That Went Well: Adventures in Caring for My Sister (17 page)

O
n our daughter Kate’s wedding day, the Sun Valley Trio started playing. Irene, who had been handling the guest book, turned to the first man she could find. “You wanna dance with me?” she asked. She was proud of her pretty dress and shoes. I watched as the man paled, backed away from her, and mumbled, “No. Sorry.” He turned and hurried away. Irene’s shoulders drooped and she looked down at her shoes.

I was ready to say, “Hey, Irene,
I’ll
dance with you!” But I remembered Irene would not accept that. In her book, girls don’t dance together. Just then, a very sweet man, who has known Irene all her life, approached her. He had watched the same crushing scene that I had. “Irene!” he said, holding out his hand. “Would you dance this dance with me?” Irene looked up, beamed complete joy, and took his hand.

Now
that’s
what I call a friend.

If I were a better person, I would completely understand that some people just cannot cope with people with disabilities. I
would remember that what turns people away from those with handicaps is that they see themselves in them and it scares them, so they run from the whole experience.

But I am not a better person. I think secret, evil thoughts all the time when my friends, whom I thought were my friends, believe they’re being helpful by telling me what to do with my sister. I don’t say these thoughts out loud, but I do think them.

“Hey, Terrell. Has anyone ever really tried to teach Irene to read?”
No. Of course not. We shut her up in the attic, tied to a chair all her life.

“Terrell. I just loved meeting Irene today. Who feeds and dresses her?”
Now, honey. If you just met Irene and she was stirring the pancake batter for me, how is it you missed what she can do?

“Terrell, why do you spend so much time on Irene? I mean, come on, you deserve a life of your own. You should only have to deal with her, oh, maybe once a month.”
Really? Oh, thank heaven you’ve come. Wait right there until I get my notebook so I can write down which days you think I should have her and which days you’d like to take over.

“Terrell. I was just with my friends who have a mentally disabled child who has tantrums. I told them that they’d better start disciplining him right away or they’ll have an Irene on their hands.”
Really! Well, aren’t you just the helpful elf? And I’ll bet those friends of yours were
so grateful
for your advice!

“Terrell. I have a problem. The ladies who take my water class don’t want Irene to come there because she talks to them during class.”
Well, let’s just ignore the fact that this is a public pool and it’s against the law to throw her out of class. Let’s just take her out and shoot her. Will that be more convenient for you?

“Terrell, I, as a pediatrician, cannot sign your statement
encouraging community programs for mentally disabled children. In fact, I think it is too damaging for their siblings to keep these children at home. It’s better to send them away from the family.”

“But Dr. M.! My parents kept my sister home with me.”

“That’s what I mean.”

“Really, Dr. M.? Is that what you tell parents who have just delivered a baby with disabilities?”

“I have never in my practice had a baby with disabilities.” (Stated proudly, drawn up to his full and glorious height.)
Well, there you have it. You only have perfect babies in your practice. Did you throw the imperfect ones over the balcony?

“Mom,” my daughter said, once and only once ever, “when I invited you to watch the dance program, I didn’t expect Irene to come too.”

“I know, honey. But her companion is sick today and Irene and I are both delighted to see my granddaughter dance.”

“I’m afraid she’ll interrupt the performance.”

Now here, instead of thinking my evil spells, I come right out and discipline my adult children. “Righto, kiddo. We are leaving now. This is completely unworthy of you. We will discuss it later.” And we head to our car.

“Mom! Oh, please, come back! I’m so sorry. Irene, I didn’t mean to hurt your feelings.”

I think about it, there in the parking lot, wanting to spank my adult daughter, but why confirm the neighbors’ suspicions that we are all slightly nuts? “Okay, Irene, let’s go back and watch the dancing. But, my dear and precious daughter, I expect much more from you than this, so pull your socks up and get used to it.”

