August 8th, 2018: Understanding and Remembrance Day for Severe ME

Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.

Can you read these words I’ve written on this page? Good. Then you know that I am NOT an example of the extremely ill with ME/CFS. Because if I were, you wouldn’t see or hear me. I’d be behind a closed door in my bed, trying to block out any sound or light.

Even if you were in the same house with such a person you might not see or hear them. They are likely busy focusing on breathing in and out. You’d be surprised how much work that can be when you’re this ill. They are trying to live through the next second, minute, hour … day … year … It takes everything they’ve got.

I have never been this sick, more fortunate for me. But don’t kid yourself. There are so many of these invalids holding on to the shreds and threads of survival. In fact, 25% of those with ME/CFS suffer from its most severe forms. Some are able to depend on a caregiver. Many more are on their own, toughing it out.

Sophia Mirza had severe ME/CFS and died in 2005 when she was only 32 years old. Her birthday, August 8, was chosen as Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance by the 25% ME Group in 2013. On this day we honor Sophia and those others with ME/CFS who live alone in darkened and unnaturally quiet isolation.

Sophia’s story does not have a happy ending. She was removed by force from her home by doctors, social workers and the police. She was held against her will in a psychiatric facility, the victim of inappropriate treatment which only made her sicker. When Sophia died, her post-mortem pointed to widespread spinal cord inflammation.

Sophia’s story can be seen in the film “Voices from the Shadows.”

It may be hard to believe, but Sophia’s mistreatment was not a unique set of circumstances. An untold number of people ill with ME/CFS experience obstacles, ignorance and coercion every day. They are vulnerable and can’t protect themselves. Even those who are not being persecuted are living a half-life at best.

Here are just a few of the things that many of our severely ill don’t have access to:

No visits with friends, or phone conversations. These communications that are so desperately needed to counter the isolation and loneliness are too often more than our severely ill can handle without a crash and setbacks that can last weeks, month, even years.

No dental or medical care. Maybe they can’t brush their own teeth … or have anyone else to do it for them. No doctor visits. And who makes house calls anymore? While there are a very few of these stalwarts, there aren’t nearly enough for our severely ill.

Ironically, the absence of doctor visits may at times actually be a mixed blessing … or curse? And that’s because many of the ME community are often not treated well, and are sometimes even abused, by the medical community.

I am not one of the severely ill segment, but I personally have been mistreated, insulted and dismissed by doctors who used to be courteous, even friendly. But when they couldn’t help me, and didn’t want to go to any kind of effort to learn how to help me, things turned ugly.

Even after my family doctor retired four or five years ago, and I moved on to a kinder doctor, I feel wary and tense at the idea of making an appointment for anything.

Any idea how long you can go without food? Hopefully you’ve never had to go down that road. But some of these dear souls have more than a passing familiarity. Some of them are starving.

Think about it. If you can’t get out of bed, if you don’t have someone who comes in to care for you, if you don’t have any money … Just because most of us find this impossible to imagine, doesn’t mean it doesn’t happen every day all day, to people who are least able to withstand it. If you have no help and no resources, you do without. That is the answer to too many of the challenges that face the severely ill.

And then there’s the group who can afford some groceries but are so burdened with dietary issues that they’re malnourished and sickened by some of the foods they eat. And each of them are on their own trying to work out what they can tolerate. This is just one of the many aspects of life that suffer because of the shocking lack of research and information available.

So sick people are making themselves sicker eating foods that may fuel their disease and undermine their health. And yet those folks are more fortunate than many others who don’t have money for food, or a way to get food into their homes.

It’s summer where I live, so my thoughts turn toward some of the things many healthy people take for granted this time of year:

The severely ill are not going on vacations. And if they could … what would look different? Trade one set of walls and bed sheets for another? And that’s if they are able to tolerate sheets. Some can’t.

There are no summer treats. No walks on the beach. For many, walking is not even a possibility. No quick trips for ice cream or browsing through yard sales. (No money, no mobility, and will their bodies even tolerate ice cream?) No sitting on the patio or tending flowers.

Picnicking? Don’t be silly.

Don’t be misled by the fact that some in the ME/CFS ranks are able to work, or have family support, or on some form of assistance. They may be able to carry on a conversation with the occasional visitor or do their own shopping. Yet even these are living with limitations that the average person would be shocked by. But compared to our most severely ill this ME/CFS echelon is hale and hearty. Superman and Wonder Woman by comparison.

It ain’t easy being this invisible. When your life is on fire and in ruins you want someone to know about it, to be shocked by it, to be stirred to some kind of action.

So please, think of us and our severely ill on August 8th. Better yet, think of us every day. If you know someone, especially among the 25% who is so extremely ill, do what you can. Offer practical help and emotional support in whatever form is possible. You will be filling a very big empty space for someone who is fragile and precious.

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