In the Shadow of Huntington’s Disease: “Will You be Tested?”

Huntington's Disease

[1]

A 50/50 chance.

They say that how you see those odds determines if you are an optimist or pessimist. Do you see the glass as half-full or half-empty?

But I think that maybe it is better determined in context.

If you had a 50% chance of winning an all expense paid trip to Hawaii, you’d likely see those odds as good. But if you had a 50% chance of being hauled away to live as a North Korean prisoner of war, those odds probably wouldn’t seem as inviting.

A 50/50 chance.

That is the likelihood that a child will inherit Huntington’s Disease from a parent who carries the gene.

(See related post In the Shadow of Huntington’s Disease: “How’s Your Mom?)

It’s simple genetics, easily mapped out on a Punnett square along with Gregor Mendel’s pea plants in High School Biology. If a parent carries a dominant gene, their offspring has a 1 in 2 chance of inheriting that gene. Blue eyes, red hair, sickle-cell anemia – it’s all the lottery of genetics.

When I share my story of Huntington’s Disease – the pain of my mother’s life and the loss of my sister’s – a natural question surfaces in the minds of most engaged listeners.

“Will you be tested?”

Believe me; if the roles were reversed I’d want to know too.

It seems to me that this question most often develops out of a healthy mixture of curiosity and concern. In a way, it’s a compliment. Its asker listened closely, pieced together the details of the story and realized that, because it is inherited, Huntington’s Disease is a real threat to my future also.

But few who ask the question can possibly imagine all its implications.

There are a million reasons to fear the unknown – just ask the glass half-empty pessimist. The future isn’t guaranteed to anyone, but growing up under the threat of Huntington’s Disease, the promise of the “good life” is narrowed by ½ right from the start. While others might dream of what could be, the at-risk person lives in hope of what won’t. What others may see as a rite of passage has the potential to feel more like begrudged surrender for the at-risk person, as if time is dragging them forward to a place they likely don’t want to go. And as the years pass, it is only a triumph of cognitive dissonance or of unflagging faith that allows the at-risk person to pursue or succeed at anything.

Consciously or not, living under the threat of Huntington’s Disease shapes your identity. Unchallenged, the threat can easily persuade you that you are damaged goods; that your potential demise reduces your value and that your future is a liability.

By the time I was in 5th grade I had done the math; I understood my own risk for developing Huntington’s Disease. Even then, I knew that this disease threatened my death, but it was only as I grew older that I began to see that it was also a threat to my life. As my childhood rounded the bend toward adulthood, I was compelled to recognize the full array of issues my genetic code could produce. The unavoidable questions that surfaced were daunting, but their answers were even more intimidating.
– “After High School, should I attend college?”
– “It could be unnecessary, because life as a nursing home patient certainly doesn’t require a degree.”
– “I have a new job, should I invest in a house and plan that vacation?”
– “It could be unwise, because health care costs sure rack up when you face a quarter century’s worth of care.”
But the heart of the conflict lay in relationships.

– “I’ve found the man of my dreams, but should I marry?”
– “It could be tremendously unfair; can I reasonably expect another person to risk their future on me?”
– “And if we marry, will we have children?”

This was the real question. And the one I often sensed was the question behind the question of “Will you be tested?”

[2]

I was still a teenager the first time a relative stranger told me I should never have children.

I was visiting my Grandmother one day when she asked me, as she often did, to run a quick errand. Without much thought, I drove myself two blocks to her friend’s house, thinking I was simply going to return a borrowed book and head home.

I knocked on the door of a quaint little house on Ohio St. and was quickly greeted by Mabel. In keeping with her small town hospitality, she invited me in and offered me a drink. Respectfully, I accepted and we chatted about the weather, our families, and the book I had returned.

When I politely made my leave, she walked me to the door, giving me a final farewell from her front porch as I walked the short distance back to my car. It was then, almost as an aside, that she added “You know you really shouldn’t have children. We’ve got to put an end to this disease.”

