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Stories of HOPES: “Bryan’s Dad Visits Dr. Kealy”

“Bryan’s Dad Visits Dr. Kealy”

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?”

“No.”

“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.”

Dr. Kealy looked steadily at Ben, “Like I said, I can’t say with absolute certainty…But I think you may have HD…Huntington’s disease. It’s a neurodegenerative condition.”

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 understand.”

“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:

  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. Physical Symptoms of HD: This links to the “HD Basic” page on the website. It provides useful knowledge on the physical symptoms associated with HD, primarily chorea.
  4. Cognitive Symptoms of HD: 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.
  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.
  6. Genetic Testing: This link explores a variety of topics on genetic testing, such as: testing guidelines, what takes place during genetic testing, what the test actually does/means, accuracy of the test, confidentiality, and the benefits/consequences of a genetic test for HD.

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