Steve Heronemus

Believe with Steve

About the Author

Steve needs a creative outlet since he no longer plays instruments due to ALS. He believes there can be music in words, too. 

Father’s Day Lament

What to do this Fathers’ Day? I grieve for the children who have lost their fathers.I grieve for the fathers who did not live to see their children blossom as adults.I grieve for mothers left to raise children without help.I grieve for the fathers who have given their lives over...

Read More

Who Is Expendable?

The COVID-19 pandemic challenges our notions of how “normal” life works. Work-at-home, virtual education and social distancing are giving our entire population a taste of how everyday life functions for many of the USA’s nearly 60 million people with disabilities. What typical people are unable to share in, however, is...

Read More

Right To Try A Failing Red Herring

I have a lot of political hot buttons and, while I try not to write about them all, this is one that is not particularly partisan and drives me absolutely bonkers.  Yesterday at his now daily coronavirus press conference President Trump touted the possibility of people using the Right To Try legislation to...

Read More

A Radical Christian Response to Gun Ownership

I hate that I have to write on the topic of gun “rights” again. (www.steveheronemus.com/undercurrent/guns-do-kill) I hate that precisely nothing has happened to stem the tide of mass shootings since that post. And I hate that I have to write the word “hate”, which I use almost never. To every person in...

Read More

35

This day is the 35th anniversary of the day Suzanne walked down the center aisle of her church, every step closer bringing her another step more beautifully in view as I waited in front of the altar. The 35th anniversary of when we, publically and within the ancient structure of...

Read More

Home Health Care Roulette

You know, families dealing with a loved one with significant medical challenges have enough on their plates. First comes navigating the healthcare system for diagnoses and treatment, then comes the nightmare of trying to pay for said diagnoses and treatment and medicine. And let’s not, please, minimize the emotional toll...

Read More

Rewriting Leda And The Swan

Suzanne and I met in an honors class about interpreting art taught by a professor from Germany I knew from my time there. She sat next to me the first day and became interested in pursuing a friendship with me and, although we talked, I was pretty standoffish. “Aloof” would...

Read More

A Tale of Two Candidates

The Illinois 14th Congressional District is reliably red most years, especially after redistricting in 2011 that countered its few urban neighborhoods with vast swathes of conservative, white, suburban and rural territory across 7 counties. The 14th is the district of disgraced and imprisoned former Speaker of the House Dennis Hastert,...

Read More

A Clockwork O’Kavanaugh

We have been witness in the past three weeks to a national drama over the importance we place on personal character and what might charitably be called youthful indiscretion as Senate politicians consider consenting to the president’s nominee for Supreme Court, Brett Kavanaugh. Three women made credible allegations of sexual...

Read More

Refraction of History

The prisms we use to view the world greatly frame what we actually see. This fact was brought home to me in crushing fulness through just one sentence, spoken once by one man.Throughout my life, I have been fascinated by and attracted to Europe. Listening to my great-grandfather and people...

Read More

Sending In Faith

Claire, our youngest child, has been feeling called to serve others. She has been serving guests at Walt Disney World, her dream employer, for the past year since graduating from college, yet she feels that the time is right for her to serve in a more meaningful way. So she...

Read More

Eating, First With My Eyes

Chefs often say we eat first with our eyes, meaning that how a dish looks influences our enjoyment of it. I am redefining that phrase.I used to do most of the cooking for my family when I wasn’t traveling for work. It was a joy for me, a creative outlet...

Read More

Disability Rights Threatened Again

Thursday, February 15, 2018 the U. S. House of Representatives passed the #ADA Education and Reform Act. This Act, likely to make it into law, requires people who are denied access to places of business to A) write the property owner within five days to notify the owner of the...

Read More

Trump’s Christmas Gift to People with Disabilities

Indentured service and separate but equal systems haven’t actually gone out of fashion. They have just been regifted to a different group of minorities. One of the richest people in the country (allegedly) convened his Sessions at the Department of Justice to, in his best Alabaman, “I Declare” that Abbie...

Read More

Shells: The Bible Study Companion

My newest book is available on Amazon, in book and Kindle forms!Many readers of Shells: Sustained by Grace Within the Tempest asked if some chapters were grounded in specific Biblical passages. This, along with hearing from readers already using Shells in their Christian study groups, formed the impetus behind this...

Read More

Inflection Point

It was mere minutes before closing time. We needed to get a jump on the crowd to get back to the hostel before lockup time. Given my beer consumption and the long train trip back to the hostel, I made my companions wait for a time while I went to...

