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.

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.
Family, Mental Health

Day 7 with Takkin

I used to volunteer in the Alzheimer’s Care Unit of a retirement home. Each guest had their own IMG_2886special needs–there was no one-size fits all way of attending to those needs or mollifying the eruptions of confusion, sorrow, or anger that would often arise out of nowhere. One man liked to be sung too–old Americana tunes. One woman would calm down and get very docile when you retold the plots of TV shows like the Brady Bunch or Leave It to Beaver, as though the idyllic tales were stories from her own past.

I will never forget one old French lady with no teeth. She would scream and scream and scream until someone held her hand and stroked it. And then, like magic, she would lay back in her seat, complete serenity and peace overtaking her face. Her body would relax, her screams would dissipate into soft whimpers, and her eyes would shut as she’d dream of some better time, some better place.

Takkin always wants to hold hands, with everyone. He holds my hands when we’re walking into an unknown area and he is frightened there may be too many people around. He holds my hands when he’s telling me how much he loves me. He holds my hand in the car as I’m driving. I am always the one to let go first. And then he reaches back out again.

“Why don’t you want to go in public places?” I asked him today.
“Because I don’t want to get in trouble.”
“Why would you get into trouble?”
“Because I will touch someone and they don’t want to be touched.”
“Then don’t touch them.”
“I … can’t.”

Takkin went on to tell me that if strangers allowed him to high-five them, or shake hands with them, or embrace them, or hold hands, he’d feel better about being in public. So I’ve been thinking about touch.

He doesn’t touch anyone; there are so few people who hug him or kiss him or stroke his cheek. He didn’t even have much of that when he was an infant. It soothes him, it helps him regain a sense of himself. When he is feeling unmoored, someone’s touch shores him back up. When he reaches for your hand, or mine, or his, or hers, he is asking “show that you are here for me, that I am not alone, that I am worth being loved.” But it’s not up to strangers to provide that to him. It’s up to the one’s who love him. And we’ve somehow gravely failed him.

I recoiled from his touch today. It was just too much–there had been too many hand holdings, too many kisses on the cheek and head, too many hugs, it was all starting to feel… icky. And overwhelming; like with every touch, some phantom energy was being sucked from me. He sensed my half reticence/half disgust, even though it was a microfacial expression at most. But the damage was done. “Fine. You hate me. You don’t even want to be here. You are mean. Forget you. I don’t like you. Mean sister. Bad sister. I’m leaving. No one likes me. Go to Iran.” I tried to give him a high five but he saw right through it, so instead I gave him some time alone. Fifteen minutes later all was forgotten and he kissed me on the forehead and laid his head on my shoulder.

At the retirement home, as soon as I’d let go of that French lady’s hand, she’d take a deep breath and scream her high-pitched screams as though she was being buried alive. Takkin’s screams aren’t audible; they are happening within. But they are just as loud, just as unsettling, and only one thing abates them–the one thing he can only rarely have.

Family, Food, Mental Health

Day 3 with Takkin

IMG_2846Time is an interesting thing. It goes fast and slow. It creeps up on you, and then recedes, slinks away into the shadows. Time is a flat circle. Nah, just playin’. But time sure is a son-of-a-bitch. For one thing, my time in Virginia feels never-ending.

We spent almost the entire day out. Takkin didn’t have any “tutors” today, so it was just me and him. We got coffee, I took him to get a haircut, then headed to Hartwood Foundation for an intake assessment.

Hartwood Foundation is a respite home that provides services to people like Takkin and their families. One can stay in the home for up to 21 days to allow for the caretakers to have a break and the individuals with mental health problems to sort of reset and spend time with others like themselves. They also offer drop-in services, where service providers come to the home and help the individuals with things like going out into the community, learning to cook and clean, balancing budgets, and other activities meant to promote health and safety. In order to qualify for this type of help, we first had to have an intake assessment. I knew my parents could never convince Takkin to go, so I gave it a shot, and amazingly enough, he went.

We were there for an hour, and in that hour, he drank 5 bottles of water and went to the bathroom every 10 minutes. He stood up and walked around the living room every 7 seconds. He shook hands with his caseworker 16 times. And I was on the verge of tears thrice. Numbers. Time. Timing. Sometimes they are small and sometimes they are big.

The intake specialists asked a million questions, ranging from “what’s your daily routine?” to “do you ever fall down?” to “what kinds of foods do you like to eat?” He answered as best he could, and deferred to me when he could not find the words. Finally: what’s your diagnosis. A term he was unfamiliar with. So I stepped in and tried, though I was unsure of the answer too, as are his parents, as are his caseworkers, as are his doctors.

Bipolar. OCD. Anxiety. ADHD. Developmental delay.

With each passing one, the world around me moved in slower and slower motion. I saw the women sitting around the table set their pens down and pause taking notes, their mouths growing ever more agape as the severity of his situation dawned on them, became more real. The fidgeting was bad enough, the retelling of every encounter with the police, the sad truth that he has no interests and can’t be at home because he gets bored but can’t be outside because he has severe agoraphobia–but this panoply of prognoses was too much for even these trained professionals.

