Johanna Johnston is a beautiful and creative young woman. She has a fitness model’s body and a positive attitude toward life. But there’s more to her story.
Inside Johanna’s head, next to cherished memories of carefree days riding horses and thoughts about her meaningful relationship with God, is a tumor. It’s an impenetrable, undefined mass that has, at times, paralyzed her vocal cords, impaired her hearing, prevented her from swallowing food and water, and kept her left shoulder immobile.
The neurosurgeon says she needs surgery, but she suspects it’s her lack of insurance coverage that keeps doctors from scheduling her appointments.
Johanna Johnston has lots of questions and a beaming smile and an unwavering faith. She knows she will win this battle. She knows she will use this experience to enhance her Christian testimony and help others.
Her friends and family know this, too. They also know they need your help to make sure Johanna can reach her goals.
Severe food allergies were generally the most serious problem Johanna ever had to deal with in her life. That was, until the spring of 2013 when the headaches started. They were so intense, in fact, she woke up her parents one night to pray for relief from the pain she was feeling.
“I was guessing it was a migraine, even though I’d never had one before. It lasted for four days, and it felt like somebody took a spike and pounded it through my skull,” says Johanna, a Goshen native who works as an Elkhart Truth graphic artist. “The headaches started to come and go then and I thought the worst was over. But one day, I went to get something down from a shelf and realized I couldn’t raise my arm up to get it.”
The symptoms seemingly changed daily. On Memorial Day weekend, she went to an urgent care center to seek a medical opinion.
“The doctor pretty much said I was imagining things,” she says. “I went home and thought maybe I should go see an ear, nose and throat specialist because my throat was closed up.
“It got to the point where, I would take a drink of water or a bite of food and it would end up coming out my nose. Have you ever had an Oreo come out your nose? It hurts,” she laughs.
The ENT saw evidence of vocal cord paralysis. Since that region is controlled by the 9th and 10th cranial nerves, the specialist sent Johanna for brain imaging.
The doctor’s interpretations of Johanna’s brain scans are distant and cold. The printed word has never been the welcome resting place of bedside manner, but rather a platform for Scrabble-winning words like “multilobulated” and “schwannoma.” On July 9, Johanna arrived at the hospital for an MRI and some answers. The next day, she came back at the doctor’s urgent request for a more in-depth CT scan.
Left temporal bone: Contained within the left jugular foramen there are is (sic) a 1.2 x 1.7 x 1.1 cm sized mass which produces total effacement of the left jugular vein at this segment. There is a small 2-3 mm calcification contained within this mass.
“I got the call – I knew it wasn’t going to be good because it was after hours,” Johanna says. “I’m by myself at work. He just said to me they found a mass. To be honest, I’m not sure what he said after that.”
Johanna points to clumpy-looking white spot on the scanned image of her brain – “It’s kind of looks like a spider climbed in there and made a web,” she says. The medical professionals she’s dealt with say it appears to be slow-growing, but they’ve quickly added they can’t say that with 100 percent certainty.
She’s become a voracious reader on the words doctors have used to define her situation. She spouts out terms and definitions like Wikipedia, but like that online encyclopedia, even she is left to wonder if the answers are absolutely correct or merely opinion with some sprinkling of relevant sources.
Differential diagnostic considerations would include schwannoma. Paraganglioma or glomus jugulare is felt unlikely given the lack of significant enhancement of associated bony destruction related to this mass. Meningioma is within the differential diagnosis…
The biopsy was the next step, and it didn’t take place for another month and a half. When the time for testing came, the needle was inserted into her brain for four samples. All tests were inconclusive because, Johanna says, the doctors indicated the mass was too solid to collect enough tissue to examine.
Now trending toward late summer, Johanna had only one answer she could hold on to.
“Even before this began,” Johanna says, “I was starting to realize my walk with God had become kind of stale. I was still reading my Bible, because I knew that’s what I should be doing, but really I had started to pray that He would help make this come alive for me and make it real.”
The uncertainty about the tumor in her head has made Johanna all the more certain of God’s presence in her life.
“I now see in Scriptures things I never had before. It’s so alive,” she says. “There are so many stories in which the sick have asked for help, and in every instance, if they asked for healing, He gave it to them. The Bible is God’s word, and He cannot lie.”
Just prior to the headaches intensifying and her first trips to the doctor’s offices, Johanna graduated from Southwestern Michigan College with a 4.0 grade average. May 2013 was supposed to mark the beginning of her adult life – she was making plans to job hunt in warmer climates and strike out on her own.
“Sure, it was frustrating. Who wouldn’t be frustrated? I felt like a dog scrabbling on the kitchen floor, trying to get my footing and stand up,” she says. “But, honestly, now I’m so at peace with the whole thing. Sure, this has momentarily delayed me from pursuing whatever my future plans are, but I have to deal with things one at a time. And I know in my heart God’s got it handled.”
