[BobbyB]

Lost to Lou Gehrig's disease
Even as her light faded, their love burned bright
By Jessica Ravitz
The Salt Lake Tribune
Article Last Updated: 01/07/2007 01:09:43 AM MST


Click photo to enlargeJess, right, and Jody share a tender moment Nov. 19 at their... (Leah Hogsten/The Salt Lake Tribune)«12»Related
ALS stories
Jan 7:
ALS patients become prisoners in their bodiesFront and center, Jessica Conaty was where she belonged. It was where she'd been for seven years, ever since she learned her partner would die.
She stayed strong as she welcomed mourners, greeting them with smiles, wisecracks and hugs. Those closest to her would call it "typical Jess." But here in the wooden pew with her arms locked across her chest, listening to the music Jody had selected ages ago, her tears finally fell.
Straight ahead, propped up near where the urn would stand, was a picture of Angel's Landing in Zion National Park, the very picture Jody Lynn Heileson had admired from her recliner in the final years of her life. The very place where Jess had promised to spread Jody's ashes.Jess & Jody Multimedia
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Love.
Theirs transformed minds and hearts, offering a lesson in devotion and proof that what exists between two people cannot, should not, be dismissed. Facing certain death, they chose laughter and taught others to not be afraid. They knew the light inside trumped anything the body could or couldn't do.
When the pair first met 10 years ago working at Boeing in Salt Lake City, they agreed on one thing: They would not get along. Jody was the consummate extrovert, not above posing and flexing her muscles at barbecues. Jess was laid-back, less inclined to seek attention.
By the time they clicked two years later, they were inseparable and

indefatigable. Between racquetball, kickboxing, gym workouts and jujitsu, they never stopped. Jody also ate up competition in softball and tennis. A marathoner, her left calf bore a Road Runner tattoo.
Thinking back in the final weeks of her life, Jody grinned as Jess admitted, "She kicked my ***."
Smalls & Peewee

Slurred speech was the first sign something was wrong with Jody. It began in 1999, about three weeks after she had a hysterectomy. The couple visited a slew of doctors in search of answers. One repeatedly asked Jody how much she'd been drinking. Others spoke of a possible stroke, maybe multiple sclerosis.
At the time they thought, please make it anything but a stroke, anything but MS. Later, if they could have snatched back either diagnosis, they would have.
Jody, then 40, learned she had ALS or Lou Gehrig's disease, a degenerative disorder that would sap her ability to speak, swallow, move and eventually breathe.
"Smalls" - 5-foot-3 Jody's nickname, as in "Smalls, you're killing me," a line in the 1993 film "The Sandlot" - hid in bed for three days. But then Jess, 5-foot-2, marched in with orders: "Get your *** out of bed. Now." Jody did.
From there, Smalls and Peewee (Jess's nickname) forged ahead.
Jody worked for as long as the most advanced technology could accommodate her. The couple took road trips, visited Disneyland and joined friends for a raucous rafting trip on the Snake River.
By then, Jody couldn't paddle or drink beers. But "she was sounding like a drunk, so she fit right in," Jess joked a couple months ago, as Jody smiled beside her. They found humor in ALS. They had to. When she could still get around, Jody was known to "ricochet off walls" and have wipe-outs - such as her signature flip over the coffee table - that left the pair in stitches. Once, by accident, Jess dumped Jody from a wheelchair.
"Smalls, where'd you go?" Jess remembered saying to the laughing heap on the floor.
One day, with Jody unable to protest or shoo them away, friends gathered around to bleach her dark hair platinum blonde. Jody was the "butt of jokes," Jess said, but these were good times.
Hearing this memory, Jody grinned and rolled her eyes - those expressive eyes.
With one look, she could beckon someone to her side. When she said she was happy, the sparkle backed her words. She'd peer up with gratitude when visitors stroked her arms. And when she was mad, she'd fire off that glare - "and you all know what I'm talking about," friend Pam "Bigs" Roberts would say later to a laughing funeral crowd.
'It could be worse'

