Happy Happy Joy Joy

When my sister and I were kids, our family went camping several times a year. We had it all – the Coleman cook stove and lantern, a big red cooler, and a brown canvas tent. My mom packed up the food box and the cooler and my dad packed all the gear into our bright red 1973 Chevy Impala (That car hung so low with all that gear that my parents had to creep over rocks in the road lest they tear out the oil pan.) and we four and our cocker spaniel Casey piled in and we were off.

Mostly, I remember those camping trips fondly. Better than that, really. The days were hot and sticky and the nights were cool and even stickier once the mosquitoes came out and my mom doused us all in bug spray. We hiked, which I enjoyed, and I read books for long hours in the shade of a Ponderosa Pine. (Have you ever smelled a forest of Ponderosa Pines? Divine.)

One thing we four agreed on that was not quite right about our camping trips was this: other people. If you know us, this is not surprising. Mine is not an easy-going family and other people are loud. Not that my family is quiet; we’re plenty boisterous, but when we went up the mountain to get away from it all and the other campers made liberal use of their boom boxes and ATVs, we were less than pleased.

We had to get away from the people who were harshing our mellow, so the minute my younger sister Erin and I were old enough to carry one, our dad went out and got a frame pack for each of us. He’d bring the bathroom scale to the kitchen and stand Erin on it, then add the pack and start loading her up with a sleeping bag, clothes, and food. When he reached the pre-determined weight limit that he’d devised with a complex formula, three pencils, a slide rule, and several bits of wire and string (a physicist is a physicist, whether he’s dealing with whatever it is that physicists deal with or a family camping trip), he stopped packing. Next I stood on the scale while he filled my pack, then my mom, and finally my dad carried everything that was left.

I have no idea how much weight any of us carried, but I do know that none of us could get our packs on alone. Each of my parents would help one of us girls get a pack on our back, then Dad would lift Mom’s for her. Finally, Dad would lean his pack against a tree and squat with his back to it and slip his arms into the shoulder straps. Then Mom would stand in front of him and grab both of his elbows while he grabbed both of hers and and there would be a giant grunt in stereo and with any luck, Dad would find himself upright on his hind legs. Finally, Mom and both of us girls would get behind Dad and push the pack up so Dad could buckle the waist strap.

We all stood there, swaying a bit under the weight, but as long as no one went down we were good to go. Off we went like a family of middle-class, suburban turtles, staggering a little as we breached the parking barricades and approached the trail head. We walked, Dad and me in front, Erin and Mom behind and Casey going double the distance by bouncing back and forth, back and forth, and slowly, without noticing it was happening, we got used to those packs. We eventually walked, not exactly normal, but at least normal-er. We didn’t feel unbalanced or awkward anymore, just heavy.

We would walk for an hour or so, chatting some but mostly walking in silence, passing the canteens around and enjoying the sun. Eventually, Mom would holler to Dad that Erin needed a rest and Dad and I would start the hunt for a big patch of shade. As soon as we found a spot, I unbuckled my pack’s waist strap and Dad lifted the pack off of my shoulders. When the weight was gone, I could feel my body rising, rising off the ground, as if I was floating and when I looked at my feet I was surprised to see that they were still in contact with planet earth.

That floating-away feeling? That’s how I feel today – light and free and untethered.

We visited my grandma’s new home this afternoon and it is everything we were hoping to find for her. It houses a maximum of ten residents, all of them women. There is home cooked food, a backyard, a quiet neighborhood, and most of all, friendly, kind, and dedicated staff. All of the things that we need, they can accommodate. Erin will continue to provide all of our grandma’s personal care. We can be with her any time, day or night, which is not a big issue now but if she becomes ill and, eventually, when her death is near, we’ll take turns spending the night with her. She can keep her own schedule, have a glass of wine in the evening, and above all, she will be safe.

We have breathed a collective sigh of relief. We should have her moved into her new digs by early next week and we couldn’t be happier.

Between my grandma’s new home and Carter finishing the school year successfully, I could hardly be happier, but there’s one more bit of information that I know you’ll want to hear:

Carter has not seen any of the little guys for three days.

This week didn’t seem to have a thing going for it, but it’s all turned around nicely. Welcome to summer!

Bad Ass Grammy

My grandma is a bad ass. She’s also quite fragile. We have this in common, my grandma and I, this mix of tough and weak, strong and broken.

She’s not a saint and I don’t idolize her, but I admire her and love her in this big, surprising way.

She’s a survivor. Born in eastern Kansas in 1922, she grew up in the heart of the dust bowl. (Don’t know much about the dust bowl? Read this.) Her mother died when she was still quite young, while my dad and my aunt were kids. My aunt, her youngest child, took her own life in 1979, a horror that no parent should ever endure. When my grandpa died a dozen years ago she grabbed my dad by his ear, got right in his face and said, “I am next. Do you understand?”

She’s a total smart ass, which is my favorite thing about her. It’s good to know that I come by it honest. She didn’t go to college (It was the 1940s, after all.), but she is fiercely intelligent and well-read. She and my grandpa worked hard, were careful with their money, and built a sizable estate to ensure a comfortable retirement. She was opinionated, stubborn, and most of all, a woman who was not willing to take shit from anyone. She is, in some ways, all of those things even now, but time has taken a toll.

So when the people at the facility where she lives treat her like an idiot or a child, or she is unsafe, or she is forced to live in such a way that she is unable to maintain her dignity? I get angry. Like, Mama Bear angry. Furious.

(Before I continue, you should know that we are actively seeking a new facility and will move her to the best place we can find as soon as possible, and yes, we will be making reports and filing complaints with every applicable agency.)

My grandma has lived for over two years at The Montebello, most of that in independent living. Things were fine there; she required more of an assisted living arrangement and with my sister, Erin, as her primary caregiver, that’s what she got. We did see some problems. When Erin was out of town, they insisted on giving my grandma her meds on their schedule, rather than the one prescribed by the doctor, but it wasn’t a big deal and we assumed we were catching some attitude from one crabby nurse.

She fell out of bed a few weeks ago and the day that happened, the alarm bells started ringing and they haven’t stopped since. For her part, my grandma was wearing her LifeAlert bracelet when she fell but didn’t remember and never pushed it. Fortunately her downstairs neighbors heard her banging on the floor and someone went to check on her. They proceeded to make some poor choices.

