I can only write this from my perspective, of course. I can’t tell you what my family goes through. I don’t know what my friends experience. I could guess, but that would be it: a guess. But here is what I go through, living with Borderline Personality Disorder.
First is the rage. I can literally see the switch in my head flip from peaceful to ready to explode; I only wish there was a visual clue to those around me. I fill with rage in an instant, and it just explodes out. I’m not violent with it, though that is an impulse I fight every second. My only real hope of it never getting that far is to find the right combination of medications.
From there, impulses. Everyone has basic impulses. Gut reactions. Instincts, even.
The thing about my impulses is that they can be very less than helpful: the impulse to quit a job because of a hard day; the impulse to hurt myself because of a rough week.
I am very lucky that I’m through the job-quitting phase. Every one I’ve left has been for a solid reason. But each time, it was the final straw-impulse that put me there. I’m just lucky my love of current job is stronger than my impulse for self-defense that leads to the “I quit.”
As for the impulse to hurt myself, that started right before I was in the hospital for the first time, and it ended before I got pregnant with my second baby. It lasted less than 6 months, and I don’t plan to do it again. Another impulse that isn’t worth it.
Not all impulses I have with Borderline Personality Disorder are that extreme.
Most of them are standard – not thinking before I speak or act. A lot of it can be brushed away as minor. But words and actions do hurt, and not everyone is so quick to forgive. Worse yet, years of verbal impulses can chip away what patience there is. And I see what I’m doing – I know the pain – but I’m powerless to stop it. I honestly don’t know what I’m saying until it’s out of my mouth.
I know, I know… think before you speak. I’m getting better. I wouldn’t be married otherwise. Here’s the kicker: I can usually convince myself something is harmless or can be explained to be harmless in the two seconds it takes to think before I speak. I’m not usually right, though.
I think splitting is one of the worse parts. Imagine your entire world is black or white, where black is evil and white is godly. Everything is one of the two, no half and half, and NO gray.
That’s splitting. It mostly pertains to people who have Borderline Personality Disorder, but does not have to.
My husband, Pat, has been flip-flopping between the two for years now. He can flip ten times in one day, or he can go days or months before a flip. It has a lot to do with how we are treating each other.
One minute he can be making me dinner and he is white as hell.
The next minute he used instant mac and cheese, not the regular, and he’s suddenly evil. True story. My defense? He knew I wouldn’t eat the instant shit, so why did he bother making it?
Not everyone is one or the other, but this doesn’t mean they are gray. We’ll call them transparent. I don’t think there is a better way to describe it. They are the random people in the world you come upon who leave little impact beyond the few minutes in their presence. A cashier who wasn’t bad or good, just transparent.
And my kids, we’ll call rainbow. It’s like a whole different way of thinking.
As for myself, I’m usually black or transparent.
That’s just how life with Borderline Personality Disorder works.
When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts.
It is through our stories that they live forever. These children were here and they mattered. They were loved.
They are loved.
My therapist told me that I hide behind walls of humor.
And I do.
I laugh so I don’t cry. And I have been doing a LOT of laughing lately.
But I have been doing as much crying, just behind closed doors. I have been going through all the stages of grief and grieving in like a minute every single day. It’s wearing me down.
I thought Christmas – her due date – and what would have been her first birthday would have been harder.
I’m okay in public and with those who she’s disappeared to. I can pretend everything is okay; that I am fine.
I’m not fine.
But today. This date which means nothing to me is harder than her day. Tuesdays and the 28th of every month are torture because she was taken Tuesday, July 28th. But today?
Why am I aching for her today, a day that means nothing? Why do I miss her so much that I can barely breathe?
She would be a year old.
What would she look like?
Would she look anything like her sisters?
Would she look like her daddy or me?
Would she be walking?
Would she be talking?
Would she cuddle me when I needed her?
It’s such a punch in the gut, living without her. Having these thoughts. And seeing her and her “birth” (which wasn’t a birth to anyone but those who really loved her) every time I close my eyes.
My therapist wants to talk about it; deal with it.
If I talk about her and heal, will what few memories I have fade?
I don’t know that I can relive that night out loud. I see it over and over in my head. I wrote about it here. But I can’t say out loud. I can talk to my husband and mother because they were there, they know. But even my husband doesn’t grieve with me. He has almost moved on. I don’t think I ever will. I held her in my hands. And always in my heart.
Everyone grieves differently and he just wants me to be better.
How do I get better?
Why on a day when I should be semi-okay does the grief come out of nowhere and take me to my knees? The pain. The anguish. I feel like I am drowning.
All I want is to hold my little girl in my arms. To rock her and smell her sweet smell. I never got to smell her sweet smell. It’s not fair.
I want to punch walls and throw things and scream at the top of my voice, “it’s not fucking fair!”
This aching, this longing for something that can never be. That is the hardest. I miss my daughter. I can’t breathe without her today.
Maybe tomorrow will be better but today it’s not going to be okay.
When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts.
It is through our stories that they live forever. These children were here and they mattered. They were loved.
They are loved.
I saw your pajamas last night.
No, they weren’t the exact ones, of course. I returned yours to the store, along with your bassinet and baby blankets.
These were the same though, your pattern. The ones I picked out to match your nursery. Bright teal, with lime green, hot pink, and bright purple flowers. And panda bears. Lots of pandas.
It’s been three years today, October 12. One would think it wouldn’t hurt anymore. Or that I would have tried to heal by having another baby by now. They’re wrong.
It does still hurt. In the lonely nights, when I feel the ghost of your movements, deep in my belly. In the unguarded moments when I let myself watch the baby shows on TLC. When I pass by someone pregnant, and I find myself passing a hand over my empty tummy.