Not everyone could see Jess and Jody for what they were; some chose to call them "friends" or "roommates." While they didn't share a bed for the last five years of Jody's life - lying down made her choke - watching them communicate showed they were more.
Jess would kneel beside Jody's recliner, maybe reach out to cup her partner's curled hands or stroke her feet. Jody couldn't speak, but she did mouth letters Jess could read. Their eyes would lock, and slowly the words would follow.
"P? U? You want me to push up your legs?" Jess would ask.
Jody could blink "yes" or gently rock her head to say "no."
"I? New word? L? O? V? Thanks Smalls, I love you, too."
When lip reading failed, Jess used a white board, marker and chart, on which rows of letters corresponded with a number. If Jody blinked at "1," for example, the letters were narrowed down to "A, B, C, D." Jess noticed if Jody had something to say, and she'd stick by until she was done saying it.
They had a system. Jess, whom Jody called "Saint Jessica," would rise at 5:30 a.m., check on Jody, then drive from Taylorsville to work near the Salt Lake City airport. She'd shuttle home throughout the day to feed Jody her Ensure protein drinks, keep her comfortable, "fluff her up again" between visitors and finally to stay from 2:30 p.m. on.
Beneath blankets that hid her feeding tube and catheter, Jody said she wasn't angry. She called herself lucky. "It could be worse," she said through Jess. "I have no pain."
She enjoyed simple pleasures. A taste of gravy, before it was suctioned from her mouth. The warmth of biweekly showers and straight-from-the-dryer towels thrown on top of her. Rocking out to old favorites like Erasure. Watching DVDs or anything on ESPN.
Jess didn't drink coffee, but she'd brew pots for Jody to smell. Faith in friendships

The couple would say the seven-year journey taught them who their friends were. Many people vanished, but those who stuck around saw beyond the disease. Jody's spirit was the same; her quick wit still there, even if her comedic timing was off.
"That is the hardest thing for me - telling jokes," Jody said, with Jess' help.
Friends brought parties to the pair's home. If Jody began to fade too early, Jess would fill a large syringe with Red Bull and shoot it into her feeding tube. Once, while others were tossing back tequila, Jody demanded a shot of her own.
Day to day, visitors streamed through the living room where Jody stayed. There was the hospice nurse whom Jody called "my angel," the aide who painted her toenails to match the seasons and the massage therapist who helped ward off migraines.
Jody's former girlfriend, Pam "P.J." Jennings, a nurse, clipped Jody's nails and helped bathe her. Dean Omer, a Boeing co-worker and "soulmate" who would later serve as pallbearer, spent Friday afternoons with Jody, napping on the couch and talking about issues they preferred to keep to themselves. Two regulars - Bigs, who spoke at the funeral, and her partner, Kristi "Half Pint" Johnson - went with Jess and P.J. for matching lighthouse tattoos.
When Jody, whose love of lighthouses was legendary, saw what they'd done, she cried.
Friends gave comfort, but in grappling with death, Jody also sought out spiritual sustenance. Tucked between the recliner's cushions was a handmade rosary, a gift from a cousin. Jody, originally from Southern California, had been raised in The Church of Jesus Christ of Latter-day Saints. But she came out as a lesbian just after serving a mission in Chicago and felt she was no longer welcome.
She took the embrace of West Valley City's St. Stephen's Episcopal Church, where she was baptized in May 2005.
Because Jody was homebound, the Rev. W. Lee Shaw of St. Stephen's brought the parish to her. Volunteers made weekly visits. Shaw came to offer prayers and Holy Communion. After he consecrated the bread and wine, Jess ground the wafer, mixed it with the wine, and by way of her feeding tube, Jody was blessed.
But visitors said they were blessed even more.
"Just being with the two of them . . . added to my life, and I needed it," said Dan Herron, 60, a former Catholic and soon-to-be Episcopal deacon. "Here I was the minister being ministered to.
'I'm ready'

