I’m a girl – check that – a lady. I married a fantastic man. I have a crappy job, but it’s okay. I hobby (yeah, hobby as a verb, got a problem with that?) – I read, embroider, write to pen pals, and water my dead plants.
I get panic attacks. I have Bipolar II Disorder. But it’s okay. I mean, I can’t cure it…so, I live with it, right?
Don’t get me wrong, it blows serious monkey balls most of the time. I’m currently untreated and once my insurance kicks in, I’ll still have to wait another six months to have it covered, “pre-existing condition” and all. (Wait, wait, I’m getting to something.) I’ve got a few problems – so what, right? I’m with the Band and “problems” is one tune we all sing.
So why do I feel like I’m the first person to bring up bed-wetting? I’m no expert. I don’t have any kids. I don’t know anyone who’s ever done it…sober. I never did it as a kid. I mean, well, since I got potty trained. I’m good at being potty trained.
Recently, though, I peed the bed. Not even in a drunken haze. Just while sleeping, like a normal person. That’s what you do, right, sleep? And then, a few weeks later, I did it again!
What. The. Hell.
Add that to the migraines when I’m around blinking lights, a nervous twitch when my sister visits, panic attacks when I, well, whenever – it just happens on the roller coaster of being untreated Bipolar. That’s not enough? Now this?
For fuck’s sake, I’m an adult. I’m married. I share a bed with a man and two dogs. I yell at my little dog for peeing on the kitchen floor, but at least she’s not doing it in the bed. (You should see the looks she gives me, by the way.)
The only two times it has happened – hopefully the only two times it will ever happen – the only commonality I can see is that I had nightmares. I get nightmares pretty frequently, especially when I’m shifting between ups and downs, so it’s not like I can say, “Oh, it was the nightmares which caused them!”
The first incident was in the early morning hours. I awoke to myself peeing and ran to the bathroom. I finished, showered, and continued on with my day. No sheets were wet, just my pj’s. I told the Hub and we passed it off as maybe I drank too much water before going to bed, and was in too deep a sleep to fully wake up. Or maybe I was getting an UTI.
But whatever, accidents happen. We never mentioned it again.
The second incident, a few weeks later, I happened to be sleeping on the couch. (So, maybe I lied. Maybe I peed the bed once and the couch once. Hah! So, I’ve only peed the bed once!) I woke up in a virtual puddle. Thank goodness we have dogs and my couch is stain-guarded so nothing really soaked in. I ran to the bathroom, but I had already drained everything; and it was a LOT.
There I was, soaked in pee, in my living room. I cleaned up myself and the couch, and change into something dry. This was 2:00 in the am. I hate being up at that time – we don’t have cable and nothing’s on. I just stood and stared at my couch, willing it to dry faster. The husband woke up and stumbled to the living room “Are you coming to bed?”
I had fallen asleep watching television (I heart The Nanny reruns).
I had to tell him what happened.
We talked about it.
Did I remember the nightmare? No.
Did I drink a lot of anything before I went to bed? No.
Is there pain? Could I be pregnant? Is that even a symptom?
Have I been feeling all right in the brain lately? Any issues maybe that are bothering me that weren’t before? No.
Nothing seems different. Panic attacks seem more frequent lately, and the migraines last longer. That could be because I’m shifting schedules – downs to ups, you know.
Nothing seems to be triggering this new symptom.
Maybe all my other symptoms increasing in number and intensity are just putting my body through hell. Maybe it’s a new thing. Maybe I’ll do it again. Maybe I won’t do it again until I can see a proper doctor (November 2nd). Maybe. Maybe. Maybe. I just don’t know enough about bed-wetting to be sure about anything. (I’m not even sure it’s hyphenated.)
I do know something, though. I know I have someone special in my husband. I know that even after I had cleaned it all up, my husband cleaned the couch. He still waited a day or two to sit down on it. He was so nice about the whole situation, though. He worried about me, and what this new activity means for me. He said he was sorry my broken brain was making my body do crazy things.
