Things we aren't supposed to say

[Gwenivere]

I had been feeling shut down for the last week after the 1 year anniversary.  Couldn't really feel anything.  I knew this was only an illusion and there was a fragility in it that would crumble it at some point.  This morning I woke up and I felt some feelings I hadn't in a long time.  I could not believe Steve was dead.  It was incomprehensible.  Every time I realized he was, my mind fought back saying this was not possible.  I bounced around to different places.  Years ago when we talked about it happening and I wouldn't accept it tho I knew it was coming.  How I felt when it actually did happen.  Days along the way since that I didn't want to believe it.  I've lived without him all this time and still want to think this is not real.  Then I jumped into anger.  A different kind I haven't heard much talk about.  Anger of all I want thru with him and what it did to our life and that this is what I am left with.  Pure pain.  I did everything to run this house and monitor his care and there is no 'reward'.  I had to attend to his physical needs and I hated it.  I hated being becoming a nurse.  I hated having to do laundry because of accidents.  I hated coming home to find him in crisis and taking him to the ER.  I hated when he stopped eating and became unable to think clearly because the cancer caused a dementia like state.  I hated that he would call me from the hospice (when it came to that) upset with me because he thought I was in the next room and ignoring him.  I hated becoming his advocate because he could no longer make decisions for himself.  I hate the chaos and unfinished projects he promised to clean up in the garage so I wouldn't be left with that mess. I hated he wasn't strong anymore and an equal partner.

But I did everything I did because I love him.  I went blind to the things I did because he needed me and I would never ever desert him for any reason.  Now that he is gone, these feelings that I could never express to people around us have to be expressed.  They are a part of me.  People want to see me as some kind of heroine over those long years.  I am not that.  They always say they don't know how I did it from the little they saw of what he battled.  He was very good at acting quite normal for them.  I was the one who saw the true devastation that was happening.  Sometimes I don't know how I did either. 

I am a just woman who deeply loved her man.  That was forged by all the years prior to the monster that entered uninvited.  That love will never change.  But I am tired of feeling smothered by not expressing resentment and anger at roles I had to take on.  It wasn't easy or fair.  They are like taboo thoughts because we are expected to say only good or noble things about our battle.  We lost the battle.  The feelings are more than the pain of losing our loves.  To fight so hard and be defeated is devastating.  We should have won for how hard we fought.  We couldn't even see the enemy.  It was inside his body.  The frustration of so long and hard a fight bringing this outcome enrages me. 

I want this to be some kind of sick or cruel, twisted joke.  But I know it is not.  I want him back and I know that is not possible.  And while I love him more than I ever imagined because of this, I want to tell him I am not happy our crushed plans have have humbled me to my knees without him and yes, I am angry about it.  But not at him.  I want to yell and scream with him by my side as he hated all this too.

i want a different ending.  One where he is still here.  One we look back on and say....we did it again, together.

[KATPILOT]

Sometimes you just have to let the anger out.  You have the right to be angry and holding it in or denying it just defers it till later. Yes that cancer was an unseen killer. In my case it didn't show outwardly at all. My wife looked and acted no differently than had she been perfectly healthy. That tumor was just doubling inside her thigh every two weeks. But cancer is rarely visible to outsiders unless you get the weight and hair loss from chemo. It's also funny how they can seem quite normal to outsiders for those few brief moments when they visit. You had to deal with all the continuing struggle and work so for that comes the right to be angry for Steve lost that battle and you are left with the consequences.  One day dear heart you will remember him with a smile on your face before the tear in your eye comes. Only time can do that for you and I wish it didn't have to be that way.

I grew to hate that disease as if it had a mind or a soul. I looked at that bastard mass on the MRI and I hated it as if it were a living person on trial for murder. Eventually I came to see it as it was. In those last few days when we knew we had lost the battle, Kathy just said "It is what it is". Now I have come to see it that way too. Small comfort for such pain but it's still the truth. It only took me four and a half years to get here.

During the stress and worry of that cancer battle, I lost it from fatigue. I hadn't slept for days and I said something I could NEVER TAKE BACK. I said "I just want to die!". Can you believe I could say such a thing in front of such a darling person who was fighting to stay alive?  Anger?  You bet I had it. I know she understood but damn me, she didn't need to hear that.  So I understand the anger and one day so shall you. We just can't rewrite the ending to this one.

[Margm]

I was frustrated with him for not fighting.  He held his palms up to me in submission and I did not want that.  I missed the chance to hold him while he passed away.  My anger is turned inward.  I have to fight to get that last look at him out of my head.  I cannot handle that.  I cannot.  I cannot.

[Guest]

Steve 

I know too well the guilt created by actions/words bubbling up from fatigue. On Deedo's last day in the apartment she spilled her Orgain on the floor. I cleaned it up and ten minutes later she spilled a second one on the carpet. I wasn't angry at her. I knew it was beyond her control but I let my frustration at life show to clearly. I never got the opportunity to know that she knew it wasn't her. I still feel like a heel. Just don't like the idea that she would go to the hospital and then to hospice feeling bad. 

[scba]

This is familiar to me too. I usually complained about the fact that my boyfriend was weak to take me out, but never to him, but to the universe, god, etc. How stupid I feel. I was healthy, what did I knew about sicknesses? After he died, I had a felling like it was me and his disease that stayed here. I felt as if she was inside of my body, which is impossible. She was the guest in our relationship and we fought so hard for a happy ending. A virus, an invisible thing, destroyed everything. Hard to accept

 

Edited November 7, 2015 by scba

[Gwenivere]

Fortunately, there was nothing said I regret.  What did become frustrating was when my irritation with what the disease was doing would make me cranky and short tempered.  Steve assumed (as anyone would) those feelings were directed at him.  With what little energy I was always dealing with, I would have to assure him it wasn't him.  As things got worse, this happened often.  The feelings of wanting to die came after he was gone.  Kat, I know you feel terrible about saying it, but I am guessing that your wife knew they came from thinking of life without her.  I shared some thoughts with Steve because I needed him to know that losing him would forever change my life and not  because of the toll of the care and crisis it created.  It was losing him that was paramount.  I do look at the disease as a murderer.  An insidious cold blooded killer.  I always will.  All of these things that have taken our partners are monsters with no other agenda than to kill their host.  People that did nothing to warrant it.  That is something that will anger me as long as I live.  It will be how I come to terms with this that will matter on the power it had and if I want it to have any more, which I don't. It won, but it could not stop the love.  There is a greater power in that.

[KATPILOT]

Yes, there is.