An enabler is a person who encourages or enables self-destructive behavior in another. So often we think of enablers in terms of addicts and alcoholics or the mom who keeps feeding her 700-pound, bedridden son. People who keep hidden what everyone else can already see. We think of them with derision and judgment, as if they had a choice in their actions.
Perhaps, though, we, the enablers, are creatures just as broken and bereft as the individuals we try to protect. Desperate victims in a dark-shrouded world, who cannot see a way out of the darkness.
The beginning was subtle. She began to worry about strange things. She became convinced that odors of any kind would make her sick and refused to allow any cleaning products in our home—she even demanded that hotels we visited not clean our room with anything but water. If she encountered any kind of construction work or gardeners, she would flee immediately, running home to lock the house and close the windows lest the smells or the dust make her sick. Or worse, she would approach the crew and demand they stop their work, regardless of the circumstances or employer.
Late one night when I was a junior in college, she called, whispering into the phone that my dad had just tried to kill her. Frantic, I tried to piece together the weird story she was hissing through the phone; he had used a cleaning tablet in the toilet tank in their bedroom. She was certain he had put it there on purpose, in secret, because he knew the fumes would kill her.
She became compulsive about her eyes, spending hours scrubbing her contact lenses in her palm every night, certain that any less effort would leave her blind. She stopped laughing. Fear and paranoia took over. The happy, gentle woman she had been became urgent and worried.
I tried to ignore the changes. I only lived at home a couple of months out of every year, and even, then I worked full-time, trying to earn spending money before returning to college each fall. At first, there were enough good days that we overlooked the bad, pretending she was just tired or stressed. My brother was away in medical school; I spent a semester in Europe. Like a fading summer twilight, Mom slipped away from us slowly, until I looked around and realized: the light was already gone.
After graduation, I moved home with my parents, but the kind, serene woman I knew had become paranoid and obsessive. Jealous and spendy. Preoccupied with her appearance, she bought makeup and creams from department store counters she’d never even glanced at before. She ordered clothes from catalogs in multiples, more than she ever needed or wanted. She became demanding and fierce, angry if anyone disagreed with her, hostile of my time.
My relationship with my college boyfriend ended a few months after graduation. Terrified at having to stay in the hell my home life had become, I yet resolutely ended the relationship just before Thanksgiving. My mom did not agree, screaming at me over my decision. She called him frequently, scheming how to get us back together, encouraging him needlessly.
Once nurturing and supportive, she became angry and possessive, clutching, frantically holding onto me and a relationship that had already started to crumble. She wanted us to be as we always had been—best friends. She’d buy me gifts for no reason, but they were extravagant and awkward.
My father and I were not allowed to discuss her illness or even make mention of it at all. Mom saw in my father the source of all her suffering, demonizing their relationship.
She began to wear too much jewelry, overdressed for lunch, arriving at my office unbalanced in her heels, her makeup smeared. Her fingers bit into my arm as she clung to me and her former life. Gold chains slapping against her neck—too many, a gaudy amplification of the person she once had been. I gasped for air, trying to keep up, unready and unwilling to adapt to her rapid decline.
I tried to be the good daughter. Tried to play her game, pretending nothing was amiss. Dad and I, we did what we could to preserve the fragile balance in her world, going to great lengths not to cross her or give her any reason to anger. We covered up her mistakes, brushed off her balance issues, soldiering through church and other public events with smiles plastered on like nothing was wrong, a comical charade. We couldn’t talk about what was painfully obvious to everyone else.
“How are you?” they would ask, concerned.
“Great! Everything’s great!” smiling fast and turning away before they could see that the words were the opposite of the truth.
My father and I walked around like the living dead, alive but not. Trying to keep what life we had as normal as possible, nothing was at all normal; nothing was the same. We faked our way through what it meant to be a family when, in reality, our existence was a cruel parody of what we once had together.
We planned the intervention for a Saturday, calling upon the people who knew her best—her closest friends, the women who kept trying to love her and let her keep up the charade, elders from our church who had served as shepherds of our flock since I was a little girl. A trusted advisor was to serve as the mediator. My brother and his fiancée, flew up from Los Angeles to be there. And Gabe, my boyfriend of only two months, who drove me to my parents’ house where we all would gather. I was shivering so violently in the car from fear I thought I would throw up.