To relieve the new anxiety I had facing bedtime, he even cracked a joke and offered to put me out with the dogs for a potty break before bed. No, really, I laughed. It’s all I could do. But I threatened I might pee on the couch again if he made me laugh too hard. And we laughed at that.
And then we went to bed, nervous about what the night might bring.
No one person is exactly the same as another. Mental illness affects everyone differently.
PTSD is defined as a condition that occurs in some people who have suffered through traumatic experiences. These feelings of anxiety, discomfort, and being scared can happen to people in their normal everyday lives, and those who have PTSD learn that these symptoms doesn’t go away. We suffer from many different symptoms on a regular basis.
Medical professionals feel PSTD is when someone has these lingering feelings for “at least a month or so.”
I can’t remember a time in my life that was “before PTSD”.
I was diagnosed with Post Traumatic Stress Disorder when I was in my early 20’s. At the time, I didn’t really think too much of it, and I didn’t research it. I was diagnosed with some other issues at the same time and I thought they were the important things I should be dealing with. Looking back on my life, I realize how much PTSD has affected me when I had no idea what it was. Clearly the PTSD is what I should have been dealing with this whole time, as the others are all by-products.
One thing I’d like to touch on is that people without PTSD tend to think that the 30+ year old trauma is what is haunting me today – however I do not normally have flashbacks or nightmares of the very old traumatic experience. It’s like my brain got programmed when I had the first trauma to overreact to all trauma so now, many years later I experience a major reaction to trauma. What may seem small to a non-PTSD sufferer, can be major to the brain of someone with PTSD Your brain tells your entire body to react to this huge event.
Some of my friends could (and probably do) describe me as being a negative person. I’d describe myself as realistic; I try to see all sides of a situation, good and bad. When friends are being very optimistic and point out good things in a situation, I will point out everything – all sides. Pointing out the bad things is why I often get told I’m pessimistic. I try not to, but I live with a constant feeling of fear, worry, and anxiety so it can be difficult for me to feel like things are going my way and everything will be fine. While I try not to spill it, sometimes it still slips out.
Persistent instability to experience positive emotions is described as a symptom of PTSD.
I don’t watch horror movies, and yes I’ve been mocked because I was a “wuss” or a “baby.” Honestly, I just brush it off, because they don’t know what it’s like to wake up in the middle of the night to a flashback. It’s not a dream, it’s not a nightmare, it’s everything you’re afraid of. There are always things in the back of your mind percolating.
Dark closets and corners hiding things that you forgot about or didn’t see as a problem. Today is day when it becomes a problem, and you’re going to remember it in the most traumatic way (even if it didn’t happen that way). It’s going to scare the living shit out of you, and linger with you like a cloud following you around ready to suck you up at any moment.
Every time your mind starts to wander for the following days or weeks, it will go back there and BOOM.
Sweating, anxiety, heart is racing, your body is shaking. You calm yourself down and after a while you feel back to normal again. Just when you think it might have gone away and left you alone, you walk around the corner and see something, hear something or smell something that reminds you of it and BOOM.
Back into high adrenaline mode. You take some time to calm yourself down. You go back to work, or whatever you were doing. You go on with your day. You’re cleaning up dinner, the kids are in bed and you think “I’m tried, it’s been a long day, I’ll head off to bed now too”. You crawl into bed and drift off to sleep. Then when your guard is down and it’s the middle of the night.
You wake up crying and shaking and sweating and scared. I did not know that these feelings were part of my disorder until recently. Flash backs and re-experiencing the trauma including “what if” scenarios through nightmares is a common characteristic of PTSD.
Most of my early life (pre-20) I don’t remember. I have relied on others to tell me what happened, even though I was there. I generally tell people that I have a bad memory and can’t remember much from my childhood or adolescence. I can sometimes be reminded and recall a memory, but I often can’t remember much.
I had no idea that repression and “lost memory” was my brain trying to protect me from my traumatic events.
It is very well known in my circle of friends that I’m easily startled. Most of them find it quite hilarious.
I often find myself at work and round a corner or open a door that has no window to find someone on the other side. I will jump out of my skin and usually let out a high pitched shriek which will usually get a reaction from the other person (either startle them or they laugh or both). This is a characteristic related to the hyper vigilance aspect of PTSD because I’m often on edge or on alert. It is also common for PTSD sufferers to have an exaggerated response when startled.
