Stephanie Packer has her husband’s name — “Brian” — tattooed on her wedding finger. She had that done because, due to her multiple ailments, her fingers swell.
“We would have had to have the ring cut off by now, and I didn’t want that,” she says. It was her first tattoo.
Their first date was at a Christmas party. Stephanie asked Brian to go.
“We hit it out of the park,” Brian says. They still tease each other about who asked whom on the second date, but in either case, it happened, and so did a third. They fell in love.
Stephanie had struggled with illness before she met Brian. She often felt sick as a child, but doctors dismissed her.
Stephanie had back surgery before she and Brian were married. Doctors told her it would take her two weeks to heal, but it took six months. She had to use a walker and couldn’t stand up straight. Brian would help her wash her hair in her parent’s sink.
Brian and Stephanie were married on Oct. 26, 2002, at Holy Family Cathedral in Orange, the same church where Stephanie, and later her four children — Brian, Scarlet, Jacob and Savannah — were baptized. When Scarlet was born in 2004, Stephanie experienced severe swelling and was then diagnosed with lupus and other autoimmune issues. Doctors finally recognized her illness.
“Most people never have to deal with what she has had to deal with every day,” Brian says. “She’s an amazing, compassionate person and she’s very resilient.”
Some days she had a difficult time even getting out of bed. Still, Stephanie served her parish in different roles in youth and young adult ministry.
But things got worse.
In 2011, doctors diagnosed her with bronchitis 10 times.
“I couldn’t stand up without passing out,” Stephanie says. “I don’t like not doing things. We were in PTA. My husband and I were in charge of the parish fiesta. So I didn’t want to go to the doctor and be told I was sick.”
Brian wasn’t having it, though. He told her, “Well, if you die, you’re going to have to stop doing things, so I think you should go to the hospital.”
In 2012, she was diagnosed with scleroderma, which she refers to as her primary diagnosis. Scleroderma manifests in different ways, but it most commonly hardens the skin and organs. In Stephanie’s case, it hasn’t had much effect on her skin, but has caused pulmonary fibrosis, a scarring of the lungs.
She and Brian sat and listened to the doctor as he explained the disease. The doctor was upset because, had her condition been diagnosed earlier, more could have been done. During the explanation, the doctor said she would be dead in three years.
rnCoping with a terminal diagnosis
A scleroderma diagnosis isn’t always terminal. The autoimmune rheumatic disease, estimated to affect 300,000 Americans, isn’t cancerous or malignant, though it is difficult to diagnose. Mild cases become serious when left untreated.
Stephanie and Brian didn’t know how to talk about it after hearing the words “You’re going to die in less than three years.” They didn’t really discuss it for a month.
“You hear what the doctor said?” Stephanie asked him.
“Yeah.”
Unlike previous diagnoses, this one foretold the end of Stephanie’s life. Rather than focus on her death, though, she and Brian resolved to fight to get as much time as possible with their family.
They spoke to a physician about treatment plans, and wound up at UCLA where they found a doctor who would treat the disease aggressively. That’s exactly what Stephanie wanted.
“She’s very stubborn,” Brian says, “and that’s helped a lot.”
“That’s why I’m still alive,” Stephanie says. “You teach people how to be their own advocate, and they’ll start living longer and believing they can live with their illness.”
Stephanie had to stop working. Brian had been driving Stephanie, her wheelchair and her oxygen tank to do young adult ministry.
The aggressive treatment involved chemotherapy. She’d go for the seven-and-a-half hour ordeal with her mother, Marty Crouse. They’d drink lots of water, read books and watch movies. It took a lot out of Stephanie. She’d sleep for three days after a session.
Before the chemo, they had a hair shaving party. Scarlet, her 10-year-old, was tapped to cut her mother’s ponytail.
The chemo has been effective, Stephanie says. It slowed the progression of the scleroderma and cleared up some of the lung damage done by the lupus.
At first, doctors estimated she would die at the end of May this year, but after chemo, they believe she has a little more time.
“As I get sicker, they don’t talk about prognosis,” Stephanie says. Her lung function continues to decline and she’s scheduled to start another round of chemotherapy.
Stephanie lives with a host of autoimmune deficiencies: lupus, scleroderma, trigeminal neuralgia, interstitial cystitis, Hashimoto’s, Postural Orthostatic Tachycardia (POTS), Sjögren’s and gastroparesis. Both lupus and scleroderma harm her lungs and it’s likely that Stephanie will die of suffocation.
rnA network of support
Stephanie and Brian live in a “teeny tiny” two-bedroom apartment in Orange with their four children: Brian, 11, Scarlet, 10, Jacob, 8, and Savannah, 5. They share the space with Bailey, their dog, Mittens, their cat, and Boomer and Lixy, their two lizards.
Stephanie and Brian sold popsicles after school on Fridays last month to raise money for the PTA. Brian is a Knight of Columbus and volunteers on the weekends. The Knights have been a big support for the Packers, and the parish adopted the family for Christmas one year.
“Some people don’t have time for a sick friend,” she says. “I’m more work than other people. Friends I have will walk around a grocery store with me. But others don’t know how to respond to illness. It makes them feel uncomfortable, so they avoid you.”
She lost touch with one of her best friends when she first put on weight. Another told her she couldn’t read her Facebook posts without crying.
“I tell people all the time that I think illness is a lot harder on the people around you,” Stephanie says. “They can’t do anything. It’s funny to see how people respond.”
The ones who stick around are amazing, she says.
“Most of the people who helped didn’t talk,” she says. “They just sat and listened.”
She does a lot of listening herself these days. Stephanie is involved in several support groups for scleroderma and lupus patients.
“I see people who are worse off, who don’t have the support I have,” she says.
