This isn’t how Laura Adams thought her life would go.
The 30-year-old was in a wheelchair outside the Iowa Capitol on an unseasonably cold October afternoon, holding a handmade sign that read “Don’t punish pain,” hoping to bring attention to an issue that has very real consequences for her: access to opioid painkillers, something she sees as threatened in the response to the opioid epidemic.
“Chronic pain patients are not the problem. Our doctors are not the problem,” she said. “We’re being called addicts and being taken off our meds, when we are not the problem with the opioid epidemic.”
Without her pain medicine, Laura said, she would spend her days in bed. Even with it, she is managing her pain, not getting rid of it. A day like this one will mean days of recovering her sapped energy.
“I know I’m going to be down for the count for probably three days after this,” she said.
Four years ago, her life was very different. She worked as a music therapist at the Iowa Veterans Home in Marshalltown, and she and her husband, Darin, were expecting their first child.
“No matter how much it sucks that this all happened to me and I became disabled, I wouldn’t change it because of her,” Adams said. “She makes it worth it. Before you have a kid, you don’t realize you can so fiercely love someone.”
Then everything changed one night when she began having abdominal pains her doctor dismissed as just part of pregnancy. It was much more than that, however: She had a gallstone, which ended up badly damaging her pancreas. Her daughter, Josie, was born via emergency C-section on Dec. 9, 2015, and Laura was airlifted to the University of Iowa Hospitals and Clinics. What followed were months in the hospital that included 10 major surgeries along with more than 20 minor surgical procedures.
There were both steps forward and setbacks as doctors worked to remove infected and necrotized tissue in her abdomen, along with various complications.
The Gazette first met Laura in the early days of that struggle and checked in with her a year later, when she was living with her parents in Waterloo and still slowly healing, able to walk only short distances with a walker and help from another person.
Four years later, she is still recovering. She can walk again, with a cane, and she is slowly regaining feeling in her feet, which lost much of their sensation due to trauma-induced neuropathy. She’s not sure exactly how the nerve damage occurred, but she said it can be a side effect of being bedridden. She still uses a wheelchair when out for long periods, like at the Des Moines protest, or on activities like taking Josie trick-or-treating. It took about eight months of physical therapy to be cleared to walk with a cane outside the house. Her next goal is to drive again.
“Everything moves differently than it used to,” she said. “I’m still healing.”
Along with her physical fight has been a mental one; a realization that her old body is gone, and so is the version of herself that went with it.
“You kind of have to go through a grieving process, grieving that person you thought you were going to be at this point,” Laura said, “and figuring out who you are in a body you don’t recognize.”
Who she is now is an activist, fighting to make the world better not just for herself but for other disabled people struggling to navigate a world not designed for them.
She doesn’t like seeing stories about disabled people overcoming their challenges wrapped up into nice, neat packages for feel-good public consumption, what she calls inspiration porn.
“People want us to be there for inspiration, and then they don’t want to see us after that,” she said. “It gets really old, really fast. A lot of the time it feels like we’re there for the enjoyment of abled people, and then they don’t want to know more about us. They don’t want to know our problems.”
She said she wanted to continue sharing her story not to inspire but to bring attention to the myriad issues wrapped up in it: the difficulty of navigating Medicaid and insurance, health care costs and the opioid crisis and its fallout, to name a few. Not to mention not always being able to access public spaces in a wheelchair, nearly 30 years after the Americans With Disability Act became law.
Rebuilding her identity
Laura’s hair is usually dyed a bright, electric color these days — sunshine yellow or fiery orange or bubble gum pink — and she takes particular care with her makeup and manicured nails. It’s all a form of self-expression, a vibrant way of telling the world she’s here; she’s not hiding or backing down.
“Part of it was, well, people stare at me a lot anyway, so I might as well give them something to stare at,” she said.
In the hospital, her hair fell out and growing it back was a big deal.
“It’s a creative outlet. It’s art, in a way. If you’re in a bunch of pain and have to go somewhere, it makes you feel a little bit better if you can put on makeup and a nice dress,” she said. “It doesn’t look like you’re in excruciating pain. It makes me feel a little bit better about life.”
She has regained other things, too. For a long time, Laura, always a musician, couldn’t sing — the tubes used to intubate her when she first got sick damaged her vocal cords. They have since healed, and she’s started taking vocal lessons again.
Darin built her a patio garden on the back landing of the house they bought in Waterloo, which she can access while sitting down. She raised tomatoes and herbs this year, enough to can large batches of tomato sauce.
“I did the majority of the cooking before I got sick, so it’s been nice to get some of that back,” she said.
Going anywhere can become an ordeal. On a recent excursion to a pumpkin patch, she was dismayed to find nowhere to sit except an empty wheelbarrow. The experience made her angry. On a Facebook post, she asked the business to install a bench for those who couldn’t stand for long periods.
Business owners not considering something because they have never had to worry about accessibility themselves is not an excuse, she said. Such factors can mean the difference between being able to participate with her family and having to wait in the car or stay at home.
Just ask disabled people what they need, she said.
“It doesn’t seem to be that hard to do, but people don’t do it,” she said. “Just make room for us. We deserve to be part of the conversation, we deserve to be at the table. … We need to be part of the conversation, everywhere.”
During her recovery, she met occupational therapist Jenn Wolff, who invited her to join two advocacy groups, Cedar Valley Disability Advocates and Upgrade Medicaid. Lately, group members have been organizing attendance at presidential campaign events.
Laura posts with #CripTheVote to better call attention to disabled people as a constituency in the hope candidates will address issues important to them.
