by Band Back Together | Oct 26, 2010 | Adult Survivors of Childhood Sexual Abuse, Anger, Bullying, Childhood Bullying, Childhood Fears, Guilt, How To Heal From Being Bullied, How To Help With Low Self-Esteem, Loneliness, Pediatric Depression, Psychological Manipulation, Self Loathing, Self-Esteem, Shame, Stress |
Right before Valentine’s Day, my orthopedist decided that I should be hospitalized for tests. I’d been having crippling low-back pain for several weeks and the rest, pain medicine, and muscle relaxants he’d prescribed were not making me feel any better. I spent a week in the hospital undergoing a variety of tests to rule out structural abnormalities, cancer, and any other problems that could be causing the pain. They never found anything. The ultimate diagnosis: acute stress. The year was 1983. I was eleven years old.
This is the story of me and my bullies. All these years later, a whole lifetime, and I’ve already used half a box of tissue preparing to write about it. I was just a little girl, deserving of love and protection, like every other child, but I didn’t know that. I thought I was different: unworthy, flawed, and fundamentally unlikeable. My bullies, and the adults who allowed their behavior to continue, taught me lessons that I’m still unlearning nearly 30 years later.
Full disclosure: I am changing names for obvious reasons. Also, emotional pain and time have worked together to make my memory pretty hazy. This is a true story to the absolute best of my ability.
When I showed up at Madison Middle School in August, 1982, I was scared. And while I think that probably every 6th grader at Madison was scared that day, I was unique in my level of terror. We’ll get back to the reasons for that later, but for now, just know that I was shaking in my summer sandals like there was a salivating tiger on my left and a tsunami wave rolling in on my right.
I went to my classes and listened to the rules. So many rules! Do you remember how it was, how they threatened you and swore that they wouldn’t help you no matter what, because for God’s sake you’re not babies anymore and if you think this is like elementary school then forget about it and do you have any idea what it’s like in the REAL WORLD?!? Well, do you? Rules for the bathroom. Rules for the lockers. Don’t be late. Don’t forget your book. Always have your paper, your pencil. Don’t chew gum, don’t talk, don’t run (but don’t be late!), don’t eat, don’t swear. Do your homework; no, not like that! Put your name here, the date there (write it out), the period number in that place. Use pencil, no always use pen, no never use pen. That’s the wrong paper! Did you write in your book? Put a cover on it!
Here’s what I heard: Shut up, sit down, and if I never have any reason to notice you, or even glance in your direction, then you’ll be just fine. Teachers have no niceness to share; being ignored is the best you can hope for.
I was all alone. The Albuquerque Public Schools have a different system now, whereby all kids from several elementary schools feed to one middle school, and then several middle schools feed one high school. Not so back then. My elementary school fed four middle schools, with just a tiny handful of us going from Zuni to Madison. There were no familiar faces around me; I was surrounded by strangers in every class. My family might as well have moved across the country over the summer.
There were seven class periods per day. My 6th period class was PE. I had kind of looked forward to “changing out” because it seemed grown-up, something that you saw in the movies. Obviously I had a warped sense of what’s glamorous! And thus we arrive at problem number 1, the first thing that my bullies found to target about me: no breasts. I mean none. Nada, zilch. I didn’t know it then (and would have been devastated if I had), but I was still a year away from any action at all in the puberty department. But to be honest, I might as well have been wearing a big ole’, flashing neon sign on my head that said Pick on me! I am your willing victim!
I always had a hard time making friends, had struggled socially from the very beginning. My parents like to tell the story of my first day at pre-school. There was a one-way mirror so parents could observe, and they were stunned by what they say: me, a little girl who would not stop chattering, ever, while at home, sitting quietly and observing the other children. Silent. I was always terrified in social situations, and so excruciatingly sensitive to every perceived slight, even at that young age, that I usually believed that everyone around me hated me.
As I moved through elementary school, every year the kids were a little less tolerant of difference, a little less willing to befriend, or at least leave alone, the shy, awkward girl in the corner. Complicating matters was the fact that I was very intelligent and had a huge vocabulary for a child my age. This was probably due to the fact that my parents were both well-educated and used their own wide knowledge of words when speaking to me. I used my big words and that, coupled with my shyness, earned me a reputation as “stuck up.” It’s laughable, now, that I was accused of being the very thing that I’m most NOT. All I wanted was some friends, some kids to talk to me and play with me at recess.
