
I wish I’d been nicer to Anne’s sister Sally. I wince every time I think of it and I could kick myself for my lack of charity. I am a nurse, after all. But an idiot. A cruel, thoughtless idiot.
My mistake was in thinking that she “wouldn’t” be normal (my definition of normal, please) and not realizing that she “couldn’t” be normal. Or not conventional anyway. Even though I had never heard of Asperger’s – who had in those days? – I could have been kind. I could have cut her some slack. I could have shown that famous tolerance I’m always bragging about.
I remember when she came to visit and just kept making a mess of the house, she never apologized or offered to clean up. It was all so tiresome. She never offered to pay for anything and she dominated every conversation. I was so busy being pissed that it never occurred to me that she actually didn’t know the difference. And she didn’t.
I guess I kept thinking that because she was brilliant – probably the highest IQ anyone in her small home town had ever seen – that she would be smart about social things. I kept thinking that she was just an attention seeker who needed always to be the center of things and traded on her eccentricity to keep everyone tuned into her. And, really, even if that had been the case, what would have been the harm in letting her have it? What did she really have, after all, except the undying affection of all those animals? I could have let her own the stage for the few moments we saw her in a year. Would that have hurt me so much?
And all those animals. From the time she was a kid she took in any animal that people had given up on. She had dogs that were untrainable, cats with one eye, horses that were impossible. She loved them all. She “got” them. They minded for her, and they loved her. They didn’t ask her to conform to some crazy rules that everyone seemed to know but her. They never expected her to clean up after herself. They never expected her to offer to pay for lunch. She would always postpone her own breakfast until after they had all had theirs. That should have told me something about who she was.
Or that time when Anne and I were fighting, thinking about breaking up. Sally tossed her head sideways (one of her tics) and looked at Anne with a pained expresion and said, "I don't know, Anne. When someone loves you that much, well, you don't just throw that away." Anne came home and we figured things out. That might have been my clue that there was so much more to Sally's understanding of the world. But, as I said, I was busy being pissed. Finding her wrong.
She worked for the zoo for awhile, and she was magical with gibbons and the Malayan tapir in ways that the other keepers marveled at. She seemed to communicate with them invisibly. They trusted her. She probably thought in pictures so they knew what she was going to do. She probably wasn’t afraid of them, and didn’t try to control them. She understood how confusing it is when people try to control you. And that same gift was the reason she knew what to do with her mother.
Her mother, Ginny, had Alzheimer’s for the last few years. Sally was patient with her, as she might be with a shy, wild animal. She would visit her in the nursing home and didn’t seem to mind when her mom got beyond knowing who she was. She didn’t seem mad when her mom recognized her brother, but not her. She would just go and sit with Ginny, combing her mother’s hair or reading. She didn’t ask for anything, just sat there beside her, quietly keeping company. Helped her eat sometimes, or brought her a new sweater, but mostly she just sat.
Near the end, when it was clear that Ginny was failing fast -- breast cancer finally taking her -- Sally camped out in the nursing home. The nurses let her bring in her dog Shayla. Sally and the dog slept in a sleeping bag at the end of the hall . She and Anne kept vigil, taking turns in four-hour shifts. One night, when her mother’s breathing changed, Anne went down the hall and woke Sally from a deep sleep. Sally told the dog to stay, and slipped into the room to take a look at her mom. She hardly saw Anne there. She saw her mom.
Then, she did exactly what her mother needed. She walked across the room and climbed right into bed with her. Without the least self consciousness, she wrapped her arms around her mom and held her. Quietly, firmly – like you would hold a kid who was a little too big to be held but still needed to. Sally’s eyes closed and she hummed softly. Not even music, really, just a sort of low vibration. Her mother relaxed. After awhile, Ginny’s breathing got softer and softer. It was about fifteen or twenty minutes of gradually softer breathing, and Ginny died right there in Sally’s arms. Calm. Easy. After she was gone, Sally got out of bed, and Anne went to tell the nurses.
When Sally suffered what we thought was an aneurism bleed, she slid into unconsciousness alone. Her animals were there, but they couldn’t save her. When we pieced things together later, and realized that she had actually fallen on the ice and that it had taken more than two days for her to lose consciousness, that’s when I have a hard time not crying. If she had called we would have told her to get into the ER. We would have called 911 for her a day earlier and they would have done an MRI. They would have seen the slow bleed, and maybe she would be here now. That’s when I feel really wrong.
That’s when I wish I could have offered her the chance to keep rescuing one-eyed cats. That’s when I wonder if she hesitated to call because she knew I was impatient with her. She needed rescuing. She probably knew that much, even if she didn’t realize why. But she didn’t call until it was too late. By the time she called she was slipping away. She wasn’t even on the line by the time Anne answered the phone. Anne flew to St. Paul immediately, but even that was too late. Sally was sleeping peacefully in the hospital bed when Anne arrived. She looked like her younger self, her child self. Blonde, beautiful, guileless. All of which she was.
Anne gave permission to turn off the respirator. She didn’t climb into bed with her, the way Sally had with their mom. She just stood beside the bed holding Sally’s hand and being a sister in the last moments.
