OCD – Jaime Alexis Stathis

“Sing your song. Dance your dance. Tell your tale.”

Last week a video went around of Ash Beckham’s TEDx talk about how she responds to kids who want to know if she’s a boy or if she’s a girl. She explains that it’s confusing because her hair is short and she wears boys’ clothes, but that she is, in fact, a girl. She breaks it down: “You know how sometimes you like to wear a pink dress and sometimes you like to wear your comfy jammies? I’m more of a comfy jammies kind of girl….”

If you missed that video, here it is: Coming Out of Your Closet.

Ash’s talk wasn’t about gender, pink dresses, or jammies. It wasn’t even about homophobia or about coming out of “the” closet. It’s about the fact that we all have closets, but “We are bigger than our closets and a closet is no place for a person to truly live.”

She says that a closet is really just a hard conversation, and that we can’t compare our “hard” with anyone else’s. “Hard is not relative. Hard is hard.” In my case right now, hard is taking care of my grandmother who suffers from both hoarding and dementia, and for some people hard is the fact that I’m talking about it.

My honesty’s been met with minimal resistance, though I know that vulnerability and honesty make some people uncomfortable. But I also know this: other people’s discomfort has nothing to do with me. I’ve done a lot of work learning how to accept and own my truth, and though it was hard I’m coasting down the other side of a life spent minimizing my truth for the sake of other people’s happiness, which is basically an Acela train to frustration and unhappiness. That way of living does nothing to foster authentic connection between people.

Over the years I’ve also learned a few things about truth in writing, with my favorite being that “The more intimate and personal the detail, the more universal the story becomes.” {That’s me quoting myself. I wrote that when I was just starting to become a braver writer, and the blog post it came from is here: WE TELL OURSELVES STORIES.

Laura Munson (a writing mentor and role model of mine) is a courageous writer who wrote a book about her marriage falling apart and her reaction to it. Before she had a book she published an essay in the New York Times’ Modern Love column, and you can read that here: “Those Aren’t Fighting Words, Dear.”

Laura told me (as she will anyone who asks her) that a person can write about anything if she writes with compassion. It’s true. I wrote with compassion about my experiences taking care of and cleaning up after my grandmother, and I was rewarded with an overwhelmingly positive response. People wrote to me and said, “Me too.” They wrote and asked, “Why didn’t you ask for help?” “When can I come?” and “How can I help?” I didn’t have any good answers except that asking for help is scary, it makes us vulnerable, and we worry about meeting resistance.

Friends wrote and called to make sure I’m okay, to offer respite, and to commend me for both my willingness to do this hard work and my grit in talking about it. Some readers forwarded my post to friends and family who work with the elderly as nurses and therapists, and then those people reached out and offered their support. Some of these people were strangers until suddenly they weren’t, and I wept with gratitude for those hands and hearts extended in my direction. It was intense, but it felt good to allow people in to my world. I was validated and shored up by people who might not even know me if they passed me on the street.

Other folks were less thrilled. Some asked my mother if she’s mad at me for flinging open our closet doors, but she wasn’t. My mother is the person most worried about the contents of my memoir-in-progress, yet when she’s been questioned about my two recent blog posts she did something incredible: she defended me. My mother acknowledged that she’d be the first person to call me out if I’d written anything that wasn’t true, but that I’d written only the truth and that she was proud. If you know my mother you know that she adores me but doesn’t let me get away with much.

There’s a built in liability befriending a writer (in particular a nonfiction writer), but for some people there’s an overlap that is not a choice, and that’s with family. A family member called my mother to express his anger over my sharing of our family’s stories. He couldn’t believe that my mother wasn’t mad and was even more dumbfounded that she wasn’t trying to stop me. Some of the stories I told are old ones but I told them not as a rant, but as reference points to my present situation. My present situation caring for my grandmother and the ensuing story does not happen to be this angry person’s story. As far as I can see his hand has not stretched out in my direction.

I listened patiently as my mother recounted the hard conversation she had where I was pummeled for telling the truth, a truth that is also hers. She’s glad I’m telling the story because she knows how lonely it can be inside a closet, but for my mother there was an additional element to the hard conversation and her hackles went up: someone was attacking her baby.

I’ve hit the pause button on my life to help my family of three, and although I wouldn’t have it any other way it’s not without sacrifice. Unfortunately the angry family member failed to recognize either my benevolence or my hard work. He made my grandmother’s story about him and criticized my content for one reason: my truth made him uncomfortable.