  • They called my sister, as the chart indicates they are supposed to do, but she was out of town and they didn’t get an answer. So far, so good.
  • They called my mom next and again got no answer. This is the next thing they are supposed to do but as my folks live in Maryland, it’s more of an information sharing endeavor than anything. But still, it’s all good.
  • They said they called my dad. Now, I don’t know about your cell phone but mine tells me about every call I receive, whether I answer it or not. No such call was made. So that’s one lie.
  • They never called me, even though the instructions in her chart indicate that they should call all four of us. I was 3 miles away from the Montebello, asleep with my cell phone right next to my damn head, while my grandma was alone and in pain in an ER downtown. She was there for over 8 hours before I got to her.
  • We have promised her that she’ll never have to go to the hospital again, that we will keep her comfortable at home. She doesn’t want to be here on planet earth anymore and there’s not much point in taking her to the hospital when she’s ready to die. The Montebello would have no choice but to call 911 in a situation in which there was no family member available to take over, but there was. I could have been there in 10 minutes. Also? The reason they sent her to the hospital was to make sure that her left hip wasn’t broken, that hip was replaced 3 years ago and could not have been broken. If they had called me, I could have told them that tiny but oh-so-important piece of information and spared a lot of people a whole lot of trouble, especially my grandma.
Obviously, she couldn’t return to her apartment. If she’s so cognitively compromised that she didn’t remember to press the button on her wrist then she can’t be alone. When I took her back to The Montebello, I transferred her care to their health care wing, which is what they call the nursing home there. From there it’s all gone from bad to worse.
Between us, my sister and I spend a great deal of time with our grandma. Erin’s full-time job is to be her care provider, so that’s a huge number of hours every week, and unless Carter is very unstable or Brian is out of town and I’m needed at home, I spend at least 3 evenings a week with her, so that’s another 15-20 hours. We know damn well what’s going on over there (though what Erin sees on the day shift is better than what I see in the evenings), and a whole lot of it isn’t pretty. Let’s just take it point by point.
  • She fell out of bed again. This time, she remembered about the button, but she wasn’t wearing her LifeAlert (no need, right?), so she tried to push the nurse call button. It was on the bed, clipped to her pillow, and she couldn’t reach it. She lay on the floor for (as near as we can tell) about 6 hours before anyone came to check on her. Can you imagine how that felt to Erin and I, both of us asleep and cozy in our beds just a few minutes away while she was cold and uncomfortable for 6 hours? I almost lost my mind when I found out about that.
  • The staff’s response to the call button is hit-or-miss. When they were leaving one evening early this week, my parents (who are in town to help us fix this disaster) saw six call-lights on in the hall where my grandma’s room is, and no staff in the hall, in any of the rooms, or even at the nurse’s station Sometimes, if she presses the call-light because she needs help getting to the bathroom, no one comes and she is forced to soil herself. How’s that for some slam-dunk end-of-life dignity preservation?
  • The staff scold and nag. They bug her endlessly to eat more (more on that in a minute), walk more (which she’s not supposed to do without help, which is not readily available), come out of her room more, blah blah blah. They wake her up in the morning by throwing on the lights and tossing clothes at her, like she’s in fucking drug rehab or prison or something, instead of an elderly adult who has reached a stage of life during which she needs more help than before.
  • Her weight is very low, no doubt about that. It’s hovered in the low to mid 80s for several years. When she was admitted to the health care unit, they wrote down her weight as 71 pounds. She hasn’t had a moment’s peace about that since she got there – eat eat eat! (They harp on it constantly with us, too.) Honestly, does anyone respond well to nagging? Or there’s the scolding – some actually cluck their tongues at her…tsk tsk tsk, Marjery, you didn’t eat enough! Are they trying to make her afraid that she’ll be punished if she doesn’t eat? Also, that 71 pounds? Complete bullshit. When they weighed her earlier this week, she was 88 pounds and someone changed the chart so that the last weight was 76 pounds (still wrong, but a little less wrong) instead of admitting that the scale was mis-calibrated. I am all joyful at the prospect of reporting chart falsification to the state licensing authority.

That’s the tip of the iceberg, but I’m sure you get the idea.

My parents and I arrived at The Montebello last night while my grandma was eating dinner. That dining room is so unbearably, stiflingly hot I almost can’t bear to be in there, but the chairs are comfortable and the coffee is surprisingly un-terrible. We chatted and she complained again about the constant comings-and-goings in her room, in particular someone she called “some kind of manager” who had been in her room for many hours. When we walked over to her room, we found a paper titled “reminders,” which was more nagging in written form: eat more, exercise more, press the call button if you need help.

Bear in mind, we have not only complained about these things amongst ourselves. We’ve talked to quite a few people, both over the phone (my parents) and in person (Erin and I), making it very clear that she is not to be told to eat or exercise (Erin and I can, surprisingly, always get her to eat and exercise. I suspect this has something to do with the fact that we are nice to her.), not to be bothered with a bunch of therapies, and above all, not to be scolded. Basically, we want them to provide for her safety (which they are not capable of doing), administer her medications (which are often late), and otherwise leave her the hell alone and let us, her family, worry about the rest. Again and again, they don’t listen.

Oh, and by the way, none of this would be OK no matter the cost, but this place costs a shit load of money.

My mom took that nagging, scolding piece of blue paper down to the nurse’s station and asked which manager wrote it, and the nurse said, hey, you’re in luck, he’s still here! So she called him, and he came, and wow what a bad idea. For the sake of the story, I’ll call the man by his first initial, A. It pains me not to use his real name, but I’d like to walk away from all this knowing that I took the high road.

First, he didn’t want to talk to us for fear that he would violate HIPAA. My mom asked my grandma, “Margery, is it OK with you if he discusses your medical records with us?” which, as a hospice nurse for many years, my mom knows is entirely legal, but A. has apparently not sought to trouble himself with such esoteric and useless information. After all, he only deals with HIPAA a few times a day. Why clutter up the old nut, huh? He claims he can only discuss health information with her power of attorney, who is my dad, so my folks head upstairs to my grandma’s apartment to find the POA paperwork.

