Chronic fatigue sufferer: 'Life was kicked out from under me like a skateboard'. February 2022.
James Strazza is an American independent music professional, musician and poet with very severe myalgic encephalomyelitis/chronic fatigue syndrome. Strazza developed CFS in 2008, which became severe in 2000. He has been totally bedbound for years and is cared for by his mother, Galen Warden. He published his first book of poetry, Lyrical, in 2020.
History[edit | edit source]
Strazza developed chronic fatigue syndrome after developing mononucleosis from the Epstein-Barr virus in 2008. He struggled to get a diagnosis and was advised to keep pushing through symptoms his symptoms, which resulted in his ME/CFS becoming very severe.
CFS symptoms[edit | edit source]
Strazza's neurological symptoms include severe photophobia, noise sensitivity, and allodynia and lives in almost total darkness, with noise canceling headphones and a minimum of touch to avoid increasing his waves of severe chronic pain. His noise intolerance has forced him to give up playing music.
I had a friend who became severe and he told me "James, this is the worst day of my life, and I can still get up to use the bathroom and use a wheelchair, how do you do it?" It puts you in a position where you feel like suicide is the only way out. Every day is the worst day of your life, and the scary part is it can always get worse.— James Strazza
Galen Warden, Strazza's mother and full-time carer states:
"It's like a frog being dropped in cold water and then you gradually raise the heat. At first these things didn't raise huge alarm," said Warden, 64. "There was nothing out there that talks about this, so we didn't have a reference of any kind. We kept telling him shake it off. You can do it. Exercise more." - Galen Warden
Advocacy[edit | edit source]
Strazza has featured in a number of interviews, raising awareness of ME/CFS and the lack of medical knowledge in particular. His songs from when he his ME/CFS was less severe, and his recent poetry raise awareness of what it is like for him.
Strazza is critical of the lack of funding for medical research into ME/CFS, and of the extremely low disability payments made in the United States to those have been ill since childhood, adolescence or as a young adult.
The second thing I want people to know is how little the government and medical industry cares for people with ME and chronic illness in general. It took me eight years and thousands of dollars to get a diagnosis. The dozens of doctors I saw in that time gave me advice that has ruined my life; I blame their ignorance for my severity that is potentially permanent. Most doctors don't know anything about ME, and the few who do think it's a psychological illness. It is unbelievably difficult to find help.— James Strazza
Talks and interviews[edit | edit source]
- Video: 2022, Chronic fatigue sufferer: 'Life was kicked out from under me like a skateboard' - Richard Burkhart
- For the last two years, musician James Strazza has been experiencing a debilitating form of chronic fatigue. Still, he says he tries to create beauty in the darkness.
- 2022, 'It has taken everything from me': Q&A with former NJ man with chronic fatigue syndrome - Gene Myers - NorthJersey.com
- 2022, Trapped in the dark: How chronic fatigue syndrome derailed a musician's life - Gene Myers - NorthJersey.com
- Aug 8, 2020, Let Us Honor the Most Severe in our Community Today! - MEAction
Books and music[edit | edit source]
- 2020, Lyrical: Poems that will blow you a kiss or punch you in the stomach.
- ISBN-10 [], ISBN-13 978-1735971803.
Online presence[edit | edit source]
See also[edit | edit source]
- Severe ME Awareness Day
- ME Awareness Day
- Severe and very severe ME
- Primer for family, friends and carer providers
Learn more[edit | edit source]
'It has taken everything from me': Q&A with former NJ man with chronic fatigue syndrome - Gene Myers - NorthJersey.com
References[edit | edit source]
- "James Strazza". Facebook. Retrieved June 12, 2022.
- Myers, Gene (February 6, 2022). "'It has taken everything from me': Q&A with former NJ man with chronic fatigue syndrome". North Jersey Media Group. Retrieved June 12, 2022.
- Burkhart, Richard (February 6, 2022). "Chronic fatigue sufferer: 'Life was kicked out from under me like a skateboard'". North Jersey Media Group. Retrieved June 12, 2022.
- Myers, Gene (February 6, 2022). "Trapped in the dark: How chronic fatigue syndrome derailed a NJ musician's life". North Jersey Media Group. Retrieved June 12, 2022.