by Band Back Together | Sep 3, 2014 | Abuse, Agoraphobia, Bullying, Child Abuse, Child Sexual Abuse, Conversion Disorder, Emotional Abuse, Homelessness, How To Cope With Post-Traumatic Stress Disorder, Myasthenia Gravis, Natural Disaster, Post-Traumatic Stress Disorder |
From my first memory, I have felt like I have been made of some sort of flypaper for trauma.
I am basically housebound and have a major fear of meeting, connecting, and attaching with other people in any way other than online. People hurt.
According to the last pro I saw, I have C-PTSD with conversion disorder. My trauma timeline (a literal timeline of traumatic incidents, memories, etc that we built in therapy) began at age 2. I have a history of long-term, consistent psychological/emotional abuses from multiple family members, gaslighting, covert pseudo-incestual victimization, and a mixed bag of years of homelessness/poverty as well as clusters of single-event traumas (natural disaster, single-incident sexual assaults from an early age on, spousal/partner abuse, bullying in school, hell – you name it). The longest consistent abusive relationship I had lasted from birth until I was 31.
I also spent long periods of my youth in and out of hospitals with various physical illnesses. (I don’t think that’s a coincidence, either.) Doctors and hospitals are some of my biggest triggers.
I have lots of triggers.
I began converting when I was 22, only I didn’t know that’s what it was at the time. Since then, I’ve had some symptoms come and go and others that have never left, like constant neuralgia. I was told it was like my body went all “TILT” and some of my systems got fried. I spent some time wheelchair-bound, unable to walk.
So besides the severe PTSD symptoms, I also have neuralgia, myasthenia gravis, and tremors.
My biggest triggers, besides the medical world at-large, are pretty basic and direct. Others are really complex:
- any governmental/bureaucratic institution (like court, the Medicaid office, the police, the DMV),
- phone calls or visitors when not scheduled ahead of time
- sudden, loud noises
- being touched without my permission
- alpha-type individuals with large, forceful personalities
- being late in any way
- having to “explain myself” without reason
- being judged
- severe storms that could produce tornadoes
- certain smells, words and phrases
- anything unexpected
That last one is almost the hardest one of all to deal with. Sometimes I feel almost a kind of autism or something. Like my today has to be just like my yesterday – or at least as planned, and if not – if something throws a monkey wrench into my plan for today, I totally lose my shit. It can be something as simple as a bill that was higher than it should be or oversleeping. Not that sleep is something I get a lot of, but sometimes the insomnia flips itself inside out and all I do is sleep. Though at least with insomnia, I don’t oversleep, so I prefer it.
I heard this line once, from a favorite show of mine, “People with this thing (PTSD), they don’t believe in a just Universe.” Man, ain’t that the truth.
As I’m sure it is with everyone, my story is unique. There isn’t a single situation I have ever experienced that isn’t somehow affected by this damn illness. I don’t know how to let any of it go, either.
I also do not know how to relax. Other than right after orgasm. Which on the one hand, makes orgasm extra nice (when I can get one – yes, of course I have trouble there, too) but on the other hand, as soon as my body goes back to normal, I’m back to tension and worry. My muscles hurt all the time because I’m constantly tensed up.
I get bothered by things that have anything to do with control. Control being mine, that is. Of course, I can’t handle when I have no control, either.
I am on disability, and housebound as I said before, so I spend a lot of time with distraction. I have a couple of hobbies that bring me as much peace as possible, but sometimes even they don’t help.
I have bad days and better days. Once in a while, I have a good day. I never just kick back and enjoy a good day, though, ’cause I seem to be suspicious of it. It’s like I’m thinking, “What is going to come along and ruin this?” …because something usually does. It’s that no-relaxing thing.
It’s like if you’re on letter M, and letters A through L have been horrible? You can’t exactly just get cozy on M… and even thinking about what fun letter T would be would be all kinds of dangerous.
I guess that about covers it. Separating out the ingredients of the soup of this illness is really tough sometimes.
I don’t know if in future I’ll post specific events or not. Thanks for letting me put this all down like this, though.
While I am terrified of people, I am usually pretty lonely.
It’s like so much of it all has some vicious cycle to it, doesn’t it?
by Band Back Together | Sep 4, 2013 | Adult Survivors of Childhood Sexual Abuse, Child Grooming, Child Sexual Abuse, Date/Acquaintance Rape, Healing From A Rape or Sexual Asault, How To Cope With Post-Traumatic Stress Disorder, Post-Traumatic Stress Disorder, Rape/Sexual Assault, Self Injury |
The scars of child sexual abuse last a lifetime.
This is her brave story:
Hi, The Band. I’m not too sure where to start, so I’ll start here.
My uncle’s friend was a police officer. He had a daughter and we played together often; we were like a family all hanging out together.
One night, when I was I was 9 years old, I slept over at his home…everything changed..
Suddenly, I was in his bedroom, the room was dark, and he was on top of me. I started to feel him going in and out of me (sorry I’m not yet able to be specific).
It hurt so much.
I couldn’t do anything.
I couldn’t scream.
Wasn’t I supposed to do what he told me to?
I did. I turned when he told me to, I did all he told me to, and I did nothing to stop it. I just squeezed the sheets tight and hoped for it to be over. But it kept happening, like there was no end.
Finally it was over, or so I thought. Because even now that I’m 22, I still relive it over and over again.
I have PTSD with severe anxiety, seems like there’s no end to this nightmare.
Last year made it worse – my friend sexually assaulted me, I choose not to call it “rape” as it makes it seem so much worse.
