Help Is a Four Letter Word

Some brutal snippets from a recovering support staffer

I’m at a table with a best selling author, a book editor, and a poet. This might sound like the start of the world’s most boring joke, but it really happened. They asked me a question I’d been pondering for months before coming to their writing conference.

 “How can we best help you?”

If I had come to the conference with a book or a collection of short stories or essays or poems or some sort of tangible product of some kind, this would be an easier question to answer. I gave them the only answer I could put together that made me sound vaguely marketable.

 “I’m looking to widen the audience for my work.” 

They counter with thoughtful, pondering stares until the editor asks, “Who is your target audience?”

I hadn’t thought about it at all, but out of my mouth without hesitation comes, “People without a voice.”

My mother always says that as a young child I was just like a wind up doll, smiling and silent. I was preordained to be part of the solution, not part of the problem. The problems were already overwhelming, as my brother, four years my senior, was born with an IQ of around 70 and fairly profound autism. In the early 60’s autism wasn’t as widely discussed as it is now and when Kenneth was diagnosed, my parents were given medical advice that sounded a lot like “Well, good luck with that.” 

We had a house full of maladies to keep under wraps, with my mother coping with what is now known as bi-polar disorder. At least my father's alcoholism was more socially acceptable, often making him the life of the party.

With all these ailments and isms crowding up our house, there certainly wasn’t room for me to own any troubling adjectives of any kind. Smiling and silent was my station. My mother joked as I grew up that it appeared I may have been born forty years old. I was ever reliable and constant, smiling and silent as the world showed its cracks all around me. I learned early it was best to deal with these things with dignity.

Of course I can bake cookies to take to school. My mother doesn’t like to bake as she doesn’t care for directions.

Of course I can make myself scarce at home. Other people’s houses are more fun anyway, and have mothers who bake.

Of course you can have the last piece of pizza. I’m really not all that hungry.

Of course I can get someone to cover my shift at my job waiting tables so I can commit my mother to the psychiatric hospital. Of course I won’t tell my grandparents, it would only upset them. I mean, they might have to reschedule their golf game.

Of course I’ll follow you across the country when you get into grad school, long term boyfriend. Leaving my friends is a drag, but leaving the chaos is a blessing.

Of course I’ll be my brother’s legal guardian when my mother goes back into the psych ward. He lives in a nice group home that takes good care of him, so it’s not really a burden. No, it’s fine, let’s not dwell on the fact that I might have cancer. And when it ends up that I don’t, we never have to speak about it again.

It’s best to deal with these things with dignity, ever smiling and silent. 

Of course I’ll help you move. Or take your phone call at 2 am. Or clean up the mess you made or defuse the bomb you built. I’m a helper. I only comprehend my own worth through helping. 

I’ve read when a woman reaches menopause, her hormones revert to where they were right before she reached puberty. Usually a woman has about a decade to work her way through this time travel, but it all happened to me in one surgical afternoon. The good news is I didn’t have cancer, the bad news is hormonally I became a tween again. As I was born forty, being a child is something I have never experienced. All I know is I instantly heard my voice, as the inside my head was engulfed in screaming. 

I cannot go to work today.

I cannot meet you for coffee.

I cannot make an appointment to go to the doctor.

I cannot call you back right now. Or tomorrow. Or possibly ever.

I cannot prove I’m a responsible guardian to my brother on paper.

I cannot attend to anyone’s needs anymore, even my own.

I shun all responsibility, I cannot even clean my own bathroom.

I can no longer be of help. I am emotionally out of order. I’m all out of silent smiling. I hear only the screaming.

I have lawyers calling me about the guardianship paperwork. I tell them I need help with the paperwork, I can’t classify his expenses as I have no idea what they are. Just do the worksheet, they keep telling me.  I look at three years worth of bank statements, I go to the deepest recesses of my brain back to my degree in accounting. Just make the numbers work. Just plug them into the holes. It shouldn't be that hard. 

But it is, as some of the accounts were managed by my mother during her dark days and they consist of her money and the government’s money and the money my brother makes filing in a sheltered workshop. It’s all swirled in a big messy jumble. I know enough to know it’s not legit but it happened before I signed on to be in charge of it. Just do the worksheet, the lawyers tell me. I have my most math savvy friends look at it. I have hundreds of printed sheets of numbers spread out all over my guest room. I cry just looking at it, as it might as well be in fucking Aramaic.

I fly home to have my mother help me. She has done this paperwork every three years for my brother for a long time, so it will make sense to her. I’m relieved as I spread the papers all over her dining room table, until she gives me a blank look and says, “Sorry, can’t help you.”

The lawyers have had it with my crying. Just do the worksheet, they tell me when I say I need help. Just do the worksheet.

The deadline has come and gone. The lawyers tell me, “Since you’re incapable of doing this, you’ll need to hire a professional guardian for your brother in the future.” My mother agrees, as seeing me cry makes her feel bad about herself as a mother and we simply can’t have that. We start shopping around for professional guardians and it feels surreal that you can employ someone to manage your loved one’s life, like one would hire a dog walker. 

Samantha, a manager at my brother’s group home calls me pleading, “Please don’t stop being your brother’s guardian, Eileen. We’ve never had a professional guardian take care of anyone here at the home before. We really can’t imagine dealing with someone who isn’t family. I’ve been taking care of your brother for twenty years, so he feels like he is part of my family. I’d like to just deal with people who really care about the people who live here.”

Her impassioned plea softens me and I agree to stay involved. My mother and I find another lawyer who can fix the bookkeeping mess for a huge sum of money. This lawyer calls me after taking a long look at the hundreds of pages of disorganized numbers and asks, “Why didn’t you tell anyone you needed help?”

I find out Samantha no longer works at my brother’s group home as she was fired for embezzling funds from the disabled resident’s bank accounts, from her “family.” Perhaps a professional guardian might have sniffed her out, perhaps not. It certainly explains her desperate call to me and why she never answers any emails I sent her after we talked. I could have lived next door and talked to her every day and not known a thing, perhaps. Everyone involved was shocked to hear the news about her. I only heard more screaming. 

I placate the irrational child that runs my brain with pouting and television and eating Snickers bars for dinner and paying someone else to clean my bathroom. I pour bourbon on the noise in my head like I'm putting out a fire. For a brief window it sounds like the noise is muffled, like it's coming from just beyond my reach. I can still hear it, but it's off in a comfortable distance. 

Too bad when the bourbon wears off, the screaming is more deafening than ever. 

Meanwhile, back at the writing conference table, I explain to the writer, the editor, and the poet that I had the misfortune of being raised by mentally ill mother taking care of an autistic brother, or the “poor sense to be born second” as a family friend neatly summed it up.

There was simply no room for me to say anything growing up. I tell them writing has helped me to channel my screaming into something productive, something meaningful. Writing provides me an opportunity to be heard without being dismissed or interrupted. I tell them I hope I can inspire people without a voice to speak up as I have. I cry while I explain this and on my list of things to do before I leave this earth, sobbing at a table full of influential literati types is not on there. 

Our time is up and they tell me they hope they’ve been helpful. I tell them they have, because that’s what I’m supposed to say, because I know they feel confused about what exactly they’re supposed to offer me.

I’m not even sure I understand what “help” means any more. The dictionary says it’s to “make it easier for someone to do something by offering one's services or resources”. But it can also mean to take something without permission. 

Help yourself, Eileen. Please, just help yourself.