Unforgettable

Unforgettable

Ward family, College of CharlestonHow do you cope with the diagnosis of dementia? Some might let it crush them. Devastate them. But that’s not an option for John-Robert Ward II ´00 and his family. They have to keep going, to make sense of it. For John-Robert, it means capturing on film the one thing that this disease can’t take away from his family: the love they have for one another.

Story by Alicia Lutz ’98
Pictures by John-Robert Ward II ’00

Imagine looking at your soul mate and seeing no soul at all. Imagine living with the body, the shell, of someone you love fiercely – talking to him, caring for him, protecting him – knowing all along that he’s no longer there. Imagine watching your whole life – your family, your home, your understanding of the world around you – just crumble apart. Imagine knowing the heart-wrenching, unbearably cruel way things are going to go – how it’s all going to end. And imagine there’s nothing you can do to stop it.

The Wards couldn’t even imagine. They couldn’t even begin to fathom how to move forward, how to keep the pain and fear from eating them alive – how to cope with the horrors that lay ahead.

And so they did the one thing they knew how to do – the one thing that has always worked for them: They relied on the profound and constant love they have for each other.

It was, they knew, all they really had.

 ***

The Ward family was hardly immune to life’s challenges. It had its fair share of demons: depression, alcoholism, financial hardship. But there was something between these three people – the saintly surgeon, his ever-supportive wife and his adoring son – that lifted them up, that defined them and yet resisted definition. It’s easiest to call it love.

When the self-proclaimed wild child Cyndy Hartzog met John Ward – a handsome, eccentric young surgeon doing his residency at the Medical College of Georgia – she had no intention of falling in love or getting married. She’d seen how families operate, had been burned by love as a child and had no more room for that in her life.

But, it turns out, Cyndy’s life hadn’t even started. And she certainly didn’t know what love was. Not until this blue-eyed boy from Darlington, S.C., whose father was mayor and whose mother was a regular June Cleaver, picked her up in his Buick Electra and opened up her heart again, did she really know how to love or how to be loved. And thus her life – the one worth living – began.

Everyone could see that Cyndy and John had something that set them apart. There was something almost palpable between them, something that seemed to speak its own language. And with the birth of their son, John-Robert Ward II ’00, that bond only strengthened.

And it proved unbreakable. Nothing could shake the family of three. Not John Ward’s demanding hours as a general surgeon with a solo practice in Sandersville, Ga.; not his battle with depression; not his alcoholism, his rehabilitation or his inclination to sacrifice his family’s fortune for the health of his patients and his community.

To be in the presence of the Ward family, people have said time and time again, is to be in the presence of love. It is what they always fall back on.

  ***

As an only child, John-Robert Ward II turned to his parents for companionship from the beginning. Sure, there was Dip and Dicko and the other imaginary friends who had their places set at the dinner table. And he was quick to make friends with kids from the neighborhood or from tee-ball or church. But his parents were his best friends. And making rounds with his dad on the weekends was his favorite thing to do. Sometimes he’d have his own patients – a teddy bear on the operating table, for example. But most of the time he’d just saunter into the hospital behind his all-important father and hang out in the nurse’s station, where he’d speak into the “magic phone” (a.k.a. dictation machine), doing his best John Ward impression.

When your father is a general surgeon – the general surgeon – in a town with a population of less than 6,000, the lessons you learn about the world are different than those you’d learn if your father were, say, an accountant or a mechanic. You learn, for example, to be real still while your dad uses a marker to draw “incisions” on your body. You learn, more critically, not to cut the grass because this is what happens when you run over your feet with the lawnmower. You learn not to use tools, because this is what happens when you turn the electric screwdriver on your own hand. You learn not to use a pocketknife lest you end up needing stitches like the poor guy who showed up at your back door in the middle of the night. You learn not to get on a go-cart, because, Come on, son. Let me show you what happens to people who ride go-carts.

There were things, too, that John Ward would never teach his son, not because of some underlying danger, but just because they were things he didn’t do himself. He couldn’t pump his own gas or change a tire, he couldn’t do his own laundry or microwave a hotdog. But none of that mattered to John-Robert: His father, after all, could put people back together. Can your dad do that?John Ward, College of Charleston

To say that the young John-Robert was proud of his father is an understatement. He loved when his dad’s beeper would go off in church. My dad’s got to go do stuff. It didn’t bother him in the least when his dad had to leave in the middle of his baseball games. My dad’s important, so, you know.

