A Reflection on ALS - Lou Gehrig's Disease

Today is May 13th, 2015.

A year ago this week my father, Kurt Nenstiel, was alive.

Kurt was fighting ALS but still was in good spirits even though the disease was causing him to feel run down most of the day. He was a good man, not so righteous that you couldn’t love him, but not a man with out faults. Kurt enjoyed a good laugh, was humble, held onto his integrity, and had a deep care for his fellow man. He loved his family with great vigor, seeking to provide for them. I believe this was his most noble quality, the one I most remember, the one I wish to impart in his memory.

Kurt, even in his sickness, would go to work almost everyday. He was a mechanical engineer. When eight hours became too many, it was six, and then four. He would first walk, then use a cane for balance. Soon he would add a walker for support in his daily routine. Eventually the time came for him to use a wheelchair. Ultimately, his arms and legs would no longer support movement and he would drive the wheelchair with a joystick positioned in front of his lip. This was his normal. But he still went to work.

Somedays I would drive the van and drop him off at work — helping him inside through the front door which they retro-fitted with a ramp and a coded garage door opener just for him. I would quickly drive his chair for him on rainy days, or on better days reposition his joystick so he could make it up the ramp and inside.

In the cubicle I would place a bluetooth microphone on my father’s ear and position his chair so a software program and Nintendo Wii-like sensor his company provided him would be able to track his eye movement, allowing him to make selections and perform tasks on screen. He would send emails and review documents. But mostly I think his coworkers would come by to shoot the breeze.

Kurt must have been an inspiration to many in his office. He would show up everyday. And everyday there was a job for him to do. This is truly a testament to the kindness and love of the people he worked with. Four hours a day, a lot of it conversational — even with 20+ years of wisdom brought to the job — is not very productive. At least not by quantifiable and profitable measurements. But Kurt loved people. And when it was time for him to be loved back, the love poured forth. This was just his employment.

Kurt went everyday to work in order to support his family. When he learned of his disease, he grieved. My mother and he struggled. We all did. But he didn’t quit his job to travel the world. He didn’t stop caring for other people.

I remember taking him to visit someone’s home that his church growth group promised to wheelchair build a ramp for. Kurt was always good with his hands and was going to help create the structure out of wood — building the frame and finishing the job. By the time we visited the home that was to receive the ramp, Kurt’s body was already failing him. He walked the site with a cane. Knowing that he would no longer be able to do the work, he volunteered to buy the materials and help make the plans.

My father loved his family endlessly. He would encourage my sister and I to continue learning and working. He understood the balance better than we did. Even when Kurt’s disease required him to be cared for full time, he still urged us to take opportunities and live our lives. We cared deeply for him and both my sister and I spent hours each day helping him to do what he could no longer achieve — eat, brush his teeth, reach for something, change the channel. Simple things.

Kurt loved his wife, providing diligently for her. My mother’s outpouring in response to his need is nothing short of selfless. Daily, with much pain, she would care for him, bath him, sleep next to him, hold him. Love him. There would be breakdowns, anger, upset in the night. On both their parts and from everyone involved. We all felt the pressure and the hurt. But Kurt was cohesive. The family was all there was and is. The roles were played out and characters remain. The crescendo of selflessness still echoes as I remember and impart Kurt’s love for his family.

A love I hope to have for my own family.

A love I hope for you.