HOPES Stories: “Bryan’s Dad Wants Ordinary Back”

“Bryan’s Dad Wants Ordinary Back”

In this story, we learn that Bryan’s Dad is neglecting the things he once loved: his pet dog, his son’s baseball games, and his job. Ben is dealing with the onset of physical and cognitive symptoms from HD and doesn’t know it yet. He feels that he is losing the grip on his old and comfortable life. This story touches on the day-to-day stresses associated with HD symptoms at home, in the workplace, and even while driving. Ben is in denial about these changes and we learn information about Ben’s family history that psychologically impacts him. This story seeks to set the symptoms of HD in a perspective outside of a text book.

There are those particular sounds we do not hear very often, but when we do our hearts quicken, our eyes open just a little wider, and our very synapses fire with understanding. It is truly an ageless phenomenon. Take for instance the discordant clang of an alarm in the middle of algebra class – A fire drill!The first gathered breath and spastic lifting of one’s head off the less-than-comfortable desk, a gut-fear. Will my locker burn down? Then the calm – Oh, it’s just a drill, no more class this period! The elation. Years later, that special collection of consonants and vowels, said by that special person, over a special dinner and clink of champagne glasses – “I love you.” Few words, or sounds for that matter, can really say all there is to say about what the body feels and the brain struggles to define about such moments – ecstasy.

To dogs, especially Auf, no sound resonates as clearly or so strongly as the one his beloved owner makes; ‘I love you’ pales by comparison. Most assuredly, the soft clinking and sensuous shape of a folded and dangling dog leash makes Auf go buck-raging mad. He skittles around the kitchen tile floor, each doggy nail scratching the sound of rain falling on a car windshield. Auf lives up to his name, aufing and playful whines, encouraging his owner to click on the long length of blue chord and metal attachment faster than the speed of sound. When the door opens and Auf trots out into the free expanse of sunshine, he can reasonably expect several things dramatically important to life: 1. The existence of other dogs to sniff. 2. The existence of plenty of squirrels to chase. 3. All the trees in the world to mark his unquestioned territory. To be quite honest, it’s as close to a spiritual experience as the canine species has yet to achieve. It’s true.

Auf occupies his downtime by guarding the backyard. It’s not a terribly large place, but it’s his, and he takes it upon himself to make sure nothing is amiss. He knows every nook and cranny, and this pleases him. When the new family of loud magpies took residence in the largest tree in the yard, this inspired some brow-furrowing and entertainment for Auf. These birds seemed to enjoy his dog bowl as much as he did. When he wouldn’t look, they’d take the liberty of snatching a piece of kibble – his kibble, and fly up out of reach. Such rudeness was persistently met with chorals of barking and a racetrack of activity around the base of the tree. Auf knew one day he’d catch the cursed magpies and end their rein of terror. However thrilling this pursuit has been for him, Auf has become increasingly antsy. It’s been far too long since the last time he heard his favorite sound – and this distresses him far more than a lost mouthful of kibble. Ben, his owner, has neglected his post of Auf-walker.

Truth be told, Ben hasn’t been up to par with the Auf-walking in recent months. As far as Auf can remember, Ben hasn’t taken him for a walk in a good month. Lila, his owner’s wife, has been pretty good at taking him out for a spin – but by no means does she ever take him to his favorite places, nor does she throw the tennis ball. Oh, the tennis ball! That’s the icing on the walking cake! Nothing beats the bouncing silhouette of a tennis ball in the forefront of a setting sun, the lake in the background, and plenty of crunchy grass under-paw. Nothing! It’s true, the last few times Ben took him out for one of their long walks, the ones that have made both Auf and Ben the closest canine-man relationship ever, had been less than spectacular. Ben couldn’t keep up with Auf – sometimes he even let the leash go. Auf, not realizing this, would run up ahead of Ben. When Ben caught up or Auf noticed and ran back, Ben wasn’t in his typical and universal good mood. Instead, he seemed aggravated – holding the leash more tightly, and yanking back when Auf got a little too excited by a carousing squirrel on the path. Not only had the walks been less free-flowing as they once were, they got steadily shorter as well. The tennis ball made fewer and fewer appearances. Auf was confused by all this. Ben was always a good throw – he could probably throw the ball clear across the lake if he wanted too! But Ben’s throwing skills had taken a nosedive. The ball wound up in the lake, or in a bank of shrubbery, denying Auf his long runs to and from the bouncing beacon. Auf didn’t really mind swimming to get the ball, or going on search and rescue missions to recover the ball – but his owner’s frustration at not throwing the ball where it should go was palpable. Frustrated, Ben would stop throwing the ball after a few moments and would take a seat next to the lake, sit, and just stare for the longest time. Not that Auf really minded that either, snuggling up against his owner by the lake was one of his favorite activities.

