Welcome to Other Resources:
- Companion Animals and Health
- Stories of HOPES
- HDSA Honors
Ben and Trisha’s family have dinner together and discover that support and camaraderie goes deeper than their mutual concerns about HD. Although the gathering ends happily, Ben is agitated by the thought that his son, who is like him in almost every way, will eventually develop HD symptoms.More
In this story, Bryan’s Dad decides that life is a game, and no matter how bad the odds are, it’s worth playing.More
Lila made an appointment for her husband to visit the family physician. It is difficult for Ben to confront his feelings and the truth, but during a “physical,” Dr. Kealy’s charm and listening skills manages to open Ben up. Ben talks about the changes he has dealt with and speaks openly about his mother’s mysterious condition. Dr. Kealy tells Ben that his preliminary thoughts are that he has HD, but Ben should undergo genetic testing to find out the truth. Ben takes the information bravely and Dr. Kealy suggests he should talk to a patient of his who has undergone genetic testing already. Ben realizes more than ever how much his wife and family mean to him. This story attempts to underscore the difficulty and the necessity of coming to terms, both medically and emotionally, with the potential of an HD diagnosis.
“Ben! Lila! Good morning and it’s so wonderful to see you!”
Doctor Kealy had been Ben’s family physician for many years now. The man had a contagious exuberance and it spread to his patients like wildfire, no matter their situation. Today, the wildfire had consumed Dr. Kealy’s face, his reddened cheeks commanding attention – not from embarrassment, but from sheer energy.
“We are having such revitalizing weather recently! Don’t you think? How’s Bryan? I imagine his earache went away without too much trouble. Such a healthy young boy – still playing baseball like a champ, I’m sure! Oh yes, just follow me back here. We’ll talk in my office – I apologize in advance for the clutter!
Dr. Kealy was a charmer – friendly and engaging. As difficult as it might be to imagine, he was an excellent listener. Not just to what was said, but more importantly, to things that he knew his patients could not say. When Lila called for the meeting, she didn’t tell him very much about the “problem.” But Dr. Kealy heard what Lila could not put into words – her worry, the relief in talking with him, the entire lingering ache of unknowns he could hear from her without the words. Now that she was here, he could see the sparks of hope all over her face – trying her best to smile enough for herself and her husband. At first glance, he had also read Ben – whose face remained flat like the surface of a deep pond. Something was happening underneath, that he could tell, but what was his responsibility to discover.
They made their way to Dr. Kealy’s office. He hadn’t lied, his office was a mess; the “every-man” qualities of imperfection in Dr. Kealy were strangely comforting to Ben and Lila.
“Oh, I’m so sorry! I forgot to bring another chair in here – doctors can be forgetful too, you know. Lila, please take my chair.”
“Oh, Dr. Kealy, that’s not necce—”
“Lila, I insist.” He encouraged her with a broad smile.
Dr. Kealy brought around his leather padded chair, and brought a foldout chair for himself from the hall. He crossed his legs and kept his hands in his lap. Dr. Kealy felt the tension in the two people who sat across from him: The wife who had so much to say – too much to explain clearly, and unsure where to begin. The husband who had the most to say, but was certain to do the least talking.
“I hope the two of you are comfortable. I just want us to have an informal discussion here; to open up a little to one another. I know I don’t eat dinner at your house, but I do want to say I care for the two of you like family.”
“Thank you, Doctor,” Lila replied, all too happy to break the silence, “I’m sure Ben and I will have no problem at all speaking with you…right honey?”
Ben shifted around in his chair and produced an almost inaudible grunt; a sound that spoke to his uncertainty, but also to his uneasiness about doctor’s offices. Whether or not it was an agreement or a struggling effort to respond, Lila couldn’t tell.
“Well, to begin – Ben. Your wife called me a few days ago and was a little concerned about a few things. As I understand, you haven’t been feeling too well lately. Of course all of us want you to feel at your best, so if you could explain to me about—”
“I’ve been a little off, that’s about it,” said Ben, rushed syllables shooting like a machine gun.
“I understand, we all have our ‘off-days.’ How long have you been feeling like-”
“I don’t know, um, well, maybe a couple of months.”
“Honey, please just let the doctor finish. He’s only trying to help! Dr. Kealy, I’m sorry, my husband has been rather…unpredictable with his moods?”
“Oh geez! Lila!”
“Shh shh shh,” cooed Dr. Kealy, “let’s calm down a little. Ben, your wife and I really just want to help. Lila, let Ben speak up when he’s ready.”
