Mt. Pleasant author overcomes tragedy and loss to write first book, ‘And Then There Was One’

MT. PLEASANT - In the book of life, there is always another page to turn. Few know that better than Susie Clark, of Mt. Pleasant, who has lived a life of love and loss but found light in the darkness through her new book, 'And Then There Was One.”

Her book tells the story of her life with her husband, Howard, and their two children, Danny and Lisa, who all succumbed to death within eight years of each other. The story, although one of grief, had a great beginning, she said.

Clark met her husband while working her 'first real job” at Meredith Printing in Mt. Pleasant. Her boss continuously tried to get her to meet with his son, but their paths never crossed until her boss ended up in the hospital in April and the pair finally met. The following Saturday they went for their first date to see the movie, ‘One Flew over the Cuckoo's Nest'.

'That was an omen,” she said with a laugh.

After the movie, he brought her back home and walked her to the front door. It was pouring rain and she insisted he didn't have to walk her, but he insisted he did.

'As he drove off I looked out and said one day I'm going to marry him,” she recalled. They were engaged two weeks later and married in October.

Children

In 1979, they welcomed the birth of their son, Danny, and in 1982, their daughter, Lisa. They moved to the St. Louis area and lived normal, healthy lives until 1985, when Lisa was 3, and her pediatrician discovered her spleen and liver were enlarged.

Doctors were puzzled and labeled it a lipid storage disease, but years later the family learned it was Niemann Pick Type C, a disease then unknown to doctors. Nieman Pick Type C is a lysosomal storage disease that slowly dissolves the brain cells one by one. The affected person slowly loses the ability to walk, stand, swallow and speak.

Tragedy struck the family again the year Danny was going into fifth grade and Clark noticed something was wrong. After several doctor visits, he was misdiagnosed with cerebral palsy (CP), a disorder that affects a person's mobility. They lived with the diagnosis for several years until his freshman year of high school when a teacher noticed his learning difficulties were slowly getting worse and because CP is not a degenerative disease, it should not have gotten worse.

'And so we started the food chain of neurologists,” she said.

Testing

After seven months of testing at Washington University, she took both children to an eye doctor who discovered they both had gaze palsy, a disorder that effects how far down one can look.

'The eye doctor said, ‘I could test a hundred kids and no two of them would have that, so he said I think you need to get your daughter in for testing also' and that's when the neurologist put the clues together,” she said.

On July 5, 1995, Clark learned that although her kids were one in a million to her, they were one in 4 million to both be diagnosed with Niemann Pick. The week before, Clark was stressing about her 40th birthday which was to come a week after the diagnosis, but suddenly, it lost its appeal.

'At that time, 40 was traumatic but I thought, ‘Who cares,'” she said. 'It didn't matter anymore.”

Danny's health began to take a turn for the worse when he turned 16 and died at age 18, one month before he was supposed to graduate high school. Lisa lived to be 20 years old, thanks to whom Clark refers to as her 'dream team” - a group of girls who stuck by her and helped keep her mental state in tact.

Grief

She resorted to planting in the garden and mowing the grass became her favorite task because it was the only way she could receive instant gratification in a world where there seemed to be no end in sight. After losing both kids, Clark said she felt hopeless most days, but found peace in the outdoors and in knowing she met so many people through the misfortune.

'My kids taught people a lot by their strength and their courage. They never complained,” she said. 'The night before my son died, Lisa knew. He was in a coma and she gave him a kiss and said ‘You always get to do everything first.' She knew she was following and never, ever, complained,” she said.

Seven years after Lisa died, Clark's life was turned upside down again when Howard was diagnosed with colon cancer.

'The oncologist said you're healthy, you're young, I give you five years. He actually lived 10 months from the day of diagnosis until the day he died,” she said. 'When he was diagnosed, I was real angry at God. We'd done enough, we'd paid our toll. Why would this happen to us? But, He didn't do it.”

Finding purpose

The following morning, Clark woke up and realized there was only one, the most miserable feeling of all.

'You want to be done with everything, but you know you can't take that route,” she said of dealing with repeated loss. 'So, I just figured there was some purpose I had and maybe this book is it.”

The idea to write a book began before she realized it. One of the symptoms of Nieman Pick is the patient staying awake for long periods of time. To keep track of the medications she was giving her son, she began recording them in a journal.

Those turned into a detailed daily recording of her days and when her husband was sick, she began posting on CaringBridge, a website that allows patients and families to connect through health journeys. She compiled them all together and slowly began to write her book.

'I guess I just felt like all of this had to have some purpose and (I hope) if somebody that's going through something that they think is terrible reads this, realizes that you can survive. It's not easy, and it never goes away, but you can survive,” she said.

Encouragement from Curt Swarm

Reliving every moment and going back through the steps was a long, difficult process that took about two years. Clark ended up in a writing class with local Mt. Pleasant author Curt Swarm, and submitted a few chapters for him to review.

'He's the one that encouraged me (and said) that I had to write this. He's been my mentor and encouraged me all along that I needed to pursue this and once I got started, I was almost obsessed with finishing it,” she said.

Although her story is one of strife and grief, Clark said the message of her story is much different.

'I think the circumstances are tragic, but the story, I think, conveys hope and courage,” she said. 'No matter what happens, somebody or something will come into your life that will hold you up, (no matter) what faith you have. There's always people around that will hold you up when you can't stand on your own.”

For readers, she hopes they see the light in the darkness and are compelled, just like she is, to turn the page every day, move forward with their lives and find the light in the darkness.

'I think for me it's not just wishful thinking, it's a survival technique. There's so much bad in life that you could just get swept away,” she said. 'At every sunrise there's a new possibility. It's that hopelessly Pollyanna outlook I have.”

Clark will host a book signing and meet and greet for her first book, 'And Then There Was One” on Saturday, Aug. 24, at 1 p. m. at Central Park Coffee Company located at 120 S. Main Street in Mt. Pleasant. Books will be available for purchase at the event or by contacting her directly: susieclark17@yahoo.com.