I Never Thought It Would Get Better, Either
By Leah Amberly Barker
So, this is hard for me to write about. Like really, really hard. My fingers literally try to curl up every time I go to hit a letter on the keyboard.
I need you to hear me out, though. I am writing this for you. The you that is hurting, feeling hopeless, worthless, unloved, alone, and stuck in one place. Hear me out.
A little more than a year ago, I sat alone in an old motel room, rolling a bottle of pills in between the palms of my hand. I can’t even recall the specific events that led me there, but I do remember exactly how I was feeling and exactly what I was thinking.
This will be my first time putting all of those emotions in one place. Or most of them, at least.
The most distinct emotion I remember was hopelessness. I couldn’t see a future in anybody or anything. Usually, if I’m depressed, I’m able to rapidly search my mind for something lovely to cling onto, and eventually, it helps me pull myself out. This time, I couldn’t find anything to cling onto at all. Everything in my head was just … black.
I sat on the musty motel mattress for hours, listening to music I remembered as being my favorite and trying to justify what I was about to do.
I remember thinking that having HD was going to ruin my life. I wanted to have complete control over my brain, and just knowing that I would have to lose myself someday left me feeling like I wasn’t a legitimate human being. And it wasn’t even myself I was mostly worried about … it was the fact that in losing myself, I would probably end up hurting the people I loved the most.
My grandfather was the sweetest man I’d ever met until he got sick. When he did get sick, I’d hear stories about how he’d threaten my grandmother and throw things at her. He began to suffer from extreme paranoia, convincing himself that my family was plotting to kill him. I never got to see him during his rapid progression into HD, but I remember thinking that I was terrified to see him when we finally got to visit. He was really sick by that time, unable to care for himself, twitching, falling, mumbling, and unfamiliar. He wasn’t the big, strong, caring papa I remembered, and the last memories I have of him are the suffering circumstances that HD threw him into.
As horrible as it sounds, I was terrified of turning into him. I have so much love to give, and it crippled me to think that I might degrade into a paranoid, angry, abusive stranger … as unintentional as it may be. I didn’t (and if I’m being honest, don’t) want to be a burden to anyone, emotionally or physically.
And if anybody loves love, it’s me. Sitting in that motel room, I thought about how badly I wanted to fall madly in love, get married while watching the sunset, pop out a whole litter of children, and grow old with the love of my life, but anyone with HD knows that it’s not that simple. My husband would eventually end up as my caretaker. He might end up really lonely while I’m sick, burdened emotionally, physically, and missing me while I’m still alive. And I have the risk of passing HD down to my children if I’m unable to afford fertility treatments.
Not to mention, I had already been suffering from debilitating depression and anxiety for years, and I couldn’t fathom those parts of my brain degrading even more, becoming worse and worse over the years. Oh, and while that’s happening, toss in some memory loss, paranoia, agitation, and whatever else my own body decides to throw in.
The only pro that I had on my list was my family and friends, but at the time, they just weren’t enough to stop me.
It’s not that I didn’t love them. On the contrary, I loved them more than anything. People HAVE to stop with the notion that suicide is selfish. Can it be? Well … sure, anything could be considered selfish, depending on how you look at it. Most of the time, though, people who commit or attempt suicide are suffering from one mental illness or another, which inhibits them from thinking rationally. In my case, I genuinely thought that my loved ones would be better off without me because I wouldn’t have to burden them.
In my head, I believed I was doing everyone a favor, including myself. It was a win-win. I absolutely, positively could not see any other way. I needed the hopelessness and despair to end. I was tired of being depressed. I was so over feeling alone.
I remember barricading the motel room door with a dresser and securely locking all of the deadbolts. The Discovery Channel played silently in the background as I emptied the first bottle, the second bottle, and then the third bottle onto the TV stand, crushing them one-by-one and mixing them together in a pile. I created a funnel from a piece of paper and sifted the mixture into a bottle of beer, swirling it around for a bit until everything dissolved. I begged God to please forgive me, told Him that I loved Him and to take care of my family, and then downed it.
Fast forward 16 months. I’m still here.
And, can I just say, thank God.
After getting out of the hospital, I felt like a baby deer trying to stand up on its wobbly legs for the first time (although the deer probably mastered walking much faster than I did).
It took time, as all good things do.
Ohhhh, that time went by so slowly, but now, I’ve got more to look forward to than I’ve ever had before. I’m in a place that I firmly believed did not exist during those dark times.
I’ve found someone who loves me with all of the baggage I carry along with me. He doesn’t have any mental or physical problems at all, yet he still does his very best to understand what I go through. He knows about HD and what may be to come, but he loves me enough to stick by my side through it all. I know he’s afraid, but he stays and loves me anyway. It blows my mind (in a good way).
Have the fears I had about HD gone away? Of course not. I think about it every day, but I figure that I may as well love the hell out of someone as passionately as I can in the meantime. I’ll love him hard enough to pierce through his memories of me in the future, when times may not be so good.
And I’ve been loving my family, friends, and everyone I can in that way, too. It feels so much better than being lost in your fears.