I was taken aback by her bluntness, but her sentiment didn’t surprise me – nor even offend me. Since I was 10 years old, I had understood the responsibility I carried: as a potential carrier of Huntington’s Disease, my genetic code could shape the lives of the next generation. I knew I might hold the power to proliferate or prevent the inheritance of Huntington’s Disease.

And I could appreciate why she felt compelled to say what she did.

Mabel was my Great Aunt, the oldest sister of my Grandfather on my mother’s side.  She was one of four siblings who eluded Huntington’s Disease in their family of eight children.  Likely in her 80’s by the time of this interaction and a product of a “do what needs done” World War II era, she had been audience to four generations of Huntington’s Disease.

I had tasted only a measure of the heartache she had, yet I clearly understood that there exists a limit to the amount of suffering a person can watch before they become desperate to make it stop – particularly when it is in your own family.  And since no cure for Huntington’s Disease exists, the only other option was prevention.

I didn’t feel offended, but I did feel deflated. My life felt hemmed in from both sides; I felt like I was being crushed between the reality of what was and of what might be. I had grown up watching the effects of Huntington’s Disease rip through my own family, and now as a teenager with the faintest hint of freedom on the horizon, I was smacked again with my 50/50 chance, the 1 in 2 odds that my future held any escape. It was a reminder that for me, reclaiming normalcy in the future was disallowed.

Still, I wanted to do what was right; I wanted to be responsible with my life and my future. I understood that there are things bigger than me, things that are more important than my own life, things that deserve, and even demand, personal sacrifice. I didn’t want to cause more pain, and I didn’t want to be a burden to those who loved me. The logic that said I should not have children – at least not without being tested – seemed reasonable. I wanted to agree; I wanted to be on the right side of this choice.

But I felt deeply conflicted.

I don’t believe the advice to not have children was given to hurt me – in fact, I think it came from the desire to protect – and yet, the message I received left its mark. In my heart her advice was amplified to its harshest extent, telling me “You were born out of irresponsibility and ignorance. Your life was a mistake.  You are here now, so don’t make things worse and repeat that mistake. You don’t deserve children, and your children don’t deserve life – none of you are worth the risk or the pain.”

I couldn’t agree with her advice, because to do so would be to assent to my own worthlessness, but I couldn’t disagree with her advice, because to do so seemed like selfishness.

Against the backdrop of looming uncertainty, this issue became one more complexity that seemed to lack any reasonable answer. It served only to fortify my sense that I was a liability to everyone else. My recourse became to hide what felt shameful from those who didn’t know my family history and to work to prove my worth to those who did, including me.

[3]

I was 26 years old when I was tested for Huntington’s Disease.

Until that point, I had found ways to manage – or at least mostly ignore – the uncertainty of my future and this disease.  I lived with it, because despite the fear of a potentially bad outcome, there also existed a potentially good one.  As long as I didn’t find out if I carried the gene for Huntington’s Disease, I could also live with the hope that I didn’t.

But the older I got the more it felt like my life was in a holding pattern; fear held me back because to move forward was to tempt fate.  Every time I stumbled over my own clumsy feet or felt my body jerk or twitch for no apparent reason I was bombarded with fear, terrified that I was witnessing the first signs of disease taking over my body.  Anxiety engulfed me, and the stress of not knowing became more overwhelming than the thought of losing hope altogether.

It was time to find out.

It took me a few months to find the phone number for the doctor’s office and a few more to work up the courage to call it. Once the appointment was set, it was still a few months before I could be seen.

As I waited, I was forced to consider how the definitive result of this test would change my life. Positive or negative, once I knew there would be no going back, and either way the result would disrupt the norm that I had built my life around. I began to realize that this test would challenge all that seemed real in my life, leaving behind only that which was real – and I feared I might not like what remained.

If the result was negative – if I did not carry the Huntington’s gene – the pressure would be off. There would be no more reason to fear my future with this disease. My husband and I could finally embrace the natural progression of life without a sense of doom infiltrating every decision and every advancement.

Yet I needed to be prepared; a negative result would be cause for celebration, but it would also bring disorder to my world. It would create a shift in the family dynamic as I would become one step removed from the pain of my mom and my sister. A negative result meant I would lose a closeness that exists only in shared suffering, a closeness that I would miss in some of my most beloved relationships.

