Living With ALS Takes Courage

Kristin Neva avatar

by Kristin Neva |

Share this article:

Share article via email
dental care for disabled patients | ALS News Today | main graphic for

Editor’s note: This column discusses suicide. Please find resources for help at the end of the column.

In the “Safety Training” episode of the sitcom “The Office,” Michael Scott, the boss, wants to prove that working upstairs in the office is just as risky as working in the warehouse. The office employees don’t use the forklift or box crusher, but the danger is still great because office stress can lead to depression and suicide. He plans to demonstrate the dangers of depression by giving an impassioned, farewell speech from the roof of the building before jumping off.

The employees spot a bouncy castle hidden behind a fence, but they’re still worried he’ll seriously injure himself. “He is going to kill himself pretending to kill himself,” one says. They try to talk him out of jumping, but Michael wants to prove his courage.

Recommended Reading
Living with ALS | ALS News Today | photo of the Schreiber family

‘Never Say Invisible’ Keeps Man’s Fight With ALS, Wider World Going

Darryl, the warehouse foreman, says, “Mike, you’re a very brave man. I mean, it takes courage just to be you. To get out of bed every single day, knowing full well you got to be you.”

“Do you really mean that?”

“I couldn’t do it,” Darryl says. “I ain’t that strong, and I ain’t that brave.”

That persuades Michael to come down.

The episode makes me laugh, and I relate to the quotation because it takes courage for me to get out of bed every single day, knowing full well I need to take care of my paralyzed husband and watch him suffer from a disheartening disease.

Living with ALS takes courage for both the person with the disease and a spouse-caregiver.

Todd is often bored. He looks for projects to do, but it’s difficult to fill the day. It’s hard for him to go out, especially in the winter, and his voice is so weak that he can’t really socialize with people in group settings or at restaurants. He has a few friends who faithfully visit him, and he’s grateful for that.

I am amazed at the ways Todd continues to invest in our lives. He just finished coaching Isaac, our 12-year-old son, through building a gaming computer and getting the drivers and software downloaded. Another memory with Dad for Isaac and a valuable skill passed on.

As his caregiver, I often feel isolated. Our world has become pretty small. I would like to get out and have more social interaction. I wish there were some way to fight this disease. I have worked to secure equipment and resources for him at each stage of the disease, but there’s only so much I can do. And now that he has a noninvasive ventilator and doesn’t plan to have a tracheotomy, I know the next stages of the disease will be relentlessly painful. I have anticipatory grief when I think about it.

And yet we keep going. We get out of bed every day, and we do what we can.

Persevering is success.

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.


Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Leave a comment

Fill in the required fields to post. Your email address will not be published.