Last night I heard an interview on NPR with Temple Grandin. She writes books about how to make life humane for animals – even how to slaughter them humanely. She understands animals more than she understands people. Like Sally. Her latest book is Animals Make Us Human. She talked to Terry Gross about what it was like to have Asperger’s Syndrome. She said she had to learn social rules like an actress learning a part – that these things were mysteries to her. You could hear her oddness as she talked to Terry. You forgave her that oddness because she has learned to translate it so that we could appreciate the struggle. I cried listening to her. I saw how Sally had struggled, and how all she ever wanted was to be taken in and accepted. As though her only sin was to have one eye, or be untrainable. Would that, after all, really have been so much to ask?


Salon.com
Comments
Don't kick yourself, you are not an idiot. You are not cruel or thoughtless. You gave back, right here, right now. Information. Clarity. A loving view of a hazy disease. If it reaches, educates, informs even one person, you have done Sally proud.
This is beautiful. Really perfect. A wonderful tribute.
There is so much heart here, I hope you can hold yourself in the same compassionate light you shine on them. Thanks for this brave piece.
You can only know, perceive, what you can in the moment. When the scales fall from the eyes and perception is new, we must be gentle with ourselves and forgive.
I learned about Asperger's Syndrome through my work at the school district. Now that I am aware of it I realize that I see people I would strongly guess are living with this. I believe I work with at least two people who have Asperger's. (My employer truly believes in diversity and willingly accommodates people with many physical and mental challenges.)
The lack of social skills is a giveaway. It goes beyond even what we might call "painfully shy." It is the inability to even make eye contact comfortably. It is not knowing or being able to engage in simple social interactions like acknowledging someone you pass in the hall with a smile or a "hello." I've learned to take no offense. But truthfully, knowing or suspecting the existence of a reason for this 'otherness' does make a difference in my tolerance levels. Now I know what I know, but before...I just couldn't have understood.
Thanks for sharing important information that others may also know.
maybe later. sad
That describes my eldest daughter to a tee. I sit here crying, thinking about how misunderstood she is, like Sally was. I ache for my girl sometimes...she is so wonderful (and no, she's not good at cleaning up after herself either) and selfless in so many ways but it is so hard for others to see past her social awkwardness and understand her. My "mom scope" sees her lonliness and wish to fit in and it just breaks my heart.
Luckily, for my girl, she has many siblings who understand her challenges and will be here to love her long after Sweet Husband and I are gone. If not for that...I don't think I'd be able to take the heart break of it all.
Beautiful post. Rated highly.
we all have those that we wished we had treated differently in hindsight
simply beautiful
g
(rated)
I have typed and erased three things here. THIS is why Rush and Bill and Ann and the rest are so wrong wrong wrong. Compassion and understanding is our greatest strength. Knowledge is our only hope, and you have increased mine. and enlarged my heart today.
Thanks.
thank you for this.
Spreading compassion is a good thing. Sally would definitely smile at you, seeing in you the one-eyed cat now.
Thumbed. That was some of the most evocative writing I've read here. Well told. Well done.
Very touching and thought-provoking post. As an animal lover, I always feel a bit melancholy thinking about these creatures (including my own dogs) who are forced by circumstance to conform themselves to our world. It must be frustrating and, in its way, lonely. The link between autism, animals and alzheimer's sufferers is interesting. I've always loved the poignancy of that movie title, "Children of a Lesser God." Sort of fits here.
You sound like such a kind and sensitive person (no surprise -- you're a nurse, after all!), so I hope you don't beat yourself up too much about this. Though I have to say I do the same thing. My mother, now 87, has suffered all her life from schizo-affective/bipolar disorder, and I kick myself regularly for not being more compassionate towards her when I was younger. What can you do?
I too heard Temple on Terry Gross. She had excellent parents who refused to to "put her away", and worked with her. She has become a successful and productive person and I have purchased her new book. I look forward to reading it.
Sally too was a successful and productive person. We can not be responsible for another one's health and well being, but we can honor and cherish their accomplishments.
You have done this here.
Which was pretty insensitive. But the funny thing was, HE is pretty insensitive. One of the funny quirks of Aspergers' is that tones of voice, eye-rolls, harrumphs, and sighs don't quite carry the same barb as they would to somebody further to this side of the austistic spectrum. So he said, "Well, shit, sure. All you had to do was ask."
Which brings me to another point, which is that Aspergers' can cause a total disconnect with the world of normal social relations. Empathy, reading facial expressions, understanding subtext and subtlety and guile, sussing out a lie - all this is very hard. If it's not explicit, it's not going to be noticed. So my cousin Dave has had to painstakingly compile a mental guidebook to dealing with humans. We started that afternoon, after I snapped at him. He came up and very forthrightly asked, "Ok, so are we supposed to stop talking sometimes when there's a conversation? I just go until somebody else breaks in." And I explained that you're expected to break occasionally and listen to what other people have to say.
Not sure what my point was, but don't beat yourself up too much.