While they were gone, I determined that A. was not our guy. He wasn’t a manager at all but a cognitive therapist with no power at all. He’s just an ass who doesn’t know that scolding an adult woman is a bad idea, and that messing with one of the Joneses is a worse one. My family (speaking here of my folks and sister) does not, in general, get along well and is not close, but mess with one of us, especially one of us who is helpless, and you’ll be wanting to get the hell out of the way.

A. begins shuffling through the POA paperwork, actually reading it, and that was perplexing and frustrating (he was a hemming and hawing kind of guy, anyway), and I tried to tell my parents that A. was not the guy we wanted, and I snapped at A. that it was a basic POA and let’s move on, and my mom was being abrasive and then my dad got so angry he yelled at A. and had to leave the room. (If you have the feeling that I am sliding past a few things here, you are correct, but remember that I once confirmed that, while I highly value honest communication, there are lines over which I hope not to step.)

You know what it all reminds me of? It reminds me of trying like hell to get help for Carter and hitting one brick wall after another. It reminds me of being in the hospital after surgery, delirious from pain, and being told to stop crying. I need to know: where is the compassion? What has happened to our culture that we treat young, sick, elderly, disabled, or otherwise in-need people so badly? (I actually know the answer to this question and it makes me boil: $$$) Somehow, leaving an 86 year old woman on the floor, shivering, for 6 hours is OK. The staff were all very sorry, but really? If they actually gave a shit, it wouldn’t have happened. They would have made their rounds and helped her back to bed long before dawn. (I suspect they skip nighttime rounds until it’s almost time for day shift to come on.). If the people who earn a profit from The Montebello had any compassion, they would hire more staff and pay more to get better qualified people. Profit is fine with me, but profit at the expense of the comfort and safety of people? No. No no no.

By then it was plenty obvious that the problems were not things that we could solve with more phone calls and meetings and as A. blah blah blah’d in the background, my mom and I mouthed at each other that we were going to move her. We finally managed to usher A. out of the room, thank goodness, because I was just about to stand up and flat-out tell him to leave. Some people do not know how to read social cues (and I was doing everything but flashing a giant “go away” sign at him), and how that kind of person ended up in that job is a mystery to me.

I can’t help thinking, too, that if a family as well educated as mine, with as many resources as we have, cannot access good care, what the hell is happening to the lower-middle-class, working-class, and poor when they reach the age at which they need a great deal of care? I shudder to think of it. Worse, my grandma has the four of us, plus Brian and my sister’s partner, caring about her and actively advocating for the best care. What is happening to the people who are alone? Is living to an old age a prison sentence? What sin did she commit that she deserves this?

I realize this is a very long, ranty post and I’m grateful that you read this far. Two anecdotes so you’ll know the amazing Margery Mae Jones a little better, and then I’ll be finished.

When we got her moved into her private room down in the health care unit, there was a tiny TV that she couldn’t see, but her giant tube TV wouldn’t fit. My sister called my dad who told her to go buy the largest flat-screen TV that would fit into the available space. Off she went to Costco and I arrived as Erin, her partner, and a friend of theirs were getting it out of the box. They lifted this behemoth of a TV onto the vanity and my grandma said, “Now that’s what I’m talking about!”

Last night, describing her many hours with A. and all his constant nagging and scolding, she said, “It gets a little old after the first hour or so.”

I inherited many things from her, but the smart ass? That’s my favorite.

The Little Guys Go to School

For the first time ever, Carter’s hallucinations caught the attention of his teachers and fellow students. Typically, two things happen to prevent this. First, the more actively occupied he is in some specific activity, the less likely he is to hallucinate. At school, where he is busy, the little guys don’t bother him much. Second, even when he does hallucinate at school, he’s savvy enough to keep it under wraps. This means an explosion of anxiety when he comes home, but it’s a price he’s willing to pay.

Today, though, they got the best of him and one of his teacher noticed that Carter wouldn’t look into her face. He seemed, in fact, to be ogling her breasts.

When she asked him what was going on, he told her his brain was going too fast and the little guys wouldn’t leave him alone. They were in front of the teacher, on her chest and shoulders and neck, shooting at him. When I got to the school to talk to him, he said they were on me.  When I asked him if I could brush them off he said, “They don’t care what you do! They go where they want!”

Ask a stupid question…

I cannot hurt the little guys. That piece of my reality? It carves little holes in me, like being stabbed to death by a killer armed with a weapon no bigger than a toothpick. Relentless and stealthy, the illness constantly reminds me that it is bigger than me, but more interested in playing with us than with outright destruction.

It’s like a bully, but invisible, and it does its damage by proxy.

Fucking fucker has a hold of my baby and I would really like to smash its head into a brick wall. Too bad that head is my kid’s head.

Powerlessness is a bitch.

Allison asked in the comments how the teachers are handling it and I think the answer deserves space up here.

First, here’s some info about Carter’s school for the new folks.

His teachers handle it just about perfectly. Most importantly, they are very sensitive to him and know when something is “off” or unusual and seek to understand first.Our experience in the public school was that the teachers sought first to control, so discipline came before they even understood the problem. His teachers really listen to him. They also listen to me. We are truly collaborating to help Carter get the best possible education, and his teachers know that until he feels safe, he won’t learn. There is no cookie cutter at his school.

One of my favorite things is that they are quick to call me to discuss anything. At the public school (and I don’t mean to castigate public schools in general, and certainly not teachers; this is the experience we had with one school), I requested, then insisted, then begged them to call me, to listen to me about Carter’s specific needs, but that was never honored and Carter suffered for it.

Have I talked them up enough? I could go on all day. If you ever wonder how in the world I drop off my sniffling, terrified, psychotic little boy on his difficult mornings (not the worst mornings, but we haven’t had one of those for quite awhile), this is why: he is with people who care about him. What a gift.

Blogger Ninja

I have been mired in a slush of mucusful unpleasantness for almost two weeks now. It started with an ordinary cold, then spiraled up into a horrifying mess of hacking, choking, spitting foulness. Oh yes, it’s been a delight.