“Believing in God, and that he has a mission for all of us, helps,” Brian says. He sees how much Stephanie helps others through her involvement in support groups. She’s also involved with “Living Strong” and “Scleroderma Patients Only” on Facebook.
rnChoosing to live longer
Last November, Brittany Maynard took her own life after being diagnosed with a terminal brain tumor. Maynard was an advocate for physician-assisted suicide and her much-publicized death has been a rallying cry for those in favor of such measures.
There was much chatter about Maynard among members in Stephanie’s support groups.
“There’s no dignity in ending your life,” she says. “You’re going to die. I’m going to die. Giving up and killing myself isn’t going to make it better.”
In California, the state legislature is debating SB 128, which would legalize physician-assisted suicide. Both Stephanie and Brain strongly oppose the measure.
“My kids don’t need to see me kill myself. What does that teach them? That when life is hard, you go and kill yourself?” Stephanie says. She knows of terminally ill patients who would consider it, though. She herself sometimes struggles with despair.
“Some days, you’re great with it. Some days you’re not,” she says. “They just sort of tell you you’re going to die in two, three years and you’re probably going to suffocate. You don’t know how to talk about it, how to think about it.”
Her terminal diagnosis changed everything, she says. She thinks about the many things she’ll miss, big and small. A terminal diagnosis, coupled with the weight of costly treatment plans and the feeling of being a burden, can feel hopeless.
“There’s a longing to be here,” she says. “And there’s a real fear of what’s next — of the pain and the side effects of the medication. Being sick can be very lonely.”
But the answer is not physician-assisted suicide.
“You can stay in bed and be sick and die sick, or you can know what your treatment is and do that, and live your life how you’re supposed to live,” Stephanie says.
Brian, her children and her parents, along with support from friends and her parish, have been her saving grace.
rn‘Thou Shalt Not Whine’
Every Sunday is family day at the grandparents’ house.
“We felt it was important for the kids to know us … when the time comes,” says Marty, Stephanie’s mother. “We just don’t know what the future is going to bring.”
The front room at Marty and Lewis Crouse’s house is enormous. Lew, along with some family and friends, built it onto the existing home around the time Stephanie and Brian got married.
One of the first things you’ll see if you walk into that house is a big sign over the refrigerator that reads, “Thou Shalt Not Whine.”
“Thou Shalt Not Whine” is the 11th commandment, according to Lew. He also has 10 rules he’s shared with Stephanie and her siblings from an early age, including “life’s not fair” and “the world doesn’t care about your self-esteem.” You might summarize the general message as, “Get over yourself and be respectful toward others.”
Lew cooks for the family on Sundays and usually at least one other day during the week. He and Marty help by taking care of the kids.
Some people do everything a doctor prescribes and they die the next day, he says, while others ignore doctors and live until they’re 90.
“When God calls, God calls,” Lew says. “Sometimes you don’t get to finish that taco.”
In the meantime, Lew and Marty keep their doors open. They’ve been doing that for years, always welcoming family and friends over to spend time with each other.
Getting to know their family members is one way to prepare for what’s coming, but Brian admits they’ll never really be ready for it.
rn‘We don’t know how long’
Stephanie’s trigeminal neuralgia, a chronic pain condition, affects the trigeminal nerve in her face. She describes it like “being hit in the face by lightening.”
The first time she had an attack, she was at the grocery store with her four kids. She fell to the ground screaming.
“It was the most humiliating moment of my life,” she says.
Her son Brian still remembers.
“He’s seen more of me at my worst,” Stephanie says. “If I’m sick, he takes charge. He worries about me. He comes with me to my pain management doctor. He’s my protector.”
It’s been especially difficult on 10-year-old Scarlet. One day, after Stephanie had been sick for months, she went to Scarlet’s school for an event. One of Scarlet’s friends asked her, “Is that your mom? I thought she was dead.”
According to Stephanie, 8-year-old Jacob “thinks it’s kind of cool. I turn blue sometimes. I change hair all the time.”
Jacob and his friends try on the oxygen and the different wigs.
Her youngest, Savannah, 5, is sensitive. At church, she’s learning about Jesus.
“She wants to know why Jesus made me broken,” Stephanie says. “And we tell her, it’s OK, because good things come out of bad things. And then we talk about heaven.”
Savannah is in charge of blessings for the family, including saying grace before meals.
“They’ve all dealt with it in some way,” Brian says. “They know it’s a possibility. This is how mom’s going to die. But we don’t know how long.”
“I try to spend as much time as I can with my mom,” Scarlet says. “If something happens to her in her sleep … I would just scream. I don’t know what I would do.”
Some days, Stephanie can’t get out of bed. She knows it as soon as she opens her eyes. Brian gets the kids ready for the day, and then they come in to say goodbye before leaving for school.
“When my kids are there, they can tell. They know my faking already,” Stephanie says.
Savannah, her 5-year-old, will rub her stomach and kiss it, and Stephanie will say, “You fixed it!” Then Brian will take them out of the room and she’ll cry or go back to sleep.
If she has to go to the hospital, she tries to make it back before the kids get home from school.
“With my condition, one lung infection could kill me. That’s the nature of the illness,” she says. “I’ll get bronchitis, then pneumonia. I’ll go to the hospital and I won’t come home. It’ll come from nowhere.”
Savannah used to cry every time Stephanie went to the hospital. Lew takes care of the kids and they visit Stephanie, who stockpiles snacks for them.
“Mommy, I’ll be sad when you die,” Savannah says to Stephanie.
“I’ll always be in your heart,” Stephanie says.
“But Jesus is already in my heart.”
“Oh, I’m sure he’ll scoot over and make room for me.”
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