Jordan Church at the Heartland Youth Center where she volunteers twice a week.

Jordan Church at the Heartland Youth Center where she volunteers twice a week.

A young woman’s journey with an ‘invisible disease’

Vibrant. Gracious. Positive. Jordan Church is all of these and some more, but two years back, one fine day she was in...

Vibrant. Gracious. Positive. Jordan Church is all of these and some more, but two years back, one fine day she was in excruciating pain and before she knew her toes on her left foot had curled in a way that limited her mobility and independence.

“Nearing the end of my Grade 10 year, my life began to change,” Church said. “I was taken to the doctor because the toes on my left foot had curled.”

The doctor mentioned to Church and her family that it would be a long road to recovery, but they left the appointment – undiagnosed.

“Little did I know at the time how accurate his words were,” Church explained. “By midsummer the same year, my arm and leg on my left side were affected as well, and I could no longer bend my knee, straighten my arm or open my hand efficiently.”

Needless to say, Church went from being a happy, confident and joyous young woman, who had everything going for her to a self-conscious, dependent personality, standing at the crossroads of medical mystery.

“Searching for answers, my parents took me to a pediatrician in Edmonton, where a pediatric neurosurgeon told us that it was just stress and it was all in my head,” Church said. “He made me feel like I was just crazy, but I knew better. As it turned out, there was something seriously wrong, and it was ‘all in my head’ as he had said.”

Eventually, Church was booked in for an appointment with an adult neurologist and working with the pediatric neurologist, they were able to book her into Stollery Children’s Hospital for further testing.

“After being there for a week, I was discharged with the diagnosis that I had an autoimmune disease,” Church added. “We thought that we were getting close to resolving this, except that there was no certainty. I was sent home with a high dose of steroids, which altered my personality.”

Once on prescribed medication, Church suffered extreme mood swings, anxiety attacks, and a loss of appetite, losing 10 pounds very quickly.

When Church was admitted into the hospital for a third time, she had already missed two months of school and had started a downward spiral.

“It was frustrating, by then it was just rounds of doctors’ appointments and hospital stays and everytime I knew I would be away, I would break down because so far no one knew what was going on,” Church explained. “In between my hospital visits, my parents took me to see a doctor of Chinese medicine in Calgary, who gave us an ‘unofficial diagnosis’ that I had Lyme disease.”

Church said that she wasn’t sure when she heard that whether she should have been relieved that her “condition” was something that could be diagnosed, or anger that none of the doctors were able to peg it, or fear about the cure and what would follow.

“We were clueless about what Lyme disease was,” Church said. “A lot of emotions flooded my mind, because I wasn’t sure what would happen to me, and if people would consider being my friends or avoid me at all costs.”

For someone who began dancing at the age of two, loved the outdoors and had been active all through her life up till then, it was more than life-changing.

Now, Church is wheelchair bound.

“I can barely use the stairs by myself, let alone be independent and go anywhere on my own,” Church said.

Although she has lived with this the past two years with surmounting difficulties and pain, Church is also resilient.

“I have days where I’ve thoughts about giving up, that I can’t do this anymore, can’t live like this, but if I give up now, I will be throwing away any opportunity that I have of ever becoming the girl I knew and loved,” Church said.

Even though every day is a struggle, Church pushes on, between weekly therapy sessions and doctor’s visits.

When Church received her high school diploma, she was happy.

“I honestly don’t know what I would do without my family and friends’ strength and support,” Church said. “A long life of financial, emotional and physical challenge is still ahead of us, but I’m hoping things will change.”

A few months back, Church’s family decided after consulting with medical practitioners that the best route to take would be to make a journey to Mexico where there are doctors who have seen others with Lyme disease, treating them successfully.

“The big concern is the cost and having known Jordan for so many years I just wanted to help,” said Winnie Bissett, executive director, Heartland Youth Center. “So we are organizing a fundraiser, which will be a Valentine’s Day dance at the Stettler Agricultural Society.”

The Stettler Agricultural Society has donated the space for the event; Brenda’s Country Catering will be donating the midnight lunch; the Stettler Kinettes and Nordstrom Family Dental have made generous cash donations; and many other community members have donated an item for the silent auction.

“We live in a great community and already have some great items for silent auction, but are still accepting more donations,” Bissett said.

Entertainment will be provided by the local band Wheel House and in between sets, Dirt Road Music DJ has donated their services.

“Jordan is a trooper. The challenges this young woman faces on a daily basis should put us all in our place. If as a community, we can all chip in a bit, by either attending the dance, donating cash or an item, and help her pursue treatment to make her daily life better – let’s do it,” Bissett added. “There is Lyme disease in Alberta. Jordan is not the only case, so it is important for us to raise awareness about this, and I hope together as a community we’re able to do so.”

The Valentine’s Day dance starts at 7:30 p.m. on Saturday, Feb. 11 at the Stettler Community Hall.