These two go hand in hand, in more ways than the obvious. Yes eventually every person with ALS succumbs to loosing their ability to speak. So how is silence in other ways associated with ALS?
Nowadays patient voices are being heard globally due to technology and social media platforms. However in the past patient voices were lost the moment their ability to speak was gone. Their story fell “silent”, their families unaware of the soul shattering silence and hopelessness felt. Hidden behind eyes that observed everything and a mind comprehending all.
ALS is bereft with silence, from patients and families that won’t discuss it. There are many who quietly and privately disappear from life, it is their right to do so. Then there is the deafening silence from the FDA on treatments. Oh that’s right they spoke very clearly when they disapproved two promising treatments.
ALS patients, families and advocates are now breaking the silence. A rising chorus can be heard as it crescendos; it will only be silenced by a cure.
Listen, behind our eyes is our story, can you hear it in our silenced voices.