Stories of HOPES: “Bryan’s Dad Plays the Game”

“Bryan’s Dad Plays the Game”

In this story, Bryan’s Dad decides that life is a game, and no matter how bad the odds are, it’s worth playing. He begins to confront his fears about having HD and decides to meet with Dr. Kealy’s patient, Trisha, to get more information about living with HD and genetic testing. They become fast friends but spend most of their conversation talking about their histories with HD. Trisha gives Ben encouragement and advice, but also raises the question in Ben’s mind if his son, Bryan, will eventually develop symptoms for HD. Notably with higher spirits, Ben and Trisha plan on having a family dinner at Ben’s house, strawberries included.

“Ben! Come on down! You’re the next contestant on The Price is Right!”

Bob Barker had been around ever since Ben could remember. He was a symbol of America, but more importantly, a symbol of Ben’s weekend mornings with his mother. He had always wanted to be on the show. Not because he was an expert shopper, but because of the exhilaration of seeing his face surrounded by flashing lights on television. Every Saturday, like this one, he woke up to Bob’s perpetually smiling face and dogged public reminder to spade and neuter all the pets of the world.

As Ben sat in front of the big screen, feet propped up on the ottoman and a plate of eggs and bacon on his chest, he wondered what he should do next. Lila had cleaned up the breakfast table already, and was busily scouring the internet, studying up on HD. She had taken up the reigns – all the nervous energy and worry she felt about her husband was conducted over to the keyboard. Bryan was out in the backyard, shooting Nerf guns with a friend from school. Lisa squealed as Bryan shouted, and of course, Auf added to the clamor. Ben finished the last of his breakfast during a commercial break. He knew he should call her – he owed it to his family and to himself to talk to Trisha. She knew what he was going through and could talk to him outside the sterile confines of a hospital or doctor’s office. Dr. Kealy had called and said that one of his patients, Trisha, had agreed to speak with Ben if he desired. Dr. Kealy explained that Trisha had been genetically tested before she had any symptoms of HD and that she was reallynice – extraordinary even. Despite his doctor’s enthusiasm, Ben was confronted with a wash of conflicting emotion. Calling Trisha would make things unrelentingly real. It was as if Ben saw HD in a distant world, like the people on TV. Now, it was as if he was thinking about calling Bob Barker himself!

Lila took Ben’s hesitation in stride. Her internet sleuthing had given her an understanding of what people with HD go through – the emotional strain imposed by the progression of the disease and the uncertainty of Ben’s situation in general. She resisted diagnosing Ben’s behavioral symptoms as she saw them, knowing full well that her husband might be “depressed,” “apathetic,” or in “denial” – but also that her role was to provide a stress-free environment. If she couldn’t go to work to make things easier for him, she would definitely make sure her “house” was a “home”. If that meant she left the sticky note with Trisha’s number on Ben’s desk and allowed his Price is Right fix, so be it.

Ben stared at the screen as if in a trance – but his mind was boiling over. As Ben thought about the show, he imagined that in many ways, he was already living in The Price is Right… with one exception – everyonewanted to be on the show, not him. The odds of having HD were pretty low – Lila and Dr. Kealy had told him as much. The odds of getting called down by Bob Barker were abysmally small too. However, Ben had been one of the rare individuals confronted with the issue of getting tested for HD – “Come on down!” indeed. It was difficult not to feel sorry for himself. Although Ben didn’t really know if he had HD, he felt confronted by so many facts that hope seemed to become a hopeless option.

An old woman just lost Plinko and a man was called down from the undulating crowd. He rushed down as if all the jumping bodies and waving hands catapulted him to the stage. It wasn’t as if Ben was forced to get tested. He wasn’t forced to call Trisha – he would decide when he would come on down – not HD. But still…confronting the problem or running away and never knowing for sure…which was worse?

A middle-aged woman from Phoenix guessed closest to the price of an elliptical exercise machine. She jumped up on stage, her mommy jeans cinched up past her belly-button. Bob Barker unveiled one of the gates to the next prize – “Doris! You can be the next owner of? A brand new BOAT!” The woman was from Phoenix – Phoenix! What on earth did she need a boat for? From the look on poor Doris’ face, you could tell she didn’t have a swimming pool let alone a lake, and was asking herself the exact same question. Ben understood that getting “lucky” was most certainly relative. People get struck by lightning? that’s pretty “lucky” in a perverse twisting of the word, right? Doris played the game anyway – it didn’t matter if she wanted the boat, she played the game nonetheless. Ben thought about this; life’s a game too, you just have to play the game. He may have not got lucky the way he wanted, but even if he – if Doris – didn’t like their prize, there was always the “Showcase showdown.” There’s always something to look forward to if you know how to play, and believe the game could be won. Ben sat up slowly and turned the TV off before the game ended. He figured it was about time to give Trisha a call.

