About the Authors
Todd and Kristin Neva, authors of Heavy, Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS, seek to encourage people who are suffering through their book, blog, and speaking ministry.
In June 2010, then 39 years old, Todd was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, after experiencing weakness in his left arm. Although the average life expectancy for persons with ALS (PALS) is three to five years, 20% live five years or more. The disease progression for Todd has been relatively slow and his speech has yet to be affected. He has continued to lose muscle function in each of his limbs month after month and now requires the assistance of a caregiver, his wife.
Todd Neva is a native of Minnesota, where he received a BS in Business and an MBA from the University of Minnesota. He worked in marketing research, finance and manufacturing for sixteen years before becoming disabled in June 2012.
Kristin Neva is a native of Michigan’s Upper Peninsula. She graduated from Moody Bible Institute with a degree in youth ministry. Before becoming a stay-at-home mom, she was a full-time urban youth worker at the Milwaukee Rescue Mission where she wrote curriculum, taught Bible lessons, and coordinated an after-school tutoring program.
Prior to becoming disabled, Todd worked for a large manufacturing company in Racine, Wisconsin, where he and his wife Kristin lived with their two young children, Sara and Isaac. The Nevas relocated to the Upper Peninsula of Michigan to be near Kristin’s family.
Todd and Kristin were married in 2003.
Neva is pronounced: ‘nē-və, rhymes with Geneva.
About the Book
Heavy , Finding Meaning after a Terminal Diagnosis, A Young Family’s First Year with ALS was written to provide encouragement to people impacted by serious illness, disability, or a terminal diagnosis.
After Todd Neva’s diagnosis of ALS in 2010, the Nevas read books by others who face grief and disability. They noted that many books deal with the author’s experience with illness retrospectively, often from the spouse’s perspective, or from the patient after some time has passed. The Nevas began writing their book in the first year of the diagnosis, when emotions were raw.
Heavy is an honest look at a young family’s first year after an ALS diagnosis. The story is told from Todd’s viewpoint (the Person with ALS). Todd’s wife, Kristin, writes journal entries that are interspersed with Todd’s account so the reader gets both angles—the person diagnosed and his supporting spouse. The dual voice of the patient and caregiver, man and woman, each sharing his and her perspective on a life-changing diagnosis, is uncommon.
Both Todd and Kristin struggle to reconcile the diagnosis with their Christian faith. They ask the question, “How can a good and loving God allow suffering?”
Although Todd has ALS, the book does not deal with the specifics of the disease or his care. The book focuses on the loss of dreams. Those impacted by other life-changing events may be able to relate to its message.
Key themes in Heavy include:
- Seeking God, even in anger and sadness;
- Modeling a positive response to adversity for one’s children;
- Focusing on the present, not on things out of one’s control; and
- Understanding God’s purpose in suffering.
“There is pain and suffering in this world, but there is also joy, and not just suffering here and joy there, but suffering and joy in the very same place.” – Todd
“I am forced to be humble, receiving help when I am weak and unable to return the favor. Those who help me are fulfilling the Apostle Paul’s admonishment to ‘help the weak,’ and they are blessed. I am blessed to receive their help, but I would still rather have the blessings of giving. I’ll have to find new ways to give.” – Todd
“It comes down to attitude. I’ve reflected on the past, in light of my condition, that I’ve worried about so much when there was really nothing to worry about, and now that I really have something to worry about, I haven’t many worries.” –Todd
“I have time to build memories, to live well. My children will see a man who lived to his last breath. Though I have limited physical strength, I can demonstrate mental toughness. So much of life is out of my control, except for my attitude. Shouldn’t this be ho we all live, whether we have six years or sixty? I have decided to live well.” -Todd
“Sometimes swearing feels like the best expression of my anger about our situation. On Sunday, I worshiped in the morning and swore in the afternoon; it did not seem incongruent to me in my situation. I did both with my whole heart.” – Kristin
“In hard times, I am more desperate, and desperation brings me to God. We all experience hard things. We can dull our desperation with TV, the Internet, alcohol, shopping, or fun while we wait for things to get better. Or, we can come to God. “ – Kristin
“I can’t wrap my mind around God’s sovereignty paired with the bad things that happen in life. But maybe I don’t need to. Maybe the point of the story of the blind man is that God, through His grace, can redeem any situation, and even bring out of it purpose and meaning.” – Kristin
Where to find Heavy:
Heavy is available on Amazon and limited distribution in other book sellers. The list price for Heavy is $9.99 for the paperback edition and $5.99 for the Kindle edition.
Paperback – http://amzn.com/0615917585
Kindle – http://amzn.com/B00I9N8XA4
Heavy ISBN: 978-0615917580
According to the ALS Association, “Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are totally paralyzed, yet in most cases, their minds remain sharp and alert.” (ALS Association website, accessed February 7, 2014)
According to the Muscular Dystrophy Association, “ALS is a disease of the parts of the nervous system that control voluntary muscle movement. In ALS, motor neurons (nerve cells that control muscle cells) are gradually lost. As these motor neurons are lost, the muscles they control become weak and then nonfunctional.
“The word ‘amyotrophic’ comes from Greek roots that mean ‘without nourishment to muscles’ and refers to the loss of signals nerve cells normally send to muscle cells. ‘Lateral’ means ‘to the side’ and refers to the location of the damage in the spinal cord. ‘Sclerosis’ means ‘hardened’ and refers to the hardened nature of the spinal cord in advanced ALS.
“In the United States, ALS also is called Lou Gehrig’s disease, named after the Yankees baseball player who died of it in 1941. In the United Kingdom and some other parts of the world, ALS is often called motor neurone disease in reference to the cells that are lost in this disorder.” (Muscular Dystrophy Association website, accessed on February 7, 2014)
MND, Motor Neurone Disease, is the generic name given to a group of diseases that affect the nerve cells that control voluntary muscles. Types of MND include Amyotrophic Lateral Sclerosis (ALS), Progressive Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP), and Primary Lateral Sclerosis (PLS).
About Speaking Engagements
Todd and Kristin have spoken in several forums on topics such as:
- Preparing Children to Face Life’s Challenges,
- The Head and Heart of Suffering,
- A Life of Meaning,
- A Conversation on Suffering, and
- The Process of Grief and Finding Purpose in a Disabled Life.
Audio sample: an interview with Mary Ann on WMPL Radio March 19, 2014.
To request a speaking engagement, send an e-mail with your contact information to the info address at the top of the page in the header.