Re: Talking about sarc .....from S.

[Guest guest]

Tracie, You did what was in your heart to do and God bless you for it! I wish more people were like that. It might just be that generation who is almost too private and doesn't talk much about personal feelings and such. The generation of today is a bit too open!.....lol. Our generation still remembers the denial of that older generation. You did what you could so shake it off and continue doing what comes into your heart to do. My hubby's dad doesn't even like to be hugged. He's very closed up and stubborn...but I figure 'why rock the boat'.... so i go with the flow with him.

Hubby's mom loves hugs so I double up with her!.....lol. You have a lot of love to share but we can't make people receive it. Maybe he will hear you came over and just be blessed deep inside knowing you cared enough to do that. I would if someone came to visit though i might be too sick to receive them. If it still bothers you after a few days maybe you could send a letter. And pray it gets read to him!.... I guess when it comes down to it we have to respect how other people choose to live. I pray that somehow he realizes how much you love and care for him. hugs S. 29:11, For I know the plans I have for you,"

declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. "If anyone would come after Me, he must deny himself" ( 16:24 NIV).Subject: Talking about sarcTo: Neurosarcoidosis Date: Monday, January 5, 2009, 7:10 AM Last Tuesday I found out that an uncle of mine who had been treated for esophageal cancer had come out of remission and the cancer

is back-- and there is nothing they can do for him. It is too far advanced and now has spread throughout his body-- so it's "terminal."

Yesterday, I decided to drive over to his home-- a 45 min drive one way-- which we all know is alot for those of us with advanced sarc, hoping to at least be able to share my love and if necessary, say my good-byes.

I didn't call first, so they did not know I was coming. I knew I'd not get past his wife if I did call, so I took my chances. Well, I got there at 1pm-- and his wife had just put him down for a nap. (He's 77, so this struck me as somewhat funny.) She came out just as I was changing my oxygen tank and getting ready to go to their door. It was time to take the garbage out.

She greated me in the driveway, and told me that she'd just put him down, and that he didn't really want to see anyone. Ok-- I can kind of understand. She also told me that they "don't talk about his cancer" so that any conversations had to be about "happy and good" things.

I said ok, and asked when he'd be up from his nap, thinking maybe I'd go up to the casino for an hour or so, or up to another aunt and uncles house. It was going to be "awhile." Ok, I can understand that.

So-- I had to go pee, and asked to use the bathroom. She let me in to a toilet off the back door-- and I was told not to go into the house-- ok, I didn't want to wake him.

I met her back outside, it was a beautiful day-- sunshine and fairly warm-- and she was busy sweeping the 3 leaves that had blown over from the neighbors yard to her driveway. Obviously, no strays allowed. She dismissed me and said goodbye, I'll tell him you came by. So-- I had driven 45 min for a 5 min conversation on proper protocol if I dared to come back.

I left, went up the road a couple of miles and stopped by the other families home, and no one was there-- so that was fine, I decided to not push it, and came back home.

What struck me was not that I couldn't get past the "gate-keeper", but that so much of the last few years in therapy has been me trying to learn to "talk " about my disease with those I love. This was the mirror of my childhood that said "You can't discuss anything that isn't pleasant, good or happy." For me, it was always that "big girls don't cry and if you're going to cry-- go to your room where no one has to hear you." Well, gang, it took a wonderful therapist and 7 years for me to learn to cry-- and it still is one of the greatest challenges I have-- I don't want anyone to see me cry.

As I looked at the mirror from my childhood-- (my aunt) I immediately went back to the place of such mixed emotions-- do I grieve the loss I know is coming- the one where my uncle (who is my birthday twin-- he's 25 yrs older to the day) or do I grieve the loss of that part of myself I know is coming-- my independence of being able to drive somewhere to see someone i love-- and be shut out, or do I think happy thoughts and remember happy times and hide from my broken heart that wants to share a journey that isn't easy-- for anyone.

I didn't want to sit and make him discuss his deepest feelings and fears about what is to come-- I just wanted to make sure that I tell him "I love you" before I stand at his graveside, wishing I could say that face to face.

I wanted to share with him that his great-nephew (my son) has taken up hunting deer and ducks and pheasants this year-- and yep, it took him 25 years to start what they all grew up doing just to put food on the table, and laugh with him as I tell him about our yellow lab getting so excited because she got to go hunting also this last week, and flushed a pheasant up from some brush, only to have it fly into a tree that was fallen over and the high point was only 10 ft up in the air-- and she climbed that tree to get that pheasant (it was obviously wounded previously) and ends up getting stuck in the tree and my son has to climb up, get her down out of the tree, knock the pheasant out of the tree and ring it's neck to that it was not suffering-- and the dog is so proud of his catch-- (she has a bad knee and can't go hunting much anymore) but she did it!!

My uncle would have loved the story, and been able to share a million like it-- and I'd probably been sent home with one of my grandfathers shotguns and fishing rods and decoys and a heritage that is precious. You see, my grandfather never bought meat from a store until he was in his 60's and had a stroke that paralyzed him-- and my uncles grew up by his side-- hunting and fishing and providing for their families-- and all the holidays were always goose and pheasants and deer or elk-- and that was my childhood memories.

But we can't get past the gatekeeper, and we can't discuss the realness of what is happening to us. We keep that door shut, and it still surprised my aunt when I told her I understood that we wouldn't talk about his diagnosis-- because you see, I am living with the same diagnosis for the last 8 yrs, and they figured I'd only get 5-7 years-- so I'm in overtime.

More important is that we need to talk about what our diagnosis. We need to share that we are truly scared, that we need to cry, that we need to not walk this journey alone because we think that someone will be offended if we talk about the "diagnosis."

Most of us look at death as not being the end-- but the beginning of a new and healthy life. Yet we are so afraid of death. Personnally, it's not death I fear-- but the dying. I want it all to be dignified-- I don't want to lose the use of my legs, or deal with incontinence and diapers and wheelchairs and being bedbound. I worry about these issues as they take a toll on my family members and how they'll deal with it all. That's the biggie-- I can handle these things, I think. But can they? Will they?

What if we tell our spouse that these things are scaring us, and that we're worried for them. What if they say I can't handle it and I'm outta here. What if?

Well, what if? If we keep this door closed, we are shutting them off and away from having a most intimate relationship with us-- one that can bring us closer together- maybe. Some days it may bring us closer, adn then the next day we can't look each other in the eye. It will be part of the cycle-- so what if??

What if we become vulnerable and share our grief? I'm not sure if I should be offended by my interaction with the gatekeeper, or if I should love her -- and her quirkyness- and I'm doing both-- but it saddens me to think that a moment of opportunity may have passed-- and I don't know when or if I'll have the energy to call first, try to set up a time to see my uncle or whatever.

Please, share your insights and let me know - us know how you deal with these issues. I'm at a loss.

My heart to all,

Tracie

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