I do believe that the Male Sibling Unit is actively seeking to set my personal Doomsday Clock to two minutes to midnight. To hell with the committee that oversees the world’s Doomsday Clock, which is just a metaphor for the fact that we, as a planet, are in the shit and it’s all because the United States has a turnip for a President and the Congress is the puppet master of said turnip. There is no real “Doomsday Clock” but I imagine that if it existed, it would be pretty scary looking and it would be located somewhere in Germany. That Doomsday Clock is the least of my worries right now.
My own sprang a spring or broke a gear or something on Friday, when I discovered that The Male Sibling Unit is continuing to rush his own demise by eating sugar-laden food on the sly. The fact that his disability makes it impossible for him to truly be sly is the only saving grace in the situation. Most diabetics who try to hide their verboten sugar intake do so sneakily, like my mother used to. I will never forget the day my first husband walked into our kitchen after taking her to work in her car in order to bring it back home to do some repairs on it. In his mitts was a crumpled-up ball of empty bakery bags from the local supermarket. He had found this debris stuffed underneath her driver’s seat when he released the seat back to make way for his legs. We untangled the bags and found that there were four. When he confronted her (I did not dare, or my Doomsday Clock would have been set back then, in 1998) she became defensive, of course, and basically told him in no uncertain terms that he was not the boss of her. Actually, I think her exact words were “Fuck off” but I can’t quite remember and I sure as hell am not going to ask him, because then my Doomsday Clock will be set to one minute to midnight and possibly I will risk self-combustion right then. I swear, that woman sneaked sugar up until the day she died. I know that the doctor told me she was essentially brain dead the day she passed, but I really think she probably had a stash of Snickers bars somewhere underneath her sheets or stuffed under the mattress. The woman was tenacious AF.
The Male Sibling Unit has his own special products that I buy him to stave off his incessant, unrelenting desire for sugar. I buy him Splenda packets for his cereals, sugar-free candy, sugar-free cookies, jams, gum; you name it. If it can be procured in sugar-free form, he has it. I also watch his carb intake and even allow him actual sugar on occasion, simply to give him the sense that he isn’t foregoing every, single thing that he loves. He tests his blood sugar three times a day and we adjust his insulin injections accordingly. He attends workshops on diabetes and diabetes clinics. Everyone in his realm is invested in his personal diabetes experience. Since he’s so into himself, it would make perfect sense that he would want to walk the walk and talk the talk, because much praise is offered when his A1C levels are lower and his tests are good. He eats that shit up as enthusiastically as he does peanut butter brownies.
Alas, I was wrong to assume that. This is proven to me over and over again, as he continues to hoard food (a lifelong practice) and stuff plain, white bread down his gullet and eat jams bought for the non-diabetics in this house and sneak gulps of my Coca Cola and then put it back, thinking that I will not notice that an unopened bottle has, in fact, been opened, and not by the husband, who detests Coke. Guess what, fucker? I noticed when I grabbed it out of the fridge and opened it, expecting to hear that satisfyingly fresh hisssssss as the vacuum seal let loose, and heard…..nothing. That soda was as flat as my tits before I got pregnant the first time.
I’m not complaining about caring for him. Okay, so it sounds like I am, but I’m actually just blowing off steam. Caring for him has been a journey I willingly and enthusiastically took on from the moment we knew that he was always going to need looking after. I can still remember, with perfect clarity, standing in front of my 5th grade teacher, the dashing and charismatic Mr. Horovitz, who was quietly demanding that I tell him why I wanted to drop off the crossing guard detail.
