A response to my 'feeling navy blue'

and in that same breath I can tell you that you are a child of God who was created to bring joy and laughter into this world. You are a creative genius of not only the written word, but your mastery of color and design on canvas expresses to the universe a part of Eric for all to see.

worthy of this world, I should say so...! Your contribution as a friend and confidant cannot be replaced by anyone. Your humor and wit, in times of sorrow and dispair, are priceless. Your laughter infectious.

your willingness to see the beauty in all that's ugly is the eye of a master.

do not sell yourself short.

do not let those around you take your soul away from you before God does. YELL if you have to and make them hear you.

They WILL miss you and when you're gone they will have so much guilt. and I only pray that you leave a note that cuts them to the bone so they know that it was THEY who killed you, not your illness.

IF I could take your illness away, you know I would in a second. but I can't. I can only offer you my love and support. and I hope you know that even as your heart aches I AM with you...!

You're never alone.

Your Soul Sister

feeling 'navy blue'

Now, I have so very little to say and feel my once energized external self withering away, internally soaking up all the good I have to give and the laughter I have to share. And I still love and hope for there truly is nothing left so even the hope is false and the love is tainted. Somewhere so very deep I have buried that piece that was my identity, that person I called eric and now, I smile and I laugh but it is not the same and often forced. I move about in circles only to end up in the same spot that I began hours and sometimes a day ago. I wear a mask of a thousand faces so as to not have to view my own and accept me as reality for I am embarrassed and ashamed that my life has so little meaning and I have seen before my eyes so little use of me or any part thereof in the lives of another.

And as fearful, with acceptance about death I am even more fearful about life for living

Stopped

Days ago…

And my heart broke and my dreams faded and my tears dried

Leaving what is left

Hollow and unfortunately, me.

And sometimes (most times) when I cannot tolerate the pain any longer I punish myself even more by refusing to take my medicine for now I believe that I am not worthy of comfort and certainly no afterlife for as I look at this one, I shutter and my heart stops momentarily as I see the waste of space I claim as my own, the same space that contains me and everything I am, failure. So I bathe with oatmeal soap knowing that the rashes of my skin irritate more but not being able to stand the sight I only hope that the scales of skin become clumps and I wash down a drain of scalded water and melt away slowly so that every piece of my being has to feel the torment, the ugliness, the simple waste that I have become and like I have been told, probably am.

hospice case 9277467

I had an interesting conversation with a hospice nurse today, who informed me that she wanted to be my nurse of record, but was refraining due to her having spent time with me and feeling that she could not provide me with adequate care, not from a clinical standpoint, but from that of one who has already, in a short period of time, become close to my spirit. She had already become attached and was not doing well with my upcoming loss of life. The fear she spoke of, real. Her apologies she made, accepted as truth.

Her truthfulness made me smile and I was honored by her ability to not only share what she was feeling but express how she was feeling in the same conversation.

I am also grateful to know that she is not too far from my case management and overseas my medical care from a distance that allows her to research and then suggest proper care when I am spoken of in a team meeting. By taking the emotion out of the equation, which I am assured, does not go away, she has a better understanding of what is going on and I can convey, as only one person can, how I am feeling so that others are able to understand partially, but never fully, what I am experiencing, strictly from a symptoms standpoint and feel the need to provide me with good care.

I understand that hospice is about comfort and I further understand hospice that I have dealt with is a bit taken back by my youth, my own medical knowledge and my willingness to share completely and fully who and what I am. The thought that I know I am terminal and I am young complicates an already demanding and often draining line of work, the work of comforting medically, the actively dying.

The fact that my youth takes much of what has been book taught and reviewed and even witnessed over the years as something untaught and unseen and thus, makes a worker's experience less important and their ability to accept and embrace a disease, almost, as I do more important.

The ability for anyone to love as your own is quite challenging when one knows that the end result is going to be the final chapter, in this case, my life.

tuesday 26.09

Today,

The days of wishing my own wellness have shifted to hours and sometimes within those hours it is minutes as I watch time go by too slow for my liking, when feeling the despair of nausea and hearing the rumbling from within, often louder than thunder in a storm.

The topical compounds that are placed directly over the veins I see through my skin and applied just like an aloe plant fascinate me only from the standpoint that the medicines 'soak' into my capalaries and travel, the idea to create an environment of less stress on my damaged organs. My stomach is getting a well deserved and probably needed break from having to digest what has now amounted to a double digit number of pills that are taken, sometimes hourly, just for the purpose of basic survival.

My taste for fine and good food has definitely shifted from pleasure to terrifying ritual as cuisine that once I craved now turns my insides upside down at the mere thought of ingestion.

I am tired physically and mentally less alert and it is obvious as I drag from room to room, still preferring to stay inward and aware than share with the masses that ask me, almost systematically, how I am feeling. Often I hesitate with an answer as that too changes frequently and the lack of balance is one that frustrates me and my medical team as well. Comfort at a satisfying level is not being achieved and possibly, is limited as the damage continues to throw me in a spiral, faster and more powerful than I last remember writing.

My conviction remains guarded but strong. My vision is hopeful and my plight is that of the falcon, knowing I too will soar some-day.