It's Been A Rough Road For RI Dialysis Patient Without Wheels

Some people rely on others.

And then there are people like Melissa Stanton, who just turned 40 this month, the same month that marks the anniversary of the start of her dialysis treatments some 14 years ago.

She has no car, so three times a week, she loses six hours or more to make the trek to Tiverton and back for her three-and-three-quarters-of-an-hour dialysis treatments. If she can’t catch a ride, she must walk and walk and wait for buses, usually out the door before 6 a.m. and not home until noon. At least 18 hours each week is spent traveling to and fro and as time ticks forward, it’s getting harder and harder.

“It’s very hard for me to ask for help,” she said. “I’ve never asked for help.”

Kidney failure has given Stanton a rough road to travel for most of her adult life. She has a huge smile and big green eyes that light up a room, but just as big is her sense of pride. She stubbornly worked and raised her two kids on Aquidneck Island all these years and never asked for a handout along the way.

Most people she meets remark on her sunny disposition. But in recent years, her health has declined and life has presented a slew of new challenges, including a devastating car accident in 2009 that severely injured her ankle. With “plates and pins” in her leg, she said, she has been unable to work and getting around on foot results in pain.

“I know that I’ve done a lot by myself, overcome a lot,” she said in an interview on a recent afternoon at the Dunkin’ Donuts on Broadway. “It’s just been hard lately. I try to the best of my ability. I’m just trying to be OK, but it’s very hard.”

She still hasn’t asked for anyone’s help, but the time has come for Stanton to finally accept some outside generosity. That’s because some friends and a fellow dialysis patient have stepped in and begun to advocate on her behalf. The goal: get Stanton some wheels so she can better stand on her own two feet.

“Melissa didn’t ask for this,” said Jim Gillis, a longtime and now-retired reporter for the Newport Daily News who has gotten to know the mother of two and lifelong Newporter over the past few years in the waiting room of the Dialysis Center of Tiverton.

Gillis, who also suffers from kidney disease, has been sharing Stanton’s story along with a link to a GoFundMe page created to help her finally get back behind the wheel of her very own car.

“It was all my idea,” he said. “I offered, she accepted, but it was all my idea. She never asked for anything.”

Gillis said he overheard her describe a recent 12-hour ordeal when she had to go to Rhode Island Hospital for treatment. Her fistula was a little red and raised, bigger than normal, and the tech in Tiverton at the dialysis center that day told her she needed to go to the hospital.

Stanton would rather have gone to Newport Hospital, but she was sent to Rhode Island Hospital instead, and that meant at the end of the day she had to take two buses to get home from Providence. And it’s not as if the bus dropped her in front of her house late that night.

“I had to walk the rest of the way after the whole day,” she said.

The group of dialysis patients who come like clockwork each week become a family of sorts, and Gillis saw what is abundantly clear to anyone who gets to spend more than a few minutes with Stanton — this is a woman who has paid her dues and deserves a better life — and decided to do something about it.

That day when Stanton described her woeful if not cruel journey from the hospital to home was a rare occasion, since she almost never complains.

“Melissa doesn’t complain a lot,” Gillis said. “Not nearly as much as most other people in her situation would.”

And that situation is feeling more and more like a sentence.

Because of the crash and her injuries, Stanton has been stuck at home on a fixed income, which barely covers her basic needs. As a result, saving up enough money for a decent car is all but impossible.

Not having a car limits her ability to find work and Stanton said all she wants to do is get working again. While some think being on disability is a perk, she feels shame.

Even just grabbing some milk at the store, or stopping by a friend’s house for a quick visit is hard.

“I like to have fun and be happy, hang out, go to the movies, go shopping,” Stanton said. ”But usually I just go home and stay home. I sit on my porch. I’m used to it.”

Her situation is one in which many people with chronic health issues and low incomes face, begging the ultimate question: how is someone supposed to get better when the journey for treatment itself is a painful struggle?

THE DIAGNOSIS
Stanton found out she had kidney disease at 24.

At the time, she didn’t grasp what it meant. Like most 24-year-olds, “I thought I knew everything.”