The most ridiculous piece of this particular part of the story is this: my second grade teacher told my parents that I would have more friends if they could make me stop using so many big words. True story, and a damn sad example of an “educator.”
I always managed to make a few friends, but never more than 2 or 3 at a time, and I was consistently a target of teasing by the girls in my grade. The worst bullying I endured while I was a student at Zuni happened when I was in 3rd grade. Two 5th grade girls started to mess with me on the bus every day on the way home from school. They spit in my hair, over and over, all the way home, to the point that I arrived home with saliva dripping onto my shoulders.
Gross, right? Here’s what’s grosser: the bus driver either didn’t notice or didn’t care, because she never said a word. Neither of my parents called or went to the school to insist that something be done, nor did they ever (not once) drive me home from school to spare me the torment. No other child on a bus jammed full of students ever tried to intervene. Only my little sister, in kindergarten at the time, tried to defend me.
I was in third grade in 1980, so 30 years ago now. I still remember the names of both those girls, can still feel the hot shame that nested behind my face when they taunted me and spat on me.
My elementary school experiences had primed the pump; I was more prepared for my middle school bullies than I was for middle school literature and science.
There were three of them: Kathy, Karen, and Tanya. I don’t know if they knew each other before 6th grade or if they fell together that year, but they joined forces and made me their common enemy. It was a campaign of terror that, while not unique to middle school girls, is certainly most common among them. Virtually all of it happened in the girls’ locker room, though they got away with plenty out in the open, during PE class. Our coach joined in just enough to make it clear that he wouldn’t be a source of support.
The details are lost to me. There was lots of name-calling. I know they snapped my bra strap plenty, after I begged my mom to buy me one so I could keep my non-breasts covered. They pulled my ponytail hard, so that my head snapped back and hurt my neck. Mostly, though, they relied on the name-calling and the taunting, and I almost never answered them. I just took it, because I believed it was mine to take.
By Halloween, I was in agony all day, every day, dreading 6th period. I cried every evening at the dinner table with the misery of it all, and my parents tried to be sympathetic. Eventually, though, they were annoyed, then angry, at my inability to resolve the situation. They encouraged me to fight back, to punch or kick or hurt the girls to make them stop. They sent me to a counselor in hopes that she could convince me to fight back. No luck. I was far, far too afraid of authority to do any such thing.
How afraid of authority was I? In three years of middle school, I was never (not ever, not even once) late to a class. I was in agony from a full-to-bursting bladder at least once a week, but I would not risk being late to class by using my 5 minute passing period to go to the bathroom. At Madison, the lockers are in long halls that are kept locked except before and after school and before and after lunch, so we had to make sure we had everything we needed as there was no running to a locker between classes. One time (ONE TIME) in 3 years of middle school, I forgot one of my books. (Funny how pain makes some memories fuzzy, and leaves some of them so sharp.) It was my English book, the class I had right after PE during 6th grade. I was shaking and sweating through 5th and 6th periods because of forgetting that book.
And my parents and my counselor wanted me to punch someone?
I went to the school counselor for help. She decided a session involving Kathy, Karen, Tanya, and I was in order, so that we could air all of our grievances. Clearly, the school counselor had a fundamental misunderstanding of the nature of the situation. She saw a conflict among peers, when in fact it was a victim/perpetrator situation. We sat in her office and the three girls told me all the things that disgusted them about me. (I don’t remember most of what was said, but I do recall that one of my facial expressions was a problem for them.) Thus emboldened by quasi-approval from a school authority figure, the girls re-doubled their efforts.
Sometime shortly after the New Year, my mom and I were at the grocery store when I turned to see Kathy standing next to her own mom’s grocery cart. She squinched up her eyes and pulled a disgusted, I-smell-something-nasty face. I yanked my mom’s sleeve and whispered, “That’s one of them, one of the girls from PE!”
We finished our shopping and when we got in the checkout line, my mom went to speak to Kathy’s mom. No big surprise here: the next day I caught hell. Karen and Tanya were furious that I got Kathy in trouble and tripled their harassment, stealing things from my locker and encouraging other kids in our PE class to join them in harassing me.
Eventually, the stress took its toll and I landed in the hospital. The back pain was so bad that I couldn’t sit or bend over. Except sometimes I could. The pain was not constant, and I have never admitted this to anyone, ever. I felt guilty about that for many years, but not anymore. I didn’t know how to communicate my anguish, didn’t know how to get the adults in my life to hear me, and letting them believe that the pain was more than it was was the only way I knew to get any relief. I missed two weeks of school and it was pure bliss, like taking off a 200 pound backpack I’d been staggering under for 6 long months.
