Tuesday, October 23, 2012

What is grief....

What is grief? The dictionary says that grief is keen mental suffering or distress over affliction or loss. Grief is different for each person but for people in situations similar to mine, grief is an impossibly soul splitting, painful exercise in futility. The man I married is gone. My Ron started to die slowly after the first set of strokes. SO my grief is more complicated since I am unable to go through the grief process because technically Ron is still here. He is in the next room and I can't go to him and ask for a birthday hug, or just to hold me. I can't move on either because even though my Ron is gone, my heart didn't get the memo. Ron is my soulmate and has had a strong grip on my entire heart and soul for a very long time. I wouldn't have that part any other way.  In November we have been together for 15 years, and in January we have been married for 12. I got my epic love story. I am eternally grateful that he was given to me when we were so young, and I needed him so badly. He literally saved my life. I was in a very dark place when we met. He did everything in his power to show me the light and he did. He taught me what unconditional love truly meant. 

I have been asked on many occasions why I am not just happy that he is alive. Well, the answer to that is simple, watching him suffer almost daily is brutal. Each and every day I look for my Ron because each day I wake up and for just a moment I forget about the past 5 years. Just for that brief moment I have my fairy tale back. Then it hits me and he is gone again. People tell me a lot he doesn't LOOK sick but they don't witness when he has trouble finding the words or forgets to eat or the sleepless nights when his brain cannot figure out how to process an emotion. I try to filter things before the information gets to him, break it down into bits he can process but that isn't always the case. 

My goal each day is to try to make our sucky situation suck less so it doesn't upset him. He hates who has become and misses his old life. He loved being a firefighter. He loved our large group of friends and our active life. He misses the same thing I do..even if his memories have holes..He misses what we were before. I have noticed that I use that word a lot while telling stories... defining our lives to before he got sick. 

I try to go back and read the older posts on this blog, but I just can't seem to get past the first few sentences. I guess that means this will be raw for longer than I anticipated. I am grateful the memories and emotions are usually fleeting for him because this daily overflow of memories and pain is a lot for anyone to bear. I don't say that looking for pity for myself because there are people WAY worse than the hand we were dealt. If I am looking for silver linings, Ron not being able to "feel" much is definitely a lining of some sort. I am going to include a song that tells exactly how I feel about Ron. It was popular when he was hospitalized one of the first times. Read the lyrics with my story in mind, you will understand. And just like I always end these..for the ones who ask me what they can do for me..CHERISH EVERY SINGLE MOMENT BECAUSE YOU NEVER KNOW WHEN EVERYTHING COULD CHANGE IN AN INSTANT.


I wanted you to know I love the way you laugh
I wanna hold you high and steal your pain away
I keep your photograph, I know it serves me well
I wanna hold you high and steal your pain

'Cause I'm broken when I'm lonesome
And I don't feel right when you're gone away

You're gone away
You don't feel me here anymore

The worst is over now and we can breathe again
I wanna hold you high, you steal my pain away
There's so much left to learn, and no one left to fight
I wanna hold you high and steal your pain

'Cause I'm broken when I'm open
And I don't feel like I am strong enough
'Cause I'm broken when I'm lonesome
And I don't feel right when you're gone away

You're gone away
You don't feel me here anymore


Beautiful Mess said...

Insightful, painful, beautiful and real!

Thank you for sharing.

Amanda said...

Thank you for reading!

Disability Debacle said...

hi amanda!
I told you im always reading (smile) I appreciate your blog post, many times at my darkest hour I read your posts, because your someone I know is experiencing the same emotions.

today my youngest turned 1 yr old. And I am contemplating leaving my husband who has cnsv. I myself am having to endure some serious verbal, mental, and emotional abuse daily.

Because of the changes in his brain, I am starting to think he could be bi-polar. I know I said for better or worse, but this CNSV is a understatement.

I physically cannot go on with the abuse, especially from somenone who needs so much help with the smallest of things.

From me reading it seems as though cnsv has different levels of exacerbation, because my husband still trys to work, but has issues with recalling immediate events.

Its just all too much. To have a shell of the person you love. I miss soooooo many things about my husband, and like his "friends" who left long ago would say. This is ambigious loss.

"Hes not the same anymore"

And to add to it, now verbally abusive.

I am looking for my own place, and intend to leave for my own sanity. I have two children who are hearing & seeing a demonic spirit daily it seems.

I miss my old life & hate what we have become. I have to find myself so I can be a parent to my children.
CNSV takes so much,

only someone with a ill spouse of CNSV can understand what your going through.

Its similar to a traumatic brain injury, you just get such a different person afterwards.

You know on last week after all the doc appts, meetings, surguries, I asked my husband if he was happily married, and he replied... Im married.

It makes me think you know since you have such a different person, maybe they are different people now. ..... I know I am ranting, but it feels good to talk with you Amanda because I know you are in my shoes. God bless you sister =)

Amanda said...

Jean I just saw your response. Email me if you get this. thecatlady0107@live.com