If the result was positive – if I did carry the Huntington’s gene – then my future would be confirmed. I would inevitably develop Huntington’s Disease at some point in the future, and somehow I needed to be prepared to accept it.

Not only that, I needed to be prepared to accept how it would affect my relationships. I knew that a positive result would test my marriage, my family, and even my friendships – I knew this with certainty because I had watched it all happen before.

I was so scared.  Huntington’s Disease held the power to destroy my world.  Either test result would redefine my reality, and I feared that it might reveal I had been living in an illusion.  I was terrified that it would expose as false the love that I depended on to be true – including the love of God Himself.

As a teenager I had memorized Romans 8:28 and it had become an anchor for my life: “And we know that in all things [God] works for the good of those who love Him, who are called according to His purpose.”  I had returned to this promise countless times, sometimes in an attitude of peaceful reflection, but more often through the blurred tears of a broken heart.  I understood that God’s “good” for me did not mean that I always got what I wanted – life had removed that expectation long ago.  Rather I knew that God’s “good” was supposed to be the very best for me, the ultimate good for my life.

In my mind these words were true, but in the face of something I feared so much, I wasn’t sure my heart would trust Him.  I wasn’t sure that if this test revealed that I was destined to live and die with Huntington’s Disease, that I would still believe that God was good and that He loved me.   What’s more, I wasn’t sure I could trust a God who claimed that Huntington’s Disease was for my good, because to me it was the exact opposite.

And if I couldn’t trust God despite a bad result, why bother trusting Him even with a good one.

As the months passed and the actual appointment drew near, I wrestled with God and I wrestled with myself.  Few questions gained any clear cut answers, but as I entered the doctor’s office for the first time, there was this: an awareness of One who faithfully holds on to me when my faith is letting go.

[4]

After months of waiting, the day of my appointment finally arrived – August 21st, the day before my 26th birthday.

This sort of genetic testing is a process.  It is not simply one doctor’s appointment, but rather it requires three separate appointments that must be at least one month apart.  It is purposely designed to be a slow process; it is designed to help you stop to consider exactly what it is that you are doing.

My first appointment in August was for evaluation and counseling.  The doctor spent about an hour with me and my husband.  She began by detailing the testing process and then administered a standard set of tests constructed to quantify my abilities at that moment.  These tests measured things like balance, memory, and reasoning.

Most of the tests felt more like Facebook quizzes, and as I completed each one my nervous laughter and bad jokes filled the awkward space between us.  The first few times I forgot and asked how I scored – I wanted to know if I had won, but of course, there was nothing to win.  These tests were assessments that could be used in the future to measure me against myself.  If I should test positive for Huntington’s Disease, these tests would serve as a benchmark for later evaluation, allowing the doctor to monitor the progression of the disease on my mind and body.

The second half of the appointment was more like a psychological evaluation.  She asked me and my husband private, probing questions, challenging us to examine all the implications of learning the results of this genetic test.  She wanted to be sure we had considered how this knowledge would change our lives – even now, before I showed signs of disease.   She questioned our marriage, our support systems, and our emotional stability.  Her intention was clear and her attitude was purposeful; her goal was to push us to fully confront every aspect of this decision.  As the appointment came to a close, she left us suggesting we wait, that we further weigh this course of action before moving forward in the process.

That was her job, one I respected and appreciated.  She was attempting to expose any lack of forethought so that we might be protected from our own ignorance.  But by this time, we had done all the thinking there was to do.  It was time to find out, and we scheduled the next appointment before we left the office.

My second appointment was in late September.  Considering the years of uncertainty and the months of anticipation that brought us to this point, the appointment was altogether anticlimactic.  I didn’t see the doctor, but instead was sent directly to the lab.  There, a practiced nurse drew my blood in less time than it took for me to confirm my own birth date – a nifty trick she employed to distract me from the needle’s prick.  We were in and out in less than 10 minutes.  That was it.