And then it was my turn to be overwhelmed. They passed over 20 sheets of paper that needed to be filled in, they told me he needed a TB test, doctor’s directives, a copy of his prescriptions, this, that, the other, and more. I knew I couldn’t get it all done in the 10 days I am here. And I know if I don’t do it, no one else will. So here we are. It was all for naught. And we are stuck forever in the same cycle of day-in and day-out nothingness.

After the intake assessment, we went to Taco Bell for lunch, and then to my friend Scott’s house. Takkin shoveled the tacos into his mouth and after less than an hour said he couldn’t stay anymore and wanted to go home. On the car ride he expressed frustration about going to the house and how he was going to be bored and what was there to do there anyway. I am Sisyphus. He is the boulder. The mountain is each day. And I am so very tired.

We had dinner at my uncle’s and now we are home again. But first we stopped for ice cream at an empty quick mart. Well, it was initially empty. As soon as he got out of the car, a man walked by and Takkin fist-bumped him. The man obliged but walked away looking perplexed and uncomfortable. At that moment, I wanted to drive away, so far from there, so, so far away, and forget I ever had a family at all.

We were almost home when he said he had to pee even though I told him to pee at my uncle’s. “I’m peeing myself,” he said. And then he did, a little. And I am not even phased. Because in time he can change his pants. A small and simple thing like urine does not upset me when there are so many worse things to shed liquid over.

This morning, on our way to his haircut, we decided to take a detour and drive past two of our old houses–ones we lived in when Takkin was in his early adolescence up to about 20. I call it “the time before.” He rambled on about old friends, about taking the bus to different programs and the data entry and Trader Joe’s jobs he had during that time; he recalled living in a home with his mother, living in a home with his father, and our old dog Tiger. He remembered all the things about his past life, before his illness set in. The time before.

And I wondered–am still wondering now–how can time stab you in the back like this Tak?

 

Family, Mental Health

Day 1 with Takkin

I arrived at 8:30 this morning and was greeted by my dad and brother at the airport, which w176836317-612x612as somewhat shocking since my dad was supposed to be on a plane to Iran. His flight last night had gotten canceled. He’s leaving tonight, fingers crossed, since Takkin seems to be much worse around him and my mother than he is with just me. In fact, there was a big to-do last night when my dad got back from the airport. Takkin got angry—for god knows what reason—and slammed a glass against the counter; it shattered to pieces. He then hit my mom on the back, all while yelling obscenities at everyone. Today seemed a little calmer though he is always amped up and antsy; he can’t sit still for even half a second.

One of his “tutors” (really just a companion who spends time with him and gives my dad a break for a few hours a day) came and picked him up and they went to play basketball or go on a hike. Takkin called my dad and I approximately 20 times in 1.5 hours to tell us the park was too crowded, the hike was too crowded, the road was too crowded. They came back to the apartment and attempted to play Xbox. But I was pleasantly surprised that Takkin stayed with him as long as he did.

Luckily we immediately had an appointment with his caseworker so he was busy all afternoon. He and I drove to the community services board center where his caseworker and psychiatrist work, and we met with her for about an hour. They talked about feelings, and the incident from the night before. She encouraged him to try and get rid of one of the five phones he is currently carrying around. She went over the agreements they made about him not touching walls, not touching other people, and not acting aggressively. “Things have been going kind of downhill Tak,” she said. “Why do you think that is.” He got up and reenacted last night’s events and said some things about needing to be respectful. He put his head in his hands and said he did a bad thing and was sorry and tried to apologize to mom.

An interesting thing happened. His caseworker did an exercise with him. She asked him to identify his feelings in a given situation. At first he didn’t really understand the prompt but then he caught on when she gave some examples.

“How do you feel when your sister comes to town?”
“Excited.”
“How do you feel when you’re with your tutors?”
“Happy.”
“How do you feel when you get to eat pizza?”
“Great.”
“How do you feel when Mom comes to visit?”
“Hatred.”

He backtracked. And changed his answer to “dislike.” But it was already out there. And I could see the years of abandonment had gotten him to this point. And he went on to talk about how much he disliked her husband because he wouldn’t interact and was withdrawn. But I was somewhat disappointed his caseworker didn’t probe further on that subject. She went on to ask one final feelings question: “How does it feel when dad is leaving on a trip?”

“Sad.”

She explained that sadness sometimes manifested itself into anger (though she certainly didn’t use the word “manifested”) and that maybe Takkin was acting out because that was the way he was expressing his sadness. I don’t think he understood, though he nodded. Maybe he got it a little. It’s tough to say what gets through and what doesn’t. The thing is, he’s in a rough situation: he’s got his mental illnesses and issues, but he’s got it doubly hard because his IQ is low and he can’t understand how to navigate out of the mental state he’s in. He doesn’t have the cognitive functioning to control his OCD urges or his aggressive behavior. He’s just in a really bad situation and I feel for him every day, even though I want to strangle him sometimes. Again, I truly don’t understand how my dad does it.

