Featured Stories

Other Pamplin Media Group sites


Living for today

Concordia volleyball player — and Liberty High grad — Melanie Miller makes the most of every day as she finishes her collegiate athletic career while battling Limited Systemic Sclerosis, a terminal illness


Every human owes a death. Each debt must be paid. That is the one inescapable inevitability of life.

It is one of the great wonders of humanity that people are able to put aside the knowledge that they — like all those who have come before them and all those who will come after them — will one day die. Most people are able to do that by not thinking about how or when they will die.

Concordia University volleyball player Melanie Miller already knows how she will die.

One day, Limited Systemic Sclerosis will attack Miller’s internal organs. Those organs will calcify and one after another, they will fail. Miller does not know when she will die, though.

And by not knowing that, she is able to live.

“I haven’t been thinking about the long term of when it’s going to completely take over my life,” Miller says. “I don’t really know when — and I do care — but I don’t want to know. I just want to live.”

Miller, 21, has battled life altering diseases for more than half her life. When she was 11 years old, she was diagnosed with Raynaud’s disease. She discovered that she had LSS during her junior year at Liberty High School. Then, last summer, she was diagnosed with Type 1 diabetes.

Though fate and her body have tried to rip volleyball away from her, Miller has refused to give up the sport that she loves.

“I’ve used volleyball as an escape,” Miller says. “It’s always been my passion. When I’m out there I forget about everything else in life. Through all the other challenges in my life, it’s one thing that I can do and forget about everything else.”

Growing up in Hillsboro, Miller played both volleyball and softball. When she was 11, Miller started feeling severe pain in her hands when she caught the ball and noticed that her fingers were turning white in the cold as blood stopped flowing to the digits.

Raynaud’s is often called “the red, white and blue disease” because of the way a person’s fingers and toes can swell and change colors when the smaller arteries that supply blood to the skin narrow and limit circulation.

Raynaud’s is more of a nuisance than a disability for most people, but Miller had to give up softball because of the cold Oregon springs.

Miller was able to keep playing volleyball. But, even now, during time outs, she has to wrap heat packs around her hands to restore the circulation, which is also affected by stress.

For the rest of her life, Miller will have to stay away from mountains and other places where it gets extremely cold. She tries to always wear several layers of clothes, including wearing mittens over gloves.

“If I was to go for long periods of time without being warm I would lose my fingers,” Miller says. “They would get frostbite because the blood isn’t in your hands.”

While she lost her ability to play softball, Miller’s life eventually became — not normal­­ — but something close. With her attention focused on volleyball, she soon became a star and was selected to play for the Nike Northwest Juniors, an elite volleyball club.

At Liberty, then a new high school, the 5-foot-10 Miller’s gifts were very noticeable.

“I stood out more at Liberty because it was a new high school and the program was developing,” Miller says. “I had a lot of experience in volleyball, so I was a big fish in a small pond.”

During the spring of her junior year, Miller had blood drawn during a check-up for her Raynaud’s. That sample of blood confused doctors for a long time. Eventually, they realized that Miller had LSS, an extraordinarily rare disease afflicting only a handful of people in Oregon, most of them older.

Miller missed most of that spring term as she checked in and out of Oregon Health and Sciences University in Portland. A second opinion at the Mayo Clinic, in Rochester, Minn., confirmed that Miller’s eventual death was sealed.

“I went through a bunch of different cycles of emotion,” Miller says. “I was shocked, for one. And I was confused. It took forever for them to come up with a diagnosis. It was like, ‘Why am I sick? Why is all this stuff happening?’

“Finally they gave me an answer, but it wasn’t a reassuring answer because they don’t know hardly anything about it. I have a name for it, but they don’t really know what to do about it.”

Once Miller was diagnosed, it took her a long time to adjust to the medications she had to take to control the LSS. She experienced multiple side effects, including nausea, fatigue and migraines.

Miller was able to play through everything that the medication did to her body during her senior year, though. After being named team MVP and First Team all-league, Miller went to Western Oregon to play volleyball.

During her redshirt freshman season, Miller’s doctors continued tinkering with her medication, severely limiting her ability to play well during practice.

“I was not healthy at all that year,” Miller says. “The medications were getting changed a lot and it was making me feel really sick and I was performing poorly. I wasn’t the player they recruited, so they weren’t necessarily happy with my performance.”

Eventually Miller transferred to Concordia, partly to play volleyball for the Cavaliers and partly because Concordia is one of only two universities in Oregon with an accredited social work program.

With her medication more stable, Miller began playing well again. Her redshirt freshman season, Miller appeared in 64 sets with 10 starts. She had 40 kills, 18 assists and 65 digs. Her sophomore season, Miller appeared in 84 sets and all 25 matches. She had 164 kills, 129 digs, 29 blocks, 28 assists and 11 service aces.

“She’s extremely steady and consistent, especially in the front row,” Concordia coach Melanie Hambelton says. “She does a really good job. She’s very aggressive and intelligent. She’s a really smart player. She adds a lot of maturity to the team.”