My mother brought up as an analogy Frank McCourt’s Angela’s Ashes, a Pulitzer Prize winning tragicomic memoir (um…thanks, mom….) that is basically required reading for Irish-American New Yorkers. Of course he’d read it, but didn’t see the connection, and said to my mother, “That’s different; that book is about his family.” My mother said, “Yes. And?….”

He responded, “The difference is that Jaime is writing about my family.”

Oh. My. God.

“It’s her family too,” my mother said, because after that what else is there?

In Angela’s Ashes McCourt wrote, “Sing your song. Dance your dance. Tell your tale.” Certainly there were plenty of people who opposed his truth telling, but it didn’t stop the book from being crazy successful and widely received by those who also believe that closets are no place to live. McCourt had fairly late in life success, but taught writing and gave his students the best advice: that they are their own best material.

Our stories do not exist alone, and they intersect with the stories of the people whose lives coexist with ours either as a result of biology or through choice. In my recent “brave post” I mention my mother minimally (it’s really a story about my grandmother) and the only thing that could be considered a slight toward my mother is when I mention that I summon the courage she lacks. But what I said is true and she knows it. Any shame she might have for not being strong enough to do this on her own pales in comparison to her gratitude for my strength to put into motion a plan where there previously existed only a downward spiral. My mother has never been in denial about my grandmother’s illnesses, she just wasn’t able to step back and see the way through (and eventually out of) it.

Even if my mother denied my truth, would that make my observations of my experience off limits? (If you say yes you can private message me and so we can talk about it. Or we can talk about it here. Your call.) It’s just like what Ash Beckham says about hard: we can’t compare our hard to someone else’s hard just as we can’t compare our truth to someone else’s. It just depends on which side of the fence you’re on, and I happen to be on the dirty side.

I like the dirty side of the fence just as much as I abhor living in a closet. I know that mental illness can be an uphill battle, and I also know that not talking about mental illness doesn’t make it go away. I’ve done some research in books and in real life (too much, probably), and I’m 100% certain that not talking about it makes it worse. Silence can be deadly. If you don’t believe me ask anyone who’s lost someone to suicide, depression, addiction, or a combination. Ask someone if silence helped when they worried about whether a loved one was going to use or while they waited for someone to show up alive after they’d disappeared. In silence.

After my blog post last week a few people shared an article with me that was published in Slate. The title is “Nobody Brings Dinner When Your Daughter is an Addict.” It’s amazing. Please read it.

Sure it’s hard for people to ask how it’s going with my grandmother, but the brave ones do, and many tell me about their struggles. One friend wrote about her fear of talking about her family’s mental illness and thanked me for my honesty. She said, “I hope someone is bringing you dinner,” which is just as good as someone actually doing it and the perfect antidote to the stones being thrown by people who aren’t offering anything but fear dressed in a thin veil of judgment.

I’m not wavering on my position to tell the truth nor have I even considered backpedaling out of it. Here’s why: for all the people who aren’t hearing what I have to say there’s a hundred who are, and that number has the potential to grow exponentially as one says to another, “Read this; It might help.”

I’m not delusional in thinking the sharing of my story can change the world, but I know that real change happens one person at a time and that I’ve helped more than a few. One said that enabling is a “lonely place to live,” and another told me about her experience with family mental illness and “trying to minimizing the consequences of her behavior and picking up the pieces of her actions.”

What we’re saying to each other is “We’re in this together; I’ve got your back,” and this more than counterbalances the haters. Dr. Brené Brown says, “Don’t try to win over the haters; you are not a jackass whisperer.”

Brené Brown’s been on my hotlist for a couple of years, and in her now famous TED talk on shame she said this:

If we’re going to find our way back to each other, we have to understand and know empathy, because empathy’s the antidote to shame. If you put shame in a Petri dish it needs three things to grow exponentially: secrecy, silence and judgment. If you put the same amount of shame in a Petri dish and douse it with empathy, it can’t survive. The two most powerful words when we’re in struggle: me too.

She also said,

“If we can share our story with someone who responds with empathy and understanding, shame can’t survive….“Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light.”

If that’s not gorgeous i don’t know what is.