My third appointment was in early November, two and a half months after the doctor had first warned us to reconsider.  I remember the day; it was unseasonably warm, a beautiful remnant of summer in the last days before winter.  I had gone to work that morning, but left at noon to pick up my husband before heading to the doctor’s office.  We didn’t bother to stop for lunch because my stomach was in such a knot that the very thought of food was resolutely rejected.

But I remember the sky, it was an opulent shade of blue – pure and crisp – and it was filled with perfectly white puffy clouds.  As we drove, the windows down and the warm breeze on our skin, I remember feeling that despite my unparalleled apprehension, this day was for me.  It felt as if creation was ready to celebrate and it just couldn’t wait another minute.

We arrived at the doctor’s office, checked in and took our seats in the waiting room – just as if we had come to be seen for a sore throat or an ingrown toenail, but unlike other waiting rooms, this one was filled with people who shared a similar experience and carried similar concerns.  Following standard cultural procedure, we all avoided eye contact, looking to our phones or magazines for distraction.  But interaction was unnecessary to affirm our unspoken camaraderie, because few people in the world would understand this experience as well as the person sitting across from me staring blankly at US Weekly.

Eventually my name was called, and we dutifully followed the nurse to an exam room, enduring our final moments of innocence in tense solitude.  When the doctor arrived she was forthright.  She understood the anxiety and anticipation of this moment.  She knew the courage it took for us to be there, seated across from her, waiting for the life-changing news she held in her unassuming, green folder.  She greeted us and got straight to the point, saying “Robin, you are negative for Huntington’s Disease.”

I was negative.

Relief.  That is what I felt.  Relief paired with the growing giddiness of a wish come true.   To say that we were happy is a dramatic understatement, but there was no ostentatious display of emotion; no screaming, no dancing, I don’t even remember crying.  It felt instead as if I had been living choked, fighting to breathe with an invisible cord slowly tightening around my throat.
And then, all at once, there was air.

[5]

I was negative.

I did not carry the gene for Huntington’s Disease and there was no way I could pass it on to a child.  We no longer had any reason to fear the future – at least no more reason than anyone else.  There was no more need to hedge every decision, no more crushing obligation to extreme responsibility, and no more guilt over my own unwillingness to sacrifice dreams.

The proof was in.  I was no longer a liability because of Huntington’s Disease.

This sort of knowledge definitely changed things, but it didn’t change everything and it didn’t change them overnight.  In the days that followed we celebrated – we cried and we threw a party – but it would take months for this news to penetrate the shroud of anxiety that had become a normal fixture of my mind.  And it would take years before it would help shatter the lies that had taken root in the recesses of my heart.

I was negative for Huntington’s Disease – I was free and yet I wasn’t.

The test had proven that I was not a liability; Huntington’s Disease was not going to make me a burden to anyone, and it was not going to put any of my hypothetical children in its cross-hairs.  But what the test result could not confirm was that my birth was worth the risk in the first place.  My chances were 50/50 – I just as easily could have carried the gene for Huntington’s Disease, and caution suggested that my life should have been avoided just in case.

It was only in the final year of Laura’s life that these things began to make any real sense.

Laura was my older sister.  She was 10 years ahead of me and perfectly suited to big-sisterhood.  When I was very young, she was often the one who gave me a bath and read me a bedtime story.  It was Laura who taught me how to ride my bike, how to make a batch of cookies, and how to write my name.  When I awoke from a scary dream in the dead of the night, I just as often found my way to her room as to my parents’, because I knew that with Laura I was always welcome.

When she got older and moved away from home, Laura made special trips back for my swim meets and volleyball games or to go skiing in the winter.  She taught me about make-up, took me prom dress shopping, and arranged more than one girls’ movie night.  Laura was a patient teacher, a loyal supporter and a faithful friend – she was my big sister.

About the time I graduated High School – when she was in her late 20’s – Laura began to show signs of Huntington’s Disease.  Her movements became oddly abrupt and increasingly clumsy, her speech became slightly stilted and her normally sharp senses began to dull.  No one needed to point these things out to her, because Laura knew better than anyone just what was happening.  From then it took only eight years for the disease to progress to the point where Laura needed full-time nursing care, and it was only four years after that when Laura died.  By the standard of Huntington’s Disease, Laura went entirely too fast.

