Hospital Visitation Rights Heroine Janice Langbehn in Financial Trouble

Three years ago, the world heard the terrible story of how Janice Langbehn was prevented from seeing her partner of 20 years, Lisa Pond, as Lisa lay dying from a sudden brain aneurysm in the emergency room at Jackson Memorial Hospital in Florida. Last April, President Obama called Langbehn to apologize and tell her he was signing a memorandum requiring all hospitals that receive federal Medicare and Medicaid funding—nearly every hospital in America—to protect the visitation and healthcare decision-making rights of LGBT people. 

On June 7, the Human Rights Campaign Foundation released its Healthcare Equality Index report, dedicated to Lisa Pond’s memory and Langbehn advocacy for hospital visitation rights. “Thanks to the tireless work of Langbehn and other advocates for health equality, this year [Jackson Memorial Hospital] updated its policies to protect the rights of LGBT patients and their families.”  

The hospital has not yet apologized, however, Langbehn told Frontiers, noting “their inability to just be human about it and just say they’re sorry. But that’s great that they have changed their polices. That’s what I ultimately wanted so that the next couple that comes through there doesn’t have to deal with the ordeal and the pain and the guilt that I’ve had to deal with for all these years.”

But what the LGBT community does not know is that this gracious advocate for equality has Multiple Sclerosis and is struggling with financial hardship.  

“Lisa used to be my caregiver when I was ill,” Langbehn said. “I was able to pretty much work full-time up until her death, and then when I got ill, I had no one to care for me. After she passed away, whenever I’d have an MS flare and I’d get ill, I’d have to go into the hospital. And then I’d have to find care for the kids because I didn’t want them to go into foster care. And then I would lose wages—and this happened with more and more frequency, culminating in my having to have a disc removed from my back and having to have brain surgery—all after she died. 

“It just drained me financially,” she continues. “I was disability-separated from my state job—I had been a Child Protective Services supervisor for the state of Washington for 16 years—because I could no longer perform the functions due to my MS. Pretty much we had a meeting on Friday and they let me go on Monday in August of 2008. I applied for Social Security right away. I went from making a middle-wage income to making 150 percent below the poverty line. And I still have three kids to raise.

“The biggest chunk is having to pay my medical premiums, which were covered when I was working. When I was separated, I had to pay for it myself, so $900 of my $1800 Social Security went to just keeping my medical going. And that’s not to mention the kids, paying the mortgage on the house, the car payment, all their activities. They’re very busy kids—that’s one thing Lisa really instilled in them and I wasn’t about to take that away.”

Pond’s parents had promised to help Langbehn pay for the children’s schools but have not even responded to an embarrassed request for a loan. “Pre-Lisa and Post-Lisa are two different sets of grandparents, sadly,” Langbehn said. 

This is no small matter. The kids are foster/adopted kids with developmental delays. On Feb. 18, 2007, at ages 9, 11 and 12, they saw their 39-year-old mother Lisa unexpectedly collapse aboard the Rosie O’Donnell Family Cruise ship—a trip Langbehn bought as a surprise to celebrate the couple’s 15th Holy Union anniversary. The kids literally helped carry Pond to the medical facility aboard the ship before she was taken to the hospital. 

“Lisa’s eyes were somewhat open as they were putting her into the ambulance,” Langbehn recalled. “We knew sign language because of the foster kids. She held up her good hand and signed ‘I love you’ to the kids and me—and that was the last time I saw her eyes open.” And it was the last time the kids saw their mom, too, since the hospital wouldn’t let them back to say goodbye either. 

Langbehn’s suffering isn’t over. “The brain surgery that I had for a nerve condition related to the MS wasn’t successful so I’m facing another brain surgery,” she said. “I’m putting it off as long as I can because they’re going to have to cut a facial nerve to stop the pain. The back surgery was for the most part successful, but now I have arthritic degeneration so I need to go in for epidural injections, which I haven’t done yet. I’m too scared to do it.” 

On her blog—thelpkids.com—Langbehn asks for donations to Lambda Legal, which helped her after Pond’s death. But it’s “too hard” asking for money for herself and the kids, she said. She hasn’t even asked her MCC church. The MS Society has helped with a hearing aide and childcare when she was in the hospital for a week. 

“I don’t want people to take pity on our family. Lisa and I just always kind of dealt with it, said Langbehn, the accidental activist who helped changed the lives of thousands of LGBT people. 

But showing gratitude is not showing pity. If you want to help, the Memorial Fund is: thelpkids.com/childrens-memorialeducational-fund.