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| Jordan's mom posted this image on her Facebook page today. |
I wrote the following article in June 2009. Writing it stands out in my memory so distinctly--I was filled with joy, because that was the impact Jordan had on people. I was inspired and strengthened by her courage and grace. I only interacted with her so briefly, but she left an indelible mark on my memory and heart.
I am sharing this story here today, because Jordan passed away on April 10. I am not familiar with all of the details of her story, but I have followed her Care Pages account, and from what I recall, she was making the most of her restored health, and absolutely loving working at a YMCA camp when she went swimming in the ocean and was exposed to bacteria that her immune system couldn't withstand. She became ill with, among other things, severe gastroparesis that prevented her from eating any food.
When my own son faced gastro-intestinal struggles over the past year, I found myself drawing strength from Jordan's own courage and honesty about even the lows. She wanted to be allowed time to process disheartening news, but assured readers that she would pick herself back up. I found this such a refreshing reflection of what I found myself needing and wanting as we faced our own ups and downs. (Which thankfully, are now mostly ups.)
I felt I needed to post this story now so that I can share it on Facebook for Jordan's friends and family, simply out of my great respect and gratitude for her beautiful life.
Eternal rest grant unto her O Lord
and let perpetual light shine upon her.
May she rest in peace, Amen.
May her soul and the souls of all the faithful departed,
through the mercy of God, rest in peace.
Amen.
Now here is the article from The Catholic Times . . .
. . .
June 2009
Jordan Keen has learned to deal with pain. She’s also
learned to turn suffering, humiliation, and sacrifice into forgiveness, joy,
and healing.
In January 2004, the 12-year-old Dexter student sprained her
knee while skiing with her family. Doctors believed Jordan, a member of St.
Joseph Church, would be off crutches within three weeks.
But two-and-a-half years later, she was still on them.
During that time, Jordan experienced intense pain; ridicule from classmates
whose disbelief in th severity of her injury led some of them to kick her knee
to see if it really hurt; and even
chastisement from one doctor who responded to her swollen, bruised knee by
saying, “I’m an orthopedic doctor. I don’t cure mental diseases.”
Jordan had visited over 20 doctors in an attempt to find
relief from her pain. To meet with these words devastated the young girl. “I’m
supposed to be able to put my trust in you,” she said. “And you crush me!”
Jordan also struggled with losing her sense of identity. She
was an athlete with a high pain tolerance and a “you fall, you get up, you go”
mentality. Jordan’s inability to bounce back from this injury left her “stripped
of everything (she) loved to do that made (her) happy,” she said. “It’s
unbelievable what happens when you have to surrender.”
As a result, Jordan also grew angry with God and couldn’t
believe He cared about her.
“If a chaplain or priest would come to visit me in the
hospital, I would say, ‘Get out!’” Jordan said. “I didn’t want God.”
The Keen family’s quest for answers finally led to the
Cleveland Clinic, where it took Dr. Michael Stanton-Hicks about 15 minutes to
diagnose Jordan with Reflexive Sympathetic Disease (RSD). RSD is a disease that
affects the sympathetic nervous system and is characterized by chronic, severe
pain.
“That’s a mouthful to hear when you’re an eighth grader,”
said Jordan. “It was a little overwhelming for me. But he knew it was real.
There was hope. He took time to explain—here’s the disease, but I’m going to
help you through it.”
And he did. After one year of treatment, in June 2006,
Jordan’s RSD went into remission. A year later, Jordan attended a medical
school camp. Unfortunately, while at camp, Jordan and a group of girls with
whom she shared some nachos all got very sick. Jordan was the only one who didn’t
get better.
“Any time after that, when I ate, I would be in immense
pain,” Jordan said. “We went from doctor to doctor, not connecting it to the
RSD. In December, I was diagnosed with pancreatitis. I was at Mott Hospital for
a month and a half before they sent me to the Cleveland Clinic.”
Once Jordan got to the Cleveland Clinic, Dr. Stanton-Hicks
confirmed that her new symptoms were from the RSD. He recommended a temporary
spinal cord stimulator that cost Jordan’s family $45,000, because the insurance
would not cover it.”
The spinal cord stimulator “changes your pain signals—it’s
an amazing sensation,” said Jordan. “Anywhere there’s pain feels like a
Jacuzzi.”
Unfortunately, when the temporary stimulator had to be
removed after eight weeks, Jordan’s pain returned. The insurance company
decided the $75,000 for a permanent stimulator was “medically unnecessary,” and
Jordan’s family could not bear the weight of that cost alone.
From April through September of 2008, Jordan’s disease got
considerably worse.
“It spread from my stomach,” said Jordan. “My leg was puffy
and red and then my arm. I eventually lost all of the ability to walk and most
of the ability to use my hands and arms. Even water from the shower was
painful, and I couldn’t use sheets at night. I experienced extreme temperature
changes.”