Ben washed off his plate and looked out to the backyard from the kitchen window. Bryan was throwing a tennis ball back and forth with Lisa – teasing Auf who thought all tennis balls were his and his only. Auf leaped into the air to intercept the ball. Bryan was smiling.

Lila called from across the living room, “Honey! Is the show over yet? Remember we were going to the farmer’s market today.” Lila poked out her head from their bedroom. Her lips turned up in a smile, the apples of her cheeks seemingly glossed like she was in a toothpaste commercial. “I’ll remember to bring the sun-block this time!” She winked.

For everyone, there are countless reasons to live. For Ben, there were two big reasons to start living the best he could. Ben returned the enthusiasm of his wife, and said he’d be ready in about an hour. Lila returned to the computer and Ben picked up the bright yellow sticky note with Trisha’s number. He paused before dialing the number, rubbing around the edges of the post-it. Then, as if Ben decided not to think too much about it, he dialed.

“Hello?” A woman answered in a Southern accent, a little out of breath.

“Um, hi. Trisha?”

“Yeeees, this is she” Although she seemed in a rush, Trisha’s voice was loud and friendly.

“Yeah? My name is Ben – did Dr. Kealy—”

“Oh yes! Of course, Dr. Kealy told me you might call. How are you doing?” Her Southern drawl became immediately welcoming, but Ben’s heart was racing. He felt like he was in high school, asking someone he never met out to the prom. In reality, the situation had much higher stakes; he gathered himself and tried to match the brightness of Trisha’s voice.

“Oh, I’m doing alright I guess. This is a little awkward, but I was wondering if I could talk to you about some things? If you have the time of course.”

“I understand, Ben. But I was just running out the door with my son, Todd – he’s such the handful! I would love to talk with you though.”

“Well if you’re busy…maybe another time.”

“Hmmm. I’m heading over to the park with the lake to tire Todd out some. I’m not a huge fan of phone calls anyway – do you live near the park? Maybe we could have a chat out in this beautiful weather we’re having today! It’d be a shame to pass up all this sunshine.”

Ben liked Trisha. He didn’t like talking on the phone all that much either, especially not about things like this.

“Sure, Trisha! That’d be nice. I have a twelve year-old son, Bryan. I bet he’d love to come along and give Todd some company.”

“Well that’s mighty fine – Todd’s ten, I’m sure they’d love to play around some. Okay then, we’ll be near the lake. Todd’s always trying to catch some fish with his little fishing pole. He never catches anything, but what can I say – like father like son!”

Ben and Trisha laughed a little more over the phone, their goodbyes interrupted by a loud crash in the background. Trisha sighed and said she had to go and see what Todd was “up to this time.” When Ben put the phone back on its hook, he looked up to the ceiling. He had felt a strange sense of camaraderie with Trisha. They hadn’t talked about HD at all, but the mere existence of someone who could identify with the “game” Ben was presented with was comforting.

He walked to the backyard door and yelled for Ben and Lisa. Lisa said she had to go home soon, but Bryan and Auf were more than ready to head over to the park. Ben felt the strange sensation of inevitable change on the way to the bedroom. Lila was getting ready to head out to the market, a light summer dress of butter yellow and flip flops.

“Hey honey.”

“Hey darling, are we about ready to head out?”

“Well, I just got off the phone with Trisha and…”

“Oh did you? Everything go well?”

“Yeah, it did. I’m heading over to the park to have a chat with her. I know I said we’d go to the market, but can we go tomorrow?” Lila’s smile held the underpinnings of the pride she had for her husband. She understood what guts it took to call Trisha – to confront his fears and to take action.

“Sweetie. Don’t worry about it – go to the park and take Bryan and Auf if you can. I’ll head over to the market to get some strawberries for tonight. Okay?

“Okay.” Ben leaned over to kiss Lila.

“I love you.”

He raced to get his shoes on and to ready the leash before he heard a reply. There wasn’t a need for one at all.