Yet even in disease, Laura was my big sister.  As long as it was in her control, she never missed a birthday or a family function, and she faithfully continued to show her support in the ways she could still manage – she taught me how to pay bills and balance a checkbook, she purchased cookie sheets and laundry baskets for my first apartment, and she courageously walked the aisle at our wedding despite the untamable movements that made it impossible for her to stand still on stage.
Laura was committed to those she loved, and she modeled her priority by being consistently present in lives of those she loved.

Watching Laura slip away, deeper and deeper into disease was acutely painful and losing her has left holes in my world that I didn’t realized she filled.  Her story seems so sad, her death has left me grieving, but to have never had Laura in my life –that would have been tragic.

[6]

Laura was my older sister.  We shared the same parents and therefore the same source of genetic information.  She too grew up with the knowledge of her 50/50 chance of inheriting Huntington’s Disease, and she also experienced the process of being tested for it.  But unlike me, Laura’s test result was positive -she carried the gene for Huntington’s Disease.

She was the child that caution avoided.  She was the risk that some suggested wasn’t worth taking.

Yet from my perspective, Laura was entirely worth it.  She was worth the pain I experienced then and she was worth the loss I feel now.  Her end did not diminish her beginning and the pain of her death does not negate the beauty of her life.

But that is not just my perspective, it is the truth.

The last year of Laura’s life was exceptionally hard.  She had suffered a severe case of pneumonia in the fall and although she had recovered by Christmastime, her body remained weak and her desire to meet Jesus was strong.  Her accelerated decline was visible; her slow fade into disease had picked up pace and time with Laura was growing short.

It was during this time that I was preparing to lead a Bible study on the book of Genesis.  I was excited to dive into the content of the study, but the author was new and unfamiliar to me, so in an effort to be a well-prepared leader, I listened to an interview of the author online.

I didn’t approach this interview searching for any personal answers.  I began listening as a skeptic.  I needed to get a sense of who this person was and what she believed, because I was about to stand before a group of women and ask them to follow me into a study of God’s Word, guided by what she had written.  I held a responsibility to make sure this lady wasn’t just plain nuts.

I might not have gone looking for them, but answers to my own turmoil were exactly what I found.  God used her words and her story to begin untangling the mess of confusion that lived inside me.  These familiar truths had long lived in my mind, but this day they finally began to break free into my heart.

The author’s name was Nancy Guthrie, and the interview she had done was primarily in promotion of her latest Bible study.  As one would expect, a good portion of the interview was spent discussing her background, her intention for the study, and her love for the book of Genesis.  But before all that was even addressed, the interview focused on her own story of faith – and that is what grabbed me.

Guthrie shared how she loved the Lord and had walked with Him for many years.  She had married a kindred spirit and they had a son; their life was good.  When they conceived again, they were overjoyed, not in any way expecting the dramatic turn their lives would take.  But when their second baby, a little girl, was born they learned just days later that she had a rare metabolic disorder that would cause her to die before her first birthday.  Guthrie spoke openly about her time with this child – the joy of new life and the sorrow of saying good-bye just a few months later.

My heart broke for this family.  My own baby was only a year old at the time and their loss was a nightmare I didn’t want to imagine.  But her story didn’t end there, it got worse.

Through this journey with their little girl, the family learned that her metabolic disorder was a genetic disease.  It was caused by a recessive gene carried by both Guthrie and her husband.  This meant that according to the laws of genetics, they held a 25% chance of passing these genes on again to another child.  They deliberated over their options, and in the end, chose to take surgical steps to avoid having more children.

Yet despite their efforts, Guthrie became pregnant just 18 months later, this time with a boy.  And even before the little boy was born, prenatal testing revealed that he also would suffer from the metabolic disorder.  His story mirrored that of his sister’s, and he survived only 183 days after his birth, leaving this family to bury yet another baby.

