LEWISTON — On Monday, three friends helped wrestle Paul Spencer out of the house for the first time in four months.
He’s been housebound since December, too big and too uncomfortable to get outdoors.
He weighs 570 pounds.
When Spencer sits down — and he’s almost always sitting — he has to pull out a stool to support the massive lump he calls a tumor in front of him. The mass weighs 200 pounds. His former doctor described it as thickened fat tissue. Jutting out of his abdomen, it used to balance at his waist. In recent months it has dropped, spilling across one leg and reaching toward the floor.
Ten times a day he walks short, labored steps from bedroom to bathroom to living room, the sum of his universe. The mass doesn’t hurt; he pounds his fist on it and doesn’t flinch. But it’s gotten in the way of life.
Between an earlier industrial accident and the growth pulling on his frame, Spencer says he’s always in pain. He’d like the weight gone. He’d like to leave his River Road home without three friends and his wife pushing, pulling and propping. He says he’s too heavy to have the fatty mass removed. He says he’s also been told it gets in the way of weight-loss surgery. His best shot at mobility, a motorized wheelchair, is months away.
Spencer, 56, is upset at the health care system that he says has him stuck indoors opening his bedroom window that faces a gravel pit to take in breaths of fresh air.
That, he said, is his idea of getting away from it all.
“I close my eyes and float away.”
In 1991, a ton of steel fell on Spencer during a workplace accident in Pennsylvania. He believes the mass began to grow during the lengthy recovery that left him disabled and collecting Social Security.
When he weighed 660 pounds, it sat at his waist and looked like extra belly. As his body has lost weight, it’s become more prominent. Last fall, he said, the mass dropped a foot and has continued to droop since. He had to give up driving when he couldn’t reach the brake pedal on his truck anymore. He gave up being a passenger when he couldn’t lift himself into a vehicle.
The Westbrook native moved to Lewiston in 1998. He’s been married to his wife, Kim, since 2006.
“When I met her, I was a three-piece-suit man,” he said. He still has some in the closet.
Today, the mass looks like an oversized medicine ball balanced between his legs. To cover it and his body, Spencer shops online at a store called King Size. They sell T-shirts and sweats that go up to 9XL.
Before Spencer was laid up, he was a counselor, a building superintendent and owned a restaurant stand, Spencer’s Moo Choo Barbecue, at a Lisbon flea market.
“I’m pretty much not able to do anything now, but I want to again,” he said.
It’s a sad situation, according to his former doctor, Douglas Farrago of Auburn. Spencer wanted his story told and gave Farrago permission to talk about the case.
“It’s a massive abdomen and it’s thickened and hardened fat tissue,” Farrago said. “I agree, he is stuck. He has been stuck locally in Maine not because anybody doesn’t want to treat him, (but) because they don’t think, at his size, they’re capable.”
He said he told Spencer to search out a surgeon willing to operate and that he’d take up the cause at that point by writing letters and trying to get him in. Spencer never came back with a name. He scoffs at the suggestion; he shouldn’t have to find a doctor, he says. His doctor should find a doctor.
Spencer had been treated at Medical Rehabilitation Associates in Lewiston for his chronic full-body pain. He took high doses of OxyContin before switching to Suboxone last summer, a medicine that doubles as a treatment for opium withdrawal.
When he could no longer leave the house, he couldn’t make his visits to MRA, which requires appointments for drug testing. There were no more refills, then, no more MRA. Farrago has in his chart that they dismissed him in January for missed appointments.
“He’s massively obese and I’m sure the joints are crumbling from that,” Farrago said. “I actually like the guy. I feel bad for him and I hope it works out.”
‘At the end of my rope’
Spencer said he understands the rules. His missed two appointments, both times because he couldn’t get out of the house. He wishes doctors could come to him. He’s preoccupied with getting back on Suboxone. Once he’s no longer in pain, he said, he can start to deal with everything else.
“I’m not going to last much longer with this,” he said, resting in his oversized living room lounge chair, a 12-inch-high stool between his feet.
“I could go out and buy medicine (illegally)," he said. "I’m not an idiot. Why should I have to? Change the system.”
To pass time he plays board games with Kim, watches TV and plays on the computer. A waste basket, tray and computer mouse are in easy reach of his chair.
Gordon Googoo was one of three friends who helped him out of the house Monday to meet a new general physician, a slow process with two people wedged under each arm. Googoo has been a friend for 40 years.
“He was so embarrassed (when they got to the new doctor’s office) because his wheelchair wouldn’t even fit through the door,” Googoo said. “It’s pitiful. It really hurts me. I try and help whenever I can.”
Spencer said he’d been determined to make that appointment and fortunate to have three friends who made time for him; that isn’t always the case. But the visit wasn’t what he’d hoped. He left without a new prescription.
“My attitude, geesh; I was upset," he said. "I told him he was pretty worthless, that (doctors) were all like lawyers, except lawyers are better. I’m going to apologize to him for that. I’m not that type of person. I’m at the end of my rope. I’m dying here and nobody’s looking.”
A diabetic, Spencer has a nurse and a physical therapist who visit the house each week. He’s looking forward to a wheelchair fitting on May 10.
He plans to sell his truck and buy a conversion van. He’s optimistic about lining up help to build a ramp for the house. He’ll feel normal, he said, being able to come and go.
“Being home for four months has been hard,” his wife said. Caring for him, she can’t work, but she makes it clear: She’s happy to do it. She loves him.
“She’s been so good," Spencer said. "You can’t appreciate how much a spouse means to you until something like this happens.”
Asked why he didn’t seek help years ago, before getting to this point, Spencer doesn’t have a straight answer. At first, it just wasn’t a big deal, he said. He felt rebuffed by doctors who have never, in his view, given a satisfactory diagnosis for whatever is going on.
Should someone be willing to take him on now, Spencer said, he’d sign any sort of release. He knows he makes doctors nervous.
“I’m not negative about it," he said. "What God gives you, he gives you. I’m not negative; I’m not suicidal. I am totally disgusted. I haven’t given up.”