The Dark and Silent Abyss

How do you care for someone when light and sound cause pain?

This week’s post comes from Galen Warden, whose adult son, James, has Very Severe ME. Like many with ME, he suffers from hypersensitivity to light and sound, adding to the challenges he and his mother face navigating his care.

Whilst they live in the States, their experience is shared by so many here in the UK caring for loved ones, including Karen and Emma. Her account makes clear the difficulties providing appropriate care for people with Severe ME and how the illness can affect everything. What follows is an abridged excerpt from Chapter 7, ‘The Dark and Silent Abyss’, of her forthcoming book.

Galen with James, 2024. Photo by Richard Burkhart. Adjusted for light. Source: Galen Warden.

A hostage hidden from light 

One of the worst neurological symptoms people with Severe and Very Severe ME experience is extreme oversensitivity to stimuli, such as light, sound, communication, scents and touch. 

Before he became one hundred percent bedridden, James had already become oversensitive to light and sound. I had covered his windows with black plastic. But during the evening I would pull the light-blocking curtains back and un-tape the plastic, gifting him a few dark tree branches bobbing in the breeze and a star or two blinking behind them. 

Eventually the moonlight was too much. The plastic stayed taped shut, urgently adjusted to prevent even a crack of light invading. Navy blue blackout curtains remained closed for their aesthetic value alone. 

I had to keep all the blinds closed and the lights low in the living room and dining areas to prevent too much light from entering James’s room when I opened his door to enter. A dark, rolled-up towel prevented any errant light, sunny or incandescent, from sneaking in under his door when it was shut. 

James could tolerate a tiny bit of light to see where his bed remote and phone were. The two bulbs in his room are independently controlled by an app on his phone. He set them to red, the easiest colour on his brain, and 10% brightness, the most he could tolerate and still see around his bed. His sheets and blankets were all dark grey, since any colourful or bright fabrics assaulted his nervous system. He’d raise the bulbs to 15% when I came in the room to feed him since, at this point, he could no longer lift his arms. A soft light he could turn on underneath his electric bed also helped me navigate his room. 

2022. Photo adjusted for light. Source: Galen Warden.

No context

When my stepmother, Jamie, became non-verbal with stage four Alzheimer’s, I could still cheerfully speak to her as much as I wanted. I never stopped being able to play music, open the blinds, push her into the sunshine in a wheelchair. At the very end she was bedridden completely with around-the-clock care, so for a very short time before we lost her, she was pretty high maintenance. But my own behaviour around her was never restricted. My daughter Heather had suffered a severe traumatic brain injury. My son Tim had survived life-threatening central nervous system vasculitis. All three of these were neurological conditions that I had experience with, yet I had no context for the unprecedented, extreme neurological suffering caused by severe ME, which required so many limitations on my own behaviour.

A new language called silence 

James could speak quietly. But processing words I said required cognitive processing and caused sharp, stabbing pain in his brain. He later described it as the feeling that his entire brain was being bruised, constantly, when anyone spoke to him, forcing him to think about their words. 

When I had to communicate with him, fewer words were better. He wanted to use questions to help me communicate, but this was fraught with issues. A potential minefield. I was only allowed to say “Yes” or “No” in response to his questions. But his questions were usually open-ended and required more words than Yes or No for an accurate answer. 

This new language of silence was very awkward to learn. We don’t realise how much we speak when interacting with others. One of the hardest habits to break was narrating my actions. 

“Here’s a new napkin.” 

“This cup looks empty, I’m going to take it.” 

“I’m putting these pills right here in case you can take them.”

 I had to unlearn a lifetime of narrating. 

Biting my tongue became my new response to any urge to speak in his presence. Seeing James wince in pain was enough of a deterrent. He was already trapped in bed, already denied every pleasure of life. Adding pain, preventable pain, was not an option. I learned a new language: I learned Silence. Not saying, “I love you,” was the most loving thing I could do for him

Even with noise-cancelling Bose headphones on, and foam earplugs under the headphones, routine noises in my kitchen were too much. My new, modified behaviour included making any food preparation noises in my bedroom. I used the smoothie maker, tore aluminium foil, whisked, and chopped… in my bedroom at the opposite end of the house with my door shut. It sounds extreme—I’m aware— but I had to protect his brain and, from the kitchen, those caused brain pain.

Communicating pain 

James tried so hard to help me understand his pain, what his body and brain felt like, and what he needed. But without the ability to have a conversation, or the strength to gesture, to emphasise, he had to find a way to express the sensations that neither of us had ever experienced in our lives. Neither of us had a reference for what he was going through, and he could not tolerate probing questions.

The most important, most urgent, message he conveyed, and continued to express every day for more than a year, was that he was suffering. Even with all the protections I could muster, even with all the love I could give, nothing I could do — or not do — relieved the suffering in his brain enough to allow him to ever feel comfortable. The sensation he expressed was that all of his cells were dying.

Like everyone I’ve come to know with severe ME, James had been a self motivated, inspired, independent workaholic who was never bored, and never inactive until he became ill. 

James plays guitar, 2016. Source: Galen Warden.

The extremes of behaviour required to care for a loved one with Severe and Very Severe ME are extraordinary.  I have accepted my son’s medical condition and love my boy unconditionally. Support from my community has helped me find ways to make caregiving sustainable, even when faced with daily routines that can be difficult to comprehend.

Thank you so much to Galen and James for sharing this with us. Learn more about Galen and James at galenwarden.com/about