Story of HOPES

#1

“Bryan’s Dad Isn’t Who Lila Remembers”

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 –”

“Yeah?”

“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 like baseball.”

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.

“Hey honey.”

“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! Ok? 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 ok? 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 ok 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. Ok?”

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?”

“Yeah?”

“Remember, you need to pick up Bryan from baseball practice at 4:45.”

“Oh, right. Of course, sorry. I’ll remember this time.”

Click.

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.

“Mom?”

“Hey honey! I’m sorry, but I’m with the girls now, can I call you later?”

“Mom… um, ok – I guess.”

“Pumpkin? Is everything alright? You sound upset.”

“No, I’m ok 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 ok? 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 know loves 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.

We hope you enjoyed this section of the HOPES website. To email this article to a friend, please click here. To leave feedback for the HOPES team, click here. Make sure to specify which article you're referring to.

-M. Woloszyn, 8/18/07

For further reading on the topics discussed:

• 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.
• HD and Family: For greater understanding of family interpersonal dynamics and HD, click here.

This series of short stories are fictional accounts inspired by the experiences of families living with HD. They are not meant to be instructive, but to serve as artistic impressions of the social and familial impact of the disease.

Last Modified: 08/05/2008

An educational product of HOPES, not to be used in place of medical care. For more information about HOPES, click on the Logo. To contact HOPES with comments or questions, click here.