Note to parents: if your child is so stressed out that he or she is in the hospital to rule out spinal cancer, something is deeply wrong.
I walked into the girls’ locker room on my first day back to school and Kathy turned to Karen and Tanya and, sneer on her face and disgust thick in her voice, said, “Look who’s back.”
I made it to the end of 6th grade. I faked sick a few times, though I never refused to go to school. My parents did not express any sympathy or take any action on my behalf. Once, my dad said to me, “If this is the way you act at school, it’s no wonder you don’t have any friends.” My mom got angry at the dinner table several times, saying, “Can’t we ever talk about anything other than you and your problems?”
And so, by the time winter became spring, I had learned my lessons, and I had learned them well.
What my bullies taught me:
I don’t matter. My suffering is not important.
I am socially unacceptable, worthy only of rejection.
I’m weak, a loser, destined to be a social bottom-feeder, or worse, absolutely alone.
The best I can hope for, in my relationships with others, is to be left alone.
I am a fundamentally unlikeable person.
What the adults taught me:
I’m unworthy of help.
To identify or talk about a problem is to whine or feel sorry for myself.
When I ask for help, I will not get it.
The way other people behave toward me, no matter how bad, is my fault.
I am a fundamentally unlikeable person.
I was never again bullied the way I was in 6th grade. There were some girls here and there, throughout 7th and 8th grades who taunted me, and I never had many friends, but that sort of systematic torment was over. But any social confidence I may have had (did I ever have any?) was shattered. Throughout the rest of middle-school, I went to the library during lunch rather than risk rejection in the cafeteria. Books, always my favorite escape, became even more important to me. I tried to hide, to blend into the background. I hated myself, hated everything about my life. I had increasingly frequent episodes of depression, but I had learned by then that there was no help, and so I just showed up and went through the motions until I could get back into my books, back into the quiet solitude of my bed.
High school was better. Much, much better, in fact. I never had any social confidence, didn’t make friends easily or feel comfortable with people, but I had some friends. Kathy, Karen, and Tanya all went to the same high school and, amazingly, I never had a class with any one of them. I saw them sometimes, in the commons or on the walk across campus, and the dominant feeling I had when that happened was fear. I hated myself for that fear, hated that I was still so weak, but I couldn’t shake it.
Since I’m eviscerating myself in public here, I’ll tell you the truth: it’s still my dominant feeling. When I am with people, no matter where I go (even online), I expect to be rejected. I assume that you will hate me, that you will seek to avoid me, that you hope I won’t bother you by trying to talk to you. Every expression of acceptance is a surprise to me. I want people to be nice to me, but I never expect it. I expect people to reject me; I hope they will leave me alone. Niceness doesn’t really factor into any of that.
Understand that I’m not laying any of my present emotional landscape at anyone’s feet except my own. They (the bullies and the adults who didn’t stop them) taught the lessons they taught; I chose which lessons to learn, which lessons to carry with me into my adult life. My struggle to let go of all of that is mine and mine alone. There are connections, of course. The lessons I learned helped me choose my first husband, an unkind and critical man who I believed was the only one who would ever want me. But ultimately, that choice was mine; the connections to my bullies are not causes.
I went about living my life. Sixth grade was a painful memory. In my early twenties, I thought about that year a lot and wished for the chance to do it again, to stand up for myself, to bring my adult strength to a child’s situation. But as my own children approached the age I was when I was abused by my classmates, my thinking changed.
I started to recognize that Kathy, Karen, and Tanya were little girls, too. They were so large in my memory, so much more powerful than I was, that they had become something other than children for me. They were just as young as I was, caught up in personal turmoil about which I know nothing. Why did they do what they did? I don’t know, but it seems pretty unlikely that they were bad kids whose parents didn’t care what they did. In fact, I’d guess that Karen and Tanya’s parents would have punished them for such behavior just like Kathy’s mom punished her. I think they were probably very nice girls from their parents’ perspectives. I think they would have been shocked to find out what their daughters were doing at school.
As I came, over several years, to this new perspective, my anger at the adults involved grew. How could they just let me suffer that way? And of course I know how, in a rational, removed sort of way. They didn’t know what to do; they didn’t know the breadth and depth of the problem. They’d been conditioned to believe that, unless there is physical aggression that leaves marks, the problem isn’t significant enough to warrant any real attention.
But past rational, past the adult-me who is raising children and sometimes making big mistakes and who understands that shit happens and you can’t always fix it, there is an eleven year old girl in a blind red rage. I was a little girl. The coach, my parents, the school counselor, they were adults. Their responsibility, first and foremost, before anything else, was to keep me safe. And they failed. They failed big.
In my adult life, I’ve had almost no contact with any of the people with whom I went to school. I didn’t go to any of our reunions, didn’t call or write, didn’t even exchange Christmas cards. Finally (finally!), as I moved deeper into my 30s, the pain of those years started to recede. Sending my eldest to 6th grade was indescribably gut-wrenching, but for the most part, I didn’t think about it much anymore. Although I’ve always been afraid that my children would bully or be bullied (I probably wouldn’t handle that very well.), they’ve been much more confident than I ever was. We still live in Albuquerque; my kids are students in the same school system in which I was educated, but things are different now. They take bullying more seriously.
Last year, I joined Facebook. While I was skipping sleep in that first week, hunting down old boyfriends and making sure my kids weren’t posting their phone numbers for all the world to see, I found all three of them: Kathy, Karen, and Tanya. For weeks, I thought about contacting them, telling them how much they had hurt me. I would see their names show up in comments to mutual friends and it was like a tiny stab. I turned it over in my mind, even starting, then discarding, a few messages.
Ultimately, I decided not to do it. If the first lesson my bullies taught me was “I don’t matter,” how bad would it hurt if the message I got back said, “I have no idea who you are. What the hell are you even talking about?” I knew that would hurt more than I could bear, so I gave up on the idea.
And then.
On March 24, the day before my birthday, a message from Kathy showed up in my Facebook inbox.
Gobsmacked.
I’m at a loss to describe what happened to me in that moment. I was sobbing and shaking before I finished the first sentence. How can a wound that old still be so tender? I can’t answer that, only tell you that it was.
Far from forgetting me, she remembered 6th grade often. These are her some of words:*
My oldest kiddo is ten and we just had his parent/teacher conference this past week. At every conference since he was in kindergarten, his teachers always comment about how accepting he is and how he goes out of his way to be kind and be a good friend to all of his fellow students. And while that is nice to hear about my child, it always makes me think of how I treated you and how for a very long time I have wanted to find a way to get in touch with you to tell you how sorry I am.
Not forgotten. NOT a person who doesn’t matter. Me, worthy of consideration. Me, worthy of the time it took to write a thoughtful, heartfelt apology.
I lay awake all night that night. I thought of nothing but Kathy, and 6th grade, and the other girls, Karen and Tanya, for several days. The letter turned my world inside out, brought me to my knees, and when the storm had passed, a Kathy-shaped piece of pain rose out of me and floated away, and in its place? A new friend. Kathy and I have exchanged more than a dozen messages since that first day and with every message, we’re a little more comfortable, a little less tentative and nervous. I giggle and joke and call it my Facebook miracle, except it’s not really a joke at all.
———-
Recently, bullying stories have been all over the news, stories of girls who ended their lives because of abusive treatment by their peers. For all the anguish I experienced during 6th grade, when I came home from school, the taunting and teasing stopped, completely, until I went back to school. Back then, we didn’t even have cordless phones and answering machines, much less internet and text messages. I can’t imagine I would have survived if Karen, Kathy, and Tanya had had 24/7 access to me.
I’ve long wondered why they did what they did, but even Kathy doesn’t know:
“For many years now, I have questioned why I treated you so horribly when we were in school together. And as much as I’ve thought about it and as much as I’ve tried to figure it out, honestly don’t know why. Maybe peer pressure of trying to fit in, maybe joining in with others so that they wouldn’t pick on me, or maybe I was just a horrible, horrible person. Maybe all of the above. But whatever the reason, it does not change the fact that I was wrong to treat you the way I did. I want you to know how very sorry I am. I know I caused you tremendous pain and suffering because of my actions. I want you to know that my apology is sincere and heartfelt. From the very bottom of my heart, I am so very sorry for the abusive way I treated you when we were in school.”
Parents, talk to your kids about bullying, because any child can be a bully. Any child can get caught in the swirling social morass of middle and high school. I don’t vilify my bullies anymore; we were all little girls. We were children who, lacking adequate supervision and guidance, found ourselves tangled in a situation that got too big for us. Adults should have saved us, and I do mean us, not me. I suffered from years of shame; Kathy suffered from years of guilt. (Perhaps Tanya and Karen have suffered, too, though I don’t know.) Adult intervention could have protected us all.
Know what your kids are doing at school, how they’re treating other children, and find out what their school’s bullying policies are. Find out if they follow those policies, how they are enforced, and what the grievance procedure is. If there isn’t a policy in place, or if the policy is inadequate, work with some other parents and pressure the school to change it.
And if your child is being bullied in school, do not wait, do not hesitate, do not be scared. Just make it stop. Find a way. I can’t tell you how to make it stop because every situation is different, but if you need the courage to confront the school, you email me and I will pep talk you to the moon. As parents, keeping our kids safe is job one. You can do it.
Because honestly? I would have been better off if my parents had done almost anything, up to and including letting me hang out at home and read books all year. Academically, I learned something between nothing and absolutely zero that year. How could I have learned? That’s like locking someone in the tiger pen at the zoo and insisting they write a 2,000 word discourse on surplus transfer and the birth of capitalism.
by Band Back Together | Oct 10, 2010 | Anger, Anxiety, Birth Defects, Birth Trauma, Encephalocele, Fear, Feelings, Generalized Anxiety Disorder Resources, Hope, How To Cope With Post-Traumatic Stress Disorder, Loneliness, Medical Mystery Tour, Neural Tube Defects, NICU, PICU, Post-Traumatic Stress Disorder, Sadness, Stress, Trauma |
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
I instinctively checked the monitors as I approached my daughter who was sprawled out, getting a sunbath underneath the warmer. Her stats were picture perfect, I noticed, breathing a little more easily, and I made my way slowly to her bedside where she was sleeping peacefully.
I slogged my soggy bottom from the wheelchair onto the rocker that had been shoved into her tiny NICU room; barely even a room, more like a broom closet. She was sandwiched in between two misbehaving (“misbehaving” means that their alarms were constantly blaring) babies who I could hear misbehaving.
Most of the NICU, I noted as I was wheeled past, was full of Feeders and Growers. That’s NICU slang for babies that were, for whatever reason, finishing their gestation outside of the womb. It”s always evoked a pleasant picture of a garden of freshly hatched babies. A Baby Garden.
Of the other babies that I could see cooking away merrily in their incubators, Amelia was the biggest, fattest, and likely the only full- term baby there.
According to her room placement, though, she was the most ill.
Hear my prayer, hear my prayer, hear my prayer, please God, hear my prayer.
My ass firmly planted now onto the chair (I’d had a traumatic vaginal birth mere hours before), I held Amelia’s lone sock as a talisman, hoping it would ward off the Bad News. I was preparing to nurse my daughter again, just waiting for our nurse to come and help me sort through the tangle of wires my daughter was attached to.
It was hard to believe only thirty or so minutes had passed since we’d heard “there’s something sinister on your daughter’s CT scan.”
Our–Amelia’s–nurse walked in and introduced herself to The Daver and I. I was openly weeping, holding onto Mimi’s sock and my iPhone – where the Pranksters live!- as a life preserver. The Daver was pale(r) and stalwart.
I handed off the box of Kleenex that had been pressed onto my lap as we left Mother/Baby and my daughter was brought back to me, hooked up to so many wires that she looked like an electrical outlet. The nurse stood there, kindly talking to us, but not revealing anything.
We still had no idea what was wrong with our daughter. A diagnosis would take weeks. Her life, as far as we knew, hung in the balance.
I begged the nurse to have the house neonatologist visit my daughter as the pediatric neurosurgeon was busily operating on someone’s head somewhere other than the NICU. It’s probably good I didn’t know where he was or I’d have stalked him down and dragged him to my daughter for a diagnosis.
The neonatologist – the one I’d met a lifetime ago in the delivery room, the guy who was always drinking a bottle of something – he came over to Amelia’s “room” and he told us that there was a “bright spot” on Amelia’s CT Scan. He didn’t mean diamonds.
I had no fucking clue what that meant and he didn’t follow it up with much, although I did see his lips move, I couldn’t understand his words.
Guess that’s panic for you.
After the doctor left, the nurse came back in to ask if we’d wanted to see the chaplain; rather to have Amelia meet the chaplain. A thousand times yes.
She was amazing. Just. Incredible. For the next year, it was her words, her warmth and compassion that I kept coming back to. She blessed my daughter. My daughter was blessed.