Lila sighed a little. She looked visibly disappointed – the office visit wasn’t playing out the way she had expected. After talking with her mother and making the appointment, she was certain that everything would go ‘up’ from here. Now, it seemed like Ben was shutting himself in – she felt the feelings of helplessness creep back in. She loved Ben, she truly did – and she would do everything in her power to help him. In all honesty, talking about the last several months were in his, and her family’s, best interest.
“Well, Dr. Kealy – my husband has been a bit off lately. Like I said, he’s had some mood swings. Sometimes he gets angry about the strangest things – or doesn’t seem to care about things he normally gets very involved in. Like work – he forgets his briefcase, or forgets to pick up Bryan from baseball practice? He doesn’t seem to want to take our dog out like he once—”
“I can’t, honey! I can’t – you know I would love to take Auf out more, but I just can’t!” Ben hunched over, his hands on his knees – veins beginning to become visible on his strained neck.
Lila leaned back, obviously saddened by Ben’s outburst. She looked appealingly to Dr. Kealy, who reclined and looked over the scene. His expression was knowing, and his brows furrowed over his good-natured face. He popped his knuckles slowly, and got up out of his seat.
“Well, I believe we may need to take this a little more slowly; one step at a time. Ben, do you know when your last physical was?”
Ben stared blankly at him, his forehead glistening with the beginnings of a nervous sweat. He shook his head meekly.
“Yes, I don’t believe you’ve been checked out in a while. Why don’t we go to another room and just run a quick check-up. Okay?”
Lila seemed defeated – as if Dr. Kealy was evading the real question, but relieved that her husband was at least in the doctor’s hands. The truth was, Dr. Kealy knew exactly what Ben needed. It was not as if Ben could not stand to be around his wife, but his guilt and embarrassment had taken over. Dr. Kealy knew that if he was going to be of any help here, he’d need to speak with Ben alone. Before he and Ben left the office, Dr. Kealy turned to Lila and gave her a comforting nod.
“We’ll be back in a few moments. Help yourself to some coffee in the lounge if you’d like.”
Ben had inherited many things from his mother: An intense affection for long Sunday afternoons outdoors, her blue eyes, her distaste for mayonnaise, and unfortunately, a fear of doctors. Dr. Kealy knew this without having met Ben’s mother. Out of the family, Ben came to the office far fewer times than Lila or Bryan. He also knew that Ben needed, no wanted his help. Through the aggravation and the strain he knew that Ben was afraid, and had so much to say.
“Ben, why don’t you take a seat on the table. It’s not the best seat in the house, but it’ll have to do.”
Ben chuckled a little – the first break in his downward turned face that morning. Dr. Kealy set to work, checking Ben’s reflexes, blood pressure, eye movements, and so forth. All the while, Dr. Kealy talked and talked. He ran the gamut: baseball, fly fishing, his own family life and the outrageous cost of car repair. The man had a way about him – he made everything into a joke: “Who knew that running over a curb would flatten my pocket book!? I killed that car worse than I killed my wife’s African violets!”
Ben had visibly loosened up. He was nervous though, his thumbs swirling around one another like a wind vane. Dr. Kealy had completed his exam, and was not too pleased with the results. He had noticed a slight twitching in Ben’s movement and slow responses to stimuli. At one point, Dr. Kealy had thrown Ben a small bean-bag shaped like a baseball; “Who’s your bet for the World’s Series?” As the ball sailed in a wide lob, Ben reached up awkwardly and missed catching it by a long-shot. He was obviously embarrassed by the miss, and Dr. Kealy glossed over the moment as if nothing had happened at all.
“So tell me, what’s been on your mind, Ben?”
Ben hesitated, weighing some invisible balance in his mind.
“Well, doctor – my wife’s not too far from the truth. It’s hard for me to talk about it, but I feel like I’m falling apart.”
“Hmm. Well, I definitely feel like that time to time Ben – but it seems like this has been happening pretty consistently for a while.”
“Yeah. I guess you could say things are slowly getting worse. I mean, I feel stressed all the time now, and really defeated by things I can’t do too well anymore.”
“Like what, Ben? You mentioned you can’t take the dog out like you did before. Is that it?”