Although Auf was certainly willing to let a few sour ball-throws go by, he was keenly aware that his job was to support his owner. If Ben wasn’t feeling well, he would encourage him to try, and maybe make him just a little happier in the process. Auf would pick up the stagnant tennis ball and drop it on the ground next to Ben’s hand as he sat staring out at the blue. Wagging like a maniac, and jaws wide open in a slobbery grin, he’d wait for Ben to pick up the ball. After a few impatient moments, Auf would up the ante – and use his stubby nose to push the ball into Ben’s hand. Ben picked up the ball and pocketed it; then gave Auf a short scratch behind the ears, and continued to stare out into nothingness. Auf, feeling that he had failed to encourage and electrify Ben as he used to, picked a spot close by, and laid his head on his outstretched paws – occasionally looking to his owner with wide-set eyes.

Now, as Auf scouts the backyard, he forces himself to be uncomfortable. The next walk could come today, right? And if it did, he would be ready with as much territory marker as possible. Imagine for a moment that Auf was a cow. What do cows do if their owners don’t milk them? Can cows milk themselves? Probably not – but if they could, they wouldn’t waste the milk on a patch of grass in the middle of their pasture, would they? Auf lived by the same philosophy – he would hold it all in until he couldn’t bear it further. Needless to say, when dusk came slowly and his food was set out for him on the porch, he waited anxiously for his favorite sound of the dangling leash. It never came – and as Auf ate, all he could think was, “What a waste.”

Ben went to work, came home, went to sleep, went to work and maintained the beats that sounded the drum of daily life. He was a busy man – he had a job, a family, and a life. As ordinary as ordinary days can be, they are nonetheless busy. Although he had become accustomed to the routine-ness of a breadwinner, his mind had wandered from the busy that is going to meetings, changing the car’s oil, and mowing the lawn. He was busy trying to understand what was happening to him; to his body and his mind. Ben never grew bored of the busy metronome clickings of all the parts of his life – in other words, he never minded being this comfortable. What distracted him now was his inability to keep up with the metronome. He was chronically late; late to work, late to respond to his coworkers during lunch, and late to pick up his son, Bryan, from baseball practice. He was off beat – but what was worse, the beat was changing daily – ever so slowly, but perceptibly.

They started out small – almost silly in a way. One morning on the way to work, he started noticing how hard it was to concentrate while driving. Suddenly, he was aware of the cognitive acrobatics involved in navigating a 1500 pound hunk of churning metal. You had the accelerator and the brakes – all which had to be pressed in a certain way at a certain time. The vision too – you had to check the mirrors and the odometer. There are speed limits to consider, and fellow yawning employees scurrying like ants to get to their positions and maintain their drums for the remainder of the day. Changing lanes involved a small turn of the steering wheel, right-hand turns were a bit sharp, whereas left-turns were more arched and meandering. The road almost never stays straight the whole time; sometimes lanes appear, then disappear as they merge into larger streams of highways or ebb down to one-lane driveways, or pool into the wide expanse of parking lot. The thought hit Ben as he nearly side-wiped a car when changing lanes. The sudden jerking to maintain the road, get comfortably back into his lane, and resume the speed of traffic nearly gave him a headache. He had to be careful – he was almost passing stop signs he had stopped at faithfully for years. Nothing needs to be said about the perils of highway driving and making sure to get off at the right exit – changing speed, merging, and knowing where to go and how to go next.

