Lewiston man: 'I'm dying here and nobody's looking'

LEWISTON — On Monday, three friends helped wrestle Paul Spencer out of the house for the first time in four months.

Paul Spencer
Amber Waterman/Sun Journal

Paul Spencer pets P.I.T.A., pronounced "Petey," while his wife Kim looks on in their Lewiston home Tuesday. Paul weighs 570 pounds and has a mass in his abdomen that is estimated to weigh 200 pounds. He has been homebound since November, when the tumor shifted down and to the left, making it difficult for him to walk and drive.

Paul Spencer
Submitted Photo

Paul Spencer and his wife, Kim, were photographed in 1997 before they were married. Spencer estimated his weight at the time the photo was taken to be around 660 pounds.

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.”

Doctor's notes

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.”

kskelton@sunjournal.com

What do you think of this story?

Login to post comments

Our policy prohibits comments that are:

  • Defamatory, abusive, obscene, racist, or otherwise hateful
  • Excessively foul and/or vulgar
  • Inappropriately sexual
  • Baseless personal attacks or otherwise threatening
  • Contain illegal material, or material that infringes on the rights of others
  • Commercial postings attempting to sell a product/item
If you violate this policy, your comment will be removed and your account may be banned from posting comments.

Advertisement

Comments

 's picture

Thoughts on this article

Obviously there is probably a lot that we DON'T know re: the personal and medical history of Mr. Spencer. That said it is irrelevant--in my opinion--whether or not his cat weighs 100 lbs or even the fact that he used to wear 3 piece suits. He is a human being and most ALL of us as human beings make mistakes, do things that aren't healthy for us, don't always make good decisions etc. From the info. the article provides, I personally don't think the weight gain is SOLELY due to a "tumor." But regardless of where it comes from, it is impeding his health and IS likely to result in early death.

 Mr Spencer, with all due respect I'd advise you to lose any "attitude" and begin to be your own best advocate! People will inevitably respond better to a good natured person as opposed to someone who is hostile, rude or impatient. My suggestion would be the same as another person who posted and that is to begin making calls to doctors here, Portland, Boston WHEREVER. Secondly, print multiple copies of your article. Also compose a brief and concise letter explaining your medical problem, insurance--if any, your limitations and the fact that you are desperate for help. Enclose your article with each letter you send. Keep a notebook of what doctors you've contacted, what date, and when/if they've responded. This is time consuming granted. But we are talking your life here! Best wishes.

Simon Diaz's picture

even the cat looks like

even the cat looks like weighs 100 lbs.

 

 's picture

Something here makes no

Something here makes no sense. The article states he was a three piece suit man. When, in kindergarden? The picture reportedly taken in 1997 befor his marriage lists him at 660 lbs. That was thirteen years ago. He now weighs ninety pounds less. The math just doesn't add up. And smoking cigarettes certainly adds to the dilemma.

RAYMOND FRECHETTE's picture

You all may knock Nell, but

You all may knock Nell, but we all have to take personal responsibility for ourselves and not blame others for our problems and shortcomings. Can Doctors do something for him now? Only doctors can answer this, but nothing here happenned overnight. He could see it happenning and chose to ignore it.

Audrey Alcala's picture

Weight

He has lost some weight, dlaurels, his major problem is a 200 pound mass that has grown from his stomach. It needs to be removed. This has nothing to do with eatting himself to death. His former doctor should have referred him to someone who could have removed that mass if he couldn't...not tell the guy to find his own doctor!

Doreen Sheive's picture

hospital

It is apparent that this man is incapable of helping himself.  He needs to lose hundreds of pounds.  He needs to be put into an institution for weight loss.  While there he will receive counseling to help him overcome whatever it is that makes him want to eat himself to death.

Ellen Levesque's picture

This is not the fault of the

This is not the fault of the US system.  This man needs to take responsibility for his situation and not blame others.  This is the problem with lots of folks these days.  Jsut blame the country or your neighbors or town.  Don't blame yourself.

RONALD RIML's picture

Nell's a Well of Compassion, eh.

Nell's a Well of Compassion, eh.

Her outlook is a sterling example of why no other country is seriously studying the American method of funding and delivering Health Care.  

Good thing she's an atheist, with no expectation of reward and/or punishment in the afterlife.

Allisa Milliard's picture

nice attack

nice personal attack, veritas. really adds  perspective to the conversation.

RONALD RIML's picture

Thank you.Somebody needed to

Thank you.

Somebody needed to jerk a knot through her grommet.

She 'de-personalized' so well. 

RONALD RIML's picture

Nobody can 'afford' cigarettes.

But the Tobacco Lobby has found a willing accomplice in the Republican Party, which votes "pro-tobacco" 73% of the time, as opposed to the Democrats, who line up with the tobacco vote only 23%.

So who's watching out for you??

Advertisement

Stay informed — Get the news delivered for free in your inbox.

I'm interested in ...