Dr. Kealy sat back and listened. He heard about Ben’s inability to stay active with his dog and his struggles to deal with the rigors of his workplace. More importantly, Ben spoke about how all these changes were frightening to him – how he sometimes doesn’t feel like himself. Like somebody who wasn’t anything like him was taking over his body and his emotions. Dr. Kealy sat back serenely with an encouraging expression – inserting comments where necessary to keep the conversation flowing. He noticed how difficult it was for Ben to explain how that last several months had transformed him, at first slightly, and later, more perceptibly. The difficulty was not only in the sensitivity of the subject, but also in Ben’s ability to accurately express himself. He paused every now and again, exerting much effort to find the right phrases or the right word to describe how he once acted, and what behavior now replaced it. Dr. Kealy heard every word Ben said, sorting out the facts in his head and piecing together a puzzle.
After Ben had told everything and looked to Dr. Kealy with a longing expression, hoping something,anything, could be prescribed to bring his old self back. After a few ponderous moments, the good doctor spoke:
“Ben, do you have any brothers or sisters?”
“No. Mom always wanted to have more children…but I never minded being an only child.”
“Were either of your parents ever hospitalized for any reason? I’m afraid I never had the pleasure of meeting either of your parents.”
Ben pressed his lips together – hard. His face muscles stood out and his lips turned white – as if he had seen a ghost. Looking away from his doctor, Ben remembered looking through his mother’s small house, searching for the knitting needles that had once defined her. He shook his head.
“My mother got sick when she was about fifty years old. She was afraid of doctors, and as much as we – I mean – the family, tried to get her to go, she never would. We got a full time nurse for her, though.”
“So, she was never diagnosed?”
“I know this is probably very painful for you, Ben – but could you tell me about what your mother was experiencing?”
Ben caught on his own breath and closed his eyes. When he looked up, the pools of his eyes had deepened.
“I don’t know. No one ever knew. I don’t know.” The machine gun edge to his voice had returned. Dr. Kealy, softened his expression and nodded his head. He rose and placed a hand on Ben’s back – it was hot and damp.
“You realize Ben, your family is only trying to help you the way you wanted to help your mother? I don’t like talking about this any more than you do, but was she having some of the same problems you’re starting to have? Difficulty getting around? Not being able to do things she really liked to do?”
Ben felt as if knitting needles were working away in his brain, knitting a startling and horrible picture together. He knew what the doctor was saying, but wanted desperately not to hear him. He felt like dissolving in the presence of this reality, the truth that had been exhumed from memories past. Ben sat silent for a long time. Dr. Kealy couldn’t read him, but knew that what Ben would have to say next would be one of the most difficult tasks ever.
“Yeah, I mean, yes. Mom was having the same problems…” Ben looked up to the ceiling, feeling at once a huge weight lifted from his shoulders and a heavy cloud forming to replace the vacancy.
Dr. Kealy let out a small sigh – empathetic but deliberate; “Ben, what I will tell you now will probably be something you won’t want to hear, but something you definitely need to. I can’t say with absolute certainty what’s causing all the changes you’ve experienced. I’ll refer you to a neurologist, but you’ll have to take a trip to the city to speak with a specialist.”
Ben felt numb, but tried his best to listen attentively. Dr. Kealy seemed to be wrestling with himself for his next words. In a moment of courage, Ben finally took charge:
“Dr. Kealy, if you know what’s wrong with me, you can tell me.”
“Neurodegenerative? You mean?”
“Ben, we can’t know for a fact until you get more thorough tests. You’ll need an MRI and the neurologists at the city hospital will be able to tell you more. But our testing today has revealed some of the primary symptoms associated with the disease. Your loss of motor control, the slight shaking… What you told me about working, driving your car, forgetting things – they all might be some of the behavioral or cognitive symptoms beginning their onset.”
These moments don’t often happen. Those times where an inconvenient, yet already noticed truth make their appearance. Not just any truth, but one that will change your outlook on the future, your understanding on what is currently happening, and forces the past move into a new perspective. It can be, and often is – a tragedy. But, it is in such moments that we can see what someone is truly made of. In the face of an oncoming 18-wheeler, do I scream and cover my eyes, or do I take control of the wheel and save myself from impending destruction?
Ben kept his hands on the wheel.
“I understand. What can I do? Can I get better?”
“We can’t do anything until we get better test results. HD is not something I have had a lot of experience with – it’s not very common. But I know it’s genetic and is inherited from one’s parents. I believe this is what your mother had… But today the field of medicine is far more advanced. If HD is what you have, there is no cure – yet, there are ways we can deal with the symptoms. There are medications you can take to relieve them.”