On the way to the lake, it was difficult to say who led who. Ben let Bryan walk Auf, who was tugging the boy along. Ben meandered a little behind, keeping Bryan in sight.

When the lake jumped into view, he saw a skinny boy with blond curly hair on the small dock jutting out into the lake. He was barefoot and leaning over the edge of the railing to cast the lure. On a bench nearby he heard Trisha’s familiar voice warning Todd that if he fell in snapping turtles would “bite his little toes clear off.” Ben was slightly shocked to see that Trisha looked exactly like she sounded; a slightly rounded woman with soft big Southern hair and a stack of magazines, most likely Martha Stewart Living. Ben was shocked because Trisha looked so ordinary. He wasn’t sure what he had expected to see, but it was surprising to see that HD could touch anyone – even a southern-born house wife watching her young child from a bench in the park.

Bryan was dragged by Auf to the clearing near the lake – the dog leaping and mouth agape waiting for a tennis ball to chase down. Somewhat shyly, Ben approached Trisha who had already seen him and waved him over to her side. She slid the magazines away in a gigantic tote bag while she shouted at Todd.

“Tooooooooodd! Look who’s here to see you. You see the boy with the dog over there, that’s Bryan – why don’t you say hi.” Todd dropped the fishing pole, which almost teetered over the edge into the lake, and bounded barefoot toward Bryan and Auf.

“Well, Ben – it’s nice to meet you! It looks like Todd and Bryan are going to get along just fine.”

“Looks like it. Mind if I take a seat?” Ben motioned to the space that Trisha had cleared.

“Of course! Of course!”

They looked out at the boys and the dog quietly for a while, the sun was high and the lake glistened in response. Trisha looked over at Ben.

“There’s really no easy way to start talking about this, but I’d like to help you any way I can.”

“Yeah, I know. I haven’t gone to the doctors – the specialists I mean – about anything yet, but I already feel like it’s been a long road. I really do appreciate you coming out to talk with me.”

“A long road is a way to put it, no doubt. But one that you don’t have to let get the best of you. I was tested a few years back – after my father was diagnosed in his mid-fifties. I remember being so worried about him! No one knew what was happening, everyone just saw him changing steadily, little by little. I had moved by then so it was really hard not being able to be around him all the time – not being able to help. When we found out it was HD and that it was hereditary…Definitely a long road.”

“I’m so sorry to hear about that…My mother was never diagnosed, but I think that she had HD – or at least that’s what I’m told. I just don’t know all that much about HD or testing, or what have you. I’ve already started to see some changes in myself—”

“Well, let me just tell you that getting tested is one of the hardest but one of the best decisions I ever made…” Trisha looked out over the lake and then craned her neck to make sure Todd wasn’t causing havoc. She looked into Ben’s face, “I have a family – a loving husband and Todd. I have things I want to do. I had to know so I could prepare. You know what I mean? I had to stop just sitting and wondering if I would be next, if my life would just change out of nowhere. I had to be in control, to start thinking about what I could do to live my life to the fullest, to the healthiest, so I could push off the symptoms for as long as possible.”

“But doesn’t getting tested make things too real? I mean, I’m just not sure I want to know everything – it’s just too much.”

“Honey,” Trisha took on a rather stern and motherly Southern drawl, “we’re in the real world. We got a lot to deal with, but if you love your life and your family, pretending that nothing’s happening is gonna rip you up worse than knowing the truth.”

“I guess, you’re right.” Ben sat with his back pitched forward, looking at the ground.

“Look, I know it’s hard – and I’ll tell you everything I can about my experience – but you have to make the decision yourself. But if you’re already seeing changes, you should make an appointment with an HD Center of Excellence as soon as you’re ready. I can give you all that info whenever you want it…”

“No, you’re right. I do want to get some answers, I really do. Can you tell me anything about HD, I haven’t really read up on it yet.”

Trisha was quiet for a second, and assumed her loud friendly manner again. “Well, I don’t know toomuch about genetics and things like that, but I do make the best banana blueberry pancakes you have ever tasted!” She laughed at herself for a moment, and went on. “But I’ll tell you what I understand – doctors are better for this sort of thing.”

“I’m not too great with doctors to be honest. I get pretty nervous.”

“Well, rest assured. The Centers of Excellence are genetic testing centers that specialize in dealing with HD patients. They’re really good at what they do, and the whole process is designed to make sure you know everything about getting tested before you make the decision.” Ben nodded while Trisha spoke, encouraging her to continue.