My dad is his primary—if not only—source of affection and attention. Takkin hugs and kisses him and holds his hands, no joke—150 times a day. I would go insane. Even when he holds my hand 15 times a day, it gets to be a lot. My dad leaves tonight and Takkin keeps oscillating on whether he is going to take him to the airport with me or not. I know this is a lot for him, but it’s a lot for me too. I can’t believe I’m here for 10 days. I’m already exhausted.

At least we’ve got some plans in the works. We’re going to drive to Charlottesville for a day, a dinner party with my friends one night, two psych appointments, an intake at a respite home, an attempt to go to this life skills and building program. We’ll see what the next two weeks bring. I’ll consider it a success if the cops don’t come, if I don’t have to take him to the hospital, and if I only cry 5 times.

You think I’m kidding. I am not.

***More to come tomorrow***

Family, Mental Health, Writer's Life

I Stopped Writing. Here’s Why.

pencil-and-paperI’ve spent 25 minutes looking at this blank screen in front of me. I don’t think I know how to string together a series of words anymore. It’s been at least two months since I wrote something, and even then I believe what I wrote was probably hot garbage. At this point in my life, I would rather be doing anything else than writing, and boy do I find some stupid things to fill my time: watch The Office for the thirtieth time, grab Ernie by the face and tell him that he’s a small baby man, organize my medicine cabinet, Twitter, Instagram, Twitter, Instagram, look through old emails by searching for keywords like “drunk,” “ugly,” “boyfriend,” etc., watch Parks and Recreation for the thirtieth time, eat everything then eat more, stare into the void. Anything to avoid writing.

So how did I get here? I wanted to be a writer from a young age. I wrote my first story when I was four. I took on massive debt to get an MFA in creative writing. I published a couple things. I submitted to dozens of literary journals. I started a blog. I applied to writing workshops. I followed other writers and journals on social media. I joined a literary discussion group. And I have very little to show for all of this. And I wish I could blame it on my circumstances, say that it’s because I have a demanding job and no time to write and too much else on my plate and blah blah blah. Those are all valid reasons for many people, but not for me. It’s all bullshit and I need to admit that to myself.

I don’t write because the things I have left to say are too scary for me to put down on paper.

Here’s the situation: I spent my twenties writing a good deal because I went through a lot. I felt like I could broach the issues I was facing with a fresh honesty. People sometimes even called me brave for laying bare my struggles: with my developmentally delayed/mentally ill brother, depression, loneliness, my childhood. I felt like I was truthful to a fault. But now that I’ve exhausted those topics, I realize something new about myself.

I am not brave. I’m afraid.

What I want to do is write about the things I think will make people stop loving me. I want to talk about drug and alcohol addiction, admit the complicated feelings I have toward my little brother’s illness, divulge the pain of growing up in a deeply dysfunctional family, recall my sexual past. If I was a stronger person, I would be writing about those things instead of writing about wanting to write about those things.

It all comes down to one thing though: my desire to write my truth is outweighed by my desire to be loved, liked, accepted. I don’t know how to change that, or even if I can.

I don’t want my friends to judge me, my family to shun me, my brother to be humiliated. I don’t want to feel ashamed or alienated. I think this is a quality that is missing from me, that many great artists have: they are willing to forsake everything for their art. I am not. And that sucks and I kind of hate myself for it.

Where does this leave me and my writing? I don’t know. Maybe I’ll write an essay about grocery shopping or create a listicle of my top favorite Saturday morning activities. Maybe I will wait until my parents die and then I can be free enough to write about my family. Maybe I will somehow magically stop giving a fuck about what anyone thinks when I turn 40. Or maybe I should just be ok with the fact that I am unexceptional.

I wish I had some clever, pithy, enlightened way to end this piece. I don’t. So I’ll just end it and hope I wake up tomorrow with something to say and the guts to say it.

Family, Mental Health

Conversations with My Brother

Image-1My brother talks in haiku. He has his phrases, his bits and pieces that fly from his fingers as he grips his iPhone in his hands, a whole universe in his palms–but what does he know to do with it?

Sister
Hello
How you
What
I’m sorry
Where’s daddy
Sad
Happy
Sister
Bored

The words are not the thoughts that live inside his head. They are something like a molecule of the entirety. He can’t express himself. He can’t tell me what he’s thinking about. His words have a chokehold on him, and he fights so hard against that grip. But he will never win that fight.

I speak I rant I rave I talk I soliloquize I chat I convey I declare I utter I voice I whisper I say I yammer I write. I choose each word with care and deliberation, and they work their magic for me–for me, when I am reaching for you, for you all.

How lucky I am…

Language is the barrier between him and me. Language is the barrier between him and the world.

But in the end–let us not be naive, friends–it’s language that does us all in.