Work was no better. He made a habit of stopping by the bagel shop to pick up a baker’s dozen for his buds at work and the secretaries that made his life so much easier. When he had time, he went through the Java Joe’s drive-through to pick up some juice. Appreciation was never lost on anyone, but in all honesty, people at the office had developed the bad habit of assuming that Ben would always bring in these amenities. Now, as Ben’s ability to drive began to suffer, the 15 mile commute to work seemed so much more daunting, and eventually became a 20, 25, 30 minute careful expedition. He often missed the beginning of morning meetings. Still stressed and adrenaline pumped from his commute, he forgot to maintain his up-beat attitude; wishing everyone a good morning, remembering to ask how Tom’s house renovation was coming along, and congratulating Diane on her new nephew. When these inconsistencies within himself became apparent to Ben, he drew within himself – upset that he couldn’t maintain his cocktail party mannerisms. The off-hand comments about the bit of lather left under his ear from shaving didn’t help either. People could see that he was different. It wasn’t some abstract concept; suddenly Ben became all too aware of the nakedness of his failing physical, cognitive, and emotional well-being. Honestly, Ben couldn’t wait to retreat to the confines of his office.

Although the quiet interior of his office relaxed him, Ben could not retreat from the signs that something was wrong. Daily reports were part of his daily work-beat. He reviewed the materials from accounting and an assignment from his boss – and, if all went well, typed up a memo to return to management by lunch. Ben would now sweat over the papers – all the orbiting acronyms and symbols looked like a steamy bowl of Alphabet soup.

“What did AcctP mean again? Accounts payable, or Actual Percentile, yeah. I think so – let me just ask? No, I can’t talk to anyone right now, not just this minute. I’ll figure it out, I will.”

Ben recognized that it took him much longer to process information than it used to. He would eventually figure it out, but ‘eventually’ became a euphemism. He began to pattern his desk and computer monitor with a quilting of sticky pad notes, reminding him of things that used to come to mind without help. Writing the memos after he’d organized his thoughts were a problem too. Ben would stop to ponder, sometimes minutes at a time, for a particular word to use.

“Annual reviews show an – Annual reviews show an? something, an increase. Yes, definitely an increase, but what type of increase was it? External? Expositiory? No no no no no!”

It would take a few minutes before “exponential” would come to mind. When it did, Ben would sigh with relief, but it was a rather unimpressive relief. Fine, he could get the reports done when he put his mind to it, but why did he have to exert so much energy to find one word in his mind? Sooner than later, Ben began to compile a list of words he was commonly having difficulty locating when he needed – but to his frustration, the list became so long, it took him almost as long to find it on paper.

The off-beats of Ben’s mind and body made him feel like an unreliable metronome. He felt that no one could trust him with anything. Lila, bless her, had reminded him time and time again to bring the briefcase before he headed out the door, to pick up Bryan after practice, and to take Auf out. He tried his best, but the stress of doing just about anything overrode Lila’s best efforts. Auf was another matter – he never forgot that he had to take him out to the lake. Even though Auf was the second love of his life, he couldn’t bear to take him out anymore. He just couldn’t keep up with him anymore, and this worried him in a way that work couldn’t. Ben was failing his dog, a creature that really couldn’t do much without him. Auf was his responsibility – and he was steadily becoming unable to perform those things that make dogs happy. Much to his own surprise, Ben didn’t feel as guilty as he thought he would be when he stopped taking Auf out to the lake. Lila took up the task willingly, but Ben, as much as he knew he loved his dog, began to withdraw himself from the post of Auf-walker, and more to Auf-scratcher – and even that became an occasion.

Ben knew he should be upset by all of this – work, Auf, Lila, Bryan – all the things that once made his life turn – the things that used to beat rhythmically, like heart-beats. But, he really wasn’t. The lack of concern felt far better than constantly reflecting on his mounting list of inadequacies. He couldn’t play baseball all that well with Bryan anymore, so why bother? Ben had difficulty sorting through the mail and writing out the proper checks and envelopes for the right addresses – so why not ignore them altogether? For Ben, this felt like a good proposition. Although Ben graduated from novice to proficient in lying to himself about what mattered and what didn’t, he couldn’t stop himself from getting bogged down by his collection of failures. His attitude vacillated from apathetic, to incensed, to downtrodden, to frustrated, and back again – thesefeeling began to sound the beats of his daily life. Persistent and off-kilter, the sound began to deafen him, and for much of this, Ben could only try to hold his hands over his ears, and hope.