Guthrie did not hide the deep pain, anger, and disillusionment she had felt before the Lord.   She shared transparently how she had questioned God, His goodness, and His purposes in this world.

Her story felt so familiar to me.  The specific details were different, but in her I recognized another who knew fear and had wrestled with God in the midst the pain.  And God had not answered all her questions either, but she possessed a sense of peace that hung on verses I had known all my life:

13 “For you created my inmost being;
    you knit me together in my mother’s womb.
14 I praise you because I am fearfully and wonderfully made;
    your works are wonderful,
    I know that full well.
15 My frame was not hidden from you
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
16 Your eyes saw my unformed body;
    all the days ordained for me were written in your book
    before one of them came to be.

Psalm 139 is one of my favorite pieces of prose by King David.  The closeness he describes with the Creator, and the insight and sovereignty he articulates about God is beautiful and it’s safe.

Guthrie explained that despite her children’s short lives and early demise, these verses reassured her that God had not made any mistake.  He had created them – with disease – for a purpose.  Their lives were valuable to Him and with disease they were “fearfully and wonderfully made.”

(Nancy Guthrie Interview)

And it struck me.  This truth had stared me in the face for years.  I had understood the meaning of the words in Psalm 139, but I had never decided to trust their application: A life affected by Huntington’s Disease is not a mistake – it is not the mistake of a parent and it is not the mistake of God.

It is such a simple concept, yet its implications are nuanced and complex.  This is the truth of a perfect God working perfectly on behalf of imperfect humans who are confined in a world of imperfection.  It is the collision of opposites, the intersection of the illogical, it is a mystery made known only in Christ.

It’s true that all disease is a byproduct of sin; it is all the result of the brokenness we embraced when our rebellious hearts turned from God’s ways.  And yet, somehow God works within the confinement of our broken world, creating life that is perfectly designed to accomplish His purposes in its state of imperfection – even in disease.

Laura was “fearfully and wonderfully made,” her days were ordained by God before “one of them came to be.”  She was designed with Huntington’s Disease by a perfect God.  And with Huntington’s Disease, her life was valuable because it existed to fulfill His perfect purposes in this world.

Laura wasn’t a risk to be avoided.  She wasn’t a liability or a burden.  She was exactly who God made her to be.

And so am I.

[7]

It seems we too often look at life as if it is measured on a scale – we feel we’re doing OK as long as the good out-weighs the bad.  We approach God in this attitude, pretending we have no need of Jesus because we are good enough on our own.  And we approach each other in this attitude, placing higher value on people who give than on those who take.  We even approach ourselves in this attitude, rationalizing that the more we accomplish, the more we matter; as if our worth is proven by what we do.

Certainly there are times when proof is needed, when an evaluation of character and competence establishes credibility, but such evaluations do not entitle existence.  The right of personhood is not measured cost versus benefit, and human dignity is not defined by the extent of one’s activity.

It is defined by God.

Therefore, the value of my life – and that of my sister’s – is not the balance of joy versus pain I bring to the world; the value of my life is determined by the One who created it.  My right to exist was declared by God at the moment of my conception, when He allowed my life to literally take form.  And the worthiness of my existence was confirmed at the cross, when His own Son died for my imperfection.  In light of such profound knowledge, I have nothing more to prove and nothing else to earn, because God has already accomplished both on my behalf – I have only the choice of how to live in response.

God’s word teaches us that we are active participants in our own lives; that although we may not hold ultimate authority over them, we do hold reasonable responsibility for them.  Life is full of grey areas; decisions we must make that are not specifically spelled out as right or wrong in scripture.  The decision to become a parent is just one of them.

As Guthrie’s story illustrates, becoming a parent is only partly in our control because ultimately no child is conceived – or prevented – outside of the will of God.  But the part that is in our control must be considered responsibly.  The decision to parent is a deeply personal choice, and each of us carry legitimate reasons not to parent, issues that have nothing to do with the value of a child’s life, and everything to with our own weaknesses.  The decision comes down to a question that every parent should ask, and every child deserves to have answered:  “Whatever happens, can I commit myself to this relationship?”