When something traumatic happens in my life, I can have flashbacks or re-experience the trauma, or sometimes my brain will play out “what if” scenarios. This usually occurs with the newest trauma but sometimes can go back to something that happened many years ago. If the trauma is very fresh, I can’t get to sleep.
Every time I try to close my eyes the event will replay itself and I’m in a state of panic.
This will continue all night and when I finally feel like I’ve fallen asleep I’ll have to get up and go to work, which leaves me feeling exhausted and unable to cope with getting through the day. This as PTSD-induced insomnia.
Another characteristic of PTSD is self blame, feeling hopeless ,and may including having negative thoughts about yourself.
I’d like to let you know, if you’re reading this PTSD is not your fault. If you are feeling this way, I encourage you to seek medical attention and the support of your friends or family. If that is not an option, there are helplines and even chats you can speak with someone.
There are other things that are on the “common list of PTSD symptoms” that I have not listed. Some I didn’t want to talk about and some I don’t normally experience.
I know that Post Traumatic Stress Disorder can affect people differently so I decided to write how it affects me.
Depression and I have been dancing partners for more than a decade now. Sometimes it’s a slow waltz, sometimes a spinning reel, and sometimes I get to sit off to one side and take a nice relaxing break from my dark friend.
Over the years I’ve learned to observe my own triggers and put safety valves in place. For example, I go to therapy once a year, even if I’m not depressed, just to keep tabs on the way I’m feeling. As soon as I discovered I was pregnant in 2008, I knew I had to keep a watchful eye on myself. I was prepared – absolutely certain – that I would end up with postpartum depression, and I was terrified of feeling as low as I could go with a baby to look after. When I hit rock bottom, I can hardly care for myself. How was I supposed to look after this tiny new person as well?
So, I lined up a therapy session at 34 weeks of pregnancy, aiming to build myself a nice set of mental defenses against the coming storm.
I went to my first session, wanting to talk about my anxiety over going on maternity leave. I loved my job, and I didn’t know how I could stand to be at home all day every day with a baby. We talked about it. I cried a little.
No, I didn’t. I cried a lot. I cried so much that I couldn’t even talk. I just sat there on the couch, sobbing so hard that my unborn baby started squirming, and the psychologist had to go get a second box of tissues. I did that for a whole hour, all the while trying to gasp out explanations for my behaviour. Hormones, obviously. Stress. Fear of change, of the unknown. I knew all my triggers.
Later that night, I was at home when there was a knock at my front door. There was a lady standing there who I recognised, although she didn’t know me. She was the niece of a work colleague – and she was a drug addict who was mixed up in all kinds of bad things that I’d been hearing about for weeks at work. She asked me if I could give her a lift into town. Odd request from someone you don’t know and I blurted out the question, “What for?”
She informed me that she was out of her anti-psychotic medication, and if she didn’t get to the pharmacy as soon as possible she was going to end up really sick.
Yikes. I threw out the first excuse I could think of – I told her I was pregnant and tired, and I couldn’t do it.
Mistake. Her eyes shot to my belly, and she spent the next couple of minutes telling me how lucky I was, and how she wanted her own baby, and… And by that point, my other mental dance partner was knocking loudly on the door of my brain – anxiety. I got her to leave, to go ask a different random stranger for that lift, and then I stayed awake. All. Night.
Convinced, utterly convinced, that she was coming back with a knife, and she was going to try to take my child from me.
By the time my next therapy session came around a week later, I wasn’t just a bawling mess- I was a shaking, hysterical, terrified mess, convinced that some kind of evil was heading my way. No ifs or buts about it, something bad was going to happen – from this girl, random strangers, an accident – I was sure that either my baby or I was in trouble, and no amount of logic or reasoning could sway my reptilian brain centre from this fear response.