Closet’s are not as safe as people think. Sounds, words and thoughts can creep in there, and those dark places aren’t as hermetically sealed from the light as the closet-dwellers believe them to be. I don’t know what makes people think closets are safe. It could be shame, guilt or some other emotion masquerading as anger.

Denial is the first stage of grief, and it’s followed by anger. We circle through denial, anger, bargaining and depression until we eventually reach the blissful place of acceptance. Sometimes a person gets to acceptance then takes another lap through the list because life isn’t always (or ever) as easy as having a checklist. The path to acceptance isn’t always (or ever) linear.

Truth challenges. It stretches. It pushes limits of comfort and safety. I know that some family members aren’t angry, but are instead sad about what I’ve written about my grandmother. It is sad, but sadness can’t erase reality. You know what helps? Yeah: empathy.

My mother and I are in this together and we’re in deep. The best part—because I’m a silver-lining kind of girl—is that my mother and I are cooperating and working together in a way we never have before. We’re living under one roof and barely fighting because we have something bigger to deal with than the pettier stuff that’s ruled us for too long. The woman who’s been most afraid of my truth is actually embracing it, and that’s a beautiful thing in the midst of a messy situation. But here’s the thing: I wish it wasn’t necessary for my mother to defend me.

There’s a very good chance that the (closet-living) people who need to be reading this aren’t. Maybe they’ve written me off, maybe they don’t care, or maybe my presence hasn’t even reached their closets’ radar. I have no control over that, just as they have no control over what I write. I also have no control over any debriefings my mother might receive over my actions, but if anyone has a problem with me it would behoove them to talk to me about it directly otherwise it just might get my Irish up.

The “angry relative” interrogated my mother, and asked her if I’d interviewed my grandmother and then wrote about what she’d told me in confidence. It was nothing like that. My grandmother and I have conversations like we’ve always had, and like a lot of the best conversations they happen spontaneously. My grandmother’s concept of time and reality is altered now, but occasionally she’s able to really be in the present and I cherish those moments.

Maybe it was sitting in a kitchen where generations of our family’s women have prepped and cooked meals. Maybe the cup of tea steaming in front of her triggered something. Maybe the act of peeling of an orange sparked a memory. It’s impossible to know what triggers my grandmother’s reminiscing at this point, though I know that when she’s ready to talk I’m ready to listen.

We value our time together, and when it’s just the two of us she opens up more than in a group because in a group she tends to space out. It could be because she can’t hear everything or because she can’t keep up with the pace. When it’s just the two of us in a quiet room talking directly to each other our hearts engage with each other’s more specifically.

Our conversations and sharing make her happy, and the other night after our good, honest talk she made up a little song and sang it to me, “I’m so happy I could dance all night.” We danced a little then I helped her into some cozy pajamas, because it’s life’s simple acts that are the most challenging to her these days. I poured her a glass of milk, got her into her recliner with a blanket and turned on the television. My Mimi is definitely a comfy jammies kind of girl.

SMILE THOUGH YOUR HEART IS BREAKING

Sometimes as I’m walking down the street I’ll catch a scent that reminds me of my grandmother. It’s not the aroma of a flowery perfume or a roast in the oven or the cinnamon sugar of fresh-baked pastries: it’s a sour smell. It’s garbage.

The smells surprise me. They emerge from restaurants’ grease traps, from musty, piss-soaked sections of concrete, from dank subway platforms. The volatile molecules seep out of confined airshafts or from one of New York City’s many manholes that try, but fail, to contain an underbelly overflowing with waste.

My olfactory memory engages where my grandmother’s arrests, her deficit a result of mental health issues that include dementia and OCD, both undiagnosed due to an irrational fear of doctors, both also an expression of her disorders.

The grandmother I know now is not the grandmother I’ve always known. That woman: she’s gone. Throughout my childhood my grandmother taught me many lessons that I took as truth, but only now am I questioning the validity of what she preached and modeled. She told me not to take on anyone’s problems as my own, to let life’s baloney roll off my back and, as one of her favorite songs instructs, to “Smile though your heart is breaking.”

My heart breaks for my grandmother’s lifetime of stifled emotions and for her belief that a smile is a permanent Band-Aid. It’s challenging to keep smiling as I clean up my grandmother’s life’s accumulation, as the stories my family has told disintegrate like the dust that covers her cherished collections.