I don’t know what to do or think; sometimes I don’t know how to live – I cut my wrist sometimes. Each time I promise that I won’t do it again, but it’s almost addictive especially at my low points. I don’t trust men, especially police officers – it’s ironic how those who are supposed protect us are the ones who hurt us.
I just need someone who can understand what I’m going through, someone who’ve been there, someone I can talk to, and won’t think that I’m too messed up.
I need help.
by Band Back Together | Dec 4, 2010 | Anger, Anxiety, Baby Loss, Coping With Baby Loss, Grief, Guilt, Help For Grief And Grieving, How To Cope With Post-Traumatic Stress Disorder, Livng Through A Miscarriage, Loss, Love, Miscarriage, Post-Traumatic Stress Disorder, Sadness |
I have never spoken to anyone about this but my husband, my mother, and, of course, my doctors. This may be one of the hardest things I will ever write. It may not all make sense. I don’t remember it all. But yet I remember it like it was yesterday. I will never forget it. This is my PTSD talking. I am in a very bad place right now. And I know what happened to me isn’t as bad as some but to me it’s worse because she was mine.
Anyway, Oh God here goes…
You were due December 25th. I was so excited that both of your sisters were Christmas babies. I love Christmas. And I still do. Your due date was so amazing I couldn’t believe it – three children born on or around Christmas.
The beginning of my pregnancy didn’t seem out of the ordinary. Normal morning all day sickness for me. Around 6 weeks something felt off I called my Doctor who is AMAZING, and she got me right in for an ultrasound. There you were – perfect. And fine. Little heart beating to beat the band with a due date of Dec. 25th. I felt better. Things resumed. We got to our 12th week and we told everyone and even started buying things. Come on – you were my fourth baby. What could go wrong? How could I even think that?? Everything was fine .
Then it happened. July 27th I felt yucky and my back hurt SO bad. I should have called the doctor. You might be here today. I should have known. But I just thought I worked hard that day. It was hotter than hell. And it was just a back ache. I never ever had back labor. At 2:12 on July 28th, I woke up and thought, “shit, I wet the bed.” I hit my husband and said, “I wet the bed. Go get new sheets.” And then I went to turn the lights on. And it felt really off. It was sticky. I turned the light on and there was blood everywhere. I heard a sound like I had never heard before – it was my screams. I told my husband call the doctor and tell her we’re going to the hospital. Something was very very wrong.
My mom came running in and tried to calm me, but it didn’t help. I remember telling her keep the kids out. I didn’t want them to see the blood. And my back – OMG the pain. All the sudden I felt a pop between my legs and there was a “doll” between my legs – it didn’t seem real. I thought WTF is that about my own baby. I saw your little chest heaving up and down. You were breathing!!!!!!!
I screamed for my husband to stop calling the doctor. We had to leave NOW. She’s here. She’s ALIVE. She’s breathing.
You were 18 weeks and 5 days. You were perfect – tiny and waxy, but perfect. You breathed for 5 minutes. I held you in my hand as you took you first and last breaths. I will never forget them. I loved you so much in those 5 minutes. You were my daughter, Ariel Grace.
But the horror didn’t come until we got to the hospital. You WEREN’T a baby. You were nothing. You were – I choke on the words now. You were a miscarriage. But I saw you and I held you. You WERE breathing for 5 minutes. I have a cell video of it. But you were going to be discarded as if it was a miscarriage. I flipped out like my husband has never seen me flip out. I screamed and I wailed. I hit a doctor, I think. Not my doctor. She was AMAZING. She held me while I rocked the baby. She stroked my hair. She couldn’t change the policy.
You would never exist to the world. You would get no birth certificate and no death certificate. But to me and your father, siblings and grandparents you were EVERYTHING!
I made my uncle call his friend at a funeral home. He kind of laughed – not in a mean way but he told my uncle, “She’s not even as big as a cat. I can’t charge. I won’t. It’s a freebie.” I have her ashes. Although that was a HELL of a fight. But I think they knew I was a mad woman and I would not leave that hospital without MY baby.
I have her ashes hidden in my room. I left the hospital the next day with nothing. No baby, no belly, no nothing. I was empty and blank and a Zombie for a LONG time. Hell, I still am. I never mentioned it to anyone. Some people asked questions. I think I probably stared at them blankly. But I never answered. My husband or mother would later. I couldn’t talk about it. It’s over a year later and the pain is still unreal. I have nightmares of waking up to the blood every five minutes. I don’t know that they will ever go away. But what is the worst for me is I can’t talk about her to anyone but my husband, mother and therapists.
Am I forgetting her, am I not remembering her, am I cold? I just it hurts so bad. And no one that I personally know can understand that pain. No one I know in real life understands my anger and bitterness of her not being a baby because she was 18 weeks and 5 days and not a viable birth. Isn’t breathing for 5 minutes viable? Had we been at the hospital could we have made it farther my AMAZING doctor thinks that those 5 minutes were pretty darn special. And so do I for a baby with such under developed lungs.
Obviously now everyone knows she was never born and just went away. People have stopped asking questions. And I just can’t talk about it. I feel cold. And I miss her even more now. I don’t know that it will get better. She wasn’t a “real” living baby. But she was mine. I held her. I named her. I talked to her. And on her birthday I buy her a gift. I guess that really does make me crazy. Maybe I’ll stop someday. I don’t know. But I guess tonight on one of my darkest of nights, this needed to come out. Thank you for listening. No one else knows. And it hurt to talk about. A LOT so this was BRAVE. So thank you for reading.
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.