Mom gave a marvelous performance. Switching from indignant to gracious, she treated them all as if they were there for a visit and began offering coffee and drinks. She tried to position herself carefully on the couch, hiding her tremors and chorea, gritting her teeth against the spasm in her cheek. She insisted she was fine. We begged her to seek treatment. We cried.
When it was all over, we tried to talk more, just the four of us as a family, while she made a batch of scones in the kitchen. Bob, my brother, asked her to hold out her hand. It clenched and opened, rhythmically, in front of us. “Don’t you see, Mom? There it is.” She ignored him and went back to the bowl, flour and sugar scattering over the counter as she tried to maneuver and make everything okay. And then, she unleashed and accused—humiliated and shamed by what we had done—inviting “those people” into our home to discuss our private affairs.
The intervention did nothing but embarrass her further, and it wasn’t long afterward that she demanded Dad take her on vacation down to Catalina. Her paranoia had become centralized around our home, and she was convinced that the home itself was what made her ill. “I just need to get away from here,” she said. So Dad took her, but at the end of the week, she refused to come home. He had work waiting for him, so he paid for a month’s stay at the hotel where they had been, and he left.
We hired a caretaker to see to her needs. Dad would visit as often as she would allow, bringing her furniture, clothing, groceries—whatever she wanted—and finally, he bought her a cottage so she wouldn’t have to move from one seasonal rental to another. She left us all in favor of strangers and isolation. Perhaps she sought some happiness she could remember from her childhood in a place where she didn’t have to think about the life she left behind.
She never came home.
It wasn’t as if she didn’t know what was going on. It wasn’t as if she hadn’t already met this Huntington’s Disease face-to-face. The illness is hereditary, passed from parent to child, and while painfully slow, it is always fatal. She had already buried her own mother. She knew what was happening, but she could not face it—she could not accept the illness within herself.
Because we loved her, we carried on the pretense of normality. Because we loved her, we tried to help her carry this secret, sheltering her from the shame she envisioned she would endure if anyone knew the truth.
Because we loved her.
Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light (Brené Brown, author of Daring Greatly).
Only after she left to live alone in Catalina did my father and I have the courage to open up to others about the chaos in our home. One Sunday at church, I sat in my peer group of adults, sobbing out our story, explaining the past years of farce and subterfuge. Apologizing for our isolation and avoidance.
The outpouring of support was immediate, and we lifted with the tide of love that swirled around our family. A week after my public confession, a woman I had known for years, but with whom I had never been particularly close, came and knelt in front of me. She pressed a beautifully bound journal into my hands.
“Take this. Write down everything you possibly can. Write down who she was before so that you will never forget.” She swallowed hard. “I don’t know what I would do if I lost my mom.”
Dr. Brené Brown has pointed out that empathy is the enemy of shame. Shame cannot hold up under the warmth of compassion and understanding. Whatever shame we feared, for ourselves or on her behalf, vanished when we allowed our community into our pain.
Mom was gone before I ever knew her, really knew her, not just as my mom but as a peer, an adult – as my friend. We never got to talk about staying up all night with a sick child or just how annoying my older brother and I were as teens. She never had the chance to tell me what it was like to be a mom. I knew nothing of her menopause or how old she was when her hair began to gray. Motherless, I planned a wedding. Motherless, I sat in state at bridal showers and rehearsal dinners, her place that should have been, empty beside me. Dad, my brother, and I made the best of what we could, and the village around us carried us when we could not carry ourselves.
Huntington’s Disease is a cruel cousin of Alzheimer’s, Parkinson’s, and ALS, robbing not only the mind of clarity but the body of balance. Paranoia, delusions, and anger are all common. The inability to walk steadily, frequent muscle spasms in the hands and face are par for the course. The total duration of the disease can be upwards of 20 years, and it usually strikes adults between the ages of 30 and 50 but can also manifest very early in young children. There is no cure.
While less known than other neurodegenerative diseases, it is often called “The Worst Disease Known to Mankind.” For more information on Huntington’s Disease, please visit www.HDSA.org.