When Susan* felt the storms rage and threaten to take her under, a small voice said, “Don’t shrink back!”

Those words are found in Hebrews 10:39. It says, “But we do not belong to those who shrink back and are destroyed, but to those who have faith and are saved.” She clung to those three words during high school when her faith was being tested.

Those words became even more important during the first years of her marriage and then again as she faced overwhelming health challenges in her late thirties.

* Her real name is used with permission.

Fighting for Jason

At an afternoon concert at church one Sunday, Jason noticed Susan. He pictured marrying her and introduced himself a few weeks later.

While they were still friends, Jason told her about the brain stem tumor his doctor found two years prior. His honesty about such a personal matter drew her in. They began dating, and she fell in love with him.

Just six months into their marriage, the tumor in Jason’s brain began getting progressively worse. Susan’s focus became fighting for Jason and believing he would be healed.

Anchored Her in Eternal Truth

Watching Jason’s health decline was difficult, but Susan wrote songs to process all of it.

“I repeated a mantra of sorts during those months. I would say, ‘I love you, Lord. And I know you love me.'”

The peace she felt and reminding herself of God’s love for her anchored her in eternal truth instead of being devastated by her day to day reality.

Jason fought hard. But when their son Nathan was 4 1/2 and their son Sam was 3, Jason passed away. Susan became a widow at 27 years of age.

A Crazy Spiritual High

“My journey to a deeper, abiding awareness of His presence began in earnest that night (the night Jason passed) so many years ago,” Susan shared. “The intangible became real and the veil between heaven and earth, permeable. Miraculously transformed by his assurance and love, I had been able to kiss Jason goodbye and begin life as a single mom with a confidence not my own.”

God’s presence was very real to her in unexpected ways after Jason passed. Susan described it as “a crazy spiritual high.” This “high” strengthened her during the years she was a single parent.

First Signs of Her Own Health Struggle

Finding love again wasn’t really on Susan’s mind, but it was about to find her. “After eight and a half years of widowed life, Don asked me out for coffee,” Susan wrote in her book The Great Undoing and My Journey Home. “The catch? His wife had only been gone a month.”

She prayed and asked for God’s guidance. She felt God say, “You’ve been alone a long time. It’s OK.”

The first signs of her own health struggle showed up six months into their relationship when she was performing at a barber shop show. While Susan was singing, she felt weakness in her left ankle. It progressed into a shooting pain and heaviness in her lower legs.

“Months of testing revealed little, and the descent began,” she wrote. She began using a cane to steady herself as she felt she was living out the Weeble Wobbles theme of “Weebles wobble, but they don’t fall down.”

Despite her continued struggles, the doctors hadn’t diagnosed Susan yet.

This Season of Her Life

Don and Susan dated for a little over a year before marrying. After he proposed, Susan looked him in the eye and said, “You know I might have MS. Are you ready for that?” Don didn’t blink an eye.

For the next five years, Susan endured many tests in hopes of finding an explanation to her health struggles. Her legs continued to be wobbly and unstable. Mental fog prevented clear thinking. Having to use a wheelchair made her very uncomfortable. Pain in her wrists made playing the piano painful.

Susan reflected on this season of her life in her book. She wrote, “Trusting God for provision and healing and even joy had been an adventure in my twenties. Trusting Him for the same in my forties makes me weary, which may be the root of the matter. I don’t want to work this hard again. I want my version of the Promised Land. But even the Promised Land held giants.”

Understandably, Susan was frustrated. Toward the end of those five years, she underwent an ankle ligament surgery that left her with pain in the back of her leg. A back surgery to repair a herniated disk followed five weeks later. Still no diagnosis to explain her continued health struggles.

All Those Symptoms

A momma’s heart hurts when her child experiences pain, and she is unable to stop it. This was the case when her then fifteen-year-old son Sam began complaining of his hips hurting, having difficulty walking up steps, and his hands shaking when he wrote.

Reflecting back, they realized Sam had been experiencing pain for several years, but it had been ignored.

Muscle biopsy testing when Sam was sixteen revealed he had Mitochondrial disease. The diagnosis confirmed his weak muscles and messed up nerves. A spinal tap done a year later revealed he also had Cerebral Folate Deficiency.

Susan underwent a muscle biopsy and spinal tap, too. Her diagnosis came at age forty-one, just six months after Sam’s initial diagnosis. It was the same as Sam’s. A progressive disease with no cure.

Those words might drown some in fear, but Susan chose to trust God.

Gives Life to My Soul

Medications and supplements have been a part of both of their lives since then. Costly? Yes. Very. But without them, their quality of life is significantly impacted.

I asked Susan about living with a chronic illness and fighting to maintain a positive attitude. She said, “The hard stuff in my life has never stopped, but I’m glad through it all the Holy Spirit has been made real to me. I feel His love and comfort. It helps God’s love story stay real.”

Susan’s passion for piano and songwriting has sustained her during the hard times. When she crafts songs, she can take what she feels on the inside and share it with others. She said, “Music gives life to my soul.”

You can listen to her music here!

The Great Undoing and My Journey Home

A songwriter well before a story writer, Susan turned to writing her life story as a means of healing. Her book The Great Undoing and My Journey Home dives much deeper into her life with Jason, her boys, Don, and her health journey. In addition to her book, Susan writes weekly on her blog Coffee, Faith, and Chronic Disease.

Susan has learned many valuable life lessons during the loss of her first husband, being a single parent, and having an incurable chronic illness. She shared, “Even though I’ve been tested on many fronts, instead of it taking more of me away, it has drawn me closer to God. I don’t allow what I feel (hurt/pain) to dictate my actions. I’ve decided the only thing on my bucket list is to know God more. ”

Once when speaking she reminded her audience that there is a war being waged against us as we seek to know God’s love. This war must be fought daily and is as real as women trying to cover their gray hairs. 🙂 I know the women reading this can relate to the daily battle of trying to cover those gray hairs!

Don’t Shrink Back

Susan has held tightly to the words God whispered to her all those years ago: “Don’t shrink back.” Not shrinking back when she became a young widow. Not shrinking back when left to raise two boys on her own. Not even when she and her son were given a diagnosis of an incurable chronic illness. Instead of shrinking back, Susan has fought to overcome each of the struggles life has thrown at her.

Susan said, “Overcoming is choosing to see the “yes” opportunities instead of focusing on the “no’s” that come along in life. It’s also being able to trust God on your darkest day.”

Leave a reply (below): Do we, like Susan, believe in the words of Zachariah 9:12 regarding our struggles? It says, “Return to your fortress, you prisoners of hope; even now I announce that I will restore twice as much to you.”