Read More

On Giftedness

Yesterday my Facebook post was rightly dedicated solely to Claire and the melody of her accomplishments, but there is an accompanying theme in this music.I was diagnosed with ALS in 2005, when Claire was still in grade school. The doctor who gave me that diagnosis, and the cold statistics of...

Read More

O Woe is Wheelchair

If you have read my book Shells: Sustained by Grace Within the Tempest you already have an intro to the absurdity of power wheelchair pricing and insurance coverage. With a couple of years more down the road, so to say, I have an update that tips the absurdometer beyond full.My original power...

Read More

Have a Good Day

What Makes a Day “Good”? It is such a common sentiment. “Have a good day.” Comedian George Carlin had a field day with this one, wondering in many ways how one could measure a day’s “good-ness” and how dare someone saddle you with the burden of their expectations. “What if I...

Read More

Inclusion for a More Whole Body of Christ

Faith Lutheran Church, Appleton, WI “Misspelled” words are to make my machine pronounce words correctly.​Bible quotes are from the Common English Bible. Good morning! Can everyone hear me? How do you like my electronic voice? Grace and peace to you in the name of our risen Savior Jesus Christ. My name is Steve...

Read More

Lenten Plunge

Text of my message to Bethlehem Lutheran Church Lenten Vespers Service, March 16, 2016. Our theme for Lent was “Plunging into Deeper Discipleship”. Hello, my name is Steve Heronemus.Life is full of plunges. Some we choose to take, while others catch us like the trap door in a Looney Tunes...

Read More

Rejoice and Celebrate

Sermon from April 3, 2016 at Carthage College. Text based on Psalm 118:14-29. Spelling “errors” are to get my machine to pronounce words correctly. Grace and peace to you in the name of Christ our savior. My name is Steve Heronemus and it is a joy to be with you...

Read More

Use Your Speech Generating Device as a Telephone

Voice communication is an essential part of everyday life. Staying in touch with loved ones, managing finances, and dealing with insurance issues all require real-time voice conversation. For me, I am trying to start a business and everything, from registering a company with the state to opening a business banking...

Read More

What Will the FDA Approve, Part, 2

August 18, 2015 the Food and Drug Association approved Addyi, the “female Viagra” said to increase desire for sex among premenopausal women. When available in October, the Sprout Pharmaceuticals product will carry a black box warning, the strongest caution the FDA issues for side effects. Addyi can cause life-threatening complications...

Read More

Sailing Away, and Sailing Toward

Boundaries and limitations exist only where we place them.Freedom, independence, and fun are 3 words rarely heard in conjunction with life with disability. While people with disabilities are no longer hidden away in shame by their families, nearly every time I am out in public I see someone’s face cloud...

Read More

Open Air Concert

It’s a beautiful, breezy, late spring day, a gorgeous day for an outdoor concert. I roll into my spot, tilt the chair back, put my feet up and eagerly await the show.  The gust hits our backyard birch first, the tree’s slender branches motioning an easy downbeat. The Instrumentalist breathes...

Read More

Want to Help Children? Empower Women.

Those eyes. Those stomachs. Terrible images of starving children haunt our comfortable lives. Whether we see pictures of fly-covered children in Africa, orphans taking up residence in South American landfills, or homeless American children picking through dumpsters, our hearts sink at the utter horror of the helpless dying unimaginable deaths....

Read More

11 Incredible Women

Continuing our celebration of women after Mother’s Day, here are women whose accomplishments deserve uplifting. These women dare to dream what most can’t fathom, do what only a few score have tried, push their bodies and spirits beyond what anyone can conceive, and challenge perspectives of where women can go....

Read More

What Does the FDA Approve?

Comparing Feeding Tube Nutrition Products FDA:-Approved Nestle Iso-Source 1.5 Cal Ingredients: ^gi: WATER, CORN SYRUP, CANOLA OIL, SODIUMCASEINATE (MILK), SOY PROTEIN ISOLATE, AND LESS THAN 2% OF MEDIUM CHAINTRIGLYCERIDES, CALCIUM CASEINATE, PEA FIBER (INSOLUBLE FIBER), GUM ACACIA(SOLUBLE FIBER), FRUCTOOLIGOSACCHARIDE (SOLUBLE FIBER), POTASSIUM CITRATE, POTASSIUMCHLORIDE, CALCIUM PHOSPHATE, MALTODEXTRIN, INULIN (SOLUBLE FIBER FROM...

Read More

Mothers Deserve More Than One Day

John Oliver, on his news comedy show Last Week Tonight, gave a blistering commentary on the hypocrisy of celebrating Mother’s Day  in a country that marginalizes mothers at every turn in the workplace. He begins with the fact that America is tied with Papua New Guinea for the worst maternity leave...