Miller still struggles with playing through the fog of her medication. When Concordia played Corban earlier this season, Miller became so nauseated that she vomited before the national anthem. On top of the side effects from the medication, Miller’s health problems leave her fatigued, her immune system low and also make it difficult for her to recover from any injury.

“I get tired really easy,” Miller says. “I notice that minor aches and pains take longer for me to recover from. If I were to roll my ankle, it takes a lot longer for my body to heal. My immune system is not that great so getting a common cold could knock me out for a while. It’s more the immune stuff and then just the fatigue and the nausea that’s affected me the most.”

Despite being hamstrung by her diseases and medication, Miller had finally come to a point in her collegiate career where she was able to play — and play well. Then, this summer, Miller was hospitalized with internal bleeding.

After numerous blood tests, Miller was finally diagnosed with Type 2 diabetes. That night, Miller began taking medication for it. It did not help. She kept getting sicker and sicker.

Miller was staying with her parents while she was ill. When Miller’s older brother, Jonny, saw his sister’s condition worsening, he figured out what the doctors had been unable to see.

Jonny Miller, who played golf at Concordia, has suffered from Type 1 diabetes since he was 13 years old. The next day, at his doctor’s appointment at OHSU, Jonny Miller described his sister’s symptoms to his physician.

The doctor immediately cleared his schedule and had Melanie Miller come in to his office. He put her on insulin and when Miller began feeling better, he correctly diagnosed her with Type 1 diabetes.

Because she understood Type 1 diabetes, the diagnosis was comforting for Miller. But, she was terrified that she might be unable to continue playing volleyball.

“I was kind of relieved since I knew a lot about diabetes because of my brother,” Miller says. “I knew that he’s handled it amazingly. I knew that I could use him. I could just call him up and ask him something instead of asking my doctors.

“I was relieved in that sense because I had a little better grasp on how to deal with it. My other initial thought was: ‘Am I still going to be able to play?’”

By closely monitoring her blood sugar level and being very careful about her diet — along with taking 12 different medications twice a day — Miller once again dodged a bullet aimed at her volleyball career.

“It was about learning to understand my body,” Miller says. “I know when I’m going low (with her blood sugar) without even checking my blood.”

Throughout this season, Miller and Hambelton have worked together to manage how Miller is used during practices and matches.

“We try to watch her to see how she’s doing, how she’s performing,” Hambelton says. “I’m trying to give her breaks in matches and in practices.

“But, she just wants to compete. Se wants to play. She wants to be out there. So she doesn’t always let me know like she should.”

Miller is getting better at that, though. While she wants to be on the court for every point, she also understands that if she stays in matches when she should come out, she can not only hurt herself, she can hurt her team.

“As much as I don’t want to come out, I need to respect my body and my teammates,” Miller says. “I’ll eventually start performing poorly. I need to be strong enough to say, ‘I need to come out and I need to take care of this before I come back in.’

“That’s something that’s hard because you don’t want to come out in the middle of a game or anything like that.”

Even with as much as she has been through, if everything stays the way it is, Miller will be able to finish out her volleyball career at Concordia.

While Miller wants to play well, just playing until the end of her senior season is an even greater goal.

“I’m not super worried about my stats,” Miller says. “It’s more about the team and investing in relationships and lessons that I can carry with me outside of volleyball.

“Honestly, I just want to play and finish my career. I don’t want to have anything stop me from finishing my four years here.”

After college, Miller still wants to keep volleyball in her life whether it is recreationally or through coaching.

“Volleyball will always be a part of my life,” Miller says. “Not necessarily in this super competitive environment, but I’ll always be involved in it.”

When Miller’s competitive volleyball career ends, she plans to begin a new life as a social worker.

In January, she will travel to Uganda for a five-month service internship. Her dream job is to start an orphanage in a Third World country.

“I have a passion for kids who are in poverty,” Miller says. “I’ve been to Nicaragua and the Dominican Republic and I’ve worked with kids there for a short period of time. But I want to be able to work for an organization that deals with kids in poverty.

“I don’t necessarily know how my health will be involved in that. Going to a Third World country can be risky. But, even if I can do something here to help people over there, I’d like to get involved in that.”

Hambelton is amazed that even with Miller battling three serious illnesses, she still has a passion to help others.

“She has an altruistic nature,” the coach says. “She wants to give to other people. She wants to serve. That’s really impressive to me.

“Despite all she’s going through, she just wants to give her own life to help others.”

Someday Miller’s life will end. She knows how that end will come. She has long since stopped trying to figure out why.

As for when, until that day comes, Miller will live.

“With my faith and my family and my support system, I’m not afraid to die at all,” Miller says. “That doesn’t scare me. It’s what I’m leaving behind when I go. So I want people to know how much they’ve influenced my life and how much they’ve helped me.

“And I want to be an influence on other people. I’m excited for what life has in store for me.”



Local Weather

Cloudy

52°F

Hillsboro

Cloudy

Humidity: 100%

Wind: 3 mph

  • 26 Nov 2014

    Cloudy 60°F 51°F

  • 27 Nov 2014

    Showers 56°F 51°F