Hannalise Rivera-Lovett manages chronic pain to spark Northampton girls basketball

  • Hannah-Lise Rivera-Lovett, left, is one of Northampton’s most active and energetic players. She suffers from Ehlers–Danlos syndrome a group of disorders that affect connective tissue. Gazette staff / file

  • Hannalise Rivera-Lovett, left, of Northampton, drives to the basket against Jaliena Sanchez, of Central earlier this season. She suffered two injuries in that game and had to sit out for part of the Blue Devils’ stretch run. gazette staff /file

  • Lauraine Joensen, center, of Northampton, gets a hug and flowers from Hannalise Rivera-Lovett after she scored her 1001st career point during a game against West Springfield, Friday in West Springfield.

Published: 2/24/2017 6:36:09 PM

NORTHAMPTON — Hannalise Rivera-Lovett jumped to intercept a pass.

She was playing in a summer league basketball game at JFK Middle School between her sophomore and junior seasons to stay fresh for the winter.

Everything above her knee went one way, everything below went the other.

The torque caused a subluxation of the kneecap. Instead of popping out of place, a dislocation, her kneecap popped out then back into place.

“It moved over to the side of my knee and moved back,” Rivera-Lovett said.

She sprained her MCL and LCL while partially tearing her ACL. Doctors wouldn’t perform surgery on the partially torn ACL, so she went to physical therapy and worked her knee back to playing strength. She knows at some point the ACL will tear completely.

“I’ve kind of come to accept that whenever it happens, it happens,” Rivera-Lovett said. “It’s kind of nerve-wracking playing with that issue.”

Until then, the senior plays and provides the Northampton girls basketball team, which is preparing for the Western Mass. Division 1 postseason, an infusion of energy every time she steps on the floor.

Rivera-Lovett has become accustomed to managing more aches, sprains and dislocations than the average athlete. She suffers from Ehlers-Danlos syndrome (EDS), hypermobility type 3. According to the U.S. National Library of Medicine, it’s a “group of disorders that affect the connective tissues that support the skin, bones, blood vessels, and many other organs and tissues.”

There are nine types of EDS that vary in symptoms and severity. Type 3 is the most common.

Rivera-Lovett deals with consistent aches that vary in location and intensity. The pain comes from an over-stretching of joints. Her blood struggles to clot, and her skin is soft, softer than it should be, and stretches.

Rivera-Lovett’s pupils dilate more than people are used to. She’s more flexible than most.

“I can do weird things. I can do stuff like touch my thumbs to my wrists. Things bend weird, but it also means that things bend in a way that they shouldn’t,” Rivera-Lovett said. “Because of the way my body works it wouldn’t stretch like yours does. It’ll stretch and then break, stretch and then tear.”

Roughly 200,000 Americans have the type 3 version of EDS like Rivera-Lovett. That’s one out of every 2,500 people.

“Ehlers-Danlos is not a fatal disease. It’s a quality of life issue, and it can be disabling,” said Dr. Larry Zemel, a pediatric rheumatologist at Shriners Hospitals for Children in Springfield.

Rivera-Lovett has dealt with the condition her entire life but only been able to attach a name to it for a year and a half.

When Rivera-Lovett was younger, she’d experience random pains. Doctors couldn’t find specific reasons for them.

“It’s also known as the ghost syndrome because you can be in severe pain, and it can seem like there’s nothing wrong with you from the outside,” Rivera-Lovett said. “Unless you’re a doctor who knows, you wouldn’t know why you’re in that amount of pain.”

It took until the beginning of her junior year to find that doctor.

Rivera-Lovett suffered through a seven-month period where she couldn’t sit down because her tailbone hurt so much.

“I’d have to lie on the floor on my stomach in class,” she said.

After seven months, her parents took her back to the doctor practically begging for answers. X-rays and an MRI showed nothing. Her parents pressed and again asked to be sent to Shriners in Springfield.

Their appointment was with Dr. Zemel.

“He’s not always there, it just happened to be that’s who my appointment was with,” Rivera-Lovett said. “Within 20 minutes I had a diagnosis.”

Knowing her opponent’s name helped but didn’t give her an advantage over it. Rivera-Lovett sometimes struggles to get out of bed.

“There are mornings I wake up and I don’t want to go to school, I don’t want to go to practice. I want to stay home. I don’t feel good,” she said. “Thinking about it long term, that’s not going to get me anywhere. If I do and I stay in bed all day I’m letting this disorder take over my life, and I don’t want to do that.”