When I finally dragged myself and all my attendant putrefaction over to the urgent care two days ago, the universe saw fit to bestow upon me several gifts. First, the waiting room was EMPTY. Next, my doctor was a friend from church, which was nice because just in case the army of green horror-warriors in my head and chest finally rose up to choke me to death, I’d much rather the last face I see be that of someone I know and like rather than a stranger. The last gift? Codeine. It trims the edges off the misery and makes them all fuzzy.

Then, whaddya know? I got a blog award! Actually, I got the same award three times, which is triple the awesome, obviously. Thank you to Meagan at The Pretend Writer, Geninabug at My Beautiful 604, and Abby’s Mommy at 365 Days: 30+ Mommyhood!

This is what the award looks like. I’m not going to put it up yet. With NPS moving soon, I don’t want it to get damaged or broken so I’ll wait to put it up in the new digs.

A caveat: you see where it says “poems” on that award? Never gonna happen. I haven’t written a poem since my teenage angst phase and no force on heaven or earth would convince me to let any of those see the light of day. It makes me shudder to think of it.

There are rules for the award, of course:

  1. Thank the person who gave you the award.
  2. Share 7 things about yourself.
  3. Pass the award along to 15 bloggers who you have recently discovered and who you think are fantastic.

I have thanked them all, but here is a basket of virtual muffins because I am a very generous person.

It seems appropriate that the seven things have a theme, so I have chosen this:

The Seven Ways I Am a Ninja
  • I am The Folding Ninja. My towels are perfectly square, my stack of pillowcases never tips over, and my family’s underwear and t-shirt drawers look like the ones you’d find in a model home if they put clothes in the drawers in model homes which I don’t think they do but they should and they could totally hire me to arrange them. Also? I can’t tell top sheets from bottom sheets after I fold them. Brian bestowed upon me an honorary Ph.D. in Folding Sciences, which was obviously an extraordinary day that I will never forget.
  • I am The Bullshit Ninja, which I would be more proud of it weren’t so very common. Every person who had a 3.5 GPA or better as an undergraduate and majored in one of the social sciences, communications and journalism, English literature, or anything similar is, by definition, a Bullshit Ninja. (Oh, please. There are no exceptions and you know it. And anyway, bullshit skills are WAY more useful in life than knowing all about surplus transfer and the birth of capitalism, so it’s not like the time was wasted or anything.)
  • I am The Crock-Pot Ninja. It’s no big secret that I hate to cook. It’s not something I dislike or something that I don’t especially enjoy, but something I hate. Could it possibly be any more boring, standing around in the kitchen stirring, simmering, chopping, blah blah blah? No, it could not. The Crock-Pot, though, makes it all a little more bearable. Shove in some meat, jam some veggies or beans on top, pour in some water and seasonings, and 8 hours later there’s a meal that doesn’t make anyone vomit. Hooray!
  • I am The Sympathy Ninja. OK, this is one that actually matters and is, in fact, one of my favorite things about myself: Struggling with angst, anxiety, grief, or any of the other painful feelings that are, unfortunately, a part of life? I will listen, make all the right sympathetic noises, and most of all, I will actually give a shit. Also? No advice unless you want some, and maybe not even then.
  • I am The Nap Ninja, which is where the whole “Adrienne is a ninja” thing started. Years ago (75 or 80, at least), when I was very young and teaching preschool, I was known as the one teacher who could get any group of kids to take their naps. Eventually, I taught workshops and trained other teachers and I always loved the nickname, Nap Ninja. Then Carter came along and blew apart all my nap cred, but I am now reclaiming my status because really? He’s just one kid among hundreds.
  • I am The Appliance Repair Ninja. I have repaired washing machines, dryers, a refrigerator, a water heater, two evaporative coolers, garbage disposals, vacuum cleaners, and a treadmill. When I am engaged in appliance repair there is abundant vehement cussing which does not in any way reduce my status as The Appliance Repair Ninja because when I am done? The damn thing works.
  • I am The Deciding Ninja. You know how annoying it is when you’re part of a group of people who are trying to make a collective decision? Someone says, “Hey, let’s go to dinner!” And someone else says, “Good idea! Where should we go?” The first person says, “I don’t know. What sounds good to everyone?” And then there are a dozen exchanges about how nobody cares because no one wants to be the one who chooses a restaurant that someone else doesn’t like, or people are afraid of seeming bossy, or something. You know how that goes? That annoys me so much that the annoyance itself crawls right up my spine and into my skull and niggles there like a nest of noisy baby birds. I’m the one who says, “Great! Let’s all go to XYZ Restaurant. Meet you there!” Then I get in my car and drive away and there’s really nothing to do but follow me. I’m pretty sure there are a few people who hate me for this, but more people are probably secretly relieved, so it’s a wash.

Now I’m supposed to award the award to 15 other award-worthy bloggers. I’m going to focus on blogs by parents raising children with mental illness. Please support these bloggers! They are living challenging lives, raising their kids with behavioral and emotional differences and some words of love and support will mean a lot. The envelope please…

Long Summer

I got this blog award AGAIN! I’m quadruple awesome! Go visit Brandee at Chill Mama Chill to help her out. No, seriously. She’s apparently living in fear of the zombie apocalypse. That’s silly because obviously the vampires will come first and kill us all before the zombies even get started.

Apologia

If we knew each other’s secrets, what comforts we should find.
~John Churton Collins

I chose that quote as a tag line for my blog not because it’s pretty (It IS, but there are prettier ones.), but because it’s what I believe and the reason I write. I believe in the power of truth. I also believe in the power of Truth, but that’s not what we’re concerned with here, not the Truth of religion and philosophy, but the truth in ordinary stories told by ordinary people. Speaking of that with which we are concerned, forget about facts.

Truth ≠ Facts

We’ll come back to that.

Let’s start with the power of bullshit. Not the “How are you?” “I’m fine, thanks” pleasantries of daily life. If we dropped all of those and got honest every time we bumped into someone we knew or were face-to-face with a bank teller, the world would grind to a halt. There is such a thing as an overshare. We’ll come back to that, too. (Come back to it with respect to the written word. Across the counter from your bank teller? You’re on your own.)

No, by bullshit I mean the protective armor that we wear to protect our deep wounds, the kind of armor that is so impenetrable that the people around us have no idea there’s anything under our surfaces but sunshine and fairy dust. That bullshit isolates every one of us until we’re no more connected to each other than the rows of canned vegetables on the grocery store shelves. We all have mushy, salty, half-healed (or mostly healed, or not-at-all healed) wounds inside, but damned if we’ll show them to the world.

So we all feel unique. And uniqueness is utterly, terrifyingly lonely.

*          *          *          *          *

When the issue of Brain, Child Magazine that had my story, “Love with Teeth” in it came out, I expected to get a few letters of understanding, a great many messages of pity, and a smattering of hate mail (because you don’t use the words “regret” and “hate” in reference to your own baby without ruffling a few feathers). Instead, starting two weeks before I even laid eyes on the magazine, the messages flowed in like water:

“Thank you for putting words to what I was feeling.”

“I can’t believe I’m not the only one!”

“I thought I was a bad mother. Thank God someone else felt the same way I did.”

Number of haters who wrote to me: zero. Number of “oh, you poor, poor thing” messages: zero. Number of supportive, understanding, thank-God-someone-told-my-truth letters: dozens and dozens.

(We’ll just skip right past the number of advice-giving letters I received. That part makes me weary.)

Many of the parents who wrote to me or came to this blog because of that article still read and comment because telling the truth creates communities and builds relationships. Storytelling creates a bond whereby we are not connected by thoughts but by feelings, not by brain but by blood and bone. Truth is the heat and the texture in any relationship, the thing that draws us back to others again and again, even though it’s much safer to hide inside our armor.

I was so scared of the response I might get to that article, when it was time to submit it Brian had to press the “send” button. I couldn’t do it. In spite of what I wrote about the parents’ groups and the sharing being so healing, I still felt alone. I felt unique when I wrote The Lessons My Bullies Taught Me, too, and was again surprised by an outpouring of “Hey, me too!” messages. Apparently, this uniqueness thing is my curse. I am grateful to have such abundant evidence that I’m mistaken.

*          *          *          *          *

“But I’m an honest person! I stick to the facts; I never lie!”

Yeah, well, when it comes to storytelling, all the facts are in the eye of the beholder and in the words of the storyteller.

This is not to say that it’s OK to bend a story to one’s own purpose by deliberately misrepresenting events. You won’t catch me defending James Frey. But any trial lawyer will tell you that eyewitness testimony is notoriously inaccurate because memory is malleable. We look at the world through lenses created by our experiences and ideas and inborn personalities. What is salient to me might be unimportant and therefore entirely overlooked by you.

This is a concept with which every writer of creative nonfiction must grapple. The truth I tell is only my truth and no one else’s. I take pains to get my facts straight (and to make it clear when I know the facts may be inaccurate), but ultimately I am a human being, not a computer. Objectivity is impossible.

Just because a story is inaccurate does not mean that it’s untrue.

Just because a story is accurate does not mean that it’s true.

(It’s also best to have this concept firmly and confidently embedded in one’s psyche before sharing stories about one’s life with the other people who were there. Otherwise? Big, big mess. HUGE mess.)

Objectivity doesn’t draw us back for more. For all the value our culture puts on “facts” (called truth, but I hope I’ve made my case that, though related, they aren’t the same thing at all), and as important as those facts may be in some circumstances, they’re not what we really seek. Would you read this blog if I wrote the facts? “Carter woke at 6:48 this morning. He spoke of his fear about the school day in a whiny voice. He is nauseous due to constipation so I helped him insert a suppository.” I mean, who gives a shit about something as mundane as a bunch of facts?

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But what about the internet overshare? The references to memoir as “navel contemplation” or worse? To hear the media discuss it, you’d think this was a scourge on the face of our culture, a destructive force akin to fascism. Some seem to view the telling of personal stories as the ultimate in self-indulgence.

Yes, there are lines, but the beauty of the written word (and, to some extent, face-to-face communications) is that we get to choose the limits for ourselves, both as writers and readers. I chose to share about giving my grandmother a manual disimpaction because I think it’s profoundly illustrative of how I think about and experience love. It’s gross, yes, but there is a larger meaning, a purpose. I didn’t share the gory details, but if I saw a good reason to do that, I’d be willing. And if you were reading that and felt your stomach doing flip flops and thought to yourself, “I don’t even care what her point is; this is disgusting and I’m never coming back here again!”, you can leave. And if you choose to write a blog post about how the internet overshare is ruining the world, you can do that, too.

(For the record, I am not going to discuss in any way, ever, my positions on pornography and hate speech. I’ll just state that my opinions about those two things are different from what I wrote above and leave it at that.)

I suggest that the naysayers have never felt horribly alone with an experience or feeling and then discovered the joy of discovering that they are not alone at all. If no one takes that step of putting the story out into the world, how will any of us ever know that we are not isolated and adrift?

The way one conveys other people in writing is always sticky and I’ll refer you to Lee Gutkind and the other masters of the genre for deeper discussion. Ultimately, every storyteller (journalist, memoirist, blogger, or back fence gossiper) must make an ethical decision about how much of other people’s stories to tell. We can’t tell our own stories without telling bits and parts of other people’s stories, but be clear: the truth belongs to the storyteller. When I write about Carter (or Brian or my parents or anyone else), I’m writing about how I see, understand, feel about, and relate to Carter, and reveal infinitely more about myself than him in the process.

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This is my apologia. My purpose in every word is lay down is to tell my truth, and I always do it with a little prayer that you will share some of yours. The facts are only a framework, and a mushy one at that. My heartache over raising a little boy with emotional and developmental difficulties might speak to your pain about a sister who was born with spina bifida. The funny in my day might help you see the funny in yours. I eviscerate myself in public because the truth that spills out of me is the only real power I own.

***A late-night Twitter conversation with two amazing women inspired this post. Nichole’s blog is In These Small Moments and Kris (who named her blog for the very concept I’ve written about here) blogs at Pretty All True. Go now and soak up some of their bloggish fabulosity.

Crisis Poltergeist

I am awesome in a crisis. I mean, stellar. I act fast and think faster. Here, I’ll show you:

On a cold morning in the fall of 2006, just after Carter turned 4, I put him in the shower and washed him. When he was clean, I wrapped him in a towel and set him on the bed before I got in myself. I heard him cough several times and thought he would need a nebulizer treatment soon, so I rushed through my soaping and rinsing. As I was finishing up, Carter came into the bathroom, clutching at his chest, unable to speak, blue around his eyes and lips, tears streaming down his face.

Before that day, Carter’s asthma had been little more than a minor annoyance. His asthma flared when he had respiratory viruses or his environmental allergies were at their worst, but never anything like this. We had never had an emergency.

So I got out of the shower and sprang into action. Keep in mind, I was completely naked and dripping wet. I ran down the hall to get the nebulizer (I remember blowing the dust off of it; it had been that long since we’d used it), put the medicine in the cup, turned the machine on, and put the mask over Carter’s face. In his panic, Carter pulled the curtains off the window above the loveseat in our bedroom. I called 911 on our land line and gave the 911 operator concise directions to our house while repeatedly putting the mask back on Carter’s face and speaking to him in soothing tones. He couldn’t breathe, so of course he didn’t want something over his face. I used my cell phone to call Brian at work. I had the 911 operator in my right ear, Brian in my left, and was speaking low and calm to keep Carter from panicking.

When I was done talking to the 911 operator, I needed to unlock the front door so the paramedics could get in. I couldn’t leave Carter alone, of course, so I unplugged the nebulizer, scooped up Carter and the machine, and went down the hall. By this time, Carter was wearing underpants and I was wearing underpants, a bra, and my bathrobe. I have no memory of putting anything at all on either one of us.

By the time the paramedics arrived, Carter was extremely pale but no longer blue around his eyes and lips, and was no longer using his auxiliary muscles to breathe. We went to the hospital and after a few hours of continuous albuterol he was fine to go home.

Carter was, of course, very frightened by this incident. He told me the story of that day over and over again in the weeks that followed as he tried to make sense of the event. I listened to him describing the event to his preschool teacher and was amazed when he said, “I was really scared but Mommy wasn’t scared at all so I thought I would be OK.” Yeah, we’ll be coming back to that whole “Mommy wasn’t scared” business.

Not quite convinced? Here’s another one (of many; life with Carter has brought many, many crises) from just a few months ago.

Carter and I left his therapist’s office on a Thursday afternoon. He was not particularly symptomatic or volatile at that time so I was not nearly as on my guard as I should have been. I should always be alert to a potential crisis, but it’s virtually impossible to keep oneself constantly at a high level of readiness. I know that people do that (soldiers, for example), but I don’t have any idea how they survive.

We left the therapist’s office and I knew that Carter was mad. I was hoping to get home fast and avoid a full-blown rage. We pulled into rush hour traffic on the freeway that runs through town. We were in the inside lane going 65 mph, with 4 lanes of traffic between our car and the shoulder, when Carter decided that he was furious and was going to jump out of the car. He was in the backseat on the passenger side. By the time he announced his intention, he had unbuckled and was reaching for the door handle. I held onto the wheel with my left hand, reached into the backseat with my right and grabbed a big handful of Carter’s shirt. I said, low and firm, “I will not let you do that.” I  had pulled all the way over to the far right lane and was preparing to pull onto the shoulder when Carter got back in his booster seat and re-buckled his seatbelt.

Before you congratulate me on how well I handled those emergencies, you need to know that it was not me. Really. I could hear me in the background of my mind, screaming and shrieking and in a complete fucking panic.  When I picked up the phone after I put the neb mask on Carter, he pulled it away from his face and, unable to talk, whispered to me, “Call 911,” tears just streaming down his face. And I, tucked away in the back of my mind, inaudible to anyone but me, was screaming, “Oh my God, my baby, my baby! God, don’t let my baby die!”, and in the meantime, the not-me that was on the outside was handling everything, calm and firm and efficient and seriously weird.

Whoever this person is, my crisis poltergeist, I love her. I assume that she is made entirely of adrenaline. She shows up in the situations that I cannot handle – the life-and-death scenarios I described above and in many other, less serious moments when I need to handle something without emotion. And it’s not just me, either. You almost certainly have one, too. It’s implanted by God or evolution or Allah or (in the case of us unusually liberal-thinking Christians) by God through evolution.

However, I have a bone to pick with my crisis poltergeist: she doesn’t show up when Carter’s anxiety gets out of control. She’s with me during his rages and when he’s acutely manic; she’s with me when he’s in a mixed state and everyone, everything, and every dog around him is in danger; she’s with me when he’s suicidal. She shows up at all those times, but when Carter is panicking she abandons me entirely.

WHY does she not think that Carter’s anxiety is worthy of her presence? For some reason, I have a very hard time not participating in his fear. I want to pick him up and cuddle him and make a big fuss. This morning he was screaming and howling over going to school (the school he loves, but this isn’t a rational anxiety), terrified to get in the car, hyperventilating, and saying over and over again, “Don’t make me go Mommy, PLEASE! I can’t do it, Mommy! I can’t go! I’m too scared!” Every cell in my body screams for me to keep him home, but all that would do is communicate the message to him that yes, your fear is based on real things; you CAN’T handle it. Not the message I want to convey. But the crisis poltergeist doesn’t come take over and I’m stuck, all my feelings hovering right behind my face and nothing to hold them back but me. Sad, upset, almost-as-scared-as-Carter me.

I did my best. I got him to school; he cried from home right into his classroom, and I left, in tears myself. Where the hell was my crisis poltergeist? Having drinks on the beach in Mexico, I think, because she was obviously not concerned with us. I did the grocery shopping and struggled through my day, not so much worried about him (I knew his teachers and friends would help him.) as much as distressed and upset by the morning. I was a very anxious child (probably part of the reason that his fear is so upsetting to me now), but he takes it to a whole new level. It’s fundamental; as parents we want to protect our children, and my own terrified child communicates to some ancient part of my brain, emergency! Staying calm and matter-of-fact in spite of my reptilian brain screeching at me to do something! is not an easy task.

