Month: February 2009

Sunday, I went to Red Hook, and had lunch with my sister, and her boyfriend. A. came along, but did a lot more observing than interacting. It was good to have her with me.

When I got to my sister’s group home, she was head-to-toe in salmon silk, with stout high-heels, and a rose-encrusted veil, which she had apparently purchased at a Celtic fair some years ago. Her earrings were palm-sized loops dripping with smaller loops, which held small metal disks and bells. Her jacket is electric blue, ankle length. She was completely suffused in a floral perfume – something like what you would get at the sale table at Claires or the like – she had put on so much it stained her dress in places – like the shadow of an oil stain that wasn’t laundered properly. I tried, and failed, to get a shoe change out of the deal. No dice – the outfit was carefully planned, down to the eyeliner.

Christine is a wonder to me – her sense of color and style is all her own. The things she finds beautiful, most people would too, but not all together at once. She is like a Gypsy wagon, all bangles and colors and garish, with no sense of sensibility to what is the “appropriate” thing to wear to what type of event. Her day-to-day attire is helped along by staff. Left to her own devices, the combinations can be blinding.

I’ve certainly spent enough of my life (t some stages more than others) drawing stares for attire or appearance, so I don’t get embarrassed about being with her in public. There have been times, over the years, when it was anyone’s guess as to who was drawing the stares (like when I had electric blue hair, for example).

I am more embarrassed _for_ her, somehow, in that she will never awaken from this sophisticated childhood fascination with the looming archetypes of attractiveness. My sister’s plight makes dealing with her so complicated. She is just aware enough to realize how damaged she is – how different she is. She is proud of her achievements, but unable to scope them in the larger context of reality. Working in a dish room and earning 100$ a month is akin to winning the lotto – there is nothing that can top that, in her world. And 100$, being such an astronomical sum, allows you to do whatever you want in life, if only you were allowed to do what you wanted.

I’m constantly forced to just focus on the conversation at hand when with my sister, to keep it moving, because thinking too much about what is said, or what I’m to say, means slipping down the trail of ghastly realization – a tangible closeness to denied dreams, pulsing with fervent hope and hazel eyes.

I make the effort involved on these pilgrimages for many reasons. Foremost, my sister is my sister – I love her. I think she loves me too, inasmuch as you can love while you remain incapable of understanding what love is in a truly meaningful way. My sister has bonds of emotion and force, the way we all do, when we are younger, and she has decades of Hollywood and Fairy Tale claptrap to “reinforce” what these bonds are, and how they work, but she is too egocentric to evolve emotion beyond the visceral.

Christine lives wholly within. Every crisis is the worst ever, every high is the best there ever was. The inevitable loss of my parents will come to her not as a hardship of loss, but a painful gain – a fault she will obsess over, which she will use to explain the limitations which beset her at all times, which she constantly is on the run from. There are days when I wish fervently that my parents will outlive her, an outside possibility, and feel guilty for even thinking of the relief such a thing would cause.

Beyond my fraternal love, there is the good that comes from these visits. My sister lives in an adult world – she knows duplicity, and spite, and hate, and hurt, but when she is happy, it is the purest happiness you can experience. It is like being awash in the sun, fresh out of the sea, with the perfect amount of warm breeze. It is, I think, the balance to her proposition. She is miserable so often, but when she is happy, she is _absolutely_ happy – something I struggle with in the best of times.

For over a decade now, whenever I’ve gotten into a serious relationship, this brings up walls between us. My sister becomes convinced she will be abandoned. I think her only real fear is being wholly alone and uncared for. This proclivity was reinforced about 10 years ago, when I was disowned by my parents for a few years, for decisions I made, which we have since come to terms about. In that time of two years or so, I didn’t see my family much – my brother more than any other, and I saw my sister twice. I think, for her, this crystallized the reality of what _could_ be, under bad circumstances.

So, the cycle is always the same – I see someone, she gets jealous, and turns it into an issue which she will fly into rages over, even lashing out at other things in her life, with the hurt and confusion over her perceived loss of me as the lever. Her answer to this came several years ago, when she found someone in her dayhab class who was likewise disabled, but, on the whole, much more pliable.

Jim, her boyfriend is a heavily medicated schizophrenic, about 10 years older than she is. He was a lot like a high-functioning autistic. Picture Rain Man, but with a proclivity for music instead of numbers. Jim works a few days a week assembling holiday decorations and kits. Jim lives in a supervised apartment unit about thirty minutes from where my sister lives. He is sweet, but there is just as much broken glass under the candy coating as there is with my sister. On the upside, Jim realizes the gravity his problem, and the voices, which have discriminable characteristics. He knows he needs the medications he must take to fight them, as well as the people to “help” him when they falter. Jim is frustrated by his ceilings, but understands why they are there. He is, in some ways, higher functioning than my sister. In other ways, he is more irrevocably damaged.