So she became both a teacher and a student. She had to explain the condition to relevant people like her school nurse and her primary care regular doctor.

“I had to explain it to her because it was something she’d never heard of before,” she said. “I have to do my own research on it because besides this one doctor that’s really difficult to see in the first place I’m not going to be able to learn much about it from other people.”

Rivera-Lovett struggled to tell the people close to her. At first that list only included her best friend, fellow senior basketball player Megan McCarthy, and boyfriend Syrus Carey.

She told Carey after a basketball game. He had to press her because he was concerned about the pain she consistently dealt with.

“There were tears. There was a lot of letting go and putting your boundaries down about this thing that she’s boarded up this whole time, a long time,” Carey said. “It’s not like she was telling friends, she didn’t want anyone to know. In her mind it was like, if you tell someone they’re going to label you. She does not want that because she’s so strong.”

Her other teammates didn’t know until this season, and that took some prodding from McCarthy.

Her symptoms were showing more often. Bloody noses occurred consistently. She fainted one day near the final school bell because of postural orthostatic tachycardia syndrome (POTS), a disorder often associated with EDS.

“I was unconscious for about five minutes. everyone kind of freaked out, they held school in. that’s when I found out I had POTS,” Rivera-Lovett said. “My veins can expand a lot. When I stand up the veins in my legs expand too much and the blood pools in my legs. Because my blood’s pooling in my legs it doesn’t go to my brain and I pass out.”

The Blue Devils went to Joe’s Pizza in Northampton after beating Agawam to qualify for the postseason.

Rivera-Lovett decided to tell the rest of her team at the team dinner at McCarthy’s urging.

“I told her you should let the team know so everyone can be there for you,” McCarthy said.

Rivera-Lovett told them at the dinner. They flooded her with questions. Watching her play, they had no idea something was wrong.

“You could look at her and not even know half of the struggles she’s had to deal with all of her life,” McCarthy said. “I think it’s amazing.”

Rivera-Lovett struggles to reveal her condition because she doesn’t want to be seen as different.

“I can be like everyone else and still have this,” she said. “I view it as an obstacle that I’m going to have to get over. And I’m getting over it. There are totally people in everyday life that deal with a lot more than this. If they can deal with that, then I can deal with this.”

She hurts herself on the court more often than she’ll disclose. This season she’s played with a shoulder that she didn’t know was dislocated and sprained each of her ankles three times. Rivera-Lovett doesn’t like to complain.

“I do it all the time, and it’s really stupid of me, and I know that,” Rivera-Lovett said. “But I injure myself, and I know there’s something wrong and I won’t go (to the doctor) because when I do go and find out what’s wrong I’m going to have to do something about it.”

There’s pressure to push on from within.

“I want to be able to hold my team up, especially being a senior,” Rivera-Lovett said. “I want to help. I don’t want to let them down.”

It drove her crazy to stay on the bench for the entirety of a road loss to West Springfield on Feb. 17. She’d injured her ankle and knee in the previous game against Central and needed physical therapy before she could play again.

The coaching staff decided it was best for her to sit out against the Terriers and take time for her injuries to heal so she could play on senior night and in the playoffs.

The Blue Devils lacked energy in their third straight loss. They missed their senior dynamo.

“It was definitely hard to watch the team struggle like that and not be able to go out there and help pick them up. I did my best from the bench,” Rivera-Lovett said. “The atmosphere was just not as energetic where it could’ve been, and we needed a spark. I wish I could’ve been that spark.”

She stayed sidelined through the road win at Longmeadow but returned Wednesday and hit a 3-pointer in the senior night victory over Holyoke.

“She’s one tough cookie,” Northampton coach Perry Messer said “She gives you everything she’s got.”

She’s given the Blue Devils everything for the four years of her career. With that winding down, Rivera Lovett thinks about the future.

She wanted to join the Coast Guard until she found out people with her condition can’t join the military.

That just shifted her focus.

“I want to be a state trooper now,” Rivera-Lovett said “My next step is to figure out if that’s possible for me.”

She’s reached a point of clarity with her disease. It’s always going to be there. It’s never going to control her.

“It’s become my norm,” Rivera-Lovett said. “I’m totally ok with it.”

Kyle Grabowski can be reached at kgrabowski@gazettenet.com.

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