“Anyway, I’m getting ahead of myself. I’m what doctors call “pre-symptomatic.” I underwent the genetic test before I noticed any symptoms. From what I understand, the genetic test looks at a certain part of your DNA that shows whether or not you’ll end up getting symptoms for HD. There’s a genetic “marker” that traces inheritance of the Huntington gene. Since Daddy had HD, they said I had a 50% chance of also having HD. It’s hereditary, and since you get one copy from your mom and your dad, you have a 50% chance…”

Ben bit his lip while he listened. He understood so far, but he wondered about the test itself. “So, I think I understand that hereditary thing, but what do the doctors do for the test?”

“The doctors will send a lab a small amount of blood and take a closer look at the Huntington gene that you have. Now here’s a part that’s kind of difficult to explain, but the doctors check if you have a Huntington gene that is a little out of whack. When your body turns the Huntington gene into a protein, a person that has HD will have a protein that doesn’t work the right way. It doesn’t work right because it has some extra pieces that make the protein not do all the things it’s supposed to do in your brain. The doctors call it an ‘expanded C-A-G repeat’. Like I said, I’m not a genetics expert and you’ll have to talk to the doctor about it, but if you have too many of these C-A-Gs, then you will eventually develop symptoms of HD. I found out that I had too many and that I’ll likely start getting symptoms before I turn 50…” Her voice toned down a little – Trisha was still grappling with the reality of knowing she’ll get a disease before she feels anything. Ben was in a different boat – one that he didn’t feel all that great being in either, but he understood that it must be difficult just “waiting for the day…”

“Trisha? I mean, how do you deal with all this…waiting? Doesn’t it scare you that one day you’ll start changing too?”

“Ben, darlin’ – the thing is I knew all about that before I got tested at all. Like I said, I went to an HD Center of Excellence. Before you can even go into a doctor’s office and get a genetic test you get counseling first. I spoke to someone who explained (far better than I did just now) about genetics, HD inheritance, and especially how the test and HD will impact me physically, psychologically, and especially emotionally. They made sure I understood about the risks I was taking in going through with the test – about how much knowing that I either had or didn’t have HD…let alone the possibility of Todd…” Trisha choked a little on her words, her folded hand covered her mouth and eyes squinted, staving back any tears that might come.

Ben was startled, he hadn’t even thought about Bryan having HD too. “Wait, do you know if your son has HD?”

“No, Ben, I don’t. I think it’s too early to think about something like that – plus, he’ll make the decision himself to get tested when he’s old enough. I just worry, you know? I don’t want my baby staring the same problems in the face when he’s my age…But I guess that’s one of the best reasons for people who are at-risk to go out and get tested…to make sure that this disease doesn’t get any farther and affects more people than it already has.”

Ben felt like he was just punched in the chest. He looked over to the lake. Bryan and Todd had their shoes off, slopping around in the grassy mud surrounding the lake’s edge. He bit his lip again – the mere thought of Bryan…Ben wouldn’t, couldn’t think about it.

Trisha saw Ben’s gaze over to the boys. She reached over and grabbed Ben’s hand and held it tightly. She waited till Ben looked her in the face, “I’m sorry to worry you darlin’, but this is just part of the reality, part of the game of life.” Ben shook his head, not saying anything. He saw himself on The Price is Right with Bryan in the crowd. He understood, but it hurt terribly. Trisha let Ben be with himself for a moment. Ben eventually looked over to her, a sign to continue their conversation.

Trisha was a little quieter now, as if reverence must be paid to something. “After they counsel you about getting a genetic test, you’ll get a neurological exam to see if you’re showing symptoms of HD. If you are, you’ll get details about them to see what they can do to ease the symptoms.”

Ben cleared his throat a little, “What exactly happens in one of these exams?”

“Well, as I recall, they tested me for things like my reflexes, my eye and body movement, hearing, balance…that sort of thing.” Ben remembered Dr. Kealy’s friendly conversations as he conducted Ben’s “physical.” Trisha continued, “Then the doctors will do some brain imaging to see if there are any structural changes…which could explain better some symptoms that are already showing up. The doctors also asked me about my family’s medical history. That helps them ‘finalize’ a diagnosis I guess…After the doctors examined me, they said I wasn’t showing any symptoms quite yet, but that my family history put me “at risk.” This is when they told me I could choose to go through with the genetic test if I wanted.”

“And you did?”

“Well, not really…not at first.”