And at that point I realised that this time, my depression and my anxiety had snuck around that safety valve, and I was in the extremely intense grip of something they hadn’t talked about in any of my childbirth classes:
Before the baby arrives, you’re supposed to be the glowing mother-to-be, fondly looking forward to the arrival of your new little one, taking it easy, enjoying your last days of freedom. Sure, you might get depressed once you’re sleep deprived, struggling to breastfeed and awash with postpartum hormones, but before the birth – no, that’s all supposed to be sunshine and moonbeams.
I was ever so glad I’d gone to that first therapy session, because otherwise I would have been running up against all these feelings with a baby in my arms. Or not, as the case so happened – it turns out I wasn’t wrong about my dire predictions, and everything did in fact go horribly wrong. But by that stage, despite a crash c-section, my baby being airlifted away from me, a month in the NICU, I found myself able to handle some of the greatest stress I’ve ever experienced without breaking down. By that stage, I was seven weeks into my therapy course, taking antidepressants, and acknowledging my fears.
From the simplest (fear of being bored) to the most complex (fearing that I’d end up being too much like my own mother and would turn my daughter into just this kind of wreck), I had faced down those issues, broken them into pieces, examined them, and found that they weren’t as scary as I thought. I’d come to understand some of the most important rules of becoming a mother; first, you can’t control what happens, so you just have to roll with it; second, your best is absolutely good enough; third, you can’t predict the future, so there’s no point guessing.
So, I guess this leads me to a few points about my experience of antenatal depression:
- It exists, and it’s not always the hormones. If you feel down, anxious or sad to a degree where it starts affecting your life or your enjoyment of life, go see someone about it. Your doctor, your therapist – it never hurts to talk, whether you conclude in the end that you’re depressed or not. You might end up with post-partum depression and be glad you put those defenses in place nice and early.
- I was terrified of taking antidepressant drugs during pregnancy for fear they might cause problems for my child. There are safe antidepressants you can take, and my personal experience was that the pregnancy hormones meant I had greater need for the medication than on previous occasions. My daughter’s problems, FWIW, were most certainly unrelated to the drugs, although when I weaned her from breastfeeding at 18 months, I was still taking the medication and as a result she went through a withdrawal process over about a week. She was a most unpleasant character during that week, but both before and after that, she was/is the same happy, delightful little person she’s always been.
- There’s no law saying you have to be delighted about everything baby-related. Birth? Bonding? Nappies? Cracked nipples? Pah! But in addition to those, of course, you get that milky new baby smell, smiles and cuddles, first words and steps and everything else that’s wonderful about kids. Taking a realistic view of the potential downers is important. Don’t expect it all to be utopia, but don’t expect it all to be terrible, either. Parenthood is, of course, a buffet that serves up a little awesome, a little awful, and you never know which you’re going to get.
I hear that all the time. There is no simple answer. But answering it is the focus of my daily life. Every day. The real answer is Gabriel’s not OK. Gabriel is Bipolar. His moods shift. Daily. Weekly. Yearly. He is never OK. I spend my days like a detective trying to sniff out any small clue of a mood change, charting, taking notes, observing him. Worrying about him.
He spent 10 months of the last 12 (literally, not figuratively) suicidal, dangerous, aggressive, and explosive. His meds are controlling that a little, but he is manic right now. Which is dangerous in other ways. And his meds aren’t holding that in. They aren’t ‘stabilizing’ him like they are supposed to. And without going into a tirade about doctors, I don’t have a ‘handle’ on this the way I PROMISED myself I would last October. And last May. And last July. You get the point.
The fact that mania seeps out now means that Gabriel is hyper (he isn’t normally at all), he is giddy, inappropriate (laughing, jokes, rude comments, butt jokes, pulling his pants down in front of a friend during a play date, etc), and more likely to jump off the roof (or trick his brothers into doing it) than anything else. Which is, in some ways, better than the dangerous depressive side. However, as October comes to a close, so will the mania, and the bipolar depression will replace my giddy-inappropriate child with one who hates the world. Who hates me. Who hates his brothers. One who is so negative and dangerous that he threatens to take knives to school and kill people. That kid is hard to live with. That kid is hard to keep safe. That kid threatens my sanity and the safety of my other two children.
