Toronto-Downtown WALK for ALS

Two months after receiving his ALS diagnosis in June 2017, Chris Gort made a decision to start writing letters to his family and friends. What started out as a small endeavour to keep his loved ones informed on his ALS progression, grew to a mailing list of 175 people. Reading these letters, the reality of ALS becomes jarringly clear – its progression is “relentless,” and Chris and his wife Elaine have had to adapt to a new everyday normal.

“In our experience with ALS, there is no stability,” says Elaine. “It has been hard on us, but almost harder is watching our grandchildrenGort family photo having to face their grandfather’s decline. Their connection is so strong. We take comfort in knowing they will have great memories growing up with their grandfather and have had meaningful experiences.”

This summer, his 14-year-old granddaughter asked him to read Tuesdays with Morrie, a memoir about a man who rekindles his relationship with his college professor in the last months of his life with ALS. After finishing the book, Chris says he and his granddaughter had a conversation that lasted an hour and a half about the realities of living and dying with ALS. This conversation is something Chris holds dear and hopes his granddaughter will keep with her for the rest of her life.

“ALS is terrible,” Chris reflects. “But I feel I’ve been given a gift in a way because I’m able to say goodbye. I’ve had the opportunity to reflect on my life and appreciate the people I love, including my wife of 52 years. It’s hard to say goodbye, but at least I’m able to.”

Toronto-Downtown WALK for ALS

Chris Gort walking with the use of a caneChris and his family will be cutting the ribbon at the Toronto/Downtown WALK for ALS on September 15, as well as giving a speech about their experience with ALS. They attended the WALK for the first time last year, having just been diagnosed three months prior. In one of Chris’ letters to his family and friends, he wrote an appeal for donations that resulted in 72 sponsors donating a cumulative amount of $8,000.

“To me, the WALK for ALS is hope for the future and a way to pay it forward,” says Chris. “I know that none of the research happening today is likely to help me, but I feel strongly that research needs to continue so people living with ALS in the future have an opportunity to see a cure.”

As for their advice to other people and families living with ALS, Chris and Elaine emphasize living one day at a time.

“We try not to focus too much on the future,” says Chris. “Our palliative care team recommends spending 90 per cent of time in the present and 10 per cent planning for the future. That’s how we are trying to live our lives.”

Besides his favorite pastimes – reading, visiting with loved ones, Sudoko, playing board games – this summer Chris discovered the “simple pleasure of sitting quietly and watching the play of light on the leaves in the garden, the splashes of colour provided by flowers and the antics of birds as they vied for the best seeds in the feeder.” He says that sitting still and doing nothing other than observing his environment has enriched his life.

The WALK for ALS takes place in over 90 communities across Canada until September 22, 2018. Register or donate to a WALK near you at Donations for all WALK for ALS events are being accepted until December 31, 2018.

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