John Ward was important. When he moved his family to Sandersville in 1981, the local hospital didn’t have an emergency room. It didn’t have paramedics. It used an old hearse for an ambulance. John Ward changed all that. Working quietly to turn Sandersville’s medical community around, John Ward wasn’t in it for the recognition.

And he certainly wasn’t in it for the money. He gave away more services than he was paid for – sacrificing his own family’s financial comforts for the health and wellbeing of whoever needed his care. It didn’t matter if they had any money, or if they could pay. He asked nothing in return, he just wanted to help. He was, in the eyes of many, a hometown hero.

And, in the eyes of John-Robert, he was a super-hero. John Ward would put on his scrubs and go from Dad to Dr. Ward – saving the lives and limbs of whoever needed it: his teachers, his friends, his friends’ dads. Everyone John-Robert knew knew someone who’d been saved by his dad.

And the only person he knew who could save his dad was his mom.

He’d seen her come to his rescue plenty of times – speaking for him in social situations, making excuses when he was ready to leave, organizing the mess that he’d made in the offices of his practice – but, it wasn’t until John-Robert saw his mom save his dad from himself that he got a real glimpse of her strength.

John-Robert knew his dad was an alcoholic. He’d watched him throw back more than a case of beer on plenty of nights. He knew that, while he and his buddy Marcus slept snugly in the G.I. Joe tent pitched in the backyard, his dad was sitting outside drinking beer until sunrise. He knew about the fights. Heard the arguments. And he knew his mom was saving his dad’s life when she made him choose: family or alcohol.

John Ward chose family. The Wards always choose family.

  ***

This was not the man Cyndy Ward had married. This was not her husband.

These were not his eyes. Those incredibly soulful blue eyes that could look into hers and communicate anything – those eyes that had given her strength, friendship, understanding and love for 38 years – had gone flat. There was no one behind them. Like someone had snatched John Ward away from her and left only a shell. Like he’d gone out for the proverbial pack of cigarettes – only he’d left his body for her as a relic, as a haunting memento.

It had started with what seemed like another bout of depression – perhaps worse than in the past, but still pretty classic: a couple weeks of getting out of bed only to eat and use the bathroom, generalized anxiety, compulsivity. But depression was one thing. This was different. He was different.

John Ward – the man who could put his mind through medical school, expertly learn the ins and the outs of the human body, introduce Washington County to laparoscopic surgery – couldn’t seem to learn the simple computer skills required of him at his new job at the VA hospital. He could take the human body apart and put it back together again, but he couldn’t learn how to get through three straightforward steps on the computer.

John himself understood that something was not quite right – that he was off his game, if you will. This only led to plummeting confidence, not just in front of a computer, but in front of every little task. He began to question every move he made – every decision, every judgment, every thought that crossed his mind. He couldn’t get anything done. He couldn’t stop himself from obsessing. Ward family, College of Charleston

Sometimes it was about discharging a patient. Sometimes it was about how far he’d have to run to burn off a Little Debbie Snack Cake. Sometimes it was about his wardrobe: He needed his shirts to be hung just so. No, they couldn’t touch each other. He needed more space. Half the walk-in closet wasn’t enough. Cyndy, there isn’t enough room. I need more room for my shirts. Take your things out. I need the closet to organize my shirts.

Cyndy did everything she could to accommodate what was clearly abnormal behavior for her husband. She moved her things out of the closet, she answered the same question 30+ times, she decided what TV show he was going to watch. Otherwise, these decisions just wouldn’t be made – the choice between Gunsmoke and The Jack Benny Program was just too much.

And yet options like, oh, shutting the door before using the bathroom at work, for example, went without consideration.

“It’s all just so out of character,” Cyndy told John’s sister over the phone one afternoon, sipping her iced green tea and slouching into the wooden bench on the front porch. “I’ve been to all our doctors. I can’t get anyone to listen. I keep telling them it’s not anxiety. It’s not depression. It’s something else. I’m telling you, something is really wrong.”