Is it wrong of me then, that I do crave to hold another baby in my arms?
I’ve given myself time, and I continue to mourn you. But I still have so much love to give. And Ian wants a baby. I want to give him this gift, to share this part of our future together. A part of me still feels I’m forsaking you to do so.
So tell me, my sweet Bella, what am I to do?
How long am I to go on missing the sound of your heartbeat, the feel of your somersaults?
How long before it’s “acceptable” for me to want another child?
With all the upheaval and negativity running rampant through our lives, it’s important to be able to stop, take stock of what’s important, and find some joy wherever we can.
At The Band Back Together Project, we like to take the time specifically to arrange a little happy boost for everyone.
My daughter has always loved to cook and create in the kitchen. When she was four, we were able to have cable television for a time, and the Food Network.
She was in heaven.
Other children turn on cartoons on Saturday mornings. My daughter would rather watch Paula Dean or the Barefoot Contessa.
She had – and still has – such a passion for cooking. She would get so excited every time she made something. It was always excellent! And amazing! Delicious!
Even when things didn’t turn out quite right, she always found a way to declare them good.
The bottom of the cookie might be burnt, but the top of the cookie? That was delicious!
Our scalloped potatoes and ham might be a touch closer to soup than a casserole, but didn’t it taste amazing?
She’d declare our efforts good, and then turn to me and say something like,
“We made this good. But next time, we should make it different, so it’s more good!”
Grammar aside, my daughter knew something at four years old that I still forget:
Even our mistakes can be good.
Our mistakes are how we learn. We muddle through our situations as best we can, and then we look back and see where we can do better next time we’re faced with something hard.
Even our mistakes can be good, if we learn from them.
This year on The Band Back Together Project, we are curating and adding the names of your children who are no longer with us and we will be posting our Wall of Remembrance on Pregnancy and Infant Loss Awareness Day.
We welcome you – any of you – to share the names of those you are missing.
I never expected to be a mother at 17. I also never expected to be joining the baby loss club at 17 either. Walking out of that hospital in Tucson on that late August day, I knew that my life had fundamentally changed.
I don’t know what caused her death. I refused an autopsy; I didn’t want my baby being cut up like a science project.
Knowing what I know now, I believe her death was related to a lack of oxygen due to a cord accident.
Sarah never cried, opened her eyes, or moved on her own.
Making the decision to take your child off of life support is heartbreaking.
Making that decision at 17 changes the trajectory of your life. I had no life experience to draw from. My parents only advised, but did not make this decision for me. I alone chose and therefore changed my life forever.
While I miss wanting to know who Sarah could have been over these past 28 years, I am happy with the person and parent I am today.
I went on to have four sons, a (step) daughter, and one granddaughter (so far!) and they have truly been the lights in my life.
In them, I see who Sarah could have been, what she would have been like. Like her siblings, she would have been an amazing human.
August 22 is Be an Angel Day.
Every year, I ask my friends to do one random act of kindness in Sarah’s name on that day.
It helps me to know that people are thinking about her and doing good in her name in the world. I’ll ask you all to do that next year through.
I’m R and I’m transgender. I’m also the youngest kid in my family. I’m quiet, and my older sibling, L, is not. We are both a lot alike and very different.
I didn’t have a name for how I felt; I just knew I was really unhappy the older I got. I hated the changes puberty was causing. I wanted it to stop. But, I’m quiet and I didn’t say anything. I doubled down on skirts, on leggings, on purses, whatever I could do to be more girly. My mom loved it, so I kept doing it, but I grew more unhappy. I lied about my favorite anime characters, saying I liked girl characters when I was drawn to male characters.
And then, a couple years into this struggle, when I finally had a name for who I was – I am transgender.
L came out to my parents as being transgender and I felt screwed over.
If I disclosed now, my parents would think I was copying him.
So, I dressed even more girly and grew more depressed.
L was immediately accepted. His entire wardrobe of girl’s clothes went to me or were tossed. He got boys underwear, boys jeans, everything a geeky little guy could ask for. I still hammed it up, letting my mom put makeup on me, do my hair, whatever I could do to embrace being female,
It was awful.
I did it anyway, lasting a year and a half into L’s social transition before my mom helped break through my barrier. She guessed, but unlike L’s instant transition, my mom wanted made me to wait an agonizing six months to come out, even though I, too, got a new wardrobe and haircuts that grew increasingly short.
I came out to my extended family as gay first.
It wasn’t quite right, the gay label as a girl, but it let me be out, partially, at least.
Trying to figure out who I was and my sexuality at the same time was torture. I told myself that I must like girls in that way, but I didn’t.
I want someone to partner with, but I was also figuring out that I was asexual. The asexual part was the easiest. I really needed an easy thing at that point.
I tore myself up over being trans, being gay. I felt so alone.
I was more depressed than ever. I still got called by my girl name and it made me sick each time I heard it and saw it.
My mom saw the despair, and four months after coming out to her, I took my new name and came out to my whole family and friends.
My brother and I never said a word to each other during the years we were suffering and trying to figure out what was wrong. We share a room, and both of us are blown away that each night for years we lay in our beds and agonized silently. If one of us would have taken the leap and shared, we could have suffered less.
We knew our parents were LGBT allies and supported one of my mom’s students who was also transgender.
Scared to say the words aloud to ourselves. To each other. To our parents. To the world.
We saw the agony that my mom’s student was in, that moving hours away to an LGBT friendly place was the only way to live openly.
That’s why trans visibility is so important.
Acceptance is essential.
My brother L and I are transgender. We are at peace with that knowledge because we are accepted for who we are. We are supported. We will, in the future, medically transition.
