him eligible for a DD Waiver, which is the key to him getting any funding or resources from the state of Virginia. You need three criteria to be eligible for a DD Waiver: cognitive impairment, functional impairment, and financial need. Takkin has all three, so he does in fact qualify to get on the waitlist for a DD Waiver. After conducting the assessment, his caseworker added him to the waitlist.

So what does that mean? Once you’re added to the waitlist, there are three priority levels: Priority 3 is for people who need a few community resources but are mostly self-functioning; Priority 2 is for people who need a few more resources; and Priority 1 is for those who need a great deal of support and resources. Because of Takkin’s condition, his financial situation, and his father’s declining health, he is a Priority 1, which is good because it means he is toward the top of the list to get the DD Waiver.

But how does the process work? We have to wait and wait and wait, basically. The agencies don’t even know for a fact when the state starts to release DD Waivers, but the caseworker’s hunch is that it will be in the fall. At that point, a certain number of waivers are released, and the top people on the waitlist go up for review. The caseworker writes an extensive report outlining Takkin’s situation and we hope and pray that the state grants Tak a DD Waiver.

If he does get a DD Waiver, there is an entire other step that follows, which is that the state then determines what TYPE of option within the DD Waiver he receives. There are three options: Building Independence, Family and Individual, and Community Living. With each option comes various levels of support and funding. The best option for Takkin is the Community Living option because this opens the doors for group homes, and the most extensive array of supports and resources. But again, it’s up to the state to make the determination on which option he gets.

So to sum up: first he has to get the DD Waiver, then he has to get the Community Living option. There are obviously many steps and it’s a very bureaucratic process. If he does get the DD Waiver, he also gets Medicaid, and his SSDI monthly income would increase to about $2200. This is the best case scenario.

If the stars align and Takkin gets the DD Waiver and the Community Living option, he could be placed in a group home as early as January. But the real problem (well, there are obviously a lot of “real” problems) is that there are NO facilities in Virginia that can forcibly keep him somewhere. So he will have to voluntarily stay in the group home. This is obviously the biggest hurdle and something we my family and I will have to strategize about if the time comes. It might mean everyone essentially “abandoning” him, and isolating him so he feels he has no other options but to stay at the home. It seems cruel, but it is truly in his best interest in the long run. I know I can do it. I don’t have much faith in my parents. And if he’s given the opportunity to go a group home and squanders it, then he’s back at square one, has to start the process all over again, and likely won’t have access to a group home again for several years. If my parents fall ill or pass away, and he isn’t in a group home, he will have to go to a shelter. And if you know me at all, you know I’d never ever let that happen. You can guess what WOULD happen then…

These are the things I think about at night when I’m laying in the dark. DD Waivers, and group homes, and Priority 1 designations. Court hearings to gain responsibility over another being’s life, and caseworkers, and medications. These are the things that play on the screen in my mind’s eye, the things I see when I look at him. Hurdles and challenges and endless mountains to climb.

I often think about the movie “Love, Actually.” Not because I like it, it’s actually hot garbage. But because of Laura Linney’s character. Throughout the movie she is always getting phone calls and she drops everything to answer them, but the audience doesn’t know who she’s talking to. Right when she’s about to make out with the love of her life, a guy she’s dreamed about for years, her phone rings; she answers it, then has to get up and leave. And all is lost between her and the love interest. What you come to realize is that all the calls are from her mentally ill brother. She is shackled to him. And her life revolves around his. I used to watch that movie and feel nauseous when she’d come on the screen, and get angry because WHY WOULDN’T SHE JUST CALL HER BROTHER BACK? Why did she give up on everything for him?

I don’t want to be Laura Linney, guys. I can’t be Laura Linney.

This evening Tak and I went to the park to throw a ball around because he was getting antsy and wanted to get out of the house. It was raining, but I obliged. We walked down a path to a little playground, and it was nice because no one was out and his shoulders dropped a bit and his eyes weren’t constantly darting around to see if people were coming by. We meandered down the path, threw the ball around, chucked some sticks into the woods. It was really only misting, and it felt cool and soothing against my skin and I was able to relax a bit too. For the first time in nine days–for the first time in more than two decades–I remembered what it was like to have a little brother: someone to laugh and joke with, someone to complain about mom and dad with, someone to stand in the rain with… as brother and sister… as adults… as equals.
Uncategorized

Day 8 with Takkin

Back CameraI’m only human. But I’ve been trying my absolute hardest to be better than only human. I think my exhaustion has caught up with me and patience is wearing thin.

Exhibit A – Text to my dad: I don’t know what the fuck to do with this kid. I’ve taken him out all day everyday and it’s never enough. He doesn’t want to be at home but any suggestion I made he says no.