This last exchange had both my daughter and me in tears of frustration and anger. When it comes to my family, I don’t think secret, evil thoughts and silently curse. I just come right out and say it and do my best at modifying their behavior. If I had had more M&M’s with me, I could have thrown some in their mouths every time I caught them being nice to Irene. They probably think I need some M&M’s, too.

The fact is that nowadays, my girls and their husbands are all grown up, the grandchildren are all growing up, and everyone is really fabulous with Irene, including inviting her out to lunch with them, just for fun.

But I can’t do that with friends. These people
are
my friends, even though they come out with the most bizarre comments to me, and I must keep my evil secret thoughts to myself. So please don’t tell anyone what I’m telling you. It’s so unattractive.

In my most expansive mood (usually after a glass of wine or two), I come to see they mean well, that they love me, and they are just trying to help.

My Secret Wall of Fame

And then there are the friends who
really
help. They don’t try to help by asking silly questions or giving unsolicited advice. They really help by adding to Irene’s life.

There is Shannon, who invites Irene to go bowling with her every now and then. And there is her mother, Dorothy, who welcomed Irene into her water exercise class at our public pool, and every time Irene started to distract the other class members, Dorothy would call her name: “Irene! What a good job
you’re doing here!” And Irene would quiet down and exercise extra hard.

There is Anne, who takes Irene to fly kites on the first windy day in spring, and on many days thereafter. There is Geri, who calls Irene, takes her to lunch, and then they ride on our Trax train, clear out to the end of the valley and back, just for fun. There is Kim Madsen, who invited Irene to be in the LDS show with her (before Irene socked someone and had to leave the chorus line). There are all the folks who, knowing Irene lives for mail, send her holiday cards and postcards from their trips.

There is Kim Anderson, who last Christmas afternoon came to our house for a visit. She had never met Irene, but immediately sat down by the fire with her and found out that Irene had received a matching game from Santa. “I am really good at matching games!” said Kim, who has her master’s in business and has run several businesses very successfully. “Let’s play!” I left them to go fix some snacks. A few minutes later, Kim came staggering into the kitchen, Irene behind her with a big smile on her face. “We tied!” Kim looked shocked. “I really tried to beat her. We tied!” As Irene wandered down the hall, Kim whispered, “She is really good at that game! What is her IQ?”

“About fifty-seven,” I said,

“I’m really depressed,” Kim said.

But Kim had that part of the soul that just relates and engages. As they say in
Gypsy,
ya either got it, or ya ain’t, and boys, Kim’s got it.

There are the ladies of the LDS church Relief Society, who constantly welcome her and call on her in class to share whatever story she wants with them, and who come to her summer and Christmas open houses. And add to them all the teenagers of the
Special Needs Mutual at the LDS church, who partner up, one-on-one, with a special-needs friend every Thursday night, dancing with them, coaching them in their talent show number, making scrapbooks with them, and calling them at home, just to check in and be their buddy. It’s a real pleasure, watching these two populations together. You can see all the good it’s doing. And it’s good for mentally handicapped kids, too.

It was here at this program that we found out Irene had acquired a boyfriend.

“I’m going to get engaged to Roger,” she told me recently.

“Oh? Did he ask you to marry him?”

“No, but he’s going to buy me a ring.”

“How do you know he’s going to buy you a ring?”

“Because I asked him to!”

“I see. You asked him to buy you a ring.”

“Yup.”

Now I had to wonder about how far along she is in the sexual desire department. After all, everyone has these needs, and the ARC people have developed whole books and programs on how to deal with sexuality in this population. So I probe.

“If you and Roger got married, where would Roger sleep?”

“In another bed. Not mine. I’d roll over on him.”

“What would you and Roger do if he slept in your bed?”

She giggled. My heart races. “I would put a rubber spider under his pillow,” she laughed, slapping her knee.

Oh, Irene. How I wish you did have a real boyfriend. But it looks like maybe it’s not a real issue. And I breath a sigh of relief. Sex is so complicated. And then they don’t write, they don’t call, they don’t care….

