August 8 – International Severe ME day and my ME heroes

I’m fortunate enough that my ME is currently only in the ‘Moderate’ range, meaning I can stand up on my own most of the time. I do sometimes use a walking aide/wheelchair as a way to manage my energy levels and prevent further deterioration, but I can usually stand and walk without assistance. I have been bed bound and ‘severe’ at times, but so far I’ve managed to bounce back every time.

For approximately 25% of people diagnosed with ME, this would be a dream come true.

Imagine having an illness where maybe being able to work full-time with effort is considered “mild”. Credit: ME Awareness NZ.

I have a few ‘real life’ and online friends in the severe and very severe categories, and a few ‘celebrity’ People with ME who are also severely ill. I can’t begin to imagine the strength that their daily living requires.

Why August 8?

From the ME Awareness NZ Facebook page (why reinvent the wheel?):

“How did #SevereME Awareness Day come about?

It stemmed from the life and death of Sophia Mirza, her birthday was August 8th and she died at the age of 32 from complications of Severe ME back in 2005, and she was one of the first cases in the UK and the World where CFS (M.E.) was put as the cause of death on her death certificate.

This does not mean that she was one of the first in the world to die from Severe ME, only that in her case, it was actually recognized.

We Remember Her.
More about Sophia Mirza and others tragic cases from the Solve ME/CFS initiative:

“Sophia was bed-bound with severe ME and was a victim of medical abuse. Her doctors refused to believe that ME was a physical disease and so she was forcibly taken from her bed by social workers, police officers and doctors, and kept in a psychiatric facility where she received inappropriate treatment and care.

Accounts of Sophia’s treatment, by Criona Wilson (Sophia’s mother) are chilling.

In July, the professionals returned – as promised by the psychiatrist. The police “smashed the door down” and Sophia was taken to a locked room within a locked ward of the local mental hospital. Despite the fact that she was bed-bound, she reported that she did not receive even basic nursing care, where her temperature, pulse and blood pressure (which had been 80/60), were never taken.

Sophia told me that her bed was never made, that she was never washed, her pressure areas were never attended to and her room and bathroom were not cleaned. The nurse asked me to cook for Sophia as the processed hospital food made Sophia more ill. Sophia also had to deal with all the nurses constantly going into her room and talking to her.

Sophia subsequently died of ME at the age of 32. Her post-mortem revealed widespread inflammation in the spinal cord (ganglionitis).”

Sophia was effectively tortured to death by medical professionals charged with her care. She is not alone. These practices continue still, with some countries going so far as institutionalising anyone diagnosed with ME and forcing them to move and eat and function like healthy individuals regardless of the pain and damage that causes.

What does Severe ME awareness mean to me?

Beyond remembering those who died, and showed the medical community that this is a real illness:

First up, it means remembering to check in on my bed bound friends, if I can. Most can’t handle visitors and some are geographically distant from me, but a message via Facebook or text is usually well received when they feel well enough to be able to read it.

It also means reminding myself of my own limits. I have done well to keep my status quo over the last few years, but pushing too hard could cause permanent damage to my system and cause my health to deteriorate. Self care is not negotiable.

It means remembering that ME comes in many shapes and sizes. I started very sick, got much better. Then slowly declined back to severely ill, then gently climbed back to moderate. Others started well, then developed mild symptoms and slowly deteriorated to very severe. Still others started well then one day woke up severely ill and never improved.

I got lucky.

It also means thinking about my ME heroes, especially Whitney Dafoe, and listening to the playlist he made for us, his imagined* ME community.

Whitney was an active and vibrant young man. The artist son of one of the most influential and important biological scientists of our time, Ron Davis, former head of the human genome project. When Whitney got sick, and received his ME diagnosis, his father was shocked at how little was known about this illness. Ron now devotes his life and skills to finding a treatment or cure that might help his son.

Whitney is my hero, not because of his father; Ron is a hero in his own right. Whitney is a hero because of the strength he brings to his isolated and pain filled life. Because even in his daily struggle in the prison of a deteriorating body, he still cares so much about those of us on the “outside.”

His father tells a story about Whitney’s determination to survive (I can’t find a link to anything specifically about this, it’s in various longer talks or articles though). Whitney had lost many of his virtual friends, fellow ME sufferers, to suicide. This prompted him to tell his father that no matter how sick he gets, and no matter how much he may want it to stop, he will not do the same. Why? For people like me. He said he wants to stay alive to show us how strong we are; to show us it can be done. [9 August, Edit: or you can read Whitney’s own words of encouragement that he shared for 8/8/19]. When my illness gets too much and I feel like dying, I think about him and this promise to us** and I tell myself “you have to do it for him. He’s doing it for you.” And it helps me carry on.

Jennifer Brae wrote about meeting Whitney here. You can see how hard his existence is.

Yet he still think and cares about us. Recently he used the precious few hours of slight activity and laborious communication that he gets once every few months creating and send a message to us, through music. This message was months in the planning and making. He created a playlist about ME, for people with ME, and to help those around us to understand. Jennifer Brae carried the message for him in her blog piece and shared it on YouTube. I got 2 lines into the first song and was weeping with the perfection of the story he was telling, and the hope he still holds. Waiting for Superman (“my dad is superman” he said) has been stuck in my head all day.

His playlist can be found here. Don’t watch the videos. Just close your eyes and listen to the poetry. Feel the music and the experience the story. Think about how his playlist came about when the man behind it has been unable to listen to music for years due to the pain that sensory stulimulus causes him.

Finally, and so very importantly, Severe ME awareness means listening to and really hearing the other voices of those who have Severe ME.

Here are some links to some of those voices…

Memoirs of an ME goddess. Bernice was in the NZ Army band with my father in law. Now she’s doing well if she can stand, let alone march or play brass instruments.

Jennifer Brae’s blog

Unrest, Jennifer Brae’s documentary about ME and the millions missing.

Dr Speedy – a doctor with severe ME. Mostly recent posts are about the research, including a lot of information about PACE and why it’s a terrible thing.

Jay Tay – she got sick around the same time as me, but has had it far worse. She was a teenager when she developed ME and has been blogging for about 4 years about her life with severe ME.

How to get on – a fun and cheerful site by multiple authors all navigating ‘The System’ in the US with ME. It gives practical advice as well as telling their stories.

Richard Smallfield – art, writing, poetry. He wrote many poems and a few memoirs while severely ill. Richard is in my local ME support group on facebook.

* A sociological term often used to describe groups such as fandoms. It means a community in which one does not have to physically meet, and where most members are unknown to eachother, but are connected in some way (e.g. via mailing lists, newsletters, and now internet).

** I also think about my husband and do it for him too.


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