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Remembering John Rooney: ‘I Am The Face Of ALS’

John Rooney, a longtime Chicago reporter, died Thursday (June 30) of ALS. In 2014, he offered his thoughts on facing serious illness and death in this Op-Ed. 

By John Rooney

The ALS Ice Bucket Challenge became big news over the summer.

My wife, three sons and I participated in the challenge during August. For us, it was very personal.

I am a face of ALS, also known as Lou Gehrig’s disease. My diagnosis came in March.

My mother and her sister both had the disease, which destroys nerves, causes progressive paralysis and is eventually fatal. I am the first member of my generation in the family with the disease.

I suspected I had the disease for more than a year due to weakness in my left leg and based on family history.

From the time of diagnosis, the average life expectancy for an ALS patient is between two and five years. But the disease impacts people differently, depending on where it starts. Some patients live for more than ten years.

About 5,600 people in the U.S. are diagnosed with ALS annually. I am one of about 30,000 Americans currently affected.

Only about ten percent of the cases are considered hereditary. I caught the bad gene.

There is currently no cure for the disease.

John Rooney

As of early September, the main symptom of the disease I face is weakness in both my legs. I use a walker for balance and eventually will become a wheelchair user.

Since the time of the diagnosis, I have said the disease won’t define me.

I continue working full time as a staff writer for the Chicago Daily Law Bulletin and regularly socialize with family and friends.

In mid-May, I wrote a column about my diagnosis that ran in the Law Bulletin. As a now 26-year veteran of the paper, I wanted to inform the legal community of my condition. I also wanted to focus attention on the continuing work in Chicago and elsewhere to find a cure for the disease.

During this journey, I rely on my Roman Catholic faith along with strong support from family and friends.

My mother, Mary Flynn Rooney, who died in 2000, is my model for dying.

After watching her sister die from the disease, she knew what to expect. As a registered nurse, she would say, “A hospital is not a good place for a healthy person.”

My mother did not spend a single night in the hospital or at a nursing facility during her illness. Unlike some ALS patients, she could speak up until the time she died.

My mother faced her death with dignity, strong faith and constant support from family and friends. She died during July 2000 in their Oak Lawn condominium surrounded by my father, Edmund J. Rooney Jr., my sister, Ellen Rooney Martin, a hospice nurse and me.

From my perspective, it was a peaceful death.

If possible when the time comes, I want to experience a “good” death. What I mean is that I don’t want it to be at hospital or nursing facility.

In 1998, my parents wanted to sell their home on Chicago’s Southwest Side and move to an accessible condo building. My wife and I bought their home.

We remain in that house. The bathroom is now accessible. A deck and elevator lift will soon be built at the back of our house. When I’m using a wheelchair, that entry should allow me to access and leave our home more easily.

At age 55, I do what I can to draw awareness to ALS by working with the Les Turner ALS Foundation based in Skokie, Illinois.

My family has a long-standing relationship with the foundation because it supported my mother. The foundation now supports my family and me.

At this time, I participate in a clinical research trial with Dr. Robert L. Sufit, my neurologist at Northwestern Memorial Hospital.

One of my standard phrases has become, “I can’t rewrite the ending. So, I don’t spend a lot of time dwelling on it.”

Many people tell us they and others are praying for me. That’s humbling and sustaining.

A large group of friends and family members are planning a benefit to help raise money for my care-related expenses. One of the stated goals of the benefit is to show how much I’m loved.

Both my family and I feel extremely loved by the prayers, thoughts and support we regularly receive.

We continue to enjoy our lives together and cherish those memories.

My family and I continue to welcome, thoughts, prayers and things that will make me laugh.

Laughter provides a great healing effect.

John Flynn Rooney is a second-generation Chicago journalist. His late father, Edmund J. Rooney Jr., was a legendary Chicago Daily News reporter who taught journalism at Loyola University Chicago. John is a graduate of Loyola and a veteran of both the City News Bureau of Chicago and the Tampa Tribune. For 26 years he has worked as a reporter for the Chicago Daily Law Bulletin. The married father of three lads is a proud fan of the Chicago White Sox, Chicago Bears and Chicago Blackhawks.

See also: My Dad Is The Face Of ALS: Hopes For A Good Life by Jack Rooney