Man with rare autoimmune disease says making music lifts his spirit up
CBC
A man who was diagnosed with a debilitating condition and lost the ability to use his hands and legs, was back performing music on stage in Edmonton recently.
"With this condition, I know it's bringing me down, but I'm going to keep pushing and keep trying to get stronger and try to get better," said Nathan Steinhauer, who is from Saddle Lake Cree Nation, about 130 kilometres northeast of Edmonton.
Steinhauer, 46, was diagnosed with a rare disease called chronic inflammatory demyelinating polyradiculoneuropathy (CIDP) In April 2020. It's an autoimmune disease that attacks the myelin sheath of nerves, causing weakness, paralysis and/or impairment in motor function, especially of the arms and legs.
"It's one of those conditions that could literally wipe out a person," he said.
"And when I first got it, I was so frustrated. I was getting mad because I couldn't do the stuff that I used to do."
Steinhauer has been in a wheelchair since and can no longer play the bass, rhythm guitar or drums — talents he picked up at an early age.
"When I listen to music … it gives me energy and gives me the will to keep going," he said.
After he was diagnosed with CIDP, he moved from Saddle Lake to Edmonton so he could do physiotherapy at Glenrose Rehabilitation Centre.
That's where he was introduced to musician Matt Day, the facilitator of the centre's Music Care program, which incorporates music into recreational therapy.
"If somebody was musical, he would come and visit them and even [perform] just a little simple jam with them," said Steinhauer.
Steinhauer said he bonded with Day through the program and enjoyed jamming with him.
They recorded some songs together in the hospital and Steinhauer gained enough confidence to get back on stage in September for his first live performance since being diagnosed with CIPD, performing in front of friends and family at Julian's Piano Bar in Edmonton.
"When I sing, it lifts my spirit up. So that's why I keep going with it," said Steinhauer.
"I notice when you have a high spirit, it helps with healing. So that's why I do it."
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