To that end, she recently resumed a meaningful part of her life – her fitness regime. She’s started doing bootcamp workouts in hopes of building back up the muscles she still struggles with resulting from the temporary paralysis. While she can lift her left arm straight up over her head, it’s obvious she doesn’t have the usual range of motion when reaching forward.
“I don’t want to be the sick girl – I think that’s why a lot of people still don’t really know about the tumor. I don’t want anything like that to be my identity, or something I use as a crutch or an excuse,” she says.
“I don’t want this to derail my life anymore. I just want to be me.”
One day this past summer, John Johnston came home after work and saw something unusual waiting for him on the dinner table.
“Johanna said she’d been out shopping. I looked and it was a Superman watch,” John says of the gift that uniquely clarified his role in this family crisis. “We’d watched some of the superhero movies as a family through the years, and we talked about the life lessons in those. But it was funny, looking at the watch and seeing that Superman emblem – I felt the Lord saying to me, as a play on words, ‘Your job here is to watch, to know spiritually what is going on, and pray for Johanna to be strong and go deeper in her faith.”
Be always on the watch, and pray that you may be able to escape all that is about to happen, and that you may be able to stand before the Son of Man." – Luke 21:36
“Throughout the whole situation, there has been plenty of opportunity to fear, to feel anxiety, to have negative thoughts, to think Johanna is going to die,” John Johnston says. “In reality, God really has been good to our family. He has been bringing healing, and she has seen improvement in her symptoms. We’ve grown together as a family, and the church has closed in in support of us.
“This is a spiritual journey. As a dad, you sometimes have to act like you have all the answers. But I don’t press with this. My role as dad, here, is to be strong in faith to stand and encourage. It’s caused me to go deeper in my own personal journey, too.”
As evidence of his role as family Superman, John acted immediately after Johanna shared the news a mass had been found. They embarked on the “Johnston Family Prayer Initiative Weekend,” an open house to welcome support. It was the first of many outpourings – Johanna beams as she talks about the people she barely knew who called or visited to share words of encouragement.
Physically, she always has been strong. Her grip was once measured to be 40 pounds stronger than the average woman – and 10 pounds more than the average man. But emotionally, she had never faced such a test.
Her dad got the Superman watch. She needed a little reminder of her own, too.
“When I first found out about the tumor, I went out and bought myself some superhero shirts – it was just a joke with myself,” Johanna says. “I did it so I would always remember that I’m stronger than I think I am.”
Johanna has no insurance. She is part-time at The Truth and does not yet qualify for benefits, though the newspaper has tried to find her the additional work and hours.
Healthy and 25, medical insurance wasn’t really at the top of her list of things to spend money on. She isn’t on her parents’ insurance, because they, too, are without – her dad has been self-employed in construction throughout her life. She likely wouldn’t have asked for their help, anyway – Johanna is independent and wanted to pay her own way through college to start her adult life the right way.
The tumor changed everything, saddling her with thousands of dollars in bills and a pre-existing condition in a pre-Obamacare world. She’s tried to look at the Marketplace options provided by the Affordable Care Act, but website glitches and the government shutout have stood in her way.
She carries on, calling doctors and waiting for responses. Existing bills from the biopsy total nearly $10,000, and the necessary surgery is expected to cost in excess of $100,000. However, she refuses to quit her job and simply fall into the government safety net of disability and Medicaid.
Her strength has inspired her church, Voice Ministries, and her friends to create “Walkin’ With Jo,” a fundraiser to help ease the burden of medical bills. The first fundraising event will be a walk-a-thon with a silent auction Nov. 3 at Concord Mall, the home of Voice Ministries.
“It is overwhelming to see who is stepping up to help,” John Johnston says. “You can see the love and caring coming from people you don’t necessarily rub shoulders with every day. It has shown us, as a family, that this crisis has really been a blessing in many ways.
“Sometimes, you get complacent in life. Your priorities settle to the bottom. We recognize this is life-threatening and serious, but ultimately, it is a good thing. It is a situation that has brought us more anxiety – and more peace – than anything we’ve ever felt. It’s amazing. God is real, especially when you really need Him.”
Faith has always been a tremendous part of Johanna Johnston’s life. A brain tumor will not shake that foundation – if anything, it gives her a greater appreciation for the things she enjoys most.
“I love to ride my horse more than anything. Ever since I was a kid, I would just go with her on a gallop and forget about the world,” she says. “It’s when I feel closest to God – just me and her and Creation.”
She pauses, but not in a sad way. Instead, it’s reflective and peaceful.
“I’m out there a lot now.”