Ben retained his strong posture, soaking in the information Dr. Kealy had to offer and trying to organize his thoughts.
“Okay. So I need to meet with a neurologist you say?”
“Of course, I can help you get an appointment. I’ll also find some information; there are some incredibly helpful websites you can visit to prepare for your appointment. Since HD is genetic, you will have to get tested to confirm the results… It is not an easy decision to make, and you will need your family’s support.”
“I’m not sure if there are any support groups in the area, but I had a patient some time ago that was tested for the disease, genetically tested. I’ll get in touch with her and see if she’d mind talking to you about the process. She was tested before any symptoms emerged…”
Ben asked a few more questions, and then readied himself to go back to Dr. Kealy’s office. He realized more than ever how much he needed his wife… and how dearly she needed to know what was happening. They were a unit. They loved one another more than anything, and she needed to know everything.
Dr. Kealy followed Ben out the door, one hand on his shoulder. They made their way back to his office and opened the door. Lila looked up from a magazine, and tried her best to smile. Dr. Kealy sat down at his chair, his hands placed lightly behind his head. Ben bit his lip.
“Honey, there’s something I have to tell you…”
For further reading on the topics discussed:
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.
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In this story, we meet Lila, a loving wife who is concerned for the wellbeing of her husband. She no longer recognizes him as the man she once knew. Unbeknownst to her, Lila’s husband has HD and is becoming symptomatic. Through her experience, we may understand the complexity of the family experience when encountering the signs of HD. Ben’s change in attitude represents how HD can alter behavior and cause stress on the family.
Lila breathed across a clouded coffee cup, drumming her fingers to the tune of a cold morning’s chorus of birds. The family’s dog, a rather spry Australian Shepard arched back, front paws splayed out and jaws opened wide, yawned a welcome to another day. Though the backyard was just a small rectangle, it was full and green with bright colorful patches of Nerf guns, a plastic bat, and an array of sports balls. Lila had her busy morning schedule down to a science: wake Bryan up and get his lunch made while he showered, make sure Ben got ready to go to work on time, prepare their breakfasts, ready the grocery shopping list, pass around kisses and “good morning, honey(s)!” She drove Bryan to school, grabbed the groceries, and was back at home with time to spare before Good Morning America. Lila should have prepared the marinade for this evening’s dinner, but instead she stared out over the backyard with a cup of instant coffee. She never drank coffee until she got the notion to pick up a can this morning. She winced at every hot bitter sip, calling attention to newly furrowed wrinkles on her young face. Close up, you could see her hands tremble weakly – she looked down at the rippling surface of her cup, startled at herself. They weren’t coffee jitters, the cup still almost full, releasing delicate spindles of steam into the creeping sunlight.
“What is wrong with me?” she whispered to Auf, who sniffed at her sandals. Lila laughed lightly to herself, more for the sound of laughter than anything else. Auf smiled broadly, ears pressed back and tail swishing slowly. She bent over to scratch his head, careful not to spill any coffee. Auf ran to investigate the yard more thoroughly, and Lila was again left with herself. Taking a few more harsh sips, she moved back into the small, yet impeccably clean kitchen.
“I guess that’s not the right question at all, now is it?” she thought to herself.
Cleaning off the table from breakfast, she saw that Ben had left his briefcase again. One of the clasps lay undone, and a few documents slid through the slim open space. This wasn’t the first time Ben had forgotten his briefcase – it had been happening more and more frequently over the past several months. Briefcases were a small matter compared to bills left months over due, the unshaven patch of sloppily groomed beard, and missed baseball game practices. Ben, the man she had married, was never late, always clean shaven, and an incredible father. Now, Lila, who couldn’t bring herself to admit it, didn’t even recognize him.
It wasn’t just the odd forgetfulness and slipping attention to facial hair that concerned Lila, but Ben’s attitude. All married couples have their squabbles – bouts of financial difficulty, differing theories of child rearing, and day to day stress. But Ben, the eternal optimist and compromising pacifist never raised his voice or disrespected his family, or anyone for that matter. His warm manner and cool-headedness served him well at his company. He was a popular guy, no doubt – dropping off bagels and cream cheese for his coworkers and cups of coveted Java Joe’s before straightening his tie for the early business meeting. Lila already knew something was wrong when Art, a close family friend and coworker of Ben’s called to ask if everything was alright at home. Ben had been missing his meetings and arriving late in such unexpected moods; sometimes distant and apathetic, other times nitpicky, aggravated, and just plain sad – never mind the lack of Java Joe’s and poppy seed bagels. Lila and Art bonded over their worry; Lila recounted the recently escalating arguments at home, and how Ben didn’t play baseball with Bryan or care to see his games anymore. Art asked if Lila had talked to Ben:
“Art! Of course I’ve tried – but he’s like a Mad Hatter recently. I never know what’s bothering him, or what’s on his mind. He comes, he goes and I just try to keep up. He doesn’t seem to care about the things he once couldn’t go a day without! I’ve had to take Auf for his walks – the dog gets so antsy without his walks to the lake?”