This question is not unique to parenthood, it is a question that must be asked of any close relationship, because the closer the relationship the more it will require of us.  Commitment in any relationship gives another person permission to depend on us despite the variable of a future that hasn’t happened yet.  That’s what makes commitment so hard, and that is why it must be considered so seriously.  And when the unthinkable happens and the tidal wave of emotion overtakes us, it is commitment that anchors our relationship, gifting the other person with an assurance of our love when everything else has changed.

The future may be unknown, but we know with certainty that no parent can protect their child, or even themselves from pain or death.  It could be cancer or influenza, maybe heart disease or even a car accident; whatever their cause, we all experience pain and we all inherit death – it is the genetic disease of humanity.

It is dangerous then to determine the value of a life according to the pain a person might experience or the manner in which they might die.  This would be an evaluation of life based on only one aspect of existence, and by this standard no one should ever have children.  By this standard God should never have sent Jesus – He lived on this earth so that He could die.

Yet the Bible teaches us that God is always at work, everything He does has purpose.  It may not be a purpose we can identify and it may not be the purpose we would choose, but those are not things we are asked to decide.  Instead, we get to choose how we live within the context of the life God has ordained for us.

God does not force us to choose His ways, but He does supply direction to those willing to listen, teaching us through His word how to live well.  Those who pay attention quickly figure out that living according to God’s ways is the very best way to live, no matter the circumstance.  It is the best for the individual and it is best for the community he interacts with.

Despite her circumstances – despite fear, pain and Huntington’s Disease – Laura chose to live well.  Her choice echoes into the lives of those who knew her.  Her example inspires me to do the same.

(See related post For My Big Sister)

[8]

Fear can be a forceful motivator, and it is greedy too, often seeking nothing less than full control in our lives.  Fear tries to narrow not only our view of life but also our view of ourselves.  It tells us our purpose lies in preventing the bad and maintaining the good.  Fear makes deceptive appeals to our pride and assures us that we have more power than we really do, feeding us the lie that we are wise enough to define good and bad, and strong enough to control them.

For me, fear has been a close companion, so commonplace that it was normal.  It has been a parasite, an organism of decay in my life, yet so familiar that I could neither recognize its bad advice nor notice its foul stench.  I have feared Huntington’s Disease; I feared it would overpower love and leave me utterly alone.  I have feared a wasted life; I feared that I would be crushed between the past and the future without ever having enjoyed life.  I have feared the loss of approval; I feared that my acceptance hinged on making the “right” choices.  And I have feared pain; I feared experiencing pain as well as causing it for anyone else.

If this world is nothing more than what I can see, then fear is logical.  If my life is defined by another’s affection, then I should rightly fear that love is not real, because with people sometimes it is not.  If my life is defined by fulfilling experiences, then I should rightly fear a wasted life, because happiness is an elusive aspiration.  If my life is defined by another’s good opinion, then I should rightly fear the loss of approval, because people are fickle and I am full of imperfection.  And if any one of these definitions of life is true, then more than anything I should rightly fear pain, because it holds no purpose other than to rob me of my limited opportunity for something better.

But if this world is more then what I can see; if a perfect, invisible God does exist, then I have nothing else to fear.  Because if God does exist, then His love for me is real and cannot fail; when all other’s love runs out God’s love will just be getting started.  If God does exist, then His plan for my life is real, and my willing submission to it ensures that no part of my existence goes to waste.  If God does exist, then His approval of me is real; it is given through Jesus Christ, whose costly sacrifice won me eternal acceptance into God’s family.  And if God does exist, then His work for ultimate good is real – and it includes pain. Pain then is nothing more than an invitation to participate in something greater than my own life.

At its core, fear is unbelief; it is a lack of trust in God.  Fear is a part of our nature, but it is far from trustworthy.  As for me, I choose to live fearlessly, trusting the invisible God, that I might become a woman “clothed in strength and dignity,” so recklessly confident in Him that I can “laugh without fear of the future.”

Leave a Reply

Your email address will not be published. Required fields are marked *