Stephanie Packer was 29 when she found out she has a terminal lung disease.
It鈥檚 the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Maynard, of Northern California, opted to end her life via physician-assisted suicide in Oregon last fall. 听Maynard鈥檚 quest for control over continues to galvanize the 鈥渁id-in-dying鈥� movement nationwide, with legislation pending in and a states.
The Packer family gathers in the kitchen to cook dinner. From left: Jacob, 8; Brian Sr. ; Brian Jr., 11; Savannah, 5; Scarlett, 10; and Stephanie. (Photo by Stephanie O鈥橬eill / KPCC)
But unlike Maynard, Packer says physician-assisted suicide will never be an option for her.
鈥淲anting the pain to stop, wanting the humiliating side effects to go away 鈥� that鈥檚 absolutely natural,鈥� Packer says. 鈥淚 absolutely have been there, and I still get there some days. But I don鈥檛 get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn鈥檛 have to be.鈥�
A recent spring afternoon in Packer鈥檚 kitchen is a good day, as she prepares lunch with her four children.
鈥淒o you want to help?鈥� she asks the eager crowd of siblings gathered tightly around her at the stovetop.
鈥淵eah!鈥� yells 5-year-old Savannah.
鈥淚 do!鈥� says Jacob, 8.
Managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying. But for Packer, these are the moments she cherishes.
Diagnosis and pain
In 2012, after suffering a series of debilitating lung infections, she went to a doctor who听听 The autoimmune disease causes hardening of the skin and, in about a third of cases, other organs. The doctor told Packer that it had settled in her lungs.
Stephanie Packer is against the aid-in-dying bill moving through California鈥檚 legislature. (Photo by Stephanie O鈥橬eill / KPCC)
鈥淎nd I said, 鈥極K, what does this mean for me?鈥欌�� she recalls. 鈥淎nd he said, 鈥榃ell, with this condition鈥ou have about three years left to live.鈥欌��
Initially, Packer recalls, the news was just too overwhelming to talk about with anyone 鈥搃ncluding her husband.
鈥淪o we just鈥arried on,鈥� she says. 鈥淎nd it took us about a month before my husband and I started discussing (the diagnosis). I think we both needed to process it separately and figure out what that really meant.鈥�
Packer, 32, is on oxygen full time and takes a slew of medications.
She says she has been diagnosed with a series of conditions linked to or associated with scleroderma, including the auto-immune disease, lupus, and gastroparesis, a disorder that interferes with proper digestion.
Packer鈥檚 various maladies have her in constant, sometimes excruciating pain, she says, noting that she also can鈥檛 digest food properly and is always 鈥渆xtremely fatigued.鈥�
Some days are good. Others are consumed by low energy and pain that only sleep can relieve.
鈥淔or my kids, I need to be able to control the pain because that鈥檚 what concerns them the most,鈥� she adds.
Faith and fear
Packer and her husband Brian, 36, are devout Catholics. They agree with their church that doctors should never hasten death.
鈥淲e鈥檙e a faith-based family,鈥� he says. 鈥淕od put us here on earth and only God can take us away. And he has a master plan for us, and if suffering is part of that plan, which it seems to be, then so be it.鈥�
They also believe if the California bill on physician-assisted suicide, SB 128, 听passes, it would create the potential for abuse. Pressure to end one鈥檚 life, they fear, could become a dangerous norm, especially in a world defined by high-cost medical care.
鈥淒eath can be beautiful鈥�
Instead of fatal medication, Stephanie says she hopes other terminally ill people consider existing palliative medicine and hospice care.
鈥淒eath can be beautiful and peaceful,鈥� she says. 鈥淚t鈥檚 a natural process that should be allowed to happen on its own.鈥�
Stephanie鈥檚 illness has also forced the Packers to 听make significant changes. Brian has traded his full-time job at a lumber company for that of weekend handyman work at the family church. The schedule shift allows him to act as primary caregiver to Stephanie and the children. But the reduction in income forced the family of six to downsize to a two-bedroom apartment it shares with a dog and two pet geckos.
听
Even so, Brian says, life is good.
鈥淚 have four beautiful children. I get to spend so much more time with them than most head of households,鈥� he says. 鈥淚 get to spend more time with my wife than most husbands do.鈥�
And it鈥檚 that kind of support听 from family, friends and those in her community听 that Stephanie says keeps her living in gratitude, even as she struggles with the realization that she will not be there to see her children grow up.
鈥淚 know eventually that my lungs are going to give out, which will make my heart give out, and 听I know that鈥檚 going to happen sooner than I would like 鈥� sooner than my family would like,鈥� she says. 鈥淏ut I鈥檓 not making that my focus. My focus is today.鈥�
Stephanie says she is hoping for a double-lung transplant, which could give her a few more years. In the meantime, next month marks three years since her doctor gave her three years to live.
So every day, she says, is a blessing.
This story is part of a reporting partnership that includes NPR and Kaiser Health News.