A harsh reality about living your life inside a brain-damaged
body is that most of the people you hang out with are your friends because they’re paid to be your friends. But when you are surrounded by family and others who call you just because they’re your friend, it makes all the difference. This does not happen to Irene every day, but often enough to make her know she is really loved by a lot of people.

Another question I ask myself is this: is it possible that the richer you get, the less able you are to make a human connection with the handicapped and less fortunate unless you have one of your own? I have seen homeless people treat Irene with love and humor, and I have seen some wealthy people simply freeze up and turn away in her presence.

But then I love to generalize. Here’s another great generalization, but I have found it to be absolutely true so far: I have never met a gay man who wasn’t just terrific with Irene.

So I have my Preferred People list and my Too Bad They Lack Any Soul list. I am trying to be a better person, honestly. But most days I am not.

Into the Future: I Don’t Worry About a Thing

When we go shopping together, Irene has to remind me where I put my car keys, that I left my purse on the counter, or that I forgot to pick up my sack. I help her count out her money and I read her the lunch menu. She helps me remember where in hell I parked the car. Together we make up a whole sandwich. We hope.

Irene’s future will look somewhat like mine, I imagine. We will age, we will both need even more help, the whole scenario
will change and change again and again, and we will have to adapt to it. Sometimes I wish I could have a few years without Irene in my life, but she’s six years younger, she’s getting superb medical care, and she’s lost seventy pounds. With my levels of stress, I should maybe give her my burial instructions.

I really don’t worry a lot anymore. My favorite song about our situation is Mose Allison’s “I Don’t Worry ’Bout a Thing, ’Cause I Know Nothin’s Gonna Be All Right.”

Because, trust me, you siblings or parents: nothing is going to be all right. Sorry. But along the way, we’ve discovered things to be funny and healing and loving anyway, so that’s all right.

I don’t know when I moved into acceptance of my role in Irene’s life. I think it came on very slowly. But now it seems okay with me. The whole idea that I will be in charge of her program until I’m too old and talking to walls or totally incapacitated is really all right. I will be putting out little fires with her mood or her staff changes or something broken in her house forever. Oddly enough, the idea that this is a burden has completely gone away. And I don’t know how I got here.

I just woke up one day and started to laugh. This is what’s so: I get to watch out for my sister. It’s also: so what? I fully realized that no matter how I shoved and pushed it around and away, no matter how I argued with the universe that this was unfair, it wasn’t going to go away, this job I had been given. I don’t know how to tell anyone else to make this emotional move, but I guess the best I can say is, just go there. If it’s in your lap, live with it. Get over all the drama about it. Hell, have fun with it. Include it in your life. Think how boring life might be without all the bumps and messes that come with it. And the kindness of strangers you’ll encounter! Some days it’s a goddamn party.

We who have this in our family tend to be joyous about odd things. We’re so happy that for the whole weekend we didn’t get one phone call from a staff member who was quitting, or that a whole week has gone by and the horrid behavior hasn’t cropped up. We know any day the wheels are going to come off again, but today is a great day!

I’m not going to go all sappy on you and tell you that these angels have blessed our lives. On the contrary. My sister is a big pain in the ass half the time. But maybe so are your other family members, huh? What do you say? How about your friends? Just a pain now and then? How about your mother-in-law? I rest my case.

While Paul and I were on a walking tour recently, I found myself walking next to a young woman who found out about Irene and immediately told me that her brother is schizophrenic. His care is falling into her lap, and she is furious about it.
(Now how did we come to be walking together among thirty people on the tour? I tell you, there are no accidents.)
Their parents are dead. She is rebelling against the idea that it will now fall to her to make sure her brother is cared for in the best way. She did not plan to spend her time this way!

I nodded a lot, because it took me about half a century to move from resistance to acceptance. I thought of telling her to try to move into the realm of acceptance, but her expression told me that I might as well tell her to climb up on a cross and crucify herself. Maybe someday she’ll see that, in some strange way, caring for her brother will be good for her and make all the difference in her life.