Exhibit B – Death wish: We drove around for hours, including a trip to one bowling alley, which was deemed to crowded, and another bowling alley, which was allegedly even more crowded. This sucks, he said. There’s people everywhere. There were less than three cars in each bowling alley’s parking lots. I got back on the highway and it took all the strength I had not to drive us straight into the guard rail. Maybe that will take up some time, I thought, what with the ambulance coming, a trip to the hospital, etc. Or, maybe better yet, we’d both die and not have to deal with this situation anymore.

Exhibit C – Cry #3: We finally ended up at my friends’ house to visit their family for a little bit before his appointment with his caseworker. He was grumpy and I was trying to be bright and cheerful to get him out of his funk. We parked at their house and he got out of the car as I grabbed my phone and bag. “Well,” he snapped at me. “Are you coming?” I stood and looked at him–he on the sidewalk, me next to the car. I was frozen in place because I knew if I made even a micro-movement, I would lunge at him. Because he was rude. Because I had given up every second of every day for a week to him. Because he got everything he wanted all the time or else he’d throw a tantrum. But Takkin sensed something explosive in me, and softened a bit. “Are you ready to go inside sister?” I broke from my trance and we rang the doorbell together. As soon as I saw my friends, they hugged me, and I started crying because I never wanted to let go. It all of a sudden dawned on me how much I needed even a modicum of support, of which I’d had none this whole week. I wanted to collapse. Those hugs brought me back to life.

I chatted with my friends and played a little with their kids while Takkin talked and laughed and seemed to enjoy being there. Pretty soon it was time for us to leave for his appointment with his caseworker. “They’re so nice,” he said as we got into the car. His mood was completely different; a true Jekyll and Hyde situation if ever there was one.

“I haven’t seen him like this in a long time,” said his caseworker a few minutes into his session. It’s true: he was laughing and joking and in great spirits. It was a complete turnaround from the week before where he’d been sullen and agitated, waiting for my father to depart on his trip. “What is different?” his caseworker asked. I told her about the increase in medication, the consistent schedule we had been on, the help from the tutors, the mini trips we’d taken, and the activities I’d been doing with him.

“You’re not moving back from Chicago…right?” the caseworker asked.

The million dollar question.

If I moved back from Chicago, my life would no longer be my own. I would be sucked into the vortex that is Takkin’s life–organizing appointments and meetings, keeping a schedule for him, caring for him, coaxing him out into public. I’d be working two full-time jobs: managing editor and keeper of my brother.

I smiled weakly and shook my head no. The caseworker nodded; I’m sure she’d seen that sad smile many times before. But we both know what will happen come Friday when I get on a plane back to O’Hare and my mom comes to take over his care. All the good I’ve done, all the schedules and consistency I’ve provided, all the intake assessments and forms I’ve followed through on will swiftly disappear. As I was making dinner, Takkin called my mom and was rude and aggressive with her on the phone. He hung up and I recommended he text her and apologize for acting that way. He did. She asked him what we were planning on doing tonight, and he said maybe watch a movie. You should watch a funny movie, she texted back. You should watch “La Chevre.”

La Chevre.
A sophisticated French movie.
With subtitles.
And complex themes.
Is what she recommended.
For her developmentally delayed, ADHD son.

Has she ever even met her son????????

For all the times I complain and get annoyed with Takkin, say things like he always gets what he wants and we all have to serve him and he’s just spoiled, it’s little comments like “La Chevre” that make me realize, this poor kid has got so few competent people working on his behalf. Don’t get me wrong, he is loved, but unfortunately most of those people are completely inept and out of touch with reality and can’t seem to make the right choices that will serve his best interests in the long-run.

He doesn’t always get what he wants; he never gets what he wants when it means something real.
We aren’t all serving him; we’re just barely tending to his most basic human needs, if that.
He isn’t spoiled; he was never given the tools to grow into a reasonable person.

When we were visiting my friends and their two children this afternoon, I saw how the parents interacted with the kids. They were kind and loving, but firm with boundaries and rules. Their house was filled with warmth and color and sounds of laughter. I remember none of that from our childhoods.

Takkin was always going to be born with developmental delay; he was always going to have mental illness set in during his early 20s–these things are genetic, an inevitability, there was no changing that. But things didn’t have to turn out this way for him, he had a chance to live a happy, healthy, normal-ish life.

That window is closing, and I feel like I might be the only one keeping a sliver of it open. And when the weight of that window gets to be too much… will I find some deep well of strength I didn’t know I had, or will I let it slam shut and walk away?

I think I know the answer. But I’m too scared to say it aloud.