We have to put him on another medication. A stronger medication. And although our ‘nurse practitioner’ is willing to give him a new medicine now, (they want to put him on Lamictal), my next appointment with his actual doctor, a real psychiatrist, isn’t until November 24.
Yes, the day before Thanksgiving.
Why wait? Because Lamictal has a 1 in 1000 chance of a deadly side effect. A deadly rash that may just start itself in the depth of my son’s mouth where I am less likely to see it. Less likely to be able to get him the immediate medical attention required. That scares me.
And scares my husband. So much so, that he refuses to give our son this drug until we see our psychiatrist. Who we can see the day before Thanksgiving.
So, I will bake pies early this year. And spend the that glorious Wednesday afternoon admiring the artwork on the walls of Children’s Hospital, nervously wondering if I will be rushing Gabriel to the ER with a rash on Thanksgiving day, and trying to hold down all those bites of pie I shoved in my throat in the anticipation of this moment where we are forced to make, yet another, hard decision about our son’s care.
But I have no choice. So we wait.
But the cycling won’t wait.
Depression is nipping at his heels and I am not sure we can out run it.
At the age of 3, my father began sexually molesting me.
At the age of 5, the sexual abuse was replaced by physical abuse from my father and my mother.
At the age of 9, both my mother and father went to rehab for alcoholism.
At the age of 10, I finally knew what it was like to have a home after living in over 200 houses, more than 100 cities, fifteen states, and two countries.
At the age of 14, I was raped by a classmate my freshman year of high school.
At the age of 15, I started working two full-time jobs and single-handedly supporting my family because my parents flat-out refused to work.
At the age of 16, my parents decided to start drinking again. I took on a third job to support their alcoholism.
At the age of 18 I graduated high school at nearly the top of my class.
After my first year of college, I was told that I was not allowed to continue even though I had scholarships because “I wasn’t raised to think I was better than anyone else.”
At the age of 21, I was raped again … by the man who had betrayed me seven years before. My parents told me I deserved it, and was lucky that a man had paid that much attention to me since I was worth nothing. I was diagnosed with Post-Traumatic Stress Disorder.
My birth certificate says that I was born on April 2nd, 1987 at 1:25 p.m.
I was born on March 30th, 2009 at roughly 9:45 p.m. when, at nearly 22 years old, I decided I had been through enough.
I am the adult daughter of two alcoholics who have been diagnosed by multiple mental health professionals as suffering from a variety of mental disorders.
My father suffers from Bipolar Disorder and severe Anxiety. My mother is a Paranoid Schizophrenic. Neither one has any sense of reality beyond their immediate perception of the world, and both are Compulsive Liars.
The man who raped me intimidated and frightened me into a silence I would not break for almost ten years. When I ran into him again, he introduced me to his wife and child as if we were old high school friends.
He contacted me after getting my information through old mutual friends and asked if we could meet to reconcile and so that he could apologize for what he had done. He never had any intention of doing so and in my own foolishness, I met with him and he forced me into the back of a car and raped me … again.
My parents told me I had to be lying, and that if I had been raped then I should consider myself lucky because that was more than I deserved from anyone. When I insisted that I was not lying and needed their help, my father smacked me across the face and broke a chair over my back.
I was almost twenty-two years old at the time and the only thing I remember after that was my youngest sister’s face. She was staring in horror and fear trying to figure out what to do.
I was the only one who stood up to the two of them. I defended everyone. I fought everyone’s battles and kept everyone safe. The thoughts in her mind were clear on her face: Who was supposed to protect me? How could they help me?
I had stayed for years thinking that I was protecting them. In that moment, I realized that if I showed them that all you could do was take the abuse and not actually do anything about it … then one day my little sister was going to be in my position … and no one would be around to help her either.
I didn’t have anywhere to go. I had nowhere to stay that night. I called up a friend and grabbed a ride, and crashed on a couch while struggling to find somewhere to live.
I went through months of endless torture and doubt while going through the trail that put my rapist in jail for what will be a very long time. I changed my address, my phone number, and all of my information so that I could cut ties with the life I didn’t deserve and start living a life that was not filled with fear, or doubt, or regret, or abuse.
Today, I am 23 years old.