“Cyn! Cyn!” her husband interrupted. “I forgot to tell you—”

“I’ll be with you in a minute,” she called, “I’m talking to your sis — Ohhhh! John! Get your ass back in the house! You don’t have any clothes on!

“But I didn’t come all the way outside,” John Ward contended. “I didn’t go off the porch!”

If it all weren’t so alarming – if the behavior wasn’t so extreme, the implications not so worrisome – it may have been funny. And, looking back, maybe it was. But the husband she knew wasn’t really there for her to laugh it off with. There was no knowing exchange between their eyes. There wasn’t even a glint of John Ward behind those eyes – not enough to talk reasonably with. Not enough to ask, John, what’s going on?

John had abandoned those eyes. He’d abandoned Cyndy.

But she would gladly take the abandonment over the coldness that began to harden beneath this man’s brow.

Slowly, his obsessions, his compulsions, his lack of inhibition went from annoying to frightening. There wasn’t much that wouldn’t set him off into a cussing, raging rant: a frog that had jumped into the backyard pool, a clock ticking, a burned-out light bulb. He turned on Elvira: Once his favorite pet, the elderly Pekinese became the object of his scorn. She couldn’t so much as walk into the room without him kicking her. And he’d throw Cyndy’s cat, Eartha Kitt, should she happen into the path of his rage.

But mostly it was Cyndy who caught the brunt of John’s wrath. He got in her face, called her names and was just downright mean to her. Where was her adoring husband – the one who, even in the toughest times, had worshipped the ground she walked on? What cruel, mean man was this who had moved into his body? The things he was saying to her would never have passed her husband’s lips. And, as his furor – his cruelty – intensified, so did her fear. Could this man hurt me?

Cyndy could barely look at John anymore. She could hardly live with him anymore. Not like this. He was horrible. He was ugly. He was threatening and scary. He tortured her with his ridicule and hatred – driving her mad on the daily 7- to 8–mile walks he insisted she go on with him, always at the sun’s highest: on her about this and that, that and this, over and over and over and over again.

Until she finally lobbed a water bottle at him.

Things had fallen apart. She was defeated. And she felt horrible. What have I done? That wasn’t John talking. This isn’t John. This isn’t the man I married. I’ve got to get John Ward back. I’ve got to get my husband back. I can’t do this alone.

When you’re tired enough – when you’re at the end of your rope – you’re just relieved to find someone who will listen, who doesn’t blow you off. Even if that person, with just one look at the shell of your husband, says, “This looks like some sort of dementia. We need a neuropsychological evaluation.”

She knew figuring this out was the only way to get her husband back. She also knew there was a possibility he couldn’t come back – that she may have already lost John Ward for good. But she had to try. This was the love of her life, her soul mate. She had to do what she could. She had to fight for her husband.

And so she took this man – this stranger with the empty eyes and the mean streak – to be evaluated, watching as he blundered through the tests, unable to recognize basic images, draw the same picture twice or repeat stories told to him moments prior.

That mind, that intellect that she’d always respected: Crushed. Cyndy bit her lip, got up and left the room.

She wasn’t sure if she was ready for this.

  ***

It shattered against the wall, sending glass shards flying – some big, obvious, others so minuscule they’d be felt by unprotected feet for months to come. The bottle of marinade splattered everywhere, making a mess in every direction, sliding down the slick wall like the tears streaming down John-Robert’s cheeks.

Nothing was ever going to be the same.

The results were in. According to the psychiatric reports and Cyndy Ward – the proactive fighter, the leader in this march, the determined hero – John Ward has frontotemporal lobe dementia. The Ward men, however, insist it’s Alzheimer’s Disease.

Call it what you will, John Ward was losing his mind.

Why his mind? Why is it his brain, his genius, that has turned on him? Take anything, but don’t take his intelligence!

The exasperated anger had been boiling in John-Robert long before he hurled the bottle of Stubb’s Chicken Marinade across his mother’s kitchen that Christmas. They’d received the diagnosis six months prior, when the dogwoods were still in bloom.

John-Robert hasn’t been the same person since that day. He hasn’t been able to shake the anxiety. Hasn’t been able to have fun or to relax. He’s always expecting some phone call or visit bringing terrible news. It’s been seven years. He is so. freaking. tired.