Being a crossing guard, or “Patrol”, as we called it then, was a very big honor and responsibility. One was chosen by a committee of teachers at the conclusion of the 4th grade. Throughout 5th and 6th grade, one had the awesome responsibility of arriving at school early and putting on a strap with a badge, grabbing a flag pole, and heading out to a designated corner in our neighborhood to cross the other students, assuring their safety across streets as they trekked to school. We did this in the morning, at lunch time, and after school. We were rewarded for our service with a trip to Washington, DC at the end of 6th grade. You just couldn’t do any better than this when you were in grade school. I was a Patrol, and when my mother had broken down at the kitchen table in 1977, after being given The Male Sibling Unit’s diagnosis (Severe Mental Retardation with Autism sprinkled in for effect, never to advance any farther intellectually past a 4th grade level) I had sat on this information for a long while. I was already heavily invested in my role as The Big Sister, imagining things like turning 16 and picking him up after school in my convertible Camaro and impressing all his friends. The fact that we were dirt fucking poor and on welfare and that I would never own a car at 16, much less learn to drive then because at that point, we no longer had a car, escaped my juvenile daydreams. I was going to take him for ice cream and buy him stuff and be the coolest sister ever. Most of all, I was going to protect him. When the diagnosis came down, I realized, immediately, that protecting him was going to be at the top of the list now. I saw how people treated the kids with disabilities, and called them names, and were generally just cruel. There was no fucking way on earth that I was going to let anyone make fun of my brother or call him a “retard”. As a matter of fact, my mother had forbidden that word to be uttered from the moment she found out he was handicapped. I knew I had to be the front line to his safety, because I spent the most time with him. A big sister had to protect her sibling.
My mother was a mess after the diagnosis. She spent every moment at the kitchen table, crying, smoking, listening to the radio, writing letters, and many times, I would find her with her head cradled in her arms. Her love for me had been cut off at the knees by then, and all I received was an occasional bark commanding me to “Take your brother with you” when I would go somewhere after school or on weekends. Instinctively, I knew she needed help. What could I do, though? I needed to do something to help her. That’s when the idea formulated in my head: I would give up Patrol, freeing up an extra hour in the morning and at night, and be there for her, and for my brother. I remember writing my resignation on a piece of paper and quietly placing it on Mr. Horovitz’s desk at the beginning of the school day. Just before lunch time, he called me to his desk. He was holding my resignation, and he asked me why I wanted to resign. I had not told anyone about my brother; I didn’t want anyone to laugh or make fun of him or even worse, feel sorry for me. I was ridiculously proud and stubborn even then. My whole life was made up of secrets; no one knew that my dad was actually a well-respected businessman in the community who had carried on an affair with my mother that produced two children, or that we were on welfare. That stuff was nobody’s business then, and was of little importance to young kids anyway. Having a mentally handicapped brother was of interest, though, and never in a good way. There was no fucking way I was going to let anyone mess with him, and I wasn’t ready to reveal it to even my best friends. I didn’t expect what happened with my teacher, though. In retrospect, his heart was in the right place, but I wish he had done what he did in a different, more private way.
He waited for my response. I shifted, uneasily, from foot to foot. “I just need to.” was all I could manage to say.
“I’m sorry, Lori, but that isn’t a good enough reason. Please, tell me why.” He was not going to relent.
“Because.” I said, quietly. Because, you fuckwit. Don’t ask me these questions. I don’t want to tell you.
Another student stood beside me, waiting for his attention. I was hoping he would accept my resignation and then move on to her request, whatever it was. But nope. He was adamant. “You’re not sitting down until you give me a good reason for quitting Patrol.” I knew this guy. He wasn’t kidding. My resolve was slipping, and I knew that the next step was going to be calling my mother. Then I would be in deep shit. I didn’t even realize that there were tears running down my cheeks until Mr. Horovitz asked me why I was crying. I managed to speak, quietly, as I cried. “I have to quit to help take care of my little brother. He’s mentally retarded. We just found out. My mom needs me to help her.” He was silent, his face registering a surprise I had never seen before. He looked down. I stood proudly, my insides quaking, because I knew the little fuckstick next to me couldn’t keep a goddamn secret and the jig was almost up as soon as she could assemble a group of stupid, fucking, giggly girls and whisper what she had just heard. Finally, Mr. Horovitz looked at me and said, firmly but kindly, “You aren’t quitting Patrol, Lori. You can’t.” I sobbed a little and protested, “I have to. I have to be there and help.” He smiled, and said, “I know you want to help, but you have to remember that your mom is an adult, and her job is to take care of you as well as your brother. I know you think you’re making it easier, but you are only hurting yourself. And you promised to do a job. You can’t go back on your word.” I felt that he just didn’t understand how high the stakes were. I had to be there for my family. His next words did little to calm me. “I am going to talk to your mom, okay? I know she will agree with me. Let’s just forget about this. You will continue to be a Patrol, because that’s really important, and it’s also really important for you to do things you love, too. You’re a really good sister. I am really proud of you. But you are not going to do this.”