I have a home of my own for the very first time.
I have sought counseling for the traumas I have been through in my life.
I have struggled with body image, self-esteem, guilt, and an intense lack of trust in people I care about.
I have cut all ties with my family, stopped supporting them financially, and moved on to start a life of my own.
I have found love in a man who is the best thing to ever happen to me. A man who would never raise a hand to me, who loves me in spite of my demons, and who has already supported and seen me at my absolute worst.
I have found peace.
I am not sharing my story to shock, horrify, or scare people. I am not sharing my story seeking sympathy although it is graciously received.
I am sharing my story because somewhere out there is a man, woman, or child who has faced demons that linger in shadows all around them. They may not feel that they are able to overcome them and they are utterly alone.
I am telling you my story to tell you this:
You are not alone. Ever.
No one is ever alone. There were moments when I wanted to give up and give in. Just tune out and wait for the worst to come so that nothing else as bad could happen. I figured there was nothing that could help or save me. I have been there.
I made it out and I am waiting for you with open arms on the other side. There’s plenty of room here.
This evening the conversation goes like this:
Me: Sam, would you like to have beef stew for dinner again, like Daddy and me?
Me: Great. Dinner is in ten minutes.
I am pleased that Sam says yes. I am pleased that he tried the stew at dinner last night. Trying new foods is a sign of health in our son, while rejecting foods is a clue that he is doing poorly.
We sit down to dinner. Sam looks at the bowl of stew in front of him.
Sam: I won’t eat this.
Sam: I didn’t ask for it.
I’d sorted all the vegetables in the pot and put the best-looking ones in Sam’s bowl, because he won’t eat them if they are mushy or misshapen. Ian, Ruby, and I can live with less-pretty vegetables.
Me: Yes, you did.
Sam: No, I didn’t!
I’d poured Sam’s serving of broth out of the steaming pot five minutes before dinner so that it would be just the right temperature for him. I’d taken out four chunks of meat, cut them each into smaller pieces so their size didn’t freak him out, and then tasted a small piece from every chunk to make sure that none of them had that gamey flavor that stew meat sometimes gets, which would also freak him out and end dinner with tears. There had been three volcanoes already today, many more this week, countless more over the years we have been navigating life with Sam.
I close my eyes and take a breath.
Me: I would like you to eat your stew.
Feeding Sam is a delicate experiment, not only because a particular meal might fail if something is not right, but because a single bite of something he finds unpleasant will eliminate that food in his diet. It happened with a spicy bite of chicken when he was five, and now, two years later, he gags at the sight of chicken.
Sam, his voice rising: You didn’t ask me if I wanted this.
Me, my voice rising: I did ask you, Sam. Daddy and Ruby heard me ask you if you wanted stew.
Feeding Sam’s four-year-old sister Ruby is easy. She likes most of what we put in front of her and is eager to try new foods. As I argue with Sam about his dinner, Ruby quietly gets to work on her bowl of stew, the bowl of stew which I did not check over, taste or otherwise de-fuse before serving to her.
Sam, whining: I want to eat noodles.
Me, stony: You can have noodles if you eat your stew.
Sam stares hard at me, then lifts his spoon to his mouth. His small pink tongue darts out to lick the spoon, then disappears. He squinches up his face and says: The broth tastes bad to me.
The words pour out of my mouth hot and mean: You liked it yesterday.
Sam starts to cry. He beats the table with his fists. Ian warns Sam not to let his volcano explode. The developmental pediatrician had given us this metaphor for Sam’s angry meltdowns. There had been three volcanoes already today, many more this week, countless more over the years we have been navigating life with Sam.
Sam yells tearfully that it isn’t fair, that he didn’t ask for the stew, that it tastes bad to him. Ian gives him a second warning. Something shuts down inside of me, as though my anger abruptly recedes, and I gaze toward the stewpot, thinking placidly about throwing my bowl of stew against the purple tile backsplash behind the stove. About how the stew would splatter, how the shards of the blue Heath bowl would fly. Sam lets out a howl and my anger floods back into the foreground. I excuse myself and go to the living room.