I have a great job, a beautiful home, and people who love me. I mean, it’s not perfect by any means, but it’s proof enough that amazing things can come from your hopelessness. I still suffer from severe lows and short-lived highs very often, but I’ve slowly been learning how to deal with it better. It doesn’t necessarily get easier, you just get stronger.
Yeah, I know, it kind of feels like you’re reading repetitive advice from some cliché writer, but if nothing else, just know that I’m all too familiar with your struggle, so you’re not alone. I never thought I’d get out, either.
Getting my life back was one of the hardest things I’ve ever had to do, but I’m here now… in all of my messy, clumsy, love-crazy, insecure, depressed, happy, struggling glory. I’m here.
You can be here with me, too.
If you or someone you know is considering suicide, please call the national suicide prevention lifeline: 1-800-TALK (8255).
This article originally appeared in Leah’s blog, “Capturing the Corners.” You can read more of her articles here: http://capturingthecorners.org/welcome-home/
According to the National Institute of Health, the rate of suicide, suicide attempts, and suicidal ideation among people with HD far exceeds that among the general population.
“Suicidal ideation in Huntington’s disease: The role of comorbidity” reports that in the study conducted by the authors, 26.5% of patients in the study reported suicidal ideation, compared with 3.3% in the general population. “In a subsample with the greatest suicidal ideation, alcohol and drug abuse were also predictive.” Completed suicide in HD has been reported to be as high as 13%, a seven- to twelve-fold increase above that of the general population’s suicide rate of <1%, while 27.6% of individuals with HD reported at least one suicide attempt. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3790459/)
To learn more about suicide risk factors and civil liability, please visit this link: https://www.hoganinjury.com/suicide-risk-factors-and-civil-liabilities/
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She Will Dance
She Will Dance
by Leah Amberly Barker
One of my best friends bravely decided to get tested this year, and she ended up testing positive. After she shared the news with me, I began feeling angry, bitter, and depressed, but I chose to fight it in the form of poetry, and this was the result.
The poem’s title is fitting, as the harsh physical symptoms that set in are called “Chorea,” which is Latin for dance, as the non-stop twitching mimics.
This poem is for Anna, who waited 49 days for her results. It’s for everyone who battles with Huntington’s Disease. It’s for everyone who battles with mental illnesses, which I am all too familiar with, as it is written in my DNA.
This is “She Will Dance.”
She moved mountains the day when she made her choice.
In her 50/50 chance, she has been searching to find her voice.
Forty-nine days goes by faster than she had hoped
And the clock on her wall ticked louder and louder the faster that day approached.
For months, she pursued a hope that ran faster than her thoughts
But it became stuck within the endurance of time racing on her clock.
In sleep, hunger, and happiness, she quickly became deprived
And she couldn’t quite form a word for what she was feeling, but it was utterly close to terrified.
As certain as the flip of a coin, her future was unfolding
Forty-nine days goes by too fast, and she thinks back to what the genes in her dad could possibly be composing.
She looks into his eyes and sees the guilt that he tries to hide.
This disease will either take them both, or leave her with an undeserving remorse that she will also try to disguise.
The clock on her wall finally led her to this day.
Her lover grasps her hand in his, stronger than he was yesterday,
And she holds firmly in the other hand courage, unaware that it will never fade away.
But the doctor’s head hangs low, and her head starts to spin
As he apologetically claims “Positive,” she feels like a stranger in her own skin.
She doesn’t know that the tears she will shed represents the emotion embodied in thousands,
Though she feels weak, she will heal and move mountains.
Though she feels alone, she is unconditionally surrounded.
Though she feels afraid, she still grasps courage in her hand.
Though she feels like she is drowning, her feet are firmly planted on dry land.
She walks out the door with her head hanging low.
“Sweet girl, there are flowers blooming inside of you, and there is so much you don’t know.
The seeds that you planted long ago will now flourish more forcefully as you continue to grow.
You’re a fighter, a lover, a daughter, a friend,
And your purpose in this world does not change now-it begins.
Take my hand, and I’ll show you. I’ve been there before.
You can be the solid land, and I’ll be your shore.
You’re not alone, and above all, I want you to realize
That after the long shadows of night bring tragedy, there is a breathtaking sunrise.
It will come.”
And she heals herself, taking it day-by-day; with each breath, she’s revived
And the scars left behind show what she’s been through-and survived.
Though she is small, her sickness makes her a force to be reckoned with.
She knocks down every roadblock, and her target, she will never miss.
Though someday she will be robbed of her body, her mind, and her smile,
She will take back every minute of it, and make every movement worthwhile.
Her twitching, her falling, her spinning and her prance-
She will refuse to call it disease, so she names it her dance.
And dance she will, until her very last breath.
Her choking will be called singing, and relaxation will be the name of her brain’s death.
She embraces it now, and holds on to her hope.
The tears in her eyes will only show her soul’s kaleidoscope.
Look out world, because she will take every chance
To spread love, move mountains, live fully…
She will dance.
Listen to Leah perform her poem live here.
Leah says, “This is my first time performing live, so please excuse my nervous habits and the shaking of my voice.”
You can follow Leah’s blog, “Capturing the Corners,” here: http://capturingthecorners.com/about/
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