A current source of anger: the Democratic National Committee’s blocking of plans to allow people to participate remotely in “virtual” Iowa caucuses. The current caucus system, with no absentee option, makes it hard for many groups to participate, including people working during the caucus, parents needing to care for kids and disabled people.
Laura said her activism gives her a sense of purpose.
“It makes me feel like I’m contributing again, I guess,” she said. “The last four years of my life have been basically laying around in pain, and trying not to exacerbate my symptoms. That gets really old, really fast. Especially since I was in a helping profession.”
Experiences influence her activism
She and Darin were a politically active couple before Laura got sick, so she said her activism didn’t come out of the blue. But it is sharpened, now, by her experiences.
In her previous life as a music therapist, many of her clients were disabled, so she thought she already knew a lot about the issues facing them.
“It feels different now, though. I was advocating for them as an ally, as opposed to as part of the group,” she said. “It’s a much deeper understanding of what it means to be sick and to live in an inaccessible world that tends to actively discriminate against you.”
She sees active discrimination in the current medical system in the United States. Even with what they considered good insurance, she and Darin estimate they’ve already spent $80,000 out of pocket on her health care costs, between copays and coinsurance.
After she was discharged from the hospital, she spent about three and a half months at a nursing home before moving to her parents’ — Lloyd and Mary Tulls — house, where she lived for eight months. Josie still spends a couple nights a week with them, to allow Laura time to rest, and they help coordinate Laura’s doctor and physical therapy appointments.
“If it wasn’t for their support, I don’t think we’d be where we are today,” Darin said. “It really exemplifies the notion of, in times of need, it can take a village. ... Raising Josie is taking a village. Josie has a lot of people who care a lot about her.”
Darin’s job for the federal government is the couple’s main source of income, so staying home with Laura wasn’t feasible for him. For a long time she couldn’t leave bed without help, yet the only in-home care her insurance would pay for was an aide twice a week to help her shower and a nurse to help with wound care. If her parents hadn’t retired earlier than they expected to help her, she would have had to remain at the nursing home.
“They chose to forcibly institutionalize us — I call that active discrimination,” Laura said.
The couple has had to fight denials of disability payments, had to fight to get access to ongoing physical therapy, had to deal with doctors who didn’t take her pain seriously. Darin said he has spent countless hours on the phone appealing denials of care.
“They want you to give up, but I’ll fight it. I’m the kind of person who will,” he said.
In April 2018, Laura had surgery to remove a gallstone stuck in her common bile duct, the same issue that started her ordeal. She had developed a tolerance to the anesthesia, Versed, and said she remained awake throughout the procedure. She sent a complaint to UIHC’s Office of Patient Experience, and showed The Gazette the response, which acknowledges that could occur with conscious sedation.
“It caused pretty severe PTSD,” she said.
She and Darin recently dropped a medical malpractice lawsuit against another doctor, the one who first ignored her pain symptoms when she was pregnant, after spending some $6,000 and realizing they would be on the hook for tens of thousands more in fees for expert witnesses if they lost the case.
She has chronic pain — in her feet and in her abdomen, which still isn’t completely healed. She’s working with her current doctor to slowly wean off opioid painkillers, but she was on such high doses for so long it must be done very slowly to manage withdrawal symptoms. A previous doctor tried to move her off them too quickly, and she spent months in pain, barely able to leave the couch.
That’s what led her to the October protest in Des Moines, along with another chronic pain sufferer, Deb Sperry, of Long Grove. Sperry, who has neuropathy related to diabetes, said she has had trouble finding doctors willing to prescribe strong enough pain medicine to manage her symptoms in the wake of lawsuits and legislation aimed at fighting the opioid crisis.
She also has osteoporosis and has had several broken bones, so pain is something with which she’s all too familiar.
“I know acute pain. Chronic pain is so different. It eats at you. It never goes away. You want to gouge out your eyes,” she said.
She and Laura were the only people protesting in Des Moines that day, part of an effort by chronic pain advocates across the country.
“It’s so hard to mobilize people who are in pain all the time,” Laura said. “We’re representing the people who can’t be here.”
After the protest, The Gazette went with the women as they met with Kent Nebel, interim director of the Iowa Board of Medicine, to express their concerns that in the fight against the opioid epidemic, chronic pain sufferers were being left out of the conversation.
To their surprise, Nebel agreed with them, and invited them to share their stories before the board in coming months.
“They need to hear your stories, both of you, they really do,” he said.
So this was a good day, all told. Laura hopes there will be more like it.
Her daughter is a bright spot
At A Place to Play Park in Cedar Falls, a new park designed for inclusion, she is able to push Josie, now almost 4, on a swing.
“It’s nice. I can actually get up there when she asks me to, unlike regular parks where I can’t. Just the simple fact this has sidewalks and false grass helps,” she said.
The synthetic turf spread over the smoothed-out ground is easier for her to walk on than natural grass, which can be uneven and full of divots.
Josie clutches a stuffed bear named Missy. Missy is special because she has an ostomy bag, a pouch worn outside the body that collects bodily waste, just as Laura does, a necessity after extensive surgeries to her digestive system.
“Once Josie figured out what I have is different than whatever everybody else has, she started asking questions. I’ve never hidden it from her,” Laura said. “The bear was a nice tool for her to be able to be hands-on with it and understand it better.”
Watching her daughter grow is her biggest joy.
“No matter how much it sucks that this all happened to me and I became disabled, I wouldn’t change it because of her,” she said. “She makes it worth it. Before you have a kid, you don’t realize you can so fiercely love someone.”
From reporter Alison Gowans: Thank you for letting journalists into your lives
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