Anxiety, like fog, closes in
suffocates, I gasp, fight for air –
this disease so pervasive, lungs
spasm, panic multiplies; help!
Tests, drugs – all speculative,
experimental – symptoms persist
absent treatment protocols, a cure;
so much ignorance, uncertainty
Lie down, they say, refer me
to psychology as if immobility
and exhaustion are tricks of mind,
an overactive emotional imagination.
I am sentenced to seclusion, sensory
deprivation, muscles, nerves, immunity
all defunct, cells failing to produce energy –
a lifeless, inert blob, cognition failing.
But I am not alone; millions of others,
also missing, untreated, abandoned –
but not giving up – Can you hear us?
grief oozing from our pours, unwilling
to be further shamed into silence –
our suffering may be invisible, our
voices weak, but the warriors among us
are beginning to speak – please listen!
(ME/CFS is a debilitating disease that affects millions worldwide. Absence of funding restricts much needed research. Not enough is known about this disease to help the many bedridden or homebound. It affects people of all ages, including children. In Canada, there are no treatment options, and often medical personnel are not educated about the disease, which can lead to harmful interventions.
Jennifer Brea has become the voice of ME/CFS due to her recent documentary, Unrest. She can also be found on TedTalks, discussing the implications of having a disease not recognized in medical circles. Unrest is an awarding winning documentary that sheds light on this disease. It is apparently being shown on PBS Monday, January 8th. It’s also available through iTunes.
Please watch. If you or a loved one suffers from this disease, or any other mystery illness, the film may just trigger new understanding. If you are a medical professional who has not heard of the disease, the documentary is very informative.)