Needless to say, I went home, dragging my feet because I was positive, given how well I knew my mother and her present state of mind, that she was going to kick my ass for dragging my teacher into this and causing him to have to call her. I was in for the surprise of my life, though. She actually agreed with him, and was a little nicer to me for a while after that. My classmates, too, surprised me. They never made fun of my brother, and aside from a few nervous questions about whether or not his condition “hurt” him, my friends pretty much took up the mantle of surrogate protectors, too, which shows you that kids can be shitty, but sometimes, they can be pretty awesome.
Protecting The Male Sibling Unit is just a part of who I am now, and the fact that he makes it hard for me to do is infuriating and frustrating. I’m in this ’til the end, but there is no need for us to rush the end, is there? With every furtive peanut butter sandwich on white bread, with regular Smuckers instead of his sugar-free preserves, he is fast-forwarding his clock, and mine, because I swear, I can actually feel my blood pressure skyrocket when I discover that he’s been at it again. I try to be calm, to sit him down, to talk to him like adults talk, to use flattery and praise to make him feel invested in making good choices. I understand that there is some sort of short-circuiting involved with all diabetics; they seem to want what they cannot have more intensely and when they go off the beaten path of sensibility, they really stray, ending up in another county at times. They have little self-control, with regular foods and with diabetic foods. I can recall my mother eating every piece of candy that I bought for my brother’s Christmas stocking in a year before he was diagnosed. When I went to retrieve his stocking stuffers to fill it for him, there was an empty bag where the candy had been. She was scathingly unapologetic: “If you would let me eat the shit I want, I wouldn’t have had to eat his.” The same thing applied to her diabetic candies. She couldn’t eat just one or two pieces; she had to eat the entire bag. The bad thing about diabetic candy consumed in large quantities is what it does to a diabetic’s digestive system. It, well….speeds it up. The exit is nearly as quick as the entry. And when you’re an elderly woman who broke a hip and needs to use a walker to get to the bathroom, sometimes you don’t make it. And you leave evidence of your lack of self-control for your home health aide to clean up. And in my mother’s case, she did that just as unapologetically as she ate my brother’s candies, and those 4 bags of bakery items in 1998. Eek.
I doubt that the latest talk with The Male Sibling Unit had any effect. The husband and I have resisted buying a cabinet for food that is off-limits and lockable. That stubborn part of me that was so stoic when I was 11 is now an old lady, set in her ways, pigheadedly insisting that I am not going to make my life more difficult just because he’s an asshole who won’t listen. I know, it’s such a little thing, really. It will ensure his safety and enable me to avoid a stroke. It doesn’t mean that I won’t go all Lewis Black on his shit about something else, or because I have finally reached the end of my rope with some other insufferable subject, like Doomsday Clocks and turnips and how the FUCK does the Religious Right justify sleeping with a porn star within a few month of one’s wife having one’s baby as being worthy of a “mulligan” when every other politician in the world who has even sneezed inappropriately in the general direction of a woman not his wife has been forced to leave office or been impeached? I know. That was a lot to digest. But see? Lewis Black would be proud of that rant. So, we’re gonna get the lockable cupboard, and I am going to hope that I can figure out a fool-proof way to hide a key. And remember where I put it. Maybe I can hide it behind a clock. Tick-tock, motherfucker.