Let us honor the most severe in our community today, Severe ME Day, Saturday, August 8th.
Severe ME Day is a day of remembrance when we think of those whom we have lost to myalgic encephalomyelitis (ME), and focus on those living with severe ME. For those of you in our community who have severe ME, we love you and we are fighting with you.
August 8th was chosen to honor Sophia Mirza, a severe ME patient who died of the disease. Severe ME Awareness Day was started by the 25 Percent ME Group in 2013.
This week, #MEAction has been hosting a Severe ME Day Community Support Chat, join today if you haven’t already! We are also sharing a virtual choir (see full video below) to help raise awareness of the severity of this terrible illness. You’ll remember the virtual choir from #MillionsMissing which can also bring comfort and awareness today.
Poetry from a person living with Severe ME
Today, we would like to share with you a poem written by James Strazza. James dictated this poem over the course of two months, line-by-line using Siri because he was too sick to lift or look at his phone. He was in the worst crash of his life in May-June and that is when he dictated this poem.
Half a man by 25
Barely human by 32
The sight of me may well repel you
My dignity is shedding like the skin I’m too weak to wash
My heart is aching like the teeth I’m too weak to floss
Soup through a straw; I’m too weak to chew
Bloating and cramping; I’m too weak to poo
Two taps means yes when I’m too weak to speak
Leg muscles grow smaller week after week
Cover my ears, cover my eyes
The noise-floor of life is too much to bear
Even my thoughts, smallest in size
A whisper inside still raises my hair
Like cold wind blowing on a body with no skin
Where else is there to hide when I‘m all the way in?
Behind my eyes, seeking shelter in a void
Beyond where is taught by Jung or by Freud
No god or devil or lessons to be learned
No strength to be gained or prize to be earned
Is this death? I guess we will see
I thought life would be more romantic for me
I still want a wife and a house with a yard
And to teach my son how to play the guitar
To sing love songs to the woman of my dreams
But I’m shackled to a bed, too weak to scream
Too weak to grasp what’s left of my soul
To wrangle the fragments of what was once whole
Silent darkness, my only friend:
The living death of a fragile man
Please share this important art to raise awareness, show support, and help spread the word.
#MEAction organized another virtual choir, this time with a song from Kaeley Pruitt-Hamm & The Canary Collective titled “One-Sided Glass”.
Kaeley Pruitt-Hamm, about this song: “I don’t think that we are alone, as much as we think no, I don’t think that there’s no hope,” is the chorus sentiment to my song “One Sided Glass.” My bandmates and I wanted to express this more than ever during this global challenge of COVID19. I wrote this song years ago about my experience getting diagnosed with a disease (Myalgic Encephalomyelitis and Lyme Disease) that affects my immune system, nervous system, and lungs and becoming mostly bedridden from 2015-2019.
At first, I felt lonely and lacked hope. But then, through online and in person support groups, I started meeting so many other young people (especially women and gender non-conforming folks) who were also in the same boat, struggling to afford the medical treatment and grappling with what to do now that we could no longer work our jobs to pay those bills. I was stuck mostly in bed for years starting at age 25, which was so not my plan of how I thought my life was going to go. I tried to imagine singing little music notes of solidarity to my other friends who were also boxed in their own rooms, hoping they could feel that they’re so not alone, even if we couldn’t see each other. Even if we can only knock on the walls or pots and pans to let one another know we are there and rooting for one another, solidarity is a powerful medicine that includes a side effect of hope.
Now, with the COVID pandemic and so many more people experiencing what it’s like to be stuck in your bedroom for days on end, separated from loved ones, and unable to move forward with what we thought we had in store in our lives, this song takes on a new level of meaning. For months before the pandemic, Kerenza Peacock and Justine Brown and I had been playing music together in a band called “KPH & The Canary Collective,” which is a musical group that seeks to highlight voices of “canaries” at the forefront of human and environmental health epidemics.We had planned on filming this video outside together, but on March 16th, I had to flee to quarantine in the Joshua Tree desert where I wasn’t sharing space with any housemates due to the severity of my immunosuppression. That hasn’t stopped our community of “canaries” from sending medicine, messages of love and support, and musical collaborations, and I am so grateful.”
Thank you so much to KPH & The Canary Collective for this piece, and thank you to all of our singers! Choir: Lori Rillera Noa Sternberg Sumitra Phoenix Kaeley Pruitt-Hamm Marion Jager Alison Montalvo Darla Nagel Helene Emborg
Severe ME Day Community Support Chat
The #MEAction Severe ME Day Community Support Chat is still happening today on Telegram where people are invited to chat and connect with others. We’ve hosted many different types of support groups / get-togethers and at the suggestion of people with severe ME who use the app, we’re using a platform that’s more accessible to everyone with ME. Many people with severe ME can’t join by video or during a short scheduled window, so using Telegram offers a way for everyone to be able to participate fully.
We will keep fighting for equitable treatment and care so that severe ME is a thing of the past.