Grammy-nominated singer shares rare update after being diagnosed with neurological disorder that left him unable to walk as he admits he’s in ‘state of repair and survival’ but is ‘starting to see the light’

Sufjan Stevens has shared a rare health update two years after he was diagnosed with Guillain-Barre Syndrome and left unable to walk.

The singer-songwriter, 49, revealed his diagnosis with the rare neurological disorder on his Instagram in September 2023, with a photo of him in a wheelchair in hospital.

At the time he told fans he was ‘working really hard to get back on my feet’, but it would take a lengthy healing period, preventing him from promoting his album, Javelin, which he dedicated to his partner Evans Richardson, who died in April that year.

After stepping away from the public eye while learning to walk again through physical therapy, Sufjan has now shared an update in a new interview with Vulture, where he assured fans: ‘I’m okay’.

However, the Grammy-nominated star emphasized that he was still not in a place to perform on stage anytime soon, saying he was ‘in a state of repair and survival’.

When asked about his current state, Sufjan said: ‘I’m okay. Situation normal, all up, kind of a thing. I’ve had some pretty difficult things happen to me, so I’m in a state of repair and survival. I’m not really in any state of mind or any position to go on tour yet.’

He went on: ‘But I’m starting to see the light. I’m starting to feel a sense of direction toward something meaningful and substantial. I’ve been focusing on the moment and on things that feel very silly and Zen: serenity and acceptance and duty and stewardship.’

The Oscar-nominee went on to explain how he had taken to doing ‘a lot of ordinary, mundane adulting’, such as home renovations, gardening and walking his dogs.

He said: ‘I’ve been working on other people’s music this past year, not my own. It feels like my life is in service to other things right now. It’s fine and required of me. I’m okay, I’m okay, I’m okay. It’s been two years of a s***show, but I’m okay.’

Sufjan is releasing the 10-year anniversary edition of his critically-acclaimed album Carrie & Lowell at the end of the month.

The LP is focused on the fallout of the death of his mother Carrie in 2012, and her mental health and drug issues, as well as Sufjan’s relationship with his stepfather Lowell Brams.

He reflected on the way that he tackles heavy topics such as grief and the way in which his music has continued to resonate with a lot of people.

Sufjan said: ‘To live is to be preoccupied with death. Maybe that’s why this material speaks to a lot of people. I’ve become the poster child of death in a lot of ways in the music world. It wasn’t intentional. It crept up, but it’s always been there.’

The artist previously detailed how he came to be diagnosed with Guillain-Barre Syndrome (GBS), recalling how he was left fighting for his life and numb in his arms and legs.

The rapidly progressive disease occurs when the body’s immune system attacks its nervous system, with recovery taking at least six to 12 months.

GBS can cause paralysis in the arms, legs or face, and excruciating pain through the entire body, while in severe cases, it causes life-threatening problems including breathing difficulties and blood clots.

Around one in 50,000 Britons and Americans develop GBS every year, and the condition kills around one in 20 people.

Sufjan penned a lengthy message to his fans in 2023, where he described suddenly being faced with the terrifying symptoms of GBS. 

He recalled: ‘Last month I woke up one morning and couldn’t walk. My hands, arms and legs were numb and tingling and I had no strength, no feeling, no mobility.

‘My brother drove me to the ER and after a series of tests—MRIs, EMGs, cat scans, X-rays, spinal taps (!), echo-cardiograms, etc.—the neurologists diagnosed me with an auto immune disorder called Guillain-Barre Syndrome.’

Remaining cautiously optimistic, the Call Me by Your Name composer spoke about beginning his process of recovery from the disease.

He wrote: ‘Luckily there’s treatment for this…very scary, but it worked. I spent about two weeks in Med/Surg, stuck in a bed, while my doctors did all the things to keep me alive and stabilize my condition. I owe them my life.

‘I am now undergoing intensive physical therapy/occupational therapy, strength building etc. to get my body back in shape and to learn to walk again. 

‘It’s a slow process, but they say I will “recover,” it just takes a lot of time. Most people who have GBS learn to walk again on their own within a year, so I am hopeful.

‘I’m only in my second week of rehab but it is going really well and I am working really hard to get back on my feet.’ 

‘I’m committed to getting better, I’m in good spirits, and I’m surrounded by a really great team. I want to be well! I’ll keep you posted as I progress. Thank you for your thoughts and prayers’.

The singer then sent a ‘huge shout out to all the incredible caretakers of the world working night and day to help us heal. They are living saints.’

Stevens concluded by writing: ‘Be well, be joyful, stay sane, stay safe. I love you. Yours truly from a wheelchair XOXOXO.’