Last month, John Scarborough and his two brothers completed their “Long Walk Home.” The 459km walk was a way to honour their sister and John’s first wife who both died of cancer, and to remember Rita, John’s second wife who died with ALS a year ago. The brothers set out in Toronto from the home where Rita was born, and ended up at John and Rita’s home in Ann Arbor, Michigan, where they lived together from 2013. The walk was healing for John and his brothers, while also a symbol for Rita’s life journey.

John’s goal was to raise awareness about ALS in Canada and in the United States. Having witnessed the many physical and emotional challenges Rita faced during the course of her illness, John learned first-hand, the toll ALS takes on a person’s energy, and the courage it takes to adapt to the gradual loss of motor function as the disease progresses. He wants people to know more about ALS, especially now that there is real hope for treatments and the possibility of a cure on the horizon. Now that he’s retired, John plans to spend time volunteering for the cause as a way to help others facing this devastating disease.

John speaks with the greatest admiration and love for the way Rita embraced life, and the way she confronted ALS. He readily admits Rita could run circles around him when they first met in 2011. She was vibrant, active, independent, and adventurous. When her diagnosis was confirmed in January of 2015, the couple visited Hawaii, Florida, Latvia, and Toronto, seizing the opportunity to travel while Rita could still get around using a cane and a walker.

John also found creative ways to focus on making each day easier for Rita. As Rita’s body gradually weakened, he used his engineering skills to design and install customized aids. John watched Rita, noticing places in the house where she would grab on to stay upright, and he came up with a way to install fold-up hand holds so she would have less trouble getting around. John also installed a dual shower system with a chair and grab bars to assist with bathing.

As an oncology nurse, Rita was no stranger to suffering. In John’s words, she was “the embodiment of a nurse,” filled with compassion and caring for others. Even though she was dealing with symptoms of ALS that limited her mobility and sapped her energy, Rita lovingly took on the role of hospice nurse to John’s sister and her family at the end of her life.

Rita remained fiercely independent, preferring to do things on her own, even when it required inordinate patience as simple physical tasks became increasingly challenging. She accepted her reality, and found ways to adapt. In emails and texts to friends and family, she liked to insert a turtle emoji to remind them that though she was slow, she was still there doing her best. As everything slowed down, Rita saw an opportunity to pay even more attention to the small things, to savour a moment in her garden, or to stop and chat with a homeless person along the way. The burden of ALS was not easy, but Rita’s radiance continued to brighten each day in the lives of those she touched, and continues to do so today.

During the month of June for ALS Awareness Month, we will be sharing the stories of people living with and affected by ALS who have chosen to seize each day in whatever way they can. You can also share your own stories and reflections on Facebook, Twitter and Instagram and hashtag #SeizeTodayALS.

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