“Well Lila, I’m sure everything will pass. But maybe you need to talk to a counselor, or somebody. Ya Know? I mean, it helped Nancy and I – helped figure out some problems with our marriage we never even thought to talk about?” Lila was taken aback. Of course she was a good wife! It couldn’t be her fault, could it? Was Ben acting strangely because of her? She hoped not.
“Art, I don’t know if you’re right – I hope you’re not right about that. Of course I pray this is just a weird funk, and Ben will pull himself out of it. I just -”
“Well, nothing – thanks for calling Art.”
“Lila? You know you can always talk to me or Nancy about it. We’ve been friends for a long time? Just know that everybody at work is worried and just wants the best for you and Ben. Alright?”
“Thanks, Art – I appreciate it. I really do.”
Good Morning America droned in the background. Lila still held the coffee cup in thought. The murky liquid had gotten cold in her hands – the creamer starting to clump up in little islands on the rim of the mug. She set down the cup, thinking about what she needed to do. Whose fault was it? Had she done something wrong? What about Bryan? She couldn’t go another day defending his daddy to him:
“Of course daddy wants to see your game, honey! He’s just not feeling that good, that’s all. You know what? I’ll go with you – you can teach mommy all about it!”
“But MOM,” he dragged the word out in annoyance, “Dad always went to my games! You don’t even likebaseball.”
Lila breathed out a long sigh. She thought to herself, “Just admit it. Alright? Just admit it.” She shook her head, angry and confused. She held the bedraggled briefcase, pushed the papers back in neatly and clicked down the clasp. “I don’t understand, though. I just don’t.” She sifted through the mail, sure to pick out all the bills so the electricity didn’t get shut off again. Lila put on her reading glasses to read all the mail. She even read the junk advertising to avoid the question. The phone rang dully. Thankful for the distraction, she picked up.
“Ben? How are you – sweetie, I saw that you left the briefcase this morning?”
“Oh, yeah. Well, I guess I don’t really need it all that much. I missed the presentation this morning anyway.”
“How, honey? You left when I did.” The silence rang in Lila’s head like a dial tone. “Honey?”
She could hear him breathing still – the phone hadn’t gone dead. “What’s going on sweetie, you seem a little out of it. You know you can talk to me about—”
“It’s nothing! Okay? Jeez! I just was a little tired this morning and missed the exit. Alright? Why is everybody bothering me!” Ben took on an eerie sarcastic tone. “Beeeeen, are you feeling all right? Ben, you look tired. Ben, do you need to take the rest of the day off, Ben Ben Ben Ben Ben!”
A little stunned, Lila choke a little on her own words. A vein of fear seemed to crack open inside of her, washing her whole slight frame with renewed trembles and worry. Missed the exit? How could he have missed the exit? He had been working there for years, taking the same roads day in and day out. Something was wrong.
“It’s all right honey, I promise. I’m just a little worried. I love you – you know that. That’s about it. You’ve been acting a little funny, and I just want to be here for you.”
“Nothing’s wrong!” his last burst of anger seemed to do Ben in. He was quiet for a second. “I’m sorry, darling. It’s just – I’m just – well, I don’t know. I’m sorry. I’ll be home for dinner at five. Okay?”
Still unable to understand this person on the phone, Lila managed an “Uh huh.” Just as Ben was about to hang up, she remembered,
“Oh honey! Honey?”
“Remember, you need to pick up Bryan from baseball practice at 4:45.”
“Oh, right. Of course, sorry. I’ll remember this time.”