Amazingly, the Carter I picked up from school was entirely different from the boy I dropped off this morning. He beamed at me, “Mom, I’m so proud of myself! I was super scared this morning, but I did it! I stayed at school all day!” We drove for a few minutes, then quieter, he said, “Mom, I love you so much. You’re always there if I need to cry or something. I’m glad you’re my mom and Dad is my dad.”

We don’t always get a happy ending like today’s, so we’re soaking this one in and celebrating Carter’s success.

There is no experience more wonderful for me than to see my children feel proud of themselves. Hooray, Carter!

Welcome to Chemistry One-Oh-Twilight-Banana

I’ve been wanting to write an update about Carter, but whenever such an update involves lots of discussion of medications I hesitate. Why? Because psychiatric medications for children is an extremely controversial issue and I have been attacked (verbally and online) and watched friends endure attacks. Most recently, Meg over at Raising Bipolar drew fire from a vocal group of anti-psychiatry activists and sometimes I feel like, if I write about meds, I’m leading with my chin.

On the other hand, why do I write about Carter? Why do I tell the stories of my family’s struggle and pain? Lots of reasons, and one is because I want to put a face on the hysterical media coverage about parents “drugging” their kids, to show that we are normal families in extraordinary circumstances, just like families with children who have cancer or diabetes. I want people, as many people as possible, to know that responsible, concerned parents have kids who are mentally ill, and some of us choose medicine as one of the ways that we help our kids.

So, all that said, I’m going to try (really, really try) to stop justifying the decisions that Brian and I make with regards to medicines and therapies for Carter. I want to be a woman and mother who has the courage of her convictions, and so maybe, maybe, if I move forward into the world acting as if I am that woman, it will eventually be true.

So.

Two months ago, we knew that risperidone (Risperdal) was not as effective as we’d hoped it would be for moderating Carter’s mood instability and rage so we switched to one of the newer atypical antipsychotics, quetiapine (Seroquel). It worked great, too: his moods were adequately stabilized, he wasn’t as ravenously hungry as on the risperidone, and he even enjoyed a significant decrease in anxiety.

But.

Have you ever been around a hyperactive kid? I’m not talking about an active kid, but one with genuine hyperactivity, where he or she honestly can’t stop moving climbing running talking spinning yelling. Think of that hyperactive kid, then put her or him in a room with a dozen other kids who are also very hyper (in your mind, for goodness’ sake; we don’t want to create a cosmic event by doing this in reality). Now melt them all into one child, add a dash of red chili powder, and wind him up tight. That’s what quetiapine did to Carter. Since most people who take quetiapine find it extremely sedating, this was more than a little surprising.

Carter was experiencing a side effect called akathisia, an indescribably awful feeling of restlessness. It’s typically accompanied by feelings of acute anxiety and dysphoria, but Carter didn’t have that which probably explains why it took us as long as it did to identify it. During the weeks he was on quetiapine, Carter was shockingly destructive (not because of anger but because he could not slow his body down), required more sleep meds than usual, and you know how people say, “I can’t take you anywhere!”? I actually couldn’t take him anywhere. I was afraid to take him to see Grammy for fear he’d break her, and I couldn’t take him to stores because there’s no way I can afford to pay for all the things he might have broken.

In the meantime, Carter’s teachers greeted me at the end of every day looking like the proverbial deer in the headlights. Carter’s psychologist and behavioral management specialist were both stunned by his level of hyperactivity. It was breathtaking. Truly.

The next atypical antipsychotic in line after quetiapine is aripiprazole (Abilify), but that drug was out of consideration from the start. His significant akathisia from quetiapine, plus the fact that I had an akathasia reaction to Aripiprazole several years ago, meant that the likelihood of a similar reaction was high.

Does this sound like a complex, frustrating dance in which Carter, Carter’s illness, the meds, the psychiatrist, and Brian and I are engaged? That’s exactly how it feels.

We took Carter off the quetiapine and put him back on the risperidone. Since that drug in combination with oxcarbazepine (Trileptal), the mood stabilizer he’s been taking for about a year, has not been adequate, we needed to change to one that’s more robust. Enter lithium.

Sigh.

That’s about where we are now. Carter has been off quetiapine for nine days and he’s back to his typical level of hyperactivity, which right now seems downright sedate. He’s started the lithium, but we won’t start to wean from the oxcarbazepine until he reaches a therapeutic level of lithium in his blood. As much as we hate to have him on so many medications at one time, changing too many meds too fast creates a risk of him becoming suddenly unstable. We are constantly trying to minimize the risks of these high-powered medicines while also minimizing the risks of this high-powered illness.

Even though lithium is one of the oldest and most effective of psychiatric medications, it’s not usually a first-line drug. It requires close monitoring (all psychiatric medications do, of course; lithium requires extra) because too little lithium is useless, and too much is very dangerous. People being treated with lithium require regular blood tests, something that doesn’t especially impress Carter. He had his first lithium level drawn this morning and while he did great, it’s not something he and I look forward to doing every few months for the foreseeable future. Of course, I’ll do whatever I need to do to keep him safe (including getting him some EMLA cream to make the draws easier), but I don’t have to like it! We also have to be careful to keep him well hydrated as dehydration increases lithium concentration and can cause lithium toxicity.

I made it through college chemistry by the skin of my teeth, which just goes to show that you can learn anything if you need the knowledge bad enough. Here’s hoping this is the last med change Carter has to endure for awhile. He deserves a nice, long period of stability. I want nothing, absolutely nothing in the whole world as much as I want that.

This Just In: Another Repetitious Redundancy Revealed

Brian pointed this one out to me and I must reveal it: an official repetitious redundancy. In the Miranda Warning (the statement of rights that is read to every person who is arrested at the time of said arrest here in the US), it says, “Anything you say can be used against you in a court of law.”

Thank goodness the Miranda Warning cleared that up. Can you imagine if the criminals were all running around and assuming that they’d be tried in a court of tennis?

Some Important PSAs

Heads up: I’m going to tell three upsetting stories. I don’t want to surprise anyone.

I’m not an alarmist. (Which is a silly thing to say; no one things they’re an alarmist, right? We all believe ourselves to be realists.) However, there are so many hazards in daily life, and a great many simple habits we can cultivate to keep ourselves and our families safe. It’s not alarmist to buckle one’s seatbelt in the car. PSA #1 falls into that “simple habit” category.