As a same-sex couple living in Utah, Jody and Jess weren't stupid. They knew they needed protection if their love was to count in the eyes of the state. So years ago, they met with an attorney to churn out legal documents. Jody gave Jess power of attorney and named Jess her representative after death.
Weeks before she died, Jody asked Jess a question. She wanted to know when she'd know she was "ready to go," Jess recalled, her voice breaking and eyes welling. "I told her, when the thought of not being here is a relief. . . . She looked at me and said, 'I'm ready.' Try keeping it together after that."
As for herself, Jess said, "I'm as ready as I can be. In many ways, I've already lost her. . . . Sometimes, when I look in her eyes, I can't see her."
Jess hung tough. No therapy, support groups or frantic "help me" calls for her. She was 16 when her mother died; she could handle this.
The first time, in years of caregiving, that she broke down to Bigs and Half Pint was after Jody said she was ready to die. Jess called them from her Jeep, parked in the driveway with only the wall of the house separating her from Jody, and sobbed.
Soon after, Jess took leave from work. She helped sort through Jody's old boxes and history. She slept on the couch, if she slept. The nights were rough, and the Red Bull (now for Jess) flowed freely.
Wouldn't pick up her body

About 36 hours before Jody died, hospice nurse Dana Travis reached for her shrunken arm. Three times she tried to take Jody's blood pressure, but the pulse was too weak. Jody's body had stopped tolerating food. Feedings now made her uncomfortable, and she'd asked for them to stop.
The eyes were dim and the lids heavy. Jody had more to say, but she blinked at almost every letter, every number.
"1? 2? E? E?. . .5? 6? U?," Jess kept at it, even as she cried. She leaned over Jody, who fought off sleep, running her hand gently across her cheek, the top of her head and over her eyes. "Please, Jody," she begged, "take a nap. Just relax. OK?"
Jody died early Thanksgiving morning. She was 47.
Jess removed the catheter, the feeding tube and "got Jody looking more like Jody." She then sat there, alone with her partner, and said goodbye.
It was Pam who offered to call the mortuary that morning. The response she got left her, and Jess, stunned.
"They wouldn't even pick up her body," Jess said between tears. "I was so . . . angry, I couldn't breathe."
After all they'd done, legal documents didn't seem to matter. The mortuary required permission from "a blood relative" to retrieve Jody's body, Pam was told.
Fortunately, Jody's brother was available to call. And her mother, days later, faxed a consent form giving Jess full control of arrangements. Had Jody's mom insisted on a traditional burial and LDS service, all their plans would have been for naught or required court action.
Peewee's to-do list

Several days before the funeral, Jess sat on the carpet, in a living room that now seemed too big. With her hand inches away from the indent Jody's hauled-away recliner had left behind, she spoke of the gifts Jody had left her. She'd perked up once more to blink, "I love you." And there was the letter she'd written back in 2001, words Jess had promised not to read until Jody died.
"I was definitely the lucky one to have found you," Jody had written. "Thanks for not giving up on me. . . You have made me a better person. I want to thank you for that. For all the great times we have had."
Now, alone at 32, Jess felt lost. Her 24/7, 365-days-a-year commitment was done, her schedule clear. Too clear.
"I haven't thought about myself for six years," she said. "This has consumed every part of me."
But Jody had thought ahead and left Jess with plans: "Peewee's to-do list," as dictated by Smalls, to be completed within two years.
Jess must go to Ireland, Hawaii and Mount Rushmore. And the roof, it'll need fixing.
But No. 1 on the list will take Jess to the top of Angel's Landing, on Sept. 9, exactly eight years after Smalls and Peewee stood there together, enjoying their favorite trip as a couple.
Looking out and upward, she will spread Jody's ashes, fulfilling a promise she made to the woman she loved.
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* JESSICA RAVITZ can be reached at jravitz@sltrib.com or 801-257-8776.


To learn more about ALS or support national efforts to find a cure and treatments, visit the ALS Association at www.alsa.org or the Muscular Dystrophy Association's ALS Division at www.als-mda
.org.
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