Just getting around to reposting this from Facebook. Also, my blog (such as it is) is still here!!! And I got into it! Hi!
I had the great fortune and shame to be busy enough to forget that today (technically yesterday) August 8 was Severe ME Remembrance day.
To quote one of my dearest friends: “This day is necessary because we are suffering greatly, dying, often forgotten even by the medical establishment, and we have no chance of getting better without social, medical, and scientific understanding and help. We need you to know that we exist.”
I have friends on the verge of death and others whose suffering is so great it is impossible to believe that they are not. You will never see them. They’re tucked away in darkness and silence at home.
For years I met the criterion for Severe. I still meet it on bad days/weeks.
BUT
I am outside every day. (Almost) I’m under a pile of eye masks and sunglasses and two pair of earplugs (huge thanks to Dylan Burns for that tip back at Reed). But I am outside all day until cold or mosquitoes drive me in.
Today I floated in a pool. I walked from room to room, without stopping. I packed a few things and rode in a car across town (more blindfolds, earplugs and drugs. Tomorrow will be ugly. )
I’m always one screw up away from Severe. Many of us are. And I never know if this is the time I stay there. For a week after an MRI in June I was curled up in the dark hallway outside the bathroom in an eye mask, unable to converse beyond “yes” and “no”. I couldn’t look at my phone. I spent many days that month and some of July in darkened rooms, closets and earplugs.
For most people the sun is something that just happens. For others it is something they can only dream of. I have been both of these people. Every day in the sun I am
awestruck.