And she is so, so blessed.
We sat there in the NICU; just the three of us. I couldn’t tell you how long we just sat. Time in the ICU is timeless. 4 AM and 4PM are the same.
Soon enough, I had to go upstairs to change my undergarments and ready myself to see my boys. My sister-in-law was bringing my sons to visit, and I had to put on my Poker Face. Given the raw, chapped and bleeding state of my cheeks, was going to be damn near impossible.
Back in my room, I saw that I’d gotten some flowers and a basket from two of my Pranksters and it made me cry. Then again, I think the package of Saltines that had been ruthlessly thrown on the floor the night before might have made me cry. I wasn’t in a Good Place.
Alex and Ben came in a bit after I’d gotten cleaned up. I held Alex very, very close as Ben showed me some pictures he’d colored of Amelia. Ben knew his sister was sick but Alex (only 22 months old) had no idea what a “sister” was, let alone what being “sick” meant. I held them and faked normal until I got the call from the NICU. Time to nurse the baby.
Talk about being torn.
I cried as I said goodbye to my youngest son–my eldest just wanted to get home and I couldn’t find fault with that–and he cried and yowled “Mooommmmyyy” as he was led away to the elevators that would dump him back into the outside world.
By myself for the first time, I tearfully found my way back to the Secret Place, The Land of Tears. Never have I felt so sick to my stomach in my life. People stared sympathetically as I wept in the elevator, leaning against the walls for support.
I begged God to let her live, even if she was retarded and her IQ was 43 and had to live at home for the rest of her life, just please let my baby girl live. I didn’t care what was wrong with her so long as she made it out alive. I begged God to take me instead. I’d had 28 wonderful years on the planet already, and she was less than 24 hours old. Certainly, I’d give my life to save her in a moment.
Hear my prayer, hear my prayer, hear my prayer. Please God, hear my prayer.
After scrubbing the top 50 layers of skin from my arm and signing a reasonable facsimile of my name, I wobbled to her bedside. There she was, my girl. Perfect stats, thrashing about her isolette, pissed as hell and looking for something to eat.
In the brief time I’d been gone we’d gotten a new nurse.
When she came in to assess my daughter and saw me crying as I nursed my girl, for the first time in a day, someone asked me what was wrong. I explained that I didn’t know if my daughter would live or die. I told her that no one had told us what could be wrong with her, what that bump COULD be, why she was in the NICU, nothing.
She looked pretty aghast that we’d been told nothing, and for the first time, someone tried to reassure us. I remember leaving the NICU several hours later slightly less burdened.
That night, we ordered a pizza and tried to relax in my somber room. We tried to let go of some of The Fear. I didn’t feel much like celebrating anything, so no balloons, no stuffed animals, no signs that I had just given birth decorated my room. I could have been on any floor, in any room in the hospital.
The nurse brought me my Ambien and the NICU called to tell me that they would bring my daughter up to nurse every 2 hours (the NICU runs like clockwork. It’s no wonder that new parents struggle to care for their NICU graduate when they get home). I turned on the sound machine to blast white noise over The Daver’s snores, and waited, trying to fall asleep.
Unsurprisingly to no one, I couldn’t get anywhere close to sleep that night. This made the tally of nights without sleep 3.
I was about to lose it.
Somewhere around 4 AM, after someone had barged into my room to empty the wastebasket, waking me from the lightest of light sleep, I panicked. I’d sent Dave down to the NICU to sit with our daughter in the vain hope that having him at her side would set my mind free.
I was alone. The panic that had been a constant dull buzzing had morphed into something much more sinister and I knew what was about to happen.
Frantically, I paged the nurses station because I knew I needed help. I explained as carefully as I could that I was about to have a panic attack and that I needed my nurse NOW. My nurse came in, I don’t remember what she did, but she didn’t want to call my doctors because they would be rounding in a couple of hours and I could ask for something for my anxiety then.
Fucking bitch.
She told me to “relax” and then left.
I tried to “relax” which was as useful as punching myself in the face with a hammer. It didn’t work. I put a call back into the nurses station, begging; pleading with them to call my doctor. I begged for help.
My last rational thought was to quickly inventory anything in the room with any sort of calming properties. The best I could come up with was a bottle of Scope.
I didn’t end up drinking it, but I did call the NICU and beg Dave to come back up. A nurse passing by my room took pity on me and called my doctor, who prescribed me an Ativan. A swarm of people all happened to come into my room at the same time: a partner in my OB practice who looked terrified by me but discharged me anyway, a nurse with that beautiful pill, a tech to get my vitals, and my husband.