I am an only child of an only child, which means there are exactly two of us to care for and clean up after my grandmother. My mother and I have spent the past five weeks sorting, donating, and disposing of the results of my grandmother’s hoarding, but walking into her house it’s impossible to tell a single thing has been removed let alone a dumpster’s worth. It looks like the woman who lives there is destitute and without anyone who cares about her, though both couldn’t be further from the truth. There’s a fine line between choice and disease.

A couple decades ago my grandmother tore up the floor in her kitchen and hall exposing several layers of the previous generations’ style choices, leaving behind the heavy ridges of rigor mortis-like glue. In the hall is a tower of tile that’s been waiting to be installed for twenty years, though for my grandmother it’s “never the right time.”

Only one of the tiles has been used though not for its intended purpose; she’s used it to cover a gaping hole in her bathroom window where a pane of glass is missing. I don’t know what happened to the window, but because my grandmother has a temper it’s not out of the question that she put her fist through it. This isn’t something she’d share with us though she’d smile, look us in the eye and deny it. She’ll do anything to preserve her façade.

Her kitchen only has hot water, several light switches are taped over, and most of the house’s wall outlets are inaccessible. Those that can be reached are overloaded with tangles of outdated extension cords that snarl in corners and run like track marks across the parquet floors.

There are two broken televisions, furniture you couldn’t give away, and orphaned lampshades stacked like miniature versions of Pisa. There are enough envelopes, blank greeting cards and paper clips to open a small office supply store. My mother has shredded a dozen thirty-gallon bags worth of bank statements and tax documents from the last century, and we’ve recycled just as many bags of long-expired coupons, cancelled envelopes and discount-store circulars.

As my mother and I remove the garbage—dozens of blown out light bulbs, a plastic whiskey barrel full of mop handles and curtain rods—we reveal additional disasters and it becomes clear: my grandmother’s house is crumbling under the weight of what it’s been carrying. It’s trying to take my grandmother with it.

Until recently you had to shimmy sideways to get from one end of the apartment to the other. Because it’s unsafe, my mother and I have threatened to call the fire department or insurance company and my grandmother responds by slamming a door in my mother’s face or telling me to pack my bags if I’m there to bust her chops. My grandmother’s lost her ability to reason, but one truth is as clear as it ever was: she doesn’t want anyone coming inside her house.

She has enough sets of fine china, sterling silver flatware from Tiffany, and glassware (for everything from apertifs to digestifs) to host dozens of guests, but there’s a catch: she doesn’t entertain. She never has. I can count the number of people she’ll invite into her home on one hand, and it’s been so long since anyone has been allowed inside for so much as a simple repair that what was once a home has deteriorated into a hovel.

My grandmother has resolutely denied anyone the opportunity to clean for her, but with the courage my mother lacks I matched my grandmother’s fierceness and finally said, “I am not going to let you die in that filthy apartment.” It started as a threat, but then there I was in a mask and rubber gloves, stuffing two black contractor bags full of moldy clothes from her bathtub. I worked for four hours in that bathroom, but she didn’t seem to notice or more likely she didn’t want to talk about it.

Last Sunday my mother took my grandmother to visit relatives, and I stayed behind to tackle the bedroom. I started by bagging up and dragging out most of the items belonging to people who no longer have a pulse. It seemed cruel, but we just can’t keep it all. What got us into this mess is not what will get us out. I repeat that like a mantra.

I found hundreds of crumpled and balled up knee-high stockings, dozens of crocheted doilies, and seventeen curtains still tagged and wrapped in plastic. I unearthed enough ace bandages for a professional ball team, at least six sets of slippers, and a mint-condition abdominal exercise machine (my grandmother is almost ninety).

I discovered a box of hundreds of laminated prayer cards for every funeral she’s been to and some that she hasn’t, and just as many keys to long-defunct locks, some of which opened doors that never even belonged to our family. I found stacks of restaurant napkins because how else is she supposed to get the rolls home?

I dug out yellowed newspaper cutouts on depression, anxiety and the danger of emotional attachments to things.

A cedar trunk and several Rubbermaid bins held enough bed linens to outfit several families, and I bagged most of them for Goodwill. My grandmother sleeps in my deceased grandfather’s old, broken down recliner in what should be her dining room, but I kept a few sets of sheets in case she ever changes her mind. Erring toward hope, I decided to freshen up the recently cleared off bed.

