"Huntington's Disease Scars"

  

 

            Huntington’s disease ravishes the human brain like no other disease. Like fingerprints, this inherited disorder presents differently for each patient. For Mom, we overlooked her earliest symptoms—apathy and anxiety. She loved spending part of her days cross-stitching intricate patterns. Anyone who’s ever sat with needle and thread knows the delicacy of this work. When she set aside an unfinished piece, she told me that she wanted to try a different craft. I purchased a few possibilities from our local Michael’s store, but nothing drew her interest. Around the same time, she stopped reading. Always one book in hand and several on her nightstand, she shifted to barely reading the newspaper. She frequently complained that my dad never took her any place, but whenever he made suggestions, she tearfully nixed his ideas. Anxiety, something many people battle, became part of her daily routine. Sometimes when I called her, she’d cry. My suggestions that she talk to her doctor got the same response, “It’s just a blue day. It always goes away.”        

            When Mom’s feet began dancing during car drives and her fists clenched wadded Kleenex, she’d answer my worried questions with assurances that Dad’s driving drove her crazy. She spent tons of energy controlling her movements when in social situations. Dad finally found a project she loved—land outside of Leakey, Texas. They spent most of their 60s with plans and trips that filled their days. Mom’s anxiety drifted away, but her clenched fists and restless legs appeared whenever she was stressed or tired. I realize now how easy it was for all of us to minimize her early symptoms.

            Right after Dad’s 71^st birthday, a massive heart attack killed him. Within a year, Mom found an apartment walking distance to our home and signed a six month lease to see if San Antonio would fit her needs better. Over a period of eight years, her abilities melted away so slowly that we missed the changes. Once driving on her own, she began handing the car keys to one of us. Her weekly walk to our house became less frequent and then stopped altogether. Her anxiety kicked up again, and she began obsessive behaviors to counter her worst fear—her retirement deposits not being credited to her account. I discovered that she stayed up until midnight to begin calling her bank until her money arrived each and every month. I never could convince her that it was fine to wait until later in the morning.

            None of us noticed that Mom cooked fewer meals for herself. Somehow, I began swinging by her place daily on the way home from work to bring her over for meals we cooked together. When her leg began buckling out from under her, tumbling her to the ground, we scheduled a doctor’s appointment. Fortunately, she had it happen while with the doctor, who scheduled Mom with a neurologist. He suggested several possibilities, and when we mentioned my cousin had Friedreich’s ataxia, he wanted to order genetic tests. Before that could happen, Mom suffered a TIA, landed at Brooke Army Medical Center and her Huntington’s disease went into hyper drive. All of her subtle symptoms blossomed and others surfaced. Her balance evaporated, she couldn’t hold a cup of water or walk unaided. A young lieutenant’s experience with an entire family battling Huntington’s disease insisted to her superior that Mom be tested for it as soon as possible. The neurologist at first resisted the idea because Mom’s cognitive abilities were so sharp. She always recited the “remember these words” drill flawlessly, knew the date, all of our names and birthdates, counted forward and backward without fail.

            The tests, though, never lie. Mom’s Huntington’s disease snuck into our lives without notice and took over everything during her final four years. The stages are recognizable and yet still unique for each patient. Our lives narrowed down, too, as caregivers. I raced to retire from teaching because we knew she’d need care twenty-four/seven. We removed the wall between one bedroom and the bathroom to create a wheelchair wide access point. We structured our days and nights to accommodate her ever increasing needs. When Mom moved into our home, she could get into and out of her wheelchair on her own. She could cook with me, help with laundry, and take trips to see my siblings. She would discuss the news, watch movies with me, and chat about plot lines. By the end, we did everything for her.

            Caregivers don’t talk about having to handle impacted bowels. Caregivers don’t share the horrors of watching a loved one go from eating meals to being unable to take a syringe of water. Caregivers don’t reveal the heartache whispering, “It’s time to go. We’ll be fine. We love you, but you need to let go.”

 

            Mom died in November 2012 after living with us for two years, but we were her caregivers for many years before she moved in with us. Huntington’s disease changed our family forever. We have a resilience now that prepares us to handle new crisis situations with a comparison point—“It’s NOT as bad as Huntington’s disease.”

Copyright 2025 Elizabeth Abrams Chapman           

"Summer Games: Red Light, Green Light"

             A game of “Red Light, Green Light” often began with only a few of us scrambling from driveway to “Light”. The call, “green light” accompanied with the varied pause and then the shouted, “red light!” acted like the siren’s call, luring kids from throughout the neighborhood to dash with breakneck speed at the target. It never took long for the game to disintegrate into an endless argument on who got caught in movement by the “Light.” Before chaos descended, the game morphed into “Freeze Tag” or “Statues.” Both games shifted tension into uncontrollable bursts of laughter as bodies and faces contorted into hilarious positions.

            I loved “Statues” because one of the older boys would grab my wrists and spin me mercilessly. The world blurred into the muted colors of dusk as I tried to focus on something. Upon release, I’d soar through the hot summer air, capture a pose in midflight, and freeze into position once I bounced to a halt. Everyone wanted their turn to spin and throw me because of my pixie body and “Dizzy Miss Lizzy” good humor.
            As an adult, I’ve come to believe in the value of play. Not being on a team, coached and hemmed in by adults, but unfettered play within a diverse pack of kids that created its own hierarchy and rules. I didn’t get shuttled to and from structured soccer practices. I didn’t spend hours in lessons after school under more adult supervision. I know my mother listened to our games. I remember seeing her outline through the screen door when she snuck a peek at our antics. However, parental presence stayed in the background and the shadows through most of our evening play, emerging only when there was blood spilled or bones broken. All the fussing and fighting that came about as we struggled with pecking order? We accomplished this without adult input or supervision. This autonomy in play, I believe, is the greatest loss for the generations that followed my own.

