Why has James been unable to get out of bed for three years? My goal is to help you believe what others call mythology.
ME/CFS is mystery beast until you have experienced its ravages firsthand. Unbelieved by most doctors, not taught in medical school, and unaccounted for in social programs or economic safety nets. Words fail. Descriptions could border on comical if you had never seen the evidence firsthand. This beast, with a crueler quality of life than cancer, MS or Parkinson's, has my son in its talons and won’t let him go.
There’s nothing wrong with his legs, and yet he can’t walk. There’s nothing wrong with his eyes, however, he lives in 24-hour darkness because he can’t tolerate light. There’s nothing wrong with his ears, but, unprotected, sound tortures him with pain in his brain, and once a loud sound gave him a 45-minute seizure.
I have six children — three girls and three boys. James is my youngest son, and he’s 34 as I write this. He has not left his bed for three years. In October of 2019, I brought him from Montclair, New Jersey to my home in Beaufort, South Carolina so that I could care for him 24 hours a day.
James was a healthy young man until he very slowly, because of medical ignorance and poor advice, became weaker and sicker following a severe case of the Epstein Barr Virus when he was just 19. After a few years, he slowly lost his ability to drive, to stand in his kitchen and prepare food for himself, then to walk more than a few steps, to use an electric wheelchair, and finally, to even sit up if carried onto a commode. He’s been 100% bed bound for three years.
He’s a musician who can’t hold a guitar; in fact, he can’t lift more than four ounces of water in a plastic cup. He can barely feed himself with a plastic fork. His electric bed tilts and reclines with a remote control. He can roll on his side, as long as his vertigo isn’t too bad. If he brings his bed up to too high of an angle, he crashes. That means he temporarily becomes even more weak. If it’s a bad crash, I’ll have to feed him, lift a straw to his mouth, scratch his face, and so on. as his hands lay powerless at his sides.
He wears noise-cancelling headphones all day, every day. His windows are covered with black plastic and he uses smart bulbs and an app on his phone to keep the lamps in his room red or amber and on their darkest setting. He wears a sleep mask if I have to turn the light on to care for him. He has not been able to look outside, to look up at the sky, in three years.
If I need to speak to him, I have to ask if it’s ok, then keep my sentences brief. No lists. No explanations or descriptions. Processing words hurts his brain as much as light and sound.
What is this bizarre disease that so many medical doctors prefer to pass off as psychological, psychosomatic or self-inflicted? Myalgic Encephalomyelitis was, in the past, known only as Chronic Fatigue Syndrome. An unfortunate name because it’s so easily dismissed as simple chronic fatigue, familiar to many with autoimmune diseases. ME/CFS is entirely different. It’s a disease not known, not taught, but not rare. Just rarely acknowledged, and more rarely understood.
Research has not been funded because its victims are invisible to society. They languish in their homes. They cannot fight for recognition or policy changes. Unable to work, they often suffer homelessness and hunger. They fade into our city sidewalks like camouflage. Our lack of care for these “lazy bums” is easily dismissed.
No matter how much the lucky ones are supported and cared for by family members, without clinical support from the medical community, or accommodations for their specific symptoms, they see no significant improvement. They flounder, tragically neglected as they suffer daily. Facing a life of friendless isolation, these once vital, active, successful people, when faced with total dependency and no hope for a cure, often die by suicide.
My son, although in the Very Severe category, is one of the lucky ones because he has the full support of his family.
I’m totally devoted to caring for him and keeping him from giving up, while also hunting down the support, symptom management, and any new treatment, even experimental, that might offer hope. It’s exhausting. I’ve sacrificed my own health, my career and the life I loved and all of my savings. I’m not the only parent capable of this commitment, but from what I see posted on Facebook and Instagram by people suffering with this disease, we are rare. Very rare.
ME appears to be a post-viral disease. The onset can be caused by Epstein Barr, Dengue Fever, Covid 19, and other viral illnesses. Now, research is so urgent because Long Covid is impacting thousands who are unaware of the potential that they could end up like James.
Post-viral Covid could easily continue to progress to Severe ME/CFS if patients are not aware of how to manage their overwhelming weakness and fatigue. They must rest and never push themselves. They need the early support of their families to pick up the burden of making meals, driving them, helping them rest as much as possible. Because, if they don’t allow them to rest now, caring for them will become a very heavy burden.
These patients, with their desperate families, their disbelieving caregivers and puzzled doctors, are why I’m compelled to add documenting our experience to my long list of weighty obligations.
While still caring for James I’m also dealing with my own chronic, systemic Sarcoidosis and my healthcare needs. But, knowing so many lives could be saved from this hell, I’m determined to push out our story like a seventh child.