I pulled back the musty comforter and sheets, and saw that my grandmother had used a ballpoint pen to draw faces and write words on the fitted sheet. I crawled onto the bed and kneeled over her art for closer inspection. Some of the faces had hair, some sported sideways smiles, and some had a straight line where a mouth would be.

She signed her autograph a few times, and in black Sharpie penned a note to me, “Hi Jaime,” she wrote, “Hope all is well with you, Love ya,” and next to it a simple, “Hi Jaime” in perfect cursive. With an impossible lump in my throat I stripped those sheets off the bed.

I’ve always loved that verb for changing a bed: strip. I exposed it; I made it naked. It felt wrong—stripping my grandmother of her secrets—but someone has to do it and the job’s defaulted to me. The bare mattress was deplorable. Its satin cover has vertical splits, and a ruptured side seam exposed the inner foam and wire. Even without a body sleeping on it the mattress came undone from the weight of what’s been piled on it for years.

I located a mattress cover, a set of soft, clean sheets and a heavy, brocade coverlet that my parents bought on their honeymoon in Greece. I pulled the linens taut, tucked tight hospital corners and jammed clumpy pillows into cases and decorative shams. I made it beautiful. I made that bed as if it matters, as if it might make a difference.

When I finished I stood back, admired my work and burst into tears. When I’m doing this work with my mother I try to keep it together, but alone I let it rip. I sobbed and worried about how much of my grandmother’s turmoil is inside me, and I wondered, as I often do, why we’re so culturally adverse to showing our true feelings. And I don’t mean just my family, though we seem to have a bad case of it.

My cleaning is not going to mend my grandmother’s brain or heart, but yet I continue. I dig through the rubble and scrub surfaces in part because it needs to get done, but also because an organized exterior might calm some of the agitation that percolates inside her. I have faith and hope in that possibility, but I do this work for a different reason: I do it for love.

On some level I’m doing this work more for me than for anything or anyone else. I do it because loving someone when it’s difficult is one of life’s greatest challenges and rewards.

We have a responsibility to care for our young and our old, and often the work is terrible. I have to tell my grandmother, “You wore that yesterday. You can’t wear it today.” I don’t mention the previous days because she can’t remember those. I have to tell her when she wets her pants and needs to change, and then I have to take the soiled garments and bag them because if I don’t she’ll squirrel them away. It’s degrading for her, but I do it with as much compassion and grace as possible and I’m constantly amazed at what we’re capable of when choice is removed from the equation.

I like a plan, but my mother and I were so far out of our depths that drowning pushed in, so I hired two geriatric care consultants to come assess the situation and help us devise a strategy. The five of us sat around my mother’s dining room table—actually, my grandmother stood, too lathered to sit—and we didn’t make much progress because all my grandmother wanted to talk about was how furious she was at me for inviting strangers into our private business. I assured her I did it out of love, and she said, “If this is the way you show love I’d rather you hate me.”

She asked me who died and left me boss, told me I should be ashamed of myself, and ordered me to leave her the hell alone. The emotions passed, and within minutes she’d forgotten her anger and agreed with the consultants who told her how lucky she is to have a granddaughter who cares so much. I told my grandmother I was confused because minutes earlier she’d told me to pack my bags. At the end of my rope I asked, “Which is it?”

“I love you when you’re not giving me a hard time,” she said laughing, and my reply shocked me, “Are you telling me that your love is conditional?” The underlying causes of OCD and compulsive hoarding are immense, but among them are a fear of not being loved and a desire to receive love through control. With the added attraction of dementia, my grandmother’s well-honed defenses are down and her natural inclinations are up. To say the situation is dicey is an understatement.

One of the phrases my grandmother has always used to diffuse a situation is one she still employs regularly, “Everything is under control, baby. Don’t you worry.” For most of my life I’ve believed everything my grandmother’s told me, but those days are over. I’m no longer buying; I just can’t. It’s not helping and it isn’t the path that will guide us out of this mess.

I’ve realized that the more out of control things are the more adamantly she’ll try to convince me that they’re not. The more she smiles in the midst of chaos, the more I prepare for the bottom dropping out. I actually feel encouraged when she cries, because although it’s sad, she’s expressing her emotions without resorting to rage or compulsions. This is good. I think she’s as tired of the worn-out stories and excuses as I am.

Each day new truths manifest from the dregs, and the path is clearing. I see that it’s the truth that will get us out. Well, that and smiling.