It sounds, in retelling this, that they were all there to help, but it wasn’t really like that. Dave and the nurse were trying to calm me down, but the tech, the doctor and whomever was washing the floor were doing their jobs. With spectacularly bad timing.
Ativan on board now, I was trying to gulp some calming breaths and stave off the panic. They’d turned off the lights, and covered my still-swollen body with fresh sheets, cleaned off the bedside table and turned on the white noise machine.
Finally, I began to relax and beat the panic away, if only slightly. Dave held my hand and told me over and over and over again that my daughter was just fine, she was perfect, she was wonderful, she’d done great overnight, she was beautiful, she was going to be just fine. It was soothing to hear, but what would have been MORE soothing? Having her bassinet next to my bed where it belonged instead of three floors below.
Then (dun, dun, DUN), the absolute worst person to show up did.
Lactation services.
Lactation Services showed up, because they say they’ll come by every day you’re in the hospital with a new baby, and they do. It’s awesome for people who need help because breastfeeding is nowhere NEAR as easy as it looks on those weird Lamaze videos.
(also: why are people in the Lamaze videos always naked?)
But I didn’t need help. And when she showed up and saw me shaking in bed, being held by my husband while the nurse clucked around me like a mother hen, lights off, white noise blaring, she should have excused herself. This is not a debate about breast and bottle feeding, this is about decency. But no, she didn’t get the hint.
No.
She introduced herself perkily and asked me how breastfeeding was going, and through clenched teeth, I answered that it was fine. Kinder than the situation warranted.
I expected this to be enough for her, but no, she followed that up with, “Do you have any concerns about breastfeeding?” Wrong question, dipshit. Time, place, all that.
“You know what?” I snarled, “I’m MUCH MORE concerned that my baby is going to die than if I have proper latch, okay?”
Again, she could have gracefully bid be farewell. But no. She kept on keeping on.
“Well, what about your concerns with BREASTFEEDING?” She asked, just not getting it.
I responded with, “Look, if she’s dead, I’m not going to give a FUCK about colostrum, okay? Please!”
I began to sob heavily again. It was the very real truth that my daughter could die. We all knew it. Nursing her wasn’t going to help an encephalocele.
Dave told her to get the fuck out of our room.
Finally, with a DO NOT DISTURB sign on my door, I slept for a few hours.
I awoke when The Daver bounded in and announced, “the neurosurgeon ordered an MRI! And he’s really nice! And not concerned! He thinks it’s an encephalocele! It’s a piece of brain or something that’s herniated out! We can go home after the MRI! And follow up with the results next week! Oh, I wish you’d met him. He was so, so nice.”
And just like that, we went from critical to discharged in less than 36 hours.
by Band Back Together | Oct 6, 2010 | Multiple Sclerosis, Stress, Trauma |
Three years ago, I was diagnosed with MS. It took about six months from the time I first saw my neurologist to get the actual diagnosis, but he and I were pretty sure we knew what it was from the beginning. I loved my neurologist.
When I say “my neurologist” I actually mean my second neurologist. My first neurologist was a ball-licking douchebag with the bedside manner of a used tampon.
For a couple years before I was diagnosed, I felt “off.” My memory wasn’t as sharp as it had been. I had occasional periods where I would lose my train of thought. I had periods of shaking and twitchiness and I often felt like I was in a fog. My primary care doctor sent me to Dr. Douchenstein, who spent all of five minutes with me at my initial appointment.
He examined my eyes, asked me how I felt, banged my knee with the hammer and said he thought I was fine…but if I really wanted to pursue this….*deep sigh*….he would go ahead and order an EEG.
When my EEG came back with “some small slowing in the left frontal lobe,” he said it was no big deal. He saw nothing remarkable and that there was no seizure activity indicated on the EEG.
In short; I was fine.
I saw him about 9 months later and he spent even less time examining me and indicated that no further tests were necessary. I could see the receptionist on the way out to give her my co-pay. Wham-bam-thank-you-man.
My primary care doctor believed something was wrong, though she didn’t know what. She sent me to see a new neurologist and this dude was the polar opposite of the first one. The initial appointment was over an hour long and he asked about everything.
Through his questioning we found out something very interesting.