Denial is everyone’s friend we hate to love and love to hate. There’s no better way for describing it. Denial will give us a backrub, tell us what we want to hear, and suggest we go out for ice cream. Then again, denial becomes the person we wish would move as far away as possible, so we can change our phone number and never hear from again. Ben had become two people over the past several months. He became a man who could see what was happening to himself while driving to work and leaving the blue dog leash on the kitchen counter. He also became the man who saw nothing, heard nothing, and in turn, felt nothing. Lila told him one evening at dinner that she had met with the family doctor, and that he suggested Ben come in soon to talk with him. Lila did her best to sound upbeat and supportive – to point out that she knew something was wrong without actually saying anything of the sort. She used phrases like “just for a checkup,” or, “just a chat, you know, if anything is on your mind.” Ben didn’t know how to feel about this. Ben #1 wanted to say, “What do you mean – a chat with the doctor? I don’t need a check up! Stop heckling me about everything, let’s just eat already.” Ben #2 wanted to let the tears finally out, to expel the frustration and confusion that was polluting his being. This Ben wanted to open up to his wife, to be able to keep up with his son, his dog, and with his old rhythm of life and say, “Thank you honey, I’ll see him tomorrow. I love you. The food smells wonderful.”

Instead, Ben took a new road, recently traveled, and said nothing. He pretended not to care because he couldn’t reconcile the Ben imposter and the Ben who was real, but horribly lost in himself. It’s not to say that he had no idea what was happening to him. He did – he just didn’t recognize it yet. Ben had snapshots of his teenage years, where his mother began to change. She was an expert mother, she ran a leak-tight household and had a passion for knitting. After Ben left for college, he would come and visit during breaks and see the relationship between his parents deteriorating. The house became dusty – running his finger over the living room lamp, he collected an earplug-sized formation of fuzzy grey. Dad left, and Mom moved closer to be with Ben after he graduated, got married, and bought a house. She aged quickly, eventually needing a full-time nurse. His mother was incredulous about seeing a doctor – she had a patently unshakable fear of doctors because her father went to an institution and never returned. She would call Ben to take her to the fabric store to buy yarn, sometimes three of four times a week. Ben remembered her strange mood swings, her shaking hands, and wondered if she could even knit anymore. More importantly, he wondered if she was still the woman who raised him – Ben couldn’t see that woman any longer, but felt obligated to indulge her. Each time they went to the store, Ben’s mother relaxed, picking a rainbow of different yarns, which Ben happily paid for. Unlike past years, Ben never received his Christmas bulky sweater, or multi-colored scarf. When she died, Ben cleaned up her house, and found closets full of unused yarn – covered with dust. The knitting needles were nowhere to be found, and Ben could only conclude that someone had thrown them away.

So, answering the question of “what is happening to me,” was more delicate and far too personal to approach with any steadfast rationale. To say Ben saw his deteriorating mother within him would be inaccurate. That Ben had been quieted by the convincing speech of denial – he was fine. If Ben couldn’t lie to himself – like when he forgot his briefcase for the third time this week, he would decide it didn’t matter at all – he had missed the meeting anyway and nothing he could do would change that. But all this was not lost on Lila, the family physician – or Ben, completely. Although Ben said nothing about his wife’s meeting with the family doctor, he said nothing about the appointment she had promised to make for Tuesday, 9:00AM sharp. He would go, and as apathetic or irritable as he might be that morning to have his wife drive him – “just to make sure he got there on time.” He went for a short walk with Auf that evening – which his dog was all too happy to be on, and went to bed. He didn’t thank his wife, nor did he bring the tennis ball on his short walk around the block; but the most internal piece of Ben, the piece that really mattered, was ready to get back some hope that would bring the beat of his life, back to ordinary.

For further reading on the topics discussed:

1. Behavioral Symptoms of HD: This link to the HOPES website includes information on the behavioral changes associated with HD. This includes the causes of behavior change, what behavioral changes commonly occur, and potential treatment to manage symptoms.
2. HD and Family: For greater understanding of family interpersonal dynamics and HD, click here
3. This links to the “Cognitive Symptoms” page of the website, which provides information on what cognitive abilities could be compromised by HD, what causes these symptoms, individual variability with respect to symptoms, and treatment options available.
4. HD and Driving: For detailed information about HD and driving, please link here.
5. Family History: This links to information on the inheritance of HD on the HOPES site. This provides the genetic background of inheritance and approaches practical family questions concerning the potential inheritance of HD. It may be insightful to visit the Genetic Testing part of the site as well.