Personal Testimony: A Young Officer’s Life with ALS

Before starting the interview, I am skeptical and have preconceived notions: I imagine a suffering, sickly man who would seem dejected at best and depressed at worst. I hesitate as I prepare the questions that I want to ask him. My heart beats rapidly as I wait for him to meet me.

After much anticipation, Captain Omri Hotam, an officer in the IDF’s Intelligence Unit, finally arrives. He is rolled into the room by a friend. He is not the slumped, pale and miserable person I imagined him to be. He sits erect in his wheelchair. His grin is radiant and his green, piercing eyes smile at me as he introduces himself in a calm voice. As our photographer snaps pictures of him, seeking to place him in the optimal lighting, he cooperates willingly. His good-natured and polite manner make for an easy going conversation in one of the most touching interviews I have ever held.

Capt. Hotam in his uniform near his office in the Intelligence Unit.

The Diagnosis

25-year-old Capt. Hotam’s life was completely ordinary before it reached a sudden turning point. He was born in the U.S. to Israeli parents who relocated due to his father’s position in an Israeli embassy. When Omri was a toddler, his family returned to Israel, where he spent the rest of his childhood. In tenth grade, he decided to enroll in a military boarding school in Haifa. After graduating high school, Omri drafted into the IDF’s Paratroopers Brigade. He served as a soldier and later on as a commander. Eventually, he went on to the Officer’s Training Course and returned to the brigade as an officer.

Omri in a military ceremony in the Paratroopers Brigade.

At the age of 22, Omri’s life was well on track to success. It was a three-word disease and one diagnosis that sent Omri off that track: Amyotrophic lateral sclerosis.

ALS, also known as Lou Gehrig’s disease, is a specific bodily disorder that involves the death of neurons that control voluntary muscles. The symptoms are: stiff muscles, muscle twitching and a worsening weakness caused by muscle wasting. People with the condition experience difficulty speaking, swallowing and eventually, breathing.

“After four years in the army, I discovered that I have ALS and was then able to choose whether I wanted to be released from the army or to continue my service,” says Omri, returning to the moment of his diagnosis. Instead of making an immediate decision, he took a year off to travel in South America and all over the U.S . “When I returned from my trip I decided to stay in the army and to move to a role in the Intelligence Unit, because [there] I can express my abilities and be productive.” Since then, another two and half years have passed, and he still serves in the unit as an officer in career service.

Omri travelling with his best friends.

For the past two years, an apartment with roommates in Tel Aviv is the place Omri calls home. “I still do everything people my age do, such as living in the city with friends. My three roommates are my childhood friends. Living with me isn’t easy because it involves a lot of work- they have to help me with everything and watch over me, but they’re such good friends,” he beams.

The Path to Raising Awareness

“Prior to my diagnosis, I had no idea what ALS was. It’s important to me to stress that ALS is a very rare disease. It’s not like getting cancer or diabetes. That’s why there is very little funding for the research about it and the search for a cure is undeveloped.”

Omri knows from personal experience that the best way to raise awareness is to expose the public to ALS patients such as himself or to promote original campaigns. “Initiatives like the ‘Ice Bucket Challenge’ are the first step in the path to raising awareness- these little things accumulatively put ALS in the public eye. Had you gone and randomly asked people what ALS was only a year ago, very few would have been able to give you an answer. Today, many people are familiar with the condition.”

Illustration of the ‘Ice Bucket Challenge’. Photo credit: AP/Elise Amendola

Omri himself practices what he preaches. A week after our interview, he threw a big party in Tel Aviv, exactly in the spirit of his ideology: living life to the fullest. All of the profits from the party went to a non-profit organization whose objective is to find a cure for ALS. “It was a party for young people, not a fundraiser. People danced and enjoyed themselves. My cause reached the young people I wanted it to, and that’s the best way to give ALS the exposure it needs.”

Facing the Disease: A Network of Love and Support

When I ask him how he contends with daily life in the shadow of the disease, Omri presents his unique approach: “Ultimately, the only way for me to handle this disease is to carry on with my life as much as I can- I have decided to continue working, serving in the army, traveling, enjoying life.”

Omri rappelling in a trip prior to his diagnosis.

He is quick to express his gratitude to the people who have made it all possible: “The people who serve alongside me are amazing. They help me a lot: they feed me, help me move around. They’re true friends. They are the reason I still serve here, they help me feel like I’m fulfilling myself.”

His childhood friends are another strong source of support he relies on: “I consider them family because we are so close and have grown even closer throughout this complex process.”

Last but not least, Omri introduces his real family as the backbone that allows him to maintain his life-affirming positivity: “We’re the most supportive and unified family. Above all, my mother is my greatest supporter. She helps me with everything. She’s the one who enables me to live the normal life that is so important for me to pursue.”

Before we part, our photographer asks Omri to pose with his colleagues. He complies willingly, joking with them about stealing the spotlight. Suddenly, he turns to me and answers the question he must have read in my expression: “I try to live my life normally. That’s what I have been doing ever since I found out that I have this disease. The way I see it, I didn’t and still don’t have any other option.”

As his friend pushes his wheelchair through the door to his office, I sneak in one last question. Is there a message he would like to pass on to anyone, be it ALS patients, myself or our readers?

His words linger with me much after I leave: “Life is good and worth living.”