I sit on the couch, sadness and fatigue eating at the edges of my anger. Most days, Sam’s issues threaten to overwhelm me. Now seven, he has had a sleep disorder since birth, and gets up for the day, every day, hyperactive, between 4 and 5 am. He is anxious, depressed, irritable, hypersensitive and over-reactive, and has been all of these things — in some way or another —his whole life. We recently found out that he also has celiac disease and cannot eat the gluten in wheat, barley or rye, and so now is on a strict gluten-free diet.
This is the son we have, the person we have to work with every day. Most of the time we do not feel equipped to do this, do not feel confident in handling what comes our way from minute to minute. I am, however, a competent researcher, and so I seek answers. This is one thing I can do.
Instead of working at my actual job, I’d spent my morning emailing with doctors at Stanford University, the University of California at San Francisco and the University of California at Davis, trying to find a physician who understands the relationship between Sam’s anxiety, depression and morning insomnia. We have seen psychologists, psychiatrists, a developmental pediatrician, a holistic pediatrician, a sleep disorders clinic, an occupational therapist, an osteopath, a chiropractor, and a speech therapist — the latter for the oral-motor disorder he developed because parts of his mouth were so sensitive he could not let his tongue go there. No one, except for the speech therapist —who assured us that correcting Sam’s speech should only take three or four years of twice-weekly therapy — has an answer for us, for our child.
When Sam was four, he picked obsessively at his head until it bled, and chewed his fingernails to nubs. When he gnawed off an entire toenail, we took him to a psychologist for help with the anxiety that drove him to tear off parts of himself. The psychiatrist heard his story and said that Sam didn’t need therapy: he had sensory processing disorder, difficulty taking in and figuring out what to do with everyday sensory information: sound, sight, taste, smell, touch, awareness of his body in space. That explained why Sam gagged at certain smells, could not dress himself, had fine and gross motor delays. Why, as an infant, he had cried at loud noises, at sunlight, at the feel of wind on his face. But why?
We are cautious in the way I imagine an abused wife is around her husband when he’s been drinking, certain he will explode, wondering only when. No one could tell us this. I’ve asked them all.
One psychiatrist told me, when I asked him why: We must have a certain epistemological modesty about what it is possible to know. In other words, suck it up and live with it. But I can’t— I need to know why my son is this way, so that I can help him live a less disordered life. I can’t see where modesty about my quest to help my child serves any purpose. Except, perhaps, that it might preserve my own sanity.
I feel so often that I am failing with him. Trying so hard and still failing.
At home we do what the occupational therapist calls a sensory diet to manage his sensory integration dysfunction, and what the developmental pediatrician calls cognitive behavioral therapy to redirect anxiety and rage. We are trying to control his behavior, mood and sleep disorders with nutrition — he takes fourteen different vitamins and supplements twice a day, and sits in front of a 10,000 lux light box every evening. We have adopted strict timetables and firm boundaries and clear expectations because Sam thrives on structure. In these ways, we prevent as many meltdowns as we can.
Still, we are cautious in the way I imagine an abused wife is around her husband when he’s been drinking — certain he will explode, wondering only when.
Ruby finishes her dinner and comes in to see me on the couch. I lie down with her delicate body on top of me, her back to my front. Cuddling. Snugging, as she calls it. Loving. We giggle and I start to feel a little better. She is my love, my light. I feel fortunate to have her, my normal child, my sweet girl.
Me: I feel lucky to have you.
Ruby: I feel lucky to have you too, Mommy.
Sam comes in. I ask if I can talk to him. I send Ruby to the kitchen in search of a gluten-free pumpkin muffin (Omnivorous Ruby has more-or-less happily gone gluten-free because of Sam’s illness). I tell Sam that I feel sad because I’d asked him if he wanted stew for dinner, and I gave him the best vegetables, and I cut up the meat and tasted each piece to make sure it was okay for him, and he still wouldn’t eat it.
His face crumples.
He starts to cry.
I pull him onto my lap and lie back down, hold him on my body the way I’d held Ruby. He is larger and more full of sharp elbows and wiggle. He starts to sob. I stroke his arms.