The phone conversation was the last straw to break the camel’s back. Lila just stared off into the distance – her hand clutching the phone, the spiraled chord dangling. Closing her eyes she felt the swell percolating somewhere beneath. She felt the blood knock at her temples and the ache of her hand on the phone. She wished she could crush it. The homely appliance that had forced her to wake up – to think about the last several months – forced her to answer the question: “What is wrong with me?” Hunching over and catching back the tears. She hated soap operas – she hated the horribly acted raw emotions that her girlfriends seemed to drink like the ether of life. They were just bored with their perfect lives – but Lila, felt on the verge of something deep, and was losing the battle. The phone began to yell at her, the squawking bleep of an unhappy appliance – wanting desperately to go back to the safety of its hook. Lila, as unhooked as she was, felt sorry for herself. “Just admit it!” She felt like calling her mother – a thing that she never used to look forward to.
“Hey honey! I’m sorry, but I’m with the girls now, can I call you later?”
“Mom? um, okay – I guess.”
“Pumpkin? Is everything alright? You sound upset.”
“No, I’m okay Mom, promise. Just call me later.”
“Darling, I wasn’t born yesterday. First off, you never call your lonely mother, and I never taught you how to lie. Talk to me, pumpkin.”
Lila let it spill – the whole string of strange changes with Ben. The mounting collection of concerns she never had to deal with before. Will Ben get fired? Does he love me? Will Bryan be all right? Does he love me? Is he really sick? Does he love me? If Lila’s Mom knew anything, it was that life was hard. Her parents were immigrants – she worked in their grocery store for long hours and dealt with her father’s early death. The woman could wash dishes in scalding hot water – her leathery hands immune to a light touch and well acquainted with hard knocks and pinpricks.
“Now Lila – you’ve got to recognize how lucky you’ve been. You married a wonderful man who I knowloves you very much. You have a beautiful son, and you’re healthy and strong as a mule.”
“Mom, I know – but I need him back. I need him back!”
“I know this is a frightful thing you’ve got going, but you come from pretty strong stock. You got this one in the bag! You need to get over your fear, and call a doctor. Talk to someone about this, and get it off of your own chest. You need some breathing room, Pumpkin. If Ben is sick, it’s better to know what it is than to keep wondering. Do it for him, do it for Bryan, and mostly – do it for yourself?”
Lila loved her mother – she always knew what to say. She gave her the clarity she needed through all the tears and the confusion.
“Pumpkin – you go look up some numbers right now, and set up an appointment. And who knows, maybe Ben will start shaving up nice and pretty again in no time!”
Lila let go a healthy laugh, one that shook her slightly and relaxed her reddened face. She thanked her mother, promised to keep taking the garlic supplements, and hung up the phone. Wiping off her drippy nose, she set out to complete her daily tasks – enveloped in a new security – one that makes no guarantees, but one of hope that the fibers of her family’s life will come back together again. She wrote down the number of her family doctor on a note pad – she’d make an appointment tomorrow and get some advice. She didn’t know if she needed a marriage counselor, a psychologist, or what. But the doctor would know, and the mere fact that someone else would shoulder some of her burden and give guidance under these circumstances was what she really needed.
Dinner was made and she waited in nervous anticipation for her husband to return. She didn’t know what was wrong with Ben – but she would hold on to the belief that she knew who he was, and that the unquestioned truth of their mutual love for one another wasn’t going anywhere fast…not if she could help it. The clock slid past five, and she told herself to be patient. The phone rang.
“Hey, Lila? Hi, it’s Mrs. Rolfes. I’m bringing Bryan home.”
“Um, thank you Mrs. Rolfes. I’m so sorry, I guess Ben forgot about Bryan’s practice. Thank you so much.” Lila felt the old pulse of dread come back – the worry that Ben was forgetting about those things that he used to wake up for. Mrs. Rolfes and her preening tone told her that she was not especially pleased to watch after other children. Lila knew that Mrs. Rolfes thought that she and Ben were bad parents – or at least uninvolved ones.
She finished the pleasantries with Mrs. Rolfes and called Ben’s cell phone. She tried to push down her anger at him. Lila told herself that Ben wasn’t well – it’s not his fault that he was acting this way. He didn’t pick up on the first call, but answered on the second.
“Hey honey. Sorry – I just lost my way a little. I’ll be home soon. Can’t talk now, I’ll run a light or something.”
Bryan was home before he was – sullen that Dad forgot to pick him up again. He clomped upstairs to put up his equipment and wash up for dinner. Half and hour rolled by, and finally Ben pulled into the drive way. Leaving the car door ajar, he walked into the side door. All Lila could do is muscle out a supportive and loving smile, give her husband a kiss on the cheek, and usher him in before the re-heated food got cold again.
For further reading on the topics discussed: