The Total Grief Rant......(not a quilt in sight)

Easter 2015
My love was dead a week later..
I am struggling.

In these pictures, he is totally paralyzed but his right hand and his face.
 His neck is in a brace.
He has a feeding tube with Morphine and Ativan and food.
His skin is itchy.  He has a catheter.
He is wearing Depends. His limbs have to be massaged and stretched.
 He is prone to blood clots.
He is freezing in the hot Easter sun.
His diaphragm is impaired leaving his breathing weak, his voice is a whisper,
his swallowing is difficult

His mind is clear.
I love him and I am helpless.

ALS/ Lou Gehrig's Disease/ Motor Neuron Disease/ Hell

Watching someone you love go down paralyzed with this disease,
 is almost too much to bear.
No one wants to hear that the grief struggle still sucker punches you a year later.
No one wants to hear the grief and anger and betrayal..
Folks want you to pretend to be ok.  It is far more comfy for all.
Suck it up, pretend, be positive.. You are so strong!.

But, the healing is really in the talking.
Thank God, I have a few friends who are able to listen to my pain.
They know that the suggestion box is full.

I understand folks are busy with their own lives....good friends drift off into acquaintances..
More abandonment..
I understand that we are all alone.
I feel like going back to M&Ms and red wine.
I feel despair.