Page 39 - Tom Steyer Issue

“We CF patients have joked that everyone is experienc- ing a small dose of life with CF now,” Cindy said.
Instead, Amy has settled into more activities within her apartment, some with her roommate and some on her own: Singing, blogging, knitting, cooking, and drawing.
Kati Gardner of Raleigh, N.C., can relate. A writer and friend of Cindy’s, she is a single-leg amputee from childhood cancer. She jokes that she worked out before COVID-19 shut down her gym “because I need to, not because I enjoy it.”
“Being on the fourth floor of an apartment in a dense city where people are taking the measures pretty seri- ously, I have spent more time recreating at home,” Amy said. “But I do miss nature, being able to go to Vegas or the beach. I was making efforts to get out more and was going to volunteer and join a local church, and the virus put a stop to that for now.”
Travel restrictions and sanitary precautions took her back to the time of her chemotherapy treatments at age eight.
Back in Knoxville, Max is an active kid with his wheel- chair, in the floor at home, and on the ice. Travel sled hockey has been an excellent outlet for him with week- end tournaments and a practice once a week.
“Wearing the mask was a little triggering for my brain,” Kati said. “It reminds me a lot of when I was on treat- ment because I didn’t have an immune system and couldn’t go out. I couldn’t go to the movies. I couldn’t go shopping. I couldn’t go to school. So to me, this is very reminiscent of that time in my life.”
“You’re thinking that hockey for a bunch of kids with disabilities is just the parents there saying, ‘Oh, look at them go. They’re having fun.’ No,” Bud laughed. “There are fights. These kids are competitive.”
Kati, her husband, and their two daughters have been forced to adjust their recreation, which was mostly park visits and playground fun. Both provided a controlled area for Kati to navigate with two forearm crutches while monitoring her girls, but both were closed during the pandemic. They also were avid movie-goers, but not now.
When the pandemic halted organized sport, like other families with active children, boredom slipped in to take its place.
The greenway near their house is an option for Kati’s husband and children to bike and walk, but she said the leaves and natural debris along the path make it slippery and dangerous.
“As a parent, it’s been hard because you’re inside all day long,” Bud said. “He can’t get outside and run and play. He can get outside because we have a ramp and some asphalt around the house, but the area he’s able to get to is smaller.”
Kati said her family has resorted to motorized recre- ation.
Bud said fishing in their boat every week or so has been a nice alternative throughout the spring, although he claims Max likes riding the boat more than fishing.
“We go out on a lot of car rides to neighboring counties just to see them,” she said. “We went to the state farmer’s market, which is open, but it made us feel like we were breaking the rules. It was too much.”
If things get back to a normal way of life, some have indicated they’ll welcome that with open arms. Others, like the Blakes, admit they like the slower pace and focus on family. Still, some aren’t sure what to expect— or when to expect it.
Amy Taylor said she has experienced both the positive and negative effects of the pandemic.
“I struggle as a person who has a chronic illness because, if schools re-open in the fall but we’re still see- ing a lot of cases, do I let my children go back?” Kati asked.
Amy lives in Los Angeles with bipolar disorder, post- traumatic stress disorder (PTSD), obsessive-compulsive disorder (OCD) and attention-deficit/hyperactivity dis- order (ADHD). She said scenic drives around L.A., of all things, have given her some recreational satisfaction.
“That’s the million dollar question,” said Cindy, who also wasn’t sure about school for her daughter this fall.
She’s only lived in L.A. for six months, and she said she isolates often due to her disability.
But Cindy said amid the uncertainty, like others, she’s learned a lot about herself.
“The solace and relaxation I have found in going to the beach is absent these days with COVID-19,” Amy said. “It is actually stressful to go to the nearby parks. Every- one is wearing masks and it just seems tense as you con- stantly have to be aware of your surroundings. This has definitely impacted my leisure.”
“I have demonstrated to myself that I have the ability to keep going even when it seems impossible,” she said. “I hope these things can help us in the future.”
by Joshua Page
ABILITY 39