Jordan spent time at a hospital in Chicago, where the
doctors tried to control her pain with “a lot of drugs and physical therapy,”
said Jordan. “There were days I would wake up and not remember my name, or that
I was supposed to brush my teeth. That’s a lot of adult world for a 15, 16, 17
year old.”
Jordan’s second bout with RSD also cost her the ability to
attend school—she simply didn’t have the strength to make it through the day.
Her mother, Sue, left her job as a fifth-grade teacher at St. Mary School in
Pinckney to care for Jordan and to teach her.
However, Jordan’s response to these struggles differed
considerably from her first bout with RSD. “The second time, the problems with my
faith were easier to handle,” she said. “The first time, I lost everything,
including my faith. I didn’t see God working in my life at all.”
During Jordan’s second struggle with RSD, she said, “I
looked at all the work God did in my life after the first flare. It was a
catalyst for personal growth and for my faith. I knew God had a plan for this,
so it would be better in the end.”
Jordan said her increased faith was a gradual change
prompted by her youth group leaders “showing (her) the way God is.” Jordan had
continued to attend youth group activities even when she struggled with her
faith. “One of our youth group leaders was misdiagnosed with RSD,” said Jordan.
“She became my person to turn to. She would say, ‘I understand this kid or this
person said (something hurtful). But what did you do? Did you run away from it?’
Then we went on a winter retreat and it all came together. That weekend was
like—‘Wow!’ To hear other teens’ stories of struggle and to see their energy
for Christ despite their daily challenges made me see what I was missing in my
life. That weekend was a turning point for my faith.”
Instead of asking visiting chaplains and priests to leave
her hospital room, as she did during her first bout with RSD, Jordan now
received daily Eucharist, loved talking with chaplains and priests and eagerly
read the Bible, particularly the story of Job.
“There are so many places in the Bible where they talk about
how suffering is so much more than this place of pain or sorrow,” said Jordan. “You
can be mad at God all you want and it’s not going to change the way He loves
you. God doesn’t abandon you. That took a long time to figure out—that it’s OK
to be mad at God.
“He knows what’s going on. He knows it’s hard for me. But He
also knows what it’s like to suffer. Jesus also was teased. I realized, ‘Wow,
look at what He did with His suffering and look at what He turned it into.’ It
made me ask, ‘What can I do with my suffering?’”
Jordan discovered at least part of the answer to that
question when a family friend, who works at a hospital, felt compelled to begin
a discussion with a distraught couple in line at the cafeteria. It turned out
the couple’s daughter also had RSD. The friend put them in contact with Jordan
and what came next was an RSD support group that, after two years, has 17
members from a three-county area. Jordan also started an organization called
RSD in Motion that aims to educate both medical professionals and the public
about RSD and to let people suffering with RSD know they are not alone.
“I know that if it wasn’t God’s plan, He wouldn’t have
ignited such passion in my heart to create change,” Jordan said of her decision
to start RSD in Motion. “It’s fulfilling to hear someone tell me how much
easier it is to deal with the disease because they know they aren’t alone.
“It’s a cool experience to look kids like me in the eye and
say, ‘I understand.’ I have a doctor in my life with RSD (who says), ‘Look what’s
possible.’ That doctor makes me feel like my dreams are possible. Even though
you have a day with pain, it doesn’t mean you have to have a day that’s
horrible.”
Meanwhile, Jordan’s family turned to fundraising to finance
Jordan’s permanent spinal-cord stimulator. In October, a spaghetti dinner held
at St. Mary Church in Pinckney raised $18,000—enough for a down payment on the stimulator.
As a result of the dinner, Jordan was able to have her
stimulator implanted in December. By mid-January, Jordan said she was “feeling
great.” One month later, she received her driver’s license. She returned to
classes at Dexter High School in March. Although Jordan was able to keep up
with her studies at home, those credits are not easily transferrable, and so
Jordan did not graduate with her class this spring. In addition, returning to
school meant facing students who were unkind to her while she struggled with
her injury. She has chosen to respond to these people with forgiveness.
“What other choice do you have (but to forgive)?” Jordan
said. “Hold on to frustration and regret? It makes it more difficult when you
don’t forgive them. I choose to forgive because it is easier to let it go than
to hold on to it. It’s amazing to see how many teasers showed up at my
spaghetti dinner. I had people who hadn’t wanted to be my friend say, ‘Sorry I
messed up. Can we grow from each other?’ The world needs to be able to look at
each other and grow—‘You’re different from me, but I still like you as a
person. It’s OK that you’re different.’”
Jordan now enjoys spending time with her family.
“We eat dinner as a family pretty much every night,” Jordan
said. “But (with RSD) the smell of food made me nauseous, so I’d be in my room
watching TV instead. Now it’s nice to have a normal schedule instead of
wondering, ‘What am I going to fill my day with?’ It’s a nice change of pace
for me. I wouldn’t do it again if I had a choice, but if that’s in the plan, it’s
OK.”