In the Shadow of Huntington’s Disease: “How’s Your Mom?”

Most of the time it doesn’t come up. Most of the time I can function like this story doesn’t exist. Most of the time I can just live my life around it.

Because this story is awkward; it’s heavy and bewildering. Often it doesn’t even seem real to me. It doesn’t seem possible that my normal-ness intersects so fundamentally and forcefully with this other reality of pain and loss.

But every so often the right person will seize the right moment, and with courage and thoughtfulness they will sincerely ask, “How’s your mom?”

And still, after all these years, I don’t know what to say.

My mom has Huntington’s Disease.

Huntington’s Disease is rare and complex and trying to explain it is anything but simple. The Mayo Clinic describes it like this:

“Huntington’s disease is an inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders. Most people with Huntington’s disease develop signs and symptoms in their 40s or 50s, but the onset of disease may be earlier or later in life.”

But to me, Huntington’s Disease is pain. It is the slow, agonizing disintegration of life and love.
I never knew my Grandfather, my mother’s father. He died when I was 2 years old of complications associated with Huntington’s Disease – he and 3 of his 8 siblings along with him.

My mother’s brother, “Uncle Jack,” died when I was in High School. In my earliest recollections he was already “sick,” so my memories of his life revolve mainly around stinky nursing homes, strange jerking movements and stiff family gatherings.

These people, these beloved family members, lived essentially normal lives. They played as children.vThey went to school and graduated. They fell in love, married and had children of their own. My Grandfather even served in World War II, honorably returning home after being wounded in action. But as each one grew older, it was as if a switch flipped somewhere along the way and the physical, mental and social abilities they once managed with ease slowly regressed until their bodies simply stopped working.

One evening, when I was in third grade, I noticed that my mom’s foot was bouncing back and forth like it had a mind of its own. It sounds trivial, but it was a distinct movement. I had seen it before and I easily recognized its similarity to my Uncle Jack’s. It was quiet night. The rest of my family was away, dinner was over and I was on my way toward bed.  It was then, with the fearlessness and frankness that comes with being 8 years old, that I asked my mom why – why was her foot moving like that?

My mom, then about 40 years old, gently pulled me into her lap, and treating me with great respect, told me the truth. She too had been diagnosed with Huntington’s Disease.

Young as I was, I clearly sensed this exchange was a pivotal moment, and from that day on Huntington’s Disease took a leading role in my life; it was a defining factor of my childhood, it shaped my choices in early adulthood, and continues to influence my perspective today.

The rest of my Elementary School years were identified by divorce and displacement. As the full weight of her diagnosis brought my mother to the brink of despair, she distanced herself, determined to fight, and life as I had known it came unraveled.

In the aftermath, my relationship with my mom through Middle School and High School became an uncomfortable combination of confusion and care.  She tenaciously clung to her independence, at times providing alternate explanations for her declining health, but as her motor skills weakened, she became increasingly dependent on others – even on me – for help. Groceries, laundry, cleaning, personal hygiene – the most fundamental mother-daughter roles were reversed.

The year I turned 18, my mom was admitted to full-time nursing care. It was the same year the tell-tale signs of Huntington’s Disease took hold in my sister.

I have felt at times that I live oddly out of step with my chronological age, often feeling older than my countenance betrays. But no experience has confirmed this feeling more than learning to navigate nursing home life: interacting with nursing staff and social workers, meetings concerning a Plan of Care and Hospice, discussing orders for a DNR and establishing funeral arrangements. These are all practical steps that must be taken to properly care for an aging parent, but mine is only 64.

And then there are the visits – 13 years of nursing home visits. Each time, breathing prayers for grace as I force one foot in front of the other down the hallway to her room. The pit in my stomach as I again approach this person I love only to see her slipping ever-further into disease. And the never-failing surge of regret and reluctance at leaving, as if just a little more time together might change something. As if our lingering proximity might somehow fix this and make things better.

My mom didn’t make my High School graduation. She wasn’t present on my wedding day and she wasn’t there to hold my daughter when she was born. Even now my mom plays tough, shouldering her own pain and hardly ever showing her sadness, but my own mother’s heart can imagine her sorrow.

So how is my mom?

My mom is dying. She has been fighting the progressive decline of Huntington’s Disease for 25 years and her body is failing. She can’t walk, talk, laugh or sing anymore. These days she can hardly move and it takes visible effort for her to make eye contact. But she can see us walk into the room. She can hear my voice as I share the details of my life. She can cry listening to her grand-daughter sing “Jesus loves me” and she can feel the pressure of a tender toddler kiss when we say good-bye. She can be soothed by the truths of her favorite hymn, “It is well with my soul,” and she can be consoled through the presence and prayers of faithful friends.

It’s not the life I would choose for her, but I’m thankful for the life she has. And yet, I can’t help but wonder, “Why does God let bad things happen?” Why her? Why us? Why this?

There really are no satisfying answers. But then, why does God allow good things to happen?

Why did God allow my mom 40 good years before Huntington’s Disease took over?

Why has God given her so many years since – enough that she knows her grandchildren?

And why, why would God bother to reach into this mess and offer us eternal hope?

Because He is good. His proof, it’s Jesus.

God in flesh came to live in our brokenness, to deal with our decay, and to die with our sin.
Accepting Jesus by faith has not been a magic formula that erased the generations of heartache in my family. In my humanness, it’s easy for me to think my life would be tremendously easier if Jesus would just fix Huntington’s Disease. And maybe it would be, but that would be missing the point, because Jesus didn’t come to simply remedy the symptoms of sin; He came to offer a cure for the problem at its source – to repair the broken relationship between God and Man.

This story hasn’t ended, it is still in process and I know that more pain lies ahead. But I take joy in the opportunity to follow my mother’s leading – like her, I choose to put my hope in Jesus, confident that because of Him I can say, “whatever my lot…it is well with my soul.”

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