Sam digs an elbow into my ribs and wails: I hate you, you never do the right thing, I wish you weren’t my mother.
My hands freeze and my heart locks up. I think: I hate you. And I’m going to bite off a chunk of the inside of my cheek with the effort of holding those words in.
I take a deep breath and try something I learned in parenting class. As he howls on top of me, I say, with as much gentleness as I can muster: It sounds like you had a hard time with dinner tonight.
He doesn’t hear me through his sobbing.
I sit up and move his body off mine, position him next to me and look directly into his eyes. Say again, slower: It sounds like you had a hard time with dinner tonight.
He takes a ragged breath and sighs in two parts. Says: Yeah. Dinner was hard for me.
My heart melts a little.
Lock, melt. Lock, melt. This is the tachycardic dance in my chest every day I live with Sam. Sometimes it feels like I just can’t take it anymore, can’t handle the overreactions, the accusations, the sobbing, the vast despair. I don’t sleep enough to withstand it. I ask why he is crying. I think: I hate you. And I’m going to bite off a chunk of the inside of my cheek with the effort of holding those words in.
Sam: Because I feel so bad.
Me: What do you feel so bad about?
Sam: Because you did all that work for me and I didn’t eat it.
I melt the rest of the way. His despair becomes something to feel compassion for, not something hateful, hateworthy. Sam starts sobbing in that way that is not easy to stop. I put my arms around him.
There are things we could, should have done differently with Sam. We should have gotten help with sleep earlier. We should have figured out his sensory issues when he was a baby, not a four-year-old. We should have found a more aggressive pediatrician who helped with referrals and diagnoses. We should have taken special parenting classes sooner.
And there are still questions. Should we medicate him? With what, when his doctors can’t agree on what is wrong? Could we have found his celiac disease earlier? Are we, as our pediatrician once suggested, making too much of this? But here we are, on this couch, in this moment, and we have not done these things or answered those questions, and I have to decide how to respond to the howling boy next to me. My boy.
I murmur: It’s OK. I love you. I even loved you when I felt sad about the stew. I will always love you. I’m not mad. It’s okay. It’s okay. It’s okay.
His sobs start again. I hold him.
Me: It’s OK. Everything is going to be OK.
He cannot stop crying.
Ian comes in and says it is time for Sam’s supplements. That Sam already has two warnings. That it’s not OK to let his volcano explode like this.
Me: No, this is different.
Ian stares at Sam for a moment, taking in the ragged breathing, the small face wet with tears and snot. Then he says to me: Earlier when Sam was upset we did some squeezies, and Sam felt better.
Squeezies are the sometimes-ineffective and sometimes-magical joint compressions that the occupational therapist taught us to do on Sam. They are helpful during a meltdown when words don’t work. I often forget to try them.
I sit him in my lap and squeeze him firmly: shoulders, upper arms, elbows, forearms, wrists, hands, each joint of every finger. Press the flat of my hand into his stomach, compress his ribs from the sides, gently press his head down into his neck.
He begins to calm down. Still taking uneven, gulping breaths.
Me: We will get help for you. For this bad feeling inside. We are working on it.
Sam: Okay, Mom.
I squeeze his smallest, last finger. He catches sight of a toy catalog on the floor and asks to look at it, sitting up next to me on the couch. He takes a shuddery breath. Mommy and Daddy both try our best. We don’t always get it right. But we are always trying our best.
Sam, opening the catalog: Is that a bouncy house?
Then, with more enthusiasm: Is that a pirate sandbox?
We look through the catalog together, and then I tell him it is time to go take his supplements. He does not argue. He looks at me.
Sam: I wish you could do my bedtime reading tonight, Mom. Daddy was giving me warnings. He thought my volcano was exploding.
Me, thinking for once it is Ian and not me who has missed a cue: It wasn’t your volcano, Sam. This is something else.
Sam: Daddy thought it was the same thing.
Me: Mommy and Daddy both try our best. We don’t always get it right. But we are always trying our best.
Sam: Okay, Mommy.
Sam goes into the kitchen. I sit on the edge of the couch alone for a moment.
I take a deep breath, and then go back into the kitchen to find my family.