The idea, Sunday, was for Jim to get a ride to my sister’s house. This didn’t happen, which meant there had to be a lot of driving back and forth for pickups and drop offs. Like an elementary school date. I honestly didn’t know where I was going (though I had a good general sense of the region), and ended up following my sister’s directions, which were good, but off-timing (turns all too early, or too late).

I got a much better impression of Jim over lunch, which we had at a local diner, not too far away. He had bad teeth, thinning hair, a pasty complexion, and he bit his nails into near-nonexistence (nail biting is something my sister battles with to this day). He was nasal in his intonations, and, like my sister, almost wholly incapable of tonal or volume modulation when speaking. He was bright, and personable, and, in his own wry way, funny, but in a way that made me want to bury my head as much as laugh.

I saw what my sister loved about him – he was always talking – a mile a minute. She could redirect him, or stop him though, with little more than a raised finger or started syllable. He was human silly putty with verbal diarrhea. Jim talked, and sang, and gyrated – he knew the Album, Artist and Title of every song that played that day, and was happy to deliver lyrics off key if he wasn’t stopped in time. He also had a very limited sense of his limits, both physical and verbal.

There was almost a meltdown over ice at lunch, which I found amusing, since it was the warmest day in months. Jim wanted his soda without ice. I could almost hear the echoes of his mother, pragmatic and painfully Jewish, rolling around his head – “You get more soda with no ice. The ice is how they cheat you out of a quarter’s worth of soda”. I don’t even think Jim even knew how much a soda cost.

The waitress messed up, and brought ice. He didn’t pitch a fit, and she was gracious about it. She returned, and there was still an ice cube, which he fished out with his spoon, and tossed on the table. Food was ordered. Too much food for he and my sister to share – Jim was constantly jumping from his one “favorite dish” to another. I spent so much time trying to keep him focused on picking one thing, that when the time came for me to order, I had no idea what I had decided on getting.

After he and my sister gorged on food far beyond the ken of their normally controlled diets (which included him eating a soup-bowl of marinara with a fork), it was close to go-time, and he had only had a couple sips of soda.

At this point, my sister stepped in with an announcement of “the present” that she and Jim were giving A. and I as a wedding present. This caught me off guard, since my sister hadn’t really spoken to A. at all, and, to date, has refused to even acknowledge the fact that I’m getting married. Her present was that once she and Jim were married (an event now occurring in May, 2010; put off annually since 2005), they would move to the city, so they could be closer to us, and see us more often.

In my sister’s mind, her getting married is an act of transmogrification. Like a fairy-tale, or Hollywood ending, all the hardships – her disabilities, Jim’s voices, the fact that they both will need supervised living for the rest of their lives, will fall away, and what will be left are two perfectly happy, and perfectly normal people, free to travel and buy a house, and have children.

I couldn’t acknowledge it, because that would make it as good as a fact in my sister’s delusional reality. It was accepted as a nice though, and deferred until such a time that it could be planned, which will be never. It was like dipping a rose in liquid nitrogen, then spiking it.

At the end of the meal, Jim got insistent about having his soda refilled before we left – both the waitress and I were a little confused, assuming he wanted it to go. Instead, he just wanted a refill. Again, the chopped, Brooklyn-accented voice of his mother through my head, despite the softer accent passing his lips “Always get free refills before you go.”

He chugged about 3/4 of a liter of diet coke in three goes, with incredible belches (which he excused himself for) in between each quaff. Knowing bladder control and awareness are not always the highest priority, especially in exciting circumstances, I made a general query if anyone needed the facilities before we loaded up.

He initially said no, then, literally five seconds later, he said yes; “Very Badly.”

When he returned, he complained of a stomachache. The cause-and-effect was lost on him, even when explained lightly and pleasantly. My sister was concerned this meant we would not be making the next stop for ice cream. Upon hearing the words “ice cream” his stomachache magically vanished. It was like the kid who is too full to finish his broccoli.

We got the ice cream, and ate it in the parking lot, listening to more 80’s soft rock hits. When everyone was finished, and the last drops of chocolate scraped from Styrofoam cups, I drove Jim back to his apartment. Some of the food over ordering at lunch dawned on me during the drive – both Jim and my sister had doggie bags, which ensured one additional meal they could break out of the regimented system with. They knew how to play the system, even if they didn’t understand what or why the system was.

It was a long and tense few hours. At the end of the night, I wanted to cry, I wanted to sleep, and I wanted to drink, all at the same time. I made her day. After we dropped off Jim, we stopped and got her minutes for her cell phone, and bought a cherry pie, for her to share with the other girls in her house.

It is the simplest things that make her happy, and happier than I think most of us are capable of. Spending a day with her leaves me in a tornado afterward, more mixed up than I normally am, which is hardly a limpid pool of tranquility.

All you can do is keep going forward. There is no fairy-tale solution here – wishing and living for it makes me no less disabled than Christine.

Maybe someday, I’ll come to some sort of peace with all this, that doesn’t leave me feeling like I’m preparing to jump barefoot into a game of jacks every time I make plans to see her.