He’s angry that he can’t get away from it – that it’s always hanging over him, that it’s not going anywhere. And when it does, it’s taking him with it.

The certainty of that prognosis is what gets Cyndy Ward, too. All she ever wanted was to grow old with her best friend, to be 90 and him be 94, and for him still to say, “I need for you to kiss me.” She was desperate to stop this thing from robbing her of that – she researched prognoses, statistics, anything that could slow this monster down. But there was nothing she could do except take a cue from her husband: Adjust.

“It worried me a little bit, but there was nothing I could do about it,” says John Ward. “So, I just live each day. And by the time tomorrow comes, it’s today, so I don’t worry about tomorrow. And I don’t worry about the past, because there’s nothing I can do about the past. So that’s a thing I don’t worry about. Just today, and I live it like that. And I’m glad I’m OK now, and if I get worse, what the hell can I do about it?”

A lot has already been done to pull John out of “worse.” Seroquel, for one, has balanced out his demeanor, subduing that mean streak that had manifested. A few lifestyle changes have helped as well – most significantly, Cyndy and John left their home of 27 years and moved down the street into a smaller, more manageable rental. Once again, John adjusted better than his wife. Publicly, she put on a brave face, but privately, it took a toll. Ward family, College of Charleston

It was just another hit that Cyndy’s taken with this thing. She’s the caretaker, the one who sees the real effects of this disease – not just the effects that John isn’t able to hide. She’s the one who has to be realistic, who has to think ahead. She’s the one who has sacrificed her home, her social life, her friendships (If you have friends who are diagnosed with dementia, or their spouses are diagnosed with it, don’t forget about them. It’s a very lonely disease.) – many times her own mental health.

She’s good at coping with the negativity outside of her, as well as the depression within. And she knows the value in shutting herself in the closet for a good cry every now and then.

She’s found comfort, too, in her new job at a skilled care facility, where most of the patients have dementias of some kind. It’s allowed her to stay on top of the latest research while also comparing John’s progression to others with frontotemporal lobe dementia.

So far, the Wards have been lucky. But, now six years out of the diagnosis – which, Cyndy figures, was made at least three years after John’s initial symptoms – things are likely to start escalating soon.

As if things aren’t intense enough.

There’s no such thing as light conversation in the Ward home – everything is uber serious, everything is repeated over and over and over and over again, a constant bombardment of increasing force. It’s one tirade after another. It doesn’t let up. Even when Cyndy retreats to the grocery store, she is chased by at least three phone calls reminding her of the things John has already put on her list. And when she comes home and he checks the bags, he’ll ask her why she didn’t get toilet paper. “It’s not on the list, and we’re not out,” she’ll tell him. To which he’ll answer with a speech about how they’ll be out next week. Exhausting.

Recently, Cyndy has noticed some memory loss – which John compensates for expertly by taking notes on everything. He takes notes about the TV programs he’s watching. He takes notes about the NASCAR race so he can talk about it with Troy the next time he goes to have his hair colored. He takes notes about movies he’s seen. About how to separate whites and colors for the laundry. He takes notes. Notes. Notes. There are notes everywhere.

There are more serious concerns, as well: beating his head against a wall, falling down while out running on the track and opening up the house to strangers (including someone claiming to work for a security system company: No, we don’t have a security system; here are all the entrances).

But Cyndy can handle all that. It wears her out, and she worries. But she can handle it.

What gets her is looking at John’s body and knowing he’s not there. That is not him. That is not my husband telling me he loves me.

She knows that John Ward loves her. But when this man says it, it’s not the same. It’s just not the same as it was when John Ward used to say it.

When John Ward told her he loved her, it changed her life. It filled her soul. That was the love that defined them. That was the Wards’ presence. And sometimes now, it just feels … flat.

  ***

There is no happily ever after to this story. No fairy-tale ending. All the love in the world can’t turn this one around.

The Wards know this. They know they’re already working on borrowed time – that they should be happy they’ve made it this long without a turn for the worse. They aren’t going to escape this. Sooner or later, this thing will rob them of their joy. It will take them down. It will put them to the test.

No one can be sure how it will happen, but the biggest fear is of being forgotten. Of those flat eyes no longer recognizing the other parts to his whole. No longer remembering to rely on them – to fall back on their love to get him through.

