I am trying to fully quantify all that being sick has taken away from me. The progressive downward movement has been much like losing my balance on steps covered in ice as I claw at the air in a desperate attempt to catch myself. I am unable to finish college. I am unable to have a career. I am not capable of working in any degree. The dreams of what I wanted to do with my life have been smashed. I cannot get married, and I most certainly do not have the strength it takes to raise children. I am increasingly unable to take care of the trailer I rent. I am supposed to mow the grass but I dont have the strength and it makes me horribly sick faster than you can snap your fingers. If I cant take care of the property I will lose my home. But if I try to take care of the property I will lose my ability to care for myself. I can no longer eat most food, everything that I try my body ends up rejecting. I have lost over forty pounds since December without trying and have dropped from a size 14 to a size 4. My ability to communicate is slipping away. I have optic atrophy. I struggle to stand and breath and I am in the process of buying a wheelchair. Sitting up causes worsening pain.
I have had many things taken away.
But I still have the ability to speak in freedom, no matter how garbled and incoherent, no matter how slurred, never mind my shrinking vocabulary. And for that, I am grateful. Because I have lost so much, it makes this choice all the more precious. It isnt just about opinion and speaking my mind, but also about being counted. It is about that ever growing monster called invisibility which all of us know so well.
I have precious little to hold on to, and it would devastate me if someone who actually knew what it was like to become invisible, and knew the pain and despair of this illness, was to take away some of my hope. That is the essence of cruelty.
We are all grasping at maintaining some semblance of control in our lives, but allowing it to spill over and poison a place of hope, and even going so far as to bar people for various periods of time due, at the root, to power struggles, is despicable.
I have had many things taken away.
But I still have the ability to speak in freedom, no matter how garbled and incoherent, no matter how slurred, never mind my shrinking vocabulary. And for that, I am grateful. Because I have lost so much, it makes this choice all the more precious. It isnt just about opinion and speaking my mind, but also about being counted. It is about that ever growing monster called invisibility which all of us know so well.
I have precious little to hold on to, and it would devastate me if someone who actually knew what it was like to become invisible, and knew the pain and despair of this illness, was to take away some of my hope. That is the essence of cruelty.
We are all grasping at maintaining some semblance of control in our lives, but allowing it to spill over and poison a place of hope, and even going so far as to bar people for various periods of time due, at the root, to power struggles, is despicable.