Testing: A Huntingtons Disease Story

It’s raining today. Normally I would love the rain, but today it’s only in my head. The skies are clear and the sun is peeking out through patterned, white clouds over a perfect 75 degree morning. I can’t see it today though.

Instead, I’m racing through the puddles in my mind while the rain keeps pouring, beating down hard on my face while I try to find a cover.

I never do find it.

Well, not at first. I had been praying about this day for as long as I can

remember, and it’s finally arrived in the form of  a dark cloud that lingers

over me.

Today, I would get my test results.

The phone call I had received the night before was enough to make the clock spin backwards, like time was just a figment of my imagination  that didn’t really exist. I get in my car to head off to my daily workout spot, worried but still hopeful. I knew that today would change my life forever.

I’m blaring my worship music, singing at the top of my lungs so that maybe God would hear me and give me the results I had been asking for, even though only a week had passed by since I had asked Him to deal me whatever hand would bring Him the most glory. This morning, I wasn’t so sure.

And then for a moment, I felt that Holy peace that surpasses all understanding, and I knew I had to move forward.

I don’t get much done at the gym. It’s hard to concentrate when it’s storming in your head.

I get home to pick up my dad, who I knew would walk with me through the hurricane that was about to set in. He had always tried to keep me from this, promising that I would test negative no matter what. Sometimes I believed it, but most of the time I felt an inevitable sense of bitter providence lingering over the subject. I decided to get tested in the first place because I knew I was crazy. No matter where I went I always had a dark cloud lingering over me, filling me with anxiety, guilt, depression, and apathy. It’s not like normal people you meet, either. Paranoia has haunted me for as long as I can remember: the completely irrational make-ups of things that could never be true…and I could never seem to shake it. It’s always felt like my soul was bouncing around, trying to find some place to rest, to see life through the eyes of beauty again.

But I knew part of me wanted to take this test so that I could have an excuse for my manic self-harm…so I could say

“Look! It’s not my fault that I want to lay in bed all day. It’s not my fault for missing out on a satisfied soul.”

The ride to the hospital is quiet. My dad and I listen to upbeat music, smiling for the sake of pretending that nothing bad could ever happen. I can tell he’s more worried about it than me, and I tell him to be strong no matter what the outcome is. And I promise not to cry.

The wait at the doctor’s office is short. If I had ever muscled up last-minute courage, it would have been the moment my name was called back.

We’re lead into a room that looks more like an office than a room for a patient, and no sooner do I step through the door frame when I see the doctor look up and say

“It’s not good.”

I hadn’t even sat down yet, so I figured that what he had just said was a figment of my loud imagination. For the next five minutes, all I can hear is that noise that the teachers make in the peanut episodes. I was listening, but not hearing.

The storm is getting louder. Thunder is ringing in my ears, which I soon realize is the pounding of my heart when I look over to see my dad sobbing. Then the doctor says

“There’s nothing we can do. Good luck.”

I’m not crying. I’m smiling, telling him to have a good day as I get up to

leave. My dad’s arms are wrapped tightly around me, and as soon as I step foot out of the door, I collapse in a heap, letting the rain in my head spill out of my eyes and onto the cold floor. People are staring. My dad picks me up and carries me out.


One word.

One word that changes my life forever.

It’s like the word itself gave me the disease, even though I know it would have been eating away at my brain even if I had never been tested. It’s killing me to think about my favorite verse, the one that talks about me being woven in the depths of the earth in an intimate whirlwind where God had fashioned me in secret, writing out all of my days before any ever existed. And when he was creating me, fashioning my form limb by limb, he had created me with a life-crippling disease. Suddenly, the verse I had loved and cherished became a curse, shoving the intimacy that only God could have with one of his children worlds behind me.

The rain stopped.

In it’s place, thunder roared. Lightening struck down the tall trees I had been growing ever since I was a child- the ones that grew on dreams of marriage, children, and growing old with my husband. The idea of disappearing depression and a past of paranoia came uprooted by a flood that swept in, clearing away the debris and any other traces of hope that could have been left behind.

The worst was not behind me. It would never be behind me. My brain would only continue to decay until my body went with it.

I am afraid.


Angry at my own body for turning against me. Why can’t I stop it? It’s MY brain! MY body. I can control it. I don’t have to become a monster and hurt everyone I love. I can force it.

My body is now a cell and I want out. Rain. I can’t think straight. Thunder. My heart is bursting. Lightening. I am afraid. I want out. Get me out. God, get me out!

“You won’t get it.” My dad’s rambling has snapped me out of my state of desperation. “You can’t. They’ll find a cure.“

My eyes attempt to blink back the flood of tears that keeps flowing. “Even if they do, they won’t be able to reverse the brain damage I already have,” I reply coldly.

"What brain damage?” he chuckles. “Sweetie, that’s all in your head.”

Okay, I think. It doesn’t matter. No one is ever going to be able to understand this battle that I am so ill-prepared to fight. God himself has dealt me a cold, bitter hand, leaving me in a desolate land to struggle alone.

The hardest part has not even arrived yet. I have to tell my friends, my family. My best friend is waiting for me now, knowing what I am facing today.

The car parks. My dad leaves. Cam and I walk in silence for a while until I fall into his arms, soaking his white shirt like I promised myself I wouldn’t. My heart is breaking for him. I would be in a much worse state right now if our roles were reversed.

Our relationship is more intimate than I care to write about. Some parts of us are so close to my heart that I want to keep them all to myself. But he gets me. And willingly, he suffers with me.

I see Jesus in him. I don’t want to today though. Today, I want to put everything I feel above any truth I’ve ever known. I feel forsaken and I wanna live like it.

I spend the next few weeks in a depressive solitude, a dream-like state that sends me deeper into a mind frame that labels me hopeless.

And it’s funny, I think to myself, how the only thing that’s changed is my awareness. I was born with this disease, but only now do I know for sure, and there is no such thing as forgetting at this point.

The only thing left is surrender.

To what? This monster of a disease?


To Christ.

I think back to the verse that made me so angry when I first received my positive test result. Psalm 139:

“For you formed my inward parts,

You knit me together in my mother’s womb.

I will praise You, for I am fearfully and wonderfully made.

Your works are wonderful, and I know that full well.

My frame was not hidden from you when I was made in the secret place,

woven together in the depths of the earth.

Your eyes saw my substance, being yet unformed, and in your book they

were written, all of the days numbered for me, as yet there were none.”

And I remember that I am not my own. I did not create myself, and have no right to shake my fist at my own creator.

And I remember praying to God when I was younger, saying

“If you are strong when I am weak, then make me the weakest of them all.”

I am weak.

My mind is wasting away.

But God is strong.

Maybe this whole thing is a blessing. Not many are given trials similar to this, so perhaps God has set me aside for a special purpose. The ability to glorify Jesus has been the most special, intimate gift I have ever received, and I’d like to think that my path has always been paved to point to him.

A gift.

It’s hard to think of a disease that’s always had a negative connotation as such, but in order to survive it’s my only choice.

I have no idea how this is going to work, what I am going to do, or if I’ll still feel this way five minutes from now, but in this moment, I receive strength.

No one else has ever walked my exact path, and no one ever will.

I know this life is going to be difficult. I am aware that there will be days when I lay in bed all day, crying over my fate. Suicide will always be in the back of my mind, but I will continue to pray. Anxiety, depression, paranoia, and apathy will only worsen. It will only get harder, but I am not alone.

I am weak;

He is strong.

I am a sinner;

He is holy.

I am afraid;

He is my strength.

My life is fading away;

He is outlining me day by day.

I have Huntington’s Disease,

but I am first and foremost



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  1. Sarah 29 February, 2016 at 09:09 Reply

    A friend shared this on my timeline. Thank you for this. So much. My heart aches for you. Your post has brought back memories of my own experience of getting tested for HD, where I prayed for the first time, hoping to get a way out. I am negative. But that changed my life–my faith in the Lord began with being faced with reality at age 19. And my Dad came with me too. My mom lost a painful battle to HD but it didn’t take her faith. She remained faithful until the end–the strongest woman I know.. and it was a hard road for her (a big part in the beginning was that she didn’t know she had it until family started to figure things out for her–actually was even unaware that she was at risk, didn’t know what HD was at the time). Out of 5 children, my brother is now fighting it. I will pray for you to remain as strong and faithful as you have expressed in this post. Also, this past year a glimmer of hope has arisen for those faced with HD. There are clinical trials taking place right now in Canada and the UK and also Germany, they believe they are on the edge of a cure–even one that can repair damage already done. I pray for my brother everyday in hope that he will not miss it, but I am thankful that either way, his heart is in the Lord’s hands, and he is a child of God. Life continues to take from him. I wish I could encourage you, I am on the observer’s side–the one who didn’t get it, the one with family affected, and so you can look at me as “what does she know?” and would be right in so many ways. So, I will pray for you, it’s clear to see that you’re already a light in the darkness, praying for strength in the days, weeks, months, years ahead. God Bless.

  2. Dawn Harry 29 February, 2016 at 17:03 Reply

    We must Never lose hope Leah,
    I tested ‘positive’ to the ‘mutated gene’ 10 years ago nearly, and although I felt the exact same feelings of just knowing I had it because this and due to that, and all the other self distucting criticisms… …10 years on I’m professionally diagnosed as still non symptomatic. (Which I doubt on every visit) but it is true.

    It’s a rocky road once you know in some ways, but you do learn that knowing allows you to let yourself off the hook, forgive yourself your failings, your insecurities, your weaknesses, and in time you can emerge stronger than you ever imagined.

    Never give up the hope you feel you lose in actually ‘knowing’ there are great things going on right now, there are genuinely good Neurologists doing their upmost best to find a treatment or cure for HD,
    Dr Ed Wild in the uk founder of HDbuzz is one of them, watch him talk on YouTube he is quite mesmerizing…
    …the truth is that we are really so very very close, I believe Dr Ed Wild says any scientist or neurologist or researcher who gets involved with HD never leaves, so passionate do they become on meeting our HD families at risk in finding a treatment or cure, and very many of these guys get awarded funding for their research so they are definitely not in it for the money!


    This will be available to us in the next 5 years and is working, it’s hard to believe after for me 35 years since my mum was diagnosed when I was 13, that it may be possible to live our lives FREE of HD even if you have the gene ❤️😘

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