“Why not?”

“I guess I was concerned about getting the tests done. Maybe like what you were saying earlier – it made things too ‘real’.”

“But I thought you said that it was the best decision you ever made.” Trisha looked at Ben with a broad knowing smile. She seemed to relive the entire waiting process – to say whether or not she smiled about it or in spite of it was a mystery.

“Now Ben, I said it was the best decision I ever made, but also the hardest.” Ben looked at Trisha empathetically, but also with hard squinted eyes. He was trying to figure out from Trisha’s expression what had happened. Trisha didn’t seem to want to discourage Ben from getting the test, but also seemed to understand why someone wouldn’t want to go through with it.

“Trisha, what were you worried about?” Ben paused for a moment, “Sorry, that was a dumb question, but is there anything I should know about – a reason why there is a “wait” period before the genetic testing stuff?”

“Well, if you’re worried about your confidentiality, you really don’t have to. All the test results are strictly confidential – the doctors at the HD genetic testing place I went to wouldn’t talk to anyone about me, not even my family. It was a decision for me to make, and me alone.”

“Then what were you worried about?”

“A lot of things, really. I didn’t know if I wanted to know – not because I couldn’t deal with the truth, but because I didn’t know if others could…” Trisha squinted her eyes, the sun was blazing. She ruffled around in her tote bag and pulled out black round sunglasses. Ben thought Trisha looked like she was putting on a disguise.

“Should I tell my co-workers I have HD? What about my health insurance? What about my husband – I kept thinking; if that man only knew what he was getting himself into? I just kept thinking about my mother dealing with daddy…it didn’t look like a cake walk. I guess I was worried if I could trust my family, friends, and coworkers to still treat Trisha like Trisha, not like a ticking time bomb.”

“I’m sorry Trish – may I call you Trish?”

“Sure, why not, that’s what all my friends call me.”

“Did anything happen? How did you decide to get tested with all those thoughts running through your head?”

“Ben, I think you’ll understand when you get there. You just have to take some things on faith…I didn’t want to have anyone see me so afraid, lacking the faith. I just dove straight in…I loved and still love my husband. I have my family and my friends…I got tested and I told them. They all still come to Thanksgiving, now don’t they?” Trisha cracked a smile – it was bittersweet.

“What about where you worked?”

“I decided to stay home after I found out – I figured I needed to be closer to my family as long as I could. I never told anyone who I didn’t really think should know. It’s really personal for me.”

“I understand.” A silence passed. Trisha breathed out a heavy sigh and began to fan herself with her hands.

“So I took the genetic test. Found out I would probably get HD. I guess I was kind of ready for the result, but no one ever truly expects to get news like that…you always have hope, you know?” Ben nodded.

“After you come in to get your results – if you want your results, the testing centers have psychologists and psychiatrists interview you. To see if you’re taking things well and to help guide your “coming to terms,” that’s what they call it anyway…It was rough, but I have to say – knowing was way better than wondering.”

“Really?”

“Absolutely.”

“Why?”

Trisha grabbed Ben’s hand again, took off her sunglasses to look directly into his face. “Because I make the best banana blueberry pancakes known to man and go to the park with Todd – and love every second of it. I have learned not to take the day to day for granted. I spend as much time as possible with my family, do the things I want to do, you know?” Ben nodded in understanding.

“There’s only one way to fight back. You live your life to the best you can, and start taking care of yourself so you can live that way as long as possible. I have my “plan.” I take care of my body – eat foods that keep me in tip-top shape, exercise…that’s all I know to do – to win the game. Trisha smiled again and slipped the sunglasses up on the bridge of her nose.

A moment later, Ben and Trisha heard shouting. Bryan and Todd came bounding up, covered in mud and grass stains, laughing.

“Momma!”

“Dad!”

The boys squealed in unison, “Can Bryan/Todd come over tomorrow!?”

Trisha looked at Ben, a signal that she’d have no problem with it. Ben mouthed a “Thank you,” and looked at his son.

“Bryan, as long as you get cleaned up and help Mom with the dishes.”

“Daaaaaaad!” Bryan said, pretending to be annoyed.

“Oh come on Ben, cut the kid some slack.” Trisha winked at Ben.

The group said their goodbyes and Trisha said she’d ask her husband if they could make it for dinner tomorrow.

“I know it may be inappropriate, but maybe we’ll have some pancakes for dessert?”

“As long as you think strawberries would go well on top.”

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.