Playful adult me!

Copyright 2011 Elizabeth Abrams Chapman

"Summer Games: Tug of War"

              As a child, seeing a rope hauled out and white handkerchiefs tied in strategic spots made me want to run for cover. Of all the neighborhood games, this one appealed the least to me. A battle of strength and endurance, Tug of War lured the larger and older boys outside. Even a few fathers joined the teams, staking out territory determined by a line.  My Olive Oyl arms couldn’t begin to handle the powerful pulls of this game. As an adult, I realized that we often play this game at work or in our relationships. 

Tug Of War
Us versus Them
Love overcoming Control
Intellect conquering Emotionalism
Endurance vanquishing Selfishness
Perseverance defeating Indulgence
Us versus Them
Right overcoming Wrongs
Strategy conquering Shallowness
Persistence vanquishing Neglect
Reality defeating Rationalization

Art by JCMG Studio

Copyright 2011 Elizabeth Abrams Chapman

"Summer Games: Red Rover"

              Our quarters at Dover A.F.B. lent itself to play. Laid out in the pattern of a giant U, base housing had a row of attached houses to the right, center, and left. The front doors and yards of the houses faced outside the U, and we rarely played in that area where the perfectly clipped and edged lawns and pristine white sidewalks reminded us that the families enlisted in the military along with their fathers and mothers. The back doors of our homes dumped into a common play area. Some families, like us, put up fences around their yards for their dogs. Other families kept their back yards open to the field. A huge black topped parking lot filled the cup of the U and provided not only a slot for the family car, but also the perfect roller skating and skate boarding surface. Beyond the parking lot, toward the center was The Field.
            In this field, we played together on endless summer nights. Roaming the area like a pack of stray dogs, all the kids from our section shifted in play from football to baseball to games like “Crack the Whip” and “Mother, May I?” Some evenings, when we gathered a large enough group after dinner, we’d divide into two teams to play “Red Rover.”
            “Red Rover” intimidated me. My pixie sized body rarely broke through the linked hands, meaning I became captured round after round.  The other team never failed to get delight in watching my futile attempt. Every time they sang, “Red Rover, Red Rover, send Lizzy right over!” I’d critically analyze the opposing line for the weakest link. My heart pounded, my breathing picked up, and my little scrawny legs pumped furiously as I flew across the distance to fling myself at the selected spot. I tried torqueing my body at the last second to add force to my plunge, but it never mattered.  The hands never broke free. I’d hang like a wet rag, winded and ashamed while guffaws and catcalls erupted from both teams.
            I learned strategy and tenacity from playing “Red Rover” because I didn’t give up. I could have opted out of this game, retreated to the safety of home and a piece of Mom’s fresh baked pound cake. Or I could have pretended I wanted to play on the slides and swings with the other younger kids. Something in my personality drew me into this challenge, and the humiliation of defeat after defeat never swayed me from my desire to play. Perhaps all of these summer games of childhood served more purpose than keeping us out from underfoot at home. I learned teamwork, tactical planning, perseverance, and doggedness. I tasted victory and survived loss—all of these elements necessary in maneuvering through adulthood’s life games.



Me STANDING between my younger cousin 
and my sitting Aunt Louise


Copyright 2011 Elizabeth Abrams Chapman

"Summer Games: Mother May I?"

             By three o’clock each day, the temperature climbed to triple digits, bubbling the street and immobilizing all. Birds searched out bird baths, backyard ponds, or lazy sprinklers to find relief from summer’s relentless boil. In our neighborhood, the kids retreated into our home during the hottest part of the day. We pulled out worn decks of cards and played War or Concentration. Clue and Scrabble filled many hot afternoons. Sometimes, we stretched out limp and liquid on blankets under the sycamore out back, transistors tuned to KTSA, and Mom’s colorful Tupperware glasses topped with cherry Kool-Aid sitting within easy reach. The slightest whiff of a breeze tickled against our skin, carrying a hint of evening’s promised respite from our Texas humidity. Often the Wiggle Worm chased us madly around the yard, or we dared fate with the Slip-n-Slide. Everyone scattered by dinner time with pledges to regroup at seven after the temperature eased from broil to simmer.

            Early evenings found everyone back in our front yard, a melting pot of kids united for the purpose of enjoying evening entertainment. The eldest kids rock-paper-scissorred to determine the first leader, and then preformed a second round to establish the game. When “Mother, May I?” rang out, I always danced with pleasure for this contest didn’t rely on physical prowess to win! My slight stature hindered me in many games we played, but in this activity I stood equal to my taller, brawnier, and older peers.
            All of us lined up at the edge of our driveway, facing the leader—“Mother,” who stood across the wide lawn in the palm tree’s shadow. One by one, “Mother” called a name and instructions in a sing-song, “Kelllll—leeeee, give me three giant steps!”
            The expected response in order to move forward? “Mother, may I?”
            Sometimes “Mother” granted the request. One by one the players edged closer with giant steps, scissor cuts, baby steps, or frog leaps. Sometimes, “Mother” denied movement, or kept changing the instructions in an effort to confuse us into forgetting our polite, “Mother, may I?” If you forgot the question, the penalty meant returning to the driveway and starting all over again. The goal, of course, was to reach “Mother” and take control of the game. I learned through the years to keep my movements exact, my voice small, and to creep slowly forward while others diverted “Mother’s” attention with heated debate or bold coup attempts.  Once I sidled close enough to “Mother” to take flight, I tagged my way to victory. Usually, we’d while away the early evening toiling at this game until nightfall provided the cover and coolness we needed for hide-n-seek.

Copyright 2011 Elizabeth Abrams Chapman