His prognosis is dire, but this one small gift would help his family hold onto him

Jeff Hottle hoped to prepare his family for the day when he would leave them.

He wanted to share with them his best advice, and he wanted them to always be able to hold a piece of him in their hands because he worried that he may only have months to live.

Jeff had good reason to worry. In the summer of 2016, he tripped in Caledonia State Park on a path he had run many times before. It was an odd sensation before he fell, as he felt his foot drag along the ground before his body hit the ground.

It would take nearly a year to find out why his body was betraying him.

The diagnosis

Jeff, now 49, had been telling himself that he wasn’t getting any younger. He was an avid runner, but starting in about 2014, he found himself tiring more easily. By 2016, he felt like he had lead weights around his ankles when he exercised.

Jeff and his wife, Kelley, loved to hike, travel and work in their backyard together. Jeff worked long days as director of human services for a large Macy's fulfillment center, and when he was home in Chambersburg, he was devoted to his wife of more than two decades and three daughters.

Jeff had grown up in the outdoors, camping, sailing and hitting the beach with his family and the family of his childhood friend, Tracy Mullins of Shrewsbury.

So, he was baffled by his stumble at Caledonia and the weakness he felt in his legs and shoulders. He waited until the end of 2016 to see a doctor, and it remained a mystery.

A neurologist he visited thought he had a muscular issue, and a rheumatologist thought he had a neurological problem, he said.

Meanwhile, his physician told Jeff repeatedly that he did not have ALS, also known as Lou Gehrig's disease.

 “The obscurity was just stifling, knowing something’s happening but not knowing what,” Jeff said.

Finally, he got an appointment at Johns Hopkins with a specialist. There, tests upon tests began to reveal to a team of doctors what Jeff had. When he, Kelly and one of their daughters waited in a room for the doctor, a nurse performed a breathing test on Jeff. Her nametag was turned around so they couldn't read the three letters that would reveal his diagnosis: ALS.

Kelley had already believed this was his condition and had been crying about it for weeks. Jeff wanted to hear it from the doctor, but when he did, a hurricane of emotions hit him.

“It was so loud in my head that I couldn’t hear. Dr. (Charlotte) Sumner kept talking, but I couldn’t hear. It was almost like I wasn’t there,” Jeff said.

In an instant, his future blew up. 

"Nothing would be the same," he said. "How would we move forward? Goals, dreams, wishes, routines suddenly stopped."

He was 47 years old.

'Go move a mountain'

Jeff looked at his life as though he may only have six months left. Quit working, he told himself, and start writing the book in his head.

He retired less than three months after his diagnosis and self-published a book, "And they wonder why we drink: Life through the eyes of a man who is so normal that he is the oddball." 

He wrote what he knew: At work, he worked on sexual harassment cases and employees' drug and alcohol issues. "There's amazing depths to which the human experience can sink ... and amazing heights to which the human experience can rise."

In the fast pace of business life, "we can lose the human element of what we're doing but the human element makes it all possible."

Each chapter ends with life lessons for his daughters. His final advice: Go move a mountain.

"I wanted them to have something tangible of me, and not just a family heirloom but a tangible piece of my mind," he said. "The overall message was: Life is not about you. It's about what you make it and how you improve the lives of others."

Four little bears

Tracy Mullins commutes to Baltimore for work every day, but the work she really loves is in the sewing room of her home. 

She makes teddy bears, and the first four of those bears were for her old friend, Jeff Hottle.

Jeff and Kelley had found bears online, made from pieces of clothing, often given as keepsakes for the loved ones of someone who died. Jeff wanted his daughters and wife to have homemade bears, stitched together from his old work shirts.

Kelley thought of Tracy, who created blankets and pillows as keepsakes. Could Tracy make bears? It would make them all that more special.

Well, Tracy once made miniature bears, she told them, but not in a long time. She would need to create a pattern first. She made the four bears and started making more, now sellilng them on Etsy.

She has made bears for three breast cancer patients, friends of another breast cancer survivor. She's in the midst of 25 bears, made for a man's grandchildren. She even makes bears from a child's onesies.

A woman who saw her bears once told her she wouldn't buy flowers for a funeral anymore. "Flowers die," Mullins remembered her saying. "These can be kept forever."

Six months

At Christmas, Jeff gave his wife and three daughters the bears Tracy had made from his work shirts.

He wanted to see them receive the gifts while he is alive.

"They were cuter than I thought they'd be," he said. "They were shirts that I had worn for quite some time, and they had been transformed into keepsakes."

At one time, he thought he had just six months to live, and he wrote his book and quit his job, watching the clock tick on his life. But now, he focuses on today and all that he has, including two grandchildren. 

He said: "With the right perspective, there's a lot of beauty in life." 

"It's rough, but we laugh every day," Kelley said. "He's so calm. He always says, 'We'll figure it out.' With ALS, there's a fighting chance."

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