She didn’t listen to much of what doctors told her. She didn’t think she’d be suffering serous effects until she was middle-aged. She was wrong.

At 26, she came to the hospital after days of feeling severely ill. What she thought was a nagging virus or cold of some kind was actually her body shutting down because her blood was full of toxins. Her kidneys had completely failed.

“They said if I didn’t get to the hospital when I did I’d probably not be alive,” Stanton said.

She wishes she took better care of herself in those early years, but one thing Stanton learned long ago is that beating yourself up does nobody any good.

She had two kids young. They were 9 and 10 when she began dialysis at 26. She’s glad she had them when she did. If she hadn’t been a teenage mom, had she waited, kidney disease would have made sure she never had a chance to have them at all.

“I’m glad I had them when I did because if I didn’t,” she said, her eyes welling with tears, “I wouldn’t have been able to have kids.

“Everything happens for a reason.”

She moved to Newport when she was 1. Her childhood was not easy, she said, and she holds bitterness about her life in Newport, a sentiment shared by many African Americans who grew up here. It might explain why she has had so much trouble asking for help all these years. Who asks for support when it feels like there isn’t anyone out there to help?

“Maybe I didn’t have enough great people in my life,” she said. “Maybe I didn’t open up enough to more people.”

Last year, Stanton took herself off the transplant list after 12 long years of waiting. The antibodies in her blood are very rare so a donor match is increasingly unlikely, she said. Plus, she’s been on dialysis for so long and the anti-rejection drugs have serious and terrible side effects.

Doctors realized the difficulties she was facing in terms of finding a suitable match.

“After about five years I realized why I wasn’t getting called. After they told me, I got discouraged,” she said.

THE CRASH
Life actually seemed to be on an upswing in 2009 before the crash. Stanton was feeling motivated, she said. She had thyroid surgery and things had improved for once. There were moments she actually felt like a normal person.

She was driving in Middletown when the other driver plowed into her car, totaling it. She suffered a compound fracture in her ankle and went into surgery. Six months of not being able to walk on her foot followed. And being a dialysis patient meant everything took an extra long time to heal.

“It put me down,” Stanton said. “It was a long ordeal.”

That crash marks a downward slide for Stanton, both in terms of her health and her outlook on life. It’s the point that she went from being independent and in control to trapped in a vicious cycle of managing her pain and trying to get through life one day at a time.

“I LOVE TO DRIVE”
Along with making life a lot easier in terms of grabbing groceries, getting to dialysis and being able to visit friends both on and off Aquidneck Island, Stanton said she just loves driving.

“There’s something about it,” she said. “I love it. Just to get out there, for my piece of mind. Even if I had to drive every day, I’d still love it.”

She’s a safe driver.

“I hate tailgaters,” she said. “I hate when everyone is piled up behind me.”

Even though she hasn’t had a car since 2009, Stanton has kept her license active and still has put in some hours behind the wheel. Whenever she’s with a group of friends, she’s the designated driver because she doesn’t drink. She also gets to drive her friend’s car on trips to New York to visit longtime friends who live there.

But she’s not planning on any epic road trips if she manages to get a car.

“All I really want is to be able to just get in and go here and there,” she said.

Stanton doesn’t have any real preference as to what kind of car she’d like to have. She said she just wants something reliable with decent fuel economy.

So far, the campaign is a bit shy of $3,000, which isn’t enough for a reliable car plus a little extra to cover maintenance like oil changes and registration, taxes and insurance. The goal is to raise $10,000, which would be enough for a decent used car and enough of a cushion to keep Stanton on the road for a couple years.

No matter what happens, the response to the fundraiser has opened Stanton’s big eyes even wider.

“People are so generous,” she said. “I am so appreciative. Some of the comments people have left have brought me to tears.

“When I see the comments on the GoFundMe account, I think ‘stuff like this doesn’t happen to me,’” she said.

Stanton has learned so much since her 24-year-old self first learned about her kidney disease, about dialysis, motherhood, friendship and life in general.

And the latest lesson: sometimes to get what you need, you just have to ask.

To donate, click on the widget below or go HERE: http://www.gofundme.com/wheelsformelissa