Disabled fire refugee struggles to remain upright
Karen Bowles was forced out of her Redding, California, home when the Carr fire threatened thousands of structures last summer. She found refuge in Ashland on Nov. 14 after searching for months in a flooded housing market filled with thousands of people in similar circumstances. But her situation hasn't improved much.
Bowles suffers from a rare autoimmune disease called Pyoderma gangrenosum, which causes chronic gangrene and creates deep, open wounds on her legs. The lesions form from the inside out, and they create a huge risk of infection.
Bowles said she hasn’t been able to find a caregiver since landing in Ashland, so daily tasks such as bathing and cooking are insurmountable.
"When you are able-bodied, you don’t realize what goes into these things (daily tasks)," Bowles said. "Imagine you had all the needs and concerns and wishes you do now, but you're unable to do them yourself. These things we take for granted."
Bowles said she was interviewed by the Medford Disability Services on Dec. 3 and was approved for a caregiver around March 1, but she is still weeks away from finding one.
She was also granted food stamps March 1, but she has no one to take her to buy groceries and she can’t get food from the Ashland Emergency Food Bank unless she shows up in person with an I.D.
She hasn’t had a bath in four months, she said, and the only time she wears clean clothes is if she orders new clothes online, because she can’t lug her laundry into the laundry room at her apartment complex.
Even if she could find a way to get around, she said, her trusty wheelchair “Winnie” is broken and she hasn’t been able to get a new one.
“(My case manager told me that) it’s very difficult to get any durable medical equipment in the state of Oregon,” Bowles said. “Walking depends on the day, and honestly the hour and even the minute. You do what you can to put the pain out of your mind. I try to do as much as possible so I don’t atrophy, so I don’t lose what I have now.”
Connie Saldana, a planner with the Aging and Disability Resource Connection of Oregon, said acceptance into the disability program depends on the individual case, but that four months is extreme.
In the last legislative session, the definition of disability eligibility was “tightened,” Saldana said.
Bowles said the threat of losing her feet and legs is always looming as a possibility. While at Stanford Hospital, doctors and nurses would visit from other departments just to see her case up close, she said.
Bowles receives care for her wounds, but she needs help with daily errands and chores. Two of her nurses volunteered a few hours one weekend to clean her house and bring her food. Bowles also suffers from diabetes, which is worsened when she doesn’t eat.
“Without much food, without clean bedding or clothes, without showers ... I told the social worker and nurse that in some ways it is like being homeless in a home,” Bowles said. “I do not presume to understand being homeless; I just mean that things have gotten very, very bad, and it has been hellish to deal with this.”
Bowles expects she’ll eventually have to move back to California to be closer to Stanford, but she has no way to do that in the near future.
Bowles hasn’t always suffered from the disease. She has, however, had ulcerative colitis since she was 15, which can be an underlying cause for PG.
Bowles, a writer, graduated with a Bachelor of Arts in Literature from San Francisco State University and was on her way to graduate school in L.A. when her mother’s health plummeted. She moved to Redding to care for her mother, Rosetta Bowles, who suffered from lung cancer and COPD in her one remaining lung.
During her mother’s ordeal, Bowles’ ulcerative colitis worsened, and she did not respond to treatment.
“I truly worried I would collapse, and then she would have no one,” Bowles said.
On the day her mother passed in 2010, she noticed the lesions on her feet.
“Within 12 days I was in a wheelchair, going from being a caregiver to needing care,” Bowles said.
“My mother’s hospital bed was taken out of her room, and my doctor had one for me put in there, because it has the bathroom right there,” Bowles said.
“I tell you, losing my mom, having this terrible and extremely painful disease start up, and then being put in a hospital bed in the same room my mom just died in was absolutely terrible.”
She said the pain she endures “is like your hand being burned on the stove, but you cannot move it so it must continue to burn, as if you are bitten by a dog, stung by a wasp, and put your fingers in electrical sockets.”
With her mother gone and her estranged father dealing with the loss of his home in the Camp fire, Bowles said she has no family to help her.
She said while she was in the midst of figuring out a plan to move closer to Stanford when the Carr fire struck. She was reassured that it would not reach her, so she laid down to rest.
“I woke to extreme heat and screaming outside,” Bowles said. “Opening the front door was like looking out into a suburb of Hell — the heat that hit my face, the people milling about shouting and trying to figure out what to do, the light flickering from a fire we know is close to us.”
She said a neighbor helped her evacuate to her counselor’s house, where she stayed for six days — without air conditioning due to power outages.
“Redding without air conditioning is bad, but with a massive wildfire nearby, it was astounding how much heat was being generated,” Bowles said.
She learned later that the fire tornado was about 2 to 3 miles from her front door.
She said waiting for help to arrive was the most terrifying aspect.
“I cannot tell you what that feels like, to know you are unable to get yourself away from danger, and I always cry thinking of those who were not able to get away,” Bowles said.
She described fiery embers floating down around the car as they drove away.
When she returned to her home, she was assured by the landlord that she could stay, because her home had survived the fire, she said. A week later he changed his mind and decided to sell.
She found an apartment complex in Ashland that was ADA-accessible and has been struggling to get back on her feet since.
For anyone wishing to assist Bowles or who has leads for caregivers or resources she could utilize, Bowles can be reached at firstname.lastname@example.org.
Contact Tidings reporter Caitlin Fowlkes at email@example.com or 541-776-4496. Follow her on Twitter @cfowlkes6.