When time is the greatest gift, every day can be Christmas

By William Wan
Washington Post Staff Writer
Friday, December 24, 2010; A01

This is what the perfect Christmas gift looks like. It is a thick but comfortable coat. Size XXL. Made of a fabric that's warm but also a little slippery. The last bit is the most important part, Cathy Herman explained, as she roamed through the Bass Pro Shop at Arundel Mills mall.

When it comes to Christmas, she and her husband, Alan, have always favored sensible gifts, things they needed anyway. And this year, she hoped to surprise her husband with a coat they could slip easily over his head - the only part of his body he can still move - and thread his arms through without catching on the wheelchair that shuttles him around.

It was around the time leading up to Christmas three years ago that her husband first started having trouble walking. Then came the doctors' diagnosis: amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. And with it, the devastating prognosis: two to five years to live.

Since then, Alan, 58, has lost control of his body little by little, and Cathy, 52, and their three children have learned what it means to dig deep in life, to find joy in the season, to laugh and pray and hope together. At their home in Laurel, they've learned to celebrate each Christmas as though it could be their last.

But it's also something they don't often talk about, that they try not to dwell on.

If the disease has taught them anything as it's crept through Alan's body, it's that if you focus too much on what you have lost or on the future, you forget to enjoy what you have in the present.

A day earlier, it had been Alan's turn for Christmas shopping.

As soon as Cathy left for work, Alan began plotting his trip out, to pick up a few surprise gifts for Cathy while she was gone.

With the help of his full-time caregiver - a guy Alan likes to refer to as his "executive assistant" - he covered himself in blankets to brace for the cold and made his way out the door.

Although the disease has robbed him of the use of most of his body, he can move the index finger of his right hand and breathe and talk on his own, abilities he often puts to full use joking and ribbing his caregiver, Khen Greathouse, 34.

In the past year, the two have become fast friends. Each morning, they team-tackle online games such as Trivial Pursuit, shouting out their answers. They've put together a lineup of morning shows, headlined by Maury Povich and their favorite, "The Jerry Springer Show."

Maury, however, would have to wait today. Alan intended to get to Costco and back to hide Cathy's presents before she returned from work.

He was thinking of some sturdy wineglasses, remembering a comment Cathy had made to co-workers at a Christmas party a few days earlier about how few unbroken glasses remained in their home. He also had in mind a mattress heating pad and a little light for Cathy to read her books in bed.

Nights were now the sweetest part of their time together.

After Alan had to have a hospital bed installed, Cathy rigged a second hospital bed next to his so they could lie side-by-side. It hasn't been the most comfortable solution, but this way, they can hold hands every night while she reads and Alan watches cop shows on television.

"We don't let anything get in the way of that," Alan said with a chuckle as his finger pushed his wheelchair down Costco's long aisles. "We still manage to get some cuddling action going on."

The sun and the moon

Christmas has always been a big deal for the Hermans.

In fact, it was during the weeks leading up to it that they met more than two decades ago, introduced at a bar by a matchmaking friend. Cathy was about 27, a striking blonde who had just opened a hair salon on Main Street in Laurel.

Alan was 32 and recently separated, and he cut a tall and slim figure. After serving in the Army, he was working for the local water company.

It was an intense six months of dating. Alan hung out almost every day at Cathy's salon between contract jobs. After work, they'd hit the bars for cocktails and dance all night.

Finally, after six months, Alan asked Cathy, "Wouldn't it be easier if you moved in with me?"

The only way she'd move in, she replied, would be if they got married. Unfazed, Alan proposed.

During their first Christmas together as a couple, Cathy gave him a moon-shaped necklace pendant to match a tattoo she had of a sun. The idea was to be together forever, chasing each other just as the sun follows the moon.

After they had children, Christmases became an even bigger production: holiday lights out front, the tree and stockings and Mass on Christmas Eve, followed by a huge Italian-style family dinner afterward.

"The best part was when the kids got to that age when they knew Christmas was coming and were just counting down days," Alan said.

'What's wrong with me?'

As Christmas approached in 2007, however, Alan knew something was wrong. He had been getting cramps throughout his body, and his right leg would start to stiffen up, tripping him. He ignored all of it, though, until a fall in a parking lot one day sent him sprawling to the ground.

"What's wrong with me?" he asked his wife.

His doctors ran a battery of tests. On March 11, 2008, specialists at Johns Hopkins Hospital confirmed it as ALS. On the way home, they both broke down crying.

"I always thought I'd be the one to take care of you," Alan told Cathy, sobbing. "I never thought it would be like this."

But once he saw how devastated she was, he set about trying to cheer her up. "At least I can finally get a handicap sticker for my motorcycle," he teased. "Think of the parking spaces."

It took a while for their three children to adjust. The youngest, Mary, moved home from college to be closer to him. Their two sons, Bradley and Aaron, helped take care of him, as well.

Looking for hope, Cathy seized on something the doctors had mentioned. The prognosis was two to five years, but some patients lived for 10 years and longer. Can we just assume it's going to be 10 years? she asked him. Let's come up with a 10-year plan.

"I thought if I worked hard enough, if I took good enough care of him, it wouldn't get any worse," she said. "But it doesn't work like that."

They created a "bucket list" of things to do and crossed them off, one by one. Alan, a lifelong motorcycle fanatic, took a 10-day trip down to the Florida Keys with his biker buddies. He and Cathy went to the brewing factory for Coors (Alan's favorite) in Colorado and made a requisite pilgrimage to the annual biker rally in Sturgis, S.D.

But last year, after a particularly bad day just before Christmas, Alan told Cathy, "I hate to say this, but I just don't know if I'm going to make the 10-year plan."

The disease had progressed more rapidly than either had expected. By the end of the first year, Alan was falling constantly. He used braces to walk, and then a walker. Finally he had to use a wheelchair after a fall sent him to the hospital. At the recommendation of staff members at Alan's Veterans Administration hospital, they contacted Hospice of the Chesapeake, an intimidating move but one that has helped greatly. Together, they drafted a living will and started tackling such issues as power of attorney.

In the past year, Alan's physical deterioration has continued, first taking his shoulders and then his forearms, wrists and most of his fingers. September brought the worst blow of all: A problem with his gallbladder sent him to the hospital for surgery and left him weakened and struggling at times to breathe.

"We've lost a lot this year that we'll never get back. For example, he can't really hug me anymore," Cathy said, sighing. "But when I hug him, I can feel him trying to lean his head toward me. And he still makes me smile and laugh every day. It's made these small things so much more precious."

The greatest gift

Returning from his trip to Costco this week, Alan pushed the controller on his wheelchair with his one good finger, stopping next to the Christmas tree his daughter Mary had decorated.

"Sometimes, I think about how much time I have left," he said quietly. "You can't help it. You go to bed thinking about it. You dream about it; you wake up thinking about it. If you're not careful, it can consume your mind."

But he's also been thinking a lot about what's ahead. The biggest present he and his wife are giving each other this year is a trip next month to a hotel in Las Vegas with a super-accessible room, one that has a lift to move him directly from the bed to the bathroom, where for the first time in ages, he'll be able to soak in a tub.

Then, in July, he and Cathy will mark their 25th wedding anniversary with a huge party. After that, another Christmas will be around the corner.

But, he quickly added, he tries not to focus too much on the future. He wants to live in the present, surrounded by family, playing with his new grandaugther, Celia, and still able to talk and joke freely with his executive assistant and to go to sleep holding his wife's hand.

"Any day you can wake up and get out of bed, that's Christmas already."

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