Ultimately, we know how this story ends. We know it will be heartrending. We know it will be hard.

But, while we know better than to make sense out of tragedy, let’s say for just one moment there is a silver lining – that there is a positive in this denouement.

It would have to be that celebration of the Wards’ shared love – their shared experience – that otherwise may have been overlooked. If it weren’t for John Ward’s diagnosis, John-Robert may not have used his camera to capture his family’s last journey together. He may not have relied on his camera to express his own confusion, anger and sorrow. Ward family, College of Charleston

For John-Robert, the camera has served as a barrier between his emotions and everything he’s faced. It’s allowed him to take it all in without having to get tangled up in heavy words that don’t quite express what he is feeling anyway. Oh, you want to know how things are going with my dad? Here, check these photos out. That’s how things are going. Pretty shitty, huh?

For others, though, John-Robert’s camera has captured more than just the tragedy at hand. It’s captured a profound and unbreakable love, a desperate and exhausting journey and the true spirit of this courageous family. It just takes a disgusting, awful thing and makes it beautiful in a way.

And, perhaps most importantly, it’s given John-Robert one more thing to share with his father – one more thing to do together. John Ward, it turns out, loves to model for the camera. And he’s pretty sure these portraits are going to be world-famous one day.

If nothing else, the collection, My Father’s Gifted Hands, makes John Ward feel good. And it makes other people feel … something. It makes them cry, it makes them reach out, it makes them share beautiful stories about how the selfless surgeon has touched their lives.

And, with any luck, he will continue to do so through the photographs. When John-Robert can no longer photograph his dad, he will photograph the artifacts his father leaves behind – the moleskin notebooks he’s been filling, his prescription pad, the poetry, letters, high school football jersey.

It’s his way of ensuring that he can always visit his dad – by handling his physical objects and editing his photos, he can always be with him, always hear his dad’s voice: Oh, you’re destined for greatness. You’re going to do so much. I’m so proud of you.

“I do feel at some point these things of my dad’s and these pictures are going to do me a lot of good, that something good will come of all this,” says John-Robert of his ongoing project. “Whether it’s just honoring my dad or furthering my career, I know he’ll be there with me, and that he’ll be a part of whatever happens. That way, he’ll live forever.”

It’s one “happily ever after” this disease cannot take away.

  ***

No matter what is robbed from the Ward family, it still has more than most families will ever have. It has a love that saturates their lives and lights up the currents between them – every exchange, every gesture, every word, image and emotion. These three people have each other. And they’ve been given the foresight to appreciate every last moment they have together.

John and Cyndy hug their boy tight – Love you, son. Love you, son. Love you, John-Robert! – before he gets in his car to head back home to Atlanta. They follow him as he backs his car down the driveway: Love you, son! We love you so much!

John-Robert extends his arm out the window, waving his hand high as he pulls away, smiling through wet eyes at the reflection of his mom and his dad – the hands between them clasped, their free hands waving him goodbye – as they get smaller and smaller in the rearview. He keeps his hand reached out to them until they’re out of sight.

It is, he knows, all he can do for now.

9 comments

  • You have so captured this wonderful family. They are such special people and mean so much to so many. They all three are awesome and the love they have for each other is incredible. My darling friend. Cyndy, is such a sweet, caring person but also has to be mighty tough to face the things she does everyday! Thank you for doing such an AWESOME job!!

  • This is a beautiful story. Even though the disease has stolen so much from you, I could still feel the love in every line of this story.

  • A beautiful story of an extraordinary family who I have begun to know through Facebook.. I just want to hug the three of them and give them all the strength that I can share…A beautiful story of family and love…

  • Touching article of a dear family who we’ve shared many memories with. You have captured with words what John Robert captures with his photos. Blessings……..

  • I have know and loved this dear family for over 20 years…..their love and committment for one another is the most beautiful thing ever. To know genuine is to know the Wards and for that I am blessed. I love YALL so very much.

  • Thanks for the healing tears that are running down my face, for expressing what I thought could never be expressed, for answering the question I avoid like the plague, for giving us all a face to something so insidious.

  • I have re-read this many times.Alicia did such a wonderful job telling our story,as did our son with his images.I pray this story,our story,will raise awareness.Thank you Alica and John-Robert.

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