I’m a kind and loving person. (Also a silly thing to say; I know some people say they don’t like people, but it’s a rare person who truly doesn’t give a shit about anyone.) Sometimes, though, helping someone else can put the helper and his or her family in harm’s way. That should never, ever mean that we choose not to help (I don’t want to live in that kind of world.), only that we must choose ways to help that protect everyone. PSA #2 is about protecting oneself while helping another.

I’m a smart person. (Yeah, yeah, I know. Have you ever met anyone who doesn’t believe that they’re one of the world’s smartest people in some way or another?) Our information saturated culture, though, makes it very difficult to find the information that we need. And sometimes the information that product manufacturers choose to share with us is incomplete. PSA #3 is about a piece of information that can save lives.

PSA #1

A dozen years ago, my friend’s little girl had open-heart surgery to repair a congenital defect. In the week she spent in the pediatric ICU, I got to know the mother of Alan,* the 14 month old baby in the next bed. He had a tracheostomy in place and his doctor kept him heavily sedated due to a near-drowning incident. The body of water in which he nearly drowned? The family dog’s water bowl.

It does seem like a nearly impossible feat, doesn’t it? Who imagines that anyone, even a baby, could drown in a dog’s water dish? Alan was playing, pretending to be the dog, and was on his hands and knees, lapping at the water with his tongue. The floor around the water bowl was wet and slick. His hands slipped, he went face down into the bowl, and couldn’t get traction to get himself back out. If he’d been an older child or an adult in a similar predicament, he might have saved himself by turning over or upending the bowl with the side of his face, but toddlers don’t have problem solving skills like that.

Go put your pet’s water bowls someplace where your pets can get them and your little children can’t. I’m sure that’s a very rare thing that happened to Alan, but obviously it’s possible.

I’m afraid I can’t tell you the rest of the story; my friend’s little girl was released from the hospital and we never found out what happened to Alan.

PSA #2

Marian and I were best friends in middle and high school, and Tracey was Marian’s younger sister. I remember Tracey as sweet, cute, and very annoying…pretty much just like my own younger sister.

In 2003, Tracey was living in North Carolina with her husband and their two young children. When Tracey’s friend Holly expressed to her that her husband hurt her and she wanted to leave him, Tracey offered her a place to stay in her own home.

They arrived at Tracey’s house late one evening after their shift at the restaurant where they were both waitresses. They were out of the car by the time they saw Holly’s husband, Michael, armed with a steel shovel that he’d taken from Tracey’s garage. Tracey ran for the house but Michael hit her with the shovel before she got there. He hit her several more times before he forced his wife into his car and left and left with her. Tracey died under her own bedroom window, just feet from her sleeping husband and children. More of Tracey’s story is here.

Domestic violence is such a dark and terrible thing. I am blessed beyond measure to have never in my life lived in a family that was plagued by physical violence. I want every person on planet earth to experience the safety that I live with, knowing that the people who love me, no matter how angry they may be, will not hurt me in that way.

If you know someone whose partner (or any other person of any relationship) hurts her (or him), find a way to help. Encourage, help, support, love, and when she is ready to leave, help her get to a shelter. No, she (and her children if she has them) will not be as comfortable as she would be at your house, but you will ALL be safe. You can help her in a thousand ways, but only if you’re still alive.

PSA #3

Here’s the relationship: Brian’s brother’s wife has a sister named Lola. Several years ago, Lola’s little girl, Jenna, had the flu and she was miserable with a high fever. Lola gave her acetaminophen according to the instructions on the label and it kept the fever low enough to at least take the edge off of Jenna’s misery. Over the course of the flu, Jenna’s doctor saw her twice. On Monday, he diagnosed flu and told Lola that she should use acetaminophen to control the fever. On Thursday, he told Lola that Jenna had not developed bronchitis or pneumonia as she had suspected and that she should continue giving her acetaminophen for the fever. That night, Jenna went to the hospital by ambulance after she suddenly became non-responsive. Within a few hours of arriving at the hospital, she was dead due to liver failure. The ME identified the cause of death as acetaminophen overdose.

And that, technically, WAS the cause of death, and that’s how the media played the story. Unfortunately, not only did that wound the family (insult to injury, right?), but it gave a false impression that could put other children at risk. Lola gave her child the recommended dosage, never exceeded the maximum number of doses per day, and you know how the bottle says, “If symptoms persist longer than [x number of days] consult your physician”? Lola did that. Her physician advised her to continue giving Jenna the medicine.

Turns out, the max dose is only safe for a few days. (I am being deliberately vague here because I am not a physician, a pharmacist, or a medical professional of any kind, just a know-it-all blogger.) After those few days, the liver starts to struggle and in some cases, may fail entirely.

After Jenna died, Brian and I were scared about any and all over the counter (OTC) medications and I spoke to our pharmacist. Here are the suggestions he gave to me:**

  • Strike a balance with OTC pain relievers. Don’t let your kids suffer with pain or fever, but don’t medicate at the first sign of discomfort, either.
  • When you have questions or concerns about medications, address those questions not only to your doctor, but to your pharmacist. Pharmacists are a hugely underutilized resource and we put ourselves and our children at risk when we do not avail ourselves of their expertise. Pharmacists specialize only in medicines. They know virtually everything and what they don’t know, they know how to find out. Choose your pharmacist the same way you choose your other health care providers: carefully. Most of us don’t choose our doctors based solely on how close they are to home; we shouldn’t choose our pharmacists that way, either.
  • When you need to use OTC pain relievers for several days, alternate the active ingredients. Give acetaminophen, then four hours later give ibuprofen, etc. You’ll give much less than the maximum daily dose of either medicine and thereby reduce the risk of liver toxicity due to either one.

There’s more information on risks associated with acetaminophen use here.

Sad stories, I know, but the three families I wrote about want us all to learn what we can from their tragedies, so go forth and be careful. Use a condom, wear your seatbelt, find a great pharmacist, park in well lit areas, and remember to strike that all-important balance: always be cautious, never be fearful.

*I’m making up all the names except the ones in PSA #2.

**Check with your own healthcare providers if and when you have questions.