As a child, I’d remembered taking an orange liquid-filled capsule. I’d stopped taking it when I was around 16 or 17 and I never knew what it was for. The truth is that when I got old enough to question what it was, I had taken it for so long that I didn’t think twice about it.
Dr. Raddude had me ask my mom what the pill was for and (finally) at age 40, I learned that I had petit mal seizures as a child. You would think that would be the kind of info I would have known, but nope. With this new information in hand and an extremely thorough initial evaluation, the doc went to work investigating.
Approximately 15 MRIs, a CT scat a PET scan, two EEGs and a spinal tap later, I had a diagnosis of multiple sclerosis. I was having small seizures still but honestly, at the time our focus was on diagnosing the MS. The diagnosis of the actual type of seizures has been in the last month, mainly because they’ve returned and have been getting worse.
MS affects everyone in different ways and for varying lengths of time. If you’re not sure what MS actually is, it’s a degenerative disease of the nervous system. It’s not fatal, but it does lower your quality of life. There are four types of MS and each is slightly different than the others, but there is one common thread: no two people will necessarily have the same symptoms.
My symptoms tend to be dizziness, loss of balance and coordination, dropping things, stumbling over my words or slurring words, losing my train of thought, straight up forgetting things (things that I should absolutely know) and (this may sound funny, but is NOT a joke) I had one more symptom in my head to tell you, but I cannot remember what it is. Whatever it is, it’s kind of new to me and I was going to tell my doctor about it, but as I said, I forgot to write it down.
When I was first diagnosed, I was in the midst of my first big MS attack. It lasted about a year, and in that time I had to use a cane, could not walk more than a block or two without getting completely exhausted, had to write everything down in order to remember it, fell I don’t know how many times, including a half dozen times in the shower and went through a two-month period where I needed to sleep 16-18 hours a day.
This wasn’t stay-in-bed-like-I-have-depression, this was sleeping because my body needed the rest. My neurologist said it’s not uncommon for some MS patients to go through that and it completely sucked for me.
Throughout all of this, I had full custody of my daughter. Luckily, I had nearby family who could help me out. For a while, I was having a hard time with doing simple things like fixing dinner. There were nights when I would try to cut veggies and my hands were shaking so badly that I was afraid I would cut a finger off. Other nights, I repeatedly dropped whatever I was carrying–plates, food, knives, you name it.
I couldn’t drive for almost a year because of the dizziness. Luckily I got state disability for six months, but was denied SSI. Why? I really have no clue. The crack medical team that evaluated patients for Social Security was holed up in a shitty storefront office with 1970′s equipment and they said I didn’t need it and that was that.
Assholes.
The kicker was the woman I was dating at the time. She is a RN at a very well-respected hospital and one night she told me this, “If you can’t work and can’t do the normal things you should, what good are you?” And with that, she dumped me. Swell, huh?
For two years, I did pretty well. The symptoms were minimal and except for a couple of small episodes I remained symptom-free. Until about two months ago. Things haven’t gotten as bad as it was the first time. Yet. Maybe it never will. That’s the thing with MS–you just never know.
Since the first attack I’ve moved far away from my family. I have a new neurologist that I absolutely love. She’s as thorough as the first one and is the one who actually diagnosed my seizures as Juvenile Myoclonic Epilepsy or JME.
Thanks to the seizures, though, she is pulling my drivers license which means I need to look for a new job.
My current job requires a license. Plus, I deal with people on a daily basis and it’s tough when I keep stumbling over my words. I’ve been mocked by some co-workers on a regular basis as well. A couple of days ago, I was standing in front of my boss’ desk for about five minutes and we were talking. In that short time I dropped my pen three times. He never said a word, but the last couple of days I’ve had co workers pass me in the hall and drop whatever they had in their hand. They will generally bend down to pick it up and say something like, “clumsy me.” It’s childish and makes me feel both pissed and like less of a person–though I know I’m not.
Things are starting to suck ass again, but it’s not the end of the world. I have a couple of friends here that I can count on and I have a wealth of them back home and ones that I’ve made through my writing. I consider Aunt Becky (ed note: I love you, yo) a close personal friend and I would help her in a second if she needed it.
The bottom line is this: I have MS and JME and they will both (to a degree) diminish my quality of life and will make things more difficult for me, but neither disease is who I am. I will find a way to get by. I’ve taken this and put my own touch on it. I occasionally have to use a cane, but I found one that has flames painted up it.
It looks way awesome and it’s my way of looking at the MS and the JME and saying, “blow me.”