Read More

Family with ALS Needs Help

This is a heart-rending situation.This husband and father, diagnosed with ALS in 2013, is a citizen of Togo but in the U.S. legally. Because of his status he cannot get health care services in Utah where he and his family live and he is ineligible for Medicare, Medicaid or Social...

Read More

More Young Adults Choosing to Give

There is a growing trend among young people getting married. Recognizing that they already have enough, they are choosing to have wedding guests give to charity rather than give the couple gifts. Well done, and I hope this trend continues.

Read More

Easter: Cure or Healing?

I am before you in a body that is broken. A.L.S. is a cruel disease. 12 years ago I was a healthy man who played with his children, a man who hugged and cuddled with his wife Suzanne. 12 years ago I liked to cook, I could do chores, I...

Read More

The Gift of Life

As I type this our firstborn child, our baby, is in labor at our local hospital. Our firstborn is in the process of delivering the firstborn for her and her husband.Our firstborn, our baby whom Suzanne spent more than 30 hours trying to deliver before the baby became distressed and...

Read More

The Bad Math of ALS Trials

If you want to call me a geek, that’s fine but you’re at the end of a long, long queue. I worked out the math for how many pALS would need to participate in a clinical trial to have a valid random sample group. Spoiler alert: Lots.I won’t bore anyone with the...

Read More

Awareness Efforts Bearing Fruit Already!

@Suzanne Boncel Heronemus and I made the Tribune this week for our start to elevating awareness of the difficulties faced by people with disabilities out in public. Our city’s leaders have been wonderfully open to this conversation. A Panera customer may have overheard management talking about their doorway, so our efforts may be...

Read More

Rauner Budget Punishes the Disabled

New Illinois Governor Bruce Rauner has made a mission of “fixing” the state’s budget, and we have just seen who he expects to pick up the load. He’s not tapping the wealthy, the corporations or even the middle class, he’s going after that well-known, entitled, deep-pocketed class called the Disabled. Rauner’s...

Read More

Working for Accessibility in Bavaria

Suzanne and I were honored with the opportunity to begin a dialog with Batavia’s leadership on making our city a safer, more inviting place for people living with physical disabilities.Read Eric Schelkopf’s article in the Kane County Chronicle.My presentation text: Good evening and thank you for this opportunity to speak with...

Read More

ALSA Freezes Patients Out

The national ALS Association is failing to support the ALS community that so lavishly supported it. It is awash in cash from last summer’s Ice Bucket Challenge, a $120 million windfall it never expected. The IBC was a grassroots effort it did not need to plan, organize or run, yet...

Read More

Shells Gets Sermon Mention

Pastor Bill Knapp of Fox Point Lutheran Church (Fox Point, WI) delivers wonderful sermon “Don’t write the Unfortunate Story” highlighting the choice we have in Christ to live in the light. I’m honored that he quotes from Shells to support his point. Listen to the sermon here.

Read More

A Silent Scream

Thank you Leon Peek for sharing this story. This fight with the FDA over their approval process is not new and we must honor Kyle and so many others by picking up the battle where they left off. by Terry Frank – November 23, 1999 The painfully disturbing picture “The...

Read More

The FDA, Genervon and Kangaroo Trials

By the time another kangaroo trial is over, 15,000 pALS will be dead. Conditional approval of GM6, giving supervised access to thousands of pALS is the only way the FDA and Genervon will know if GM6 is effective. People with ALS may not have voices but we deserve to be...

Read More

100+ attend Shells Bible Study and Book Signing

Thank you to Pastor Tim Mech and the congregation at Trinity Lutheran Church in Sheboygan WI for inviting me and my family to lead a Bible study on the disciplines of discipleship as presented in Shells January 4th. Your hospitality and care were tremendous God’s grace and peace I leave you. 

Read More

Why Call it Shells?

ALS eventually will paralyze all vontary muscles as the nerves activating them die. When people with ALS become unable to speak or use their hands to write, our thoughts, songs, joys, concerns and needs are locked up within our perfectly normal minds. We are said to be in a shell.There...

Read More

My Wish for You

Shells is a collection of short meditations. I hope it becomes a book you can come back to in times of need and quickly find something that resonates with you and brings light to the dark.

Read More

Writing Shells

Shells has been some 5 years in the making, beginning with a “You should write a book” comment from my wife, Suzanne. I felt that was a good idea if for no other reason than to give my children a lasting resource to remember what kind of man their father was...

Read More

About the Cover Art

The cover art for Shells was created by Rob Tucker, and I absolutely love it. What do you think?  Front: Life can seem like a lonely, isolated beach with violent weather all around, but there are gifts we have been given that will bring purpose and strength to rise above...

Read More