Angry

[kayc]

Oh Bob, My heart goes out to you. I have tears welling up even now as I write...you are right, your dear wife suffered so much...I don't claim to have any answers. I had hoped to express to you that my views are not meaningless jargon given to me by a church for me to spout to people...I have seen too much of that too in my life, but my relationship and love with God is real, not merely a made up crutch for me to rely upon. If it were all a facade, something not real, just words given to me to use, I would not want that. I note that you are very sincere and I respect that. I only pray that God can somehow undo some of the damage that's inside of you and show you some love and cut you some slack for once in your life, that's all. In the meanwhile, I know He does understand all of your feelings and can take your anger.

I do not try to persuade you of anything...I myself do not feel it is our right to persuade others, but rather to just live our lives in a caring way...if someone derives anything positive from our lives, then that is good. I hate it when people have an agenda to convert others as if by manipulation, and then if they do not respond, they drop them...how caring and real is that? I guess that's one reason I've pulled back from church. When I met John, he was the one who was there for me, night after night, listening to me, spending time with me, not people from the church. When he was going through tremendously hard places in his life and could use a prayer or a word of encouragement, my church was not forthcoming with it. When we married, I took them a wedding announcement and picture of us and they did not display it or offer their congratulations. What has all of that spoke to him? When he was a child he had a yo-yo at church...the minister went to his family's home and told his mom not to bring him back...he hasn't been back in church since except to attend a wedding with me. I understand how he feels. Right now we live 3 1/2 hours away from each other because of our jobs and can only see each other on weekends...the church would have me leave him at home for hours and go to church, even though he travels a great distance to be with me and even though we have very little time together. I disagree with them. I attend in the evenings sometimes as time permits and don't worry about what everyone else thinks. My life is different from their's...I've spent my life working in churches and I have to wonder now if my priorities were backwards. I am not opposed to church, but I don't give them the place they feel they'd like either. I refuse to be anyone's puppet or let anyone control me and they don't seem to like that too well. So I let them go and live my life as I see best. I do consult God, I ask His advice, His help, but I think God and the church do not equate the same. I know one thing, I will be there for my friends in their time of need...will the church? Some may, some may not. So I understand much of your feelings. And I too went through a being angry at God stage, but I also came out on the other side eventually and have made my peace with Him about His decisions. I thought it interesting when you stated that no one consults you about what happens...that is so true...I know when I lost George, I felt like my power had been ripped away from me. After all, no one asked me what I wanted, no one asked me if I wanted my marriage "ended" (as the social security office put it), no one asked me if I wanted to be single, face life alone, or live in abject poverty. I have done what I could to regain my sense of power, things like walking have helped.

[DesertBob]

Kay,

I had to chuckle when you said "walking helps". One of my friends lost his wife suddenly to a cerebral hemorrhage a few years ago and he gave me two pieces of advice: (1) don't make any important or major decisions for at least a year and (2) walk it off.

I have been walking like a madman. It is even the correct metaphor, where I live: wandering in the desert! The only thing missing is the diet of insects and honey!

I do understand the distinction between religion and personal faith. Actually neither Linda nor I were regular church-goers any time recently for very practical reasons. In Linda's case she had no control over the waxing and waning of symptoms which could change from day to day. Fifteen years ago there were days she could go out and do things, but it was impossible to reliably keep commitments / appointments. She had to roll with the punches.

In a local church, or in any other social situation, such as having friends, you must participate, but if you're chronically ill, you mostly can't. People don't understand this. They will swear on a stack of Bibles that they understand and care, but in their own daily lives they do what I'm doing today: they make an appointment to go to lunch with friends and then just show up for the appointment three weeks later, 99 times out of 100. If you keep re-scheduling they just get annoyed, if not offended. It sends an "I don't care" message and any reason you give is seen as a poor excuse. You can't blame them, in a way. People are just operating on a set of assumptions that mostly work for them. I wish they would examine those assumptions, however.

In church you are an automatic third-class citizen if you aren't "involved". Again, people will swear up and down that this isn't so, while acting otherwise. The last time we approached a church, around '96 or so, we got a stack of invitations to this or that study or prayer group, this or that cell meeting, this or that counseling session or lay ministry training. Our declines, and our explanations, were met with confusion and dismay. Bottom line, we had nothing to offer them so they dropped us like a hot potato.

So we decided to quit while we were behind. I think the best you can hope for if you are seriously ill is a church that is large and anonymous where you can attend services or not and few will notice or care, although that defeats much of the purpose and isn't much different from turning on the radio and attending "Beside Baptist". Either that, or a church with some kind of "shut-in" ministry -- but those tend to be geared towards the elderly and if you aren't in a wheelchair and on oxygen I think they figure you are just taking advantage of them. And of course in the later years most anyone who would visit our home would have to be stopped at the door because they were full of perfume or cologne or were wearing a suit that had been to the dry cleaners. People don't understand THAT problem either. They take it personally. It's not like I was making a face and saying, "ewww, you STINK!" but it was the same effect. In our society you are supposed to shut up about stuff like that and let people do what they want. Anything else is a slap in the face.

There were a handful of people who understood or at least humored us, but they were very much the exception. Like the couple who lives next door to us would phone to warn us when they were going to grille something on their patio, to make sure we were indoors and our windows closed and our air scrubbers up and running. Such little gestures were few and far between, though.

At any rate I think you have your priorities straight. When we "forsook the assembling of ourselves together", the sky did not fall, we did not develop an evil cackle, our moral convictions didn't change. We actually had more time for reflection and thoughtful living, so I like to think that we became better rather than worse in that regard.

In any given church there are sometimes a few people who are truly spiritual and loving. People somehow know who to contact when they need loving support and encouragement and good advice. It usually isn't the pastor. It usually isn't anyone who gets paid to do it or has a degree in it. My wife's mother and aunt serve that office in the otherwise moribund little Methodist church up in the small Michigan town where they live. I had to laugh because between them and the audio / visual guy in that church they put on a memorial service for Linda that would have been suitable for someone like Princess Diana. They did her proud. But the minister got her token speech full of empty platitudes that everyone slept through.

I have no quarrel with church, but little respect for it compared to the actual people of faith that are salted here and there amongst the bleating sheep. Alas, even those people can do little for you in a pinch except love you through it. But at least there's that.

--Bob

[Corinne]

Bob,

My heart is just breaking for you and the loss of your Linda. I too know what you are speaking about with the church experiences. When Jimmy was alive we were very active in our church and Jimmy was a great provider. We gave a lot to the church and their special projects, but when Jimmy died it is amazing how quickly I became a nobody to them. It made me feel like they tolerated my presence because of Jimmy and then when he passed I was no longer important. I felt like I had been living in his shadow. It is funny how I just said I had been living in his shadow because that is what one his doctors used to call me, because no matter where Jimmy was I was there whether it be an appt. or if he was in the hospital and I was sleeping on the chair along side him. Anyway back on the subject, after he died I did leave the church and God probably because I was so mad at the teachings(or should I say misleadings), they always taught the good things about walking with God but never prepared you for the bad things that happen. As I had said in a previous post I am now finding my way back to God with full knowledge of the good and the bad. I do not go to a church at the present and am not looking right now, who knows maybe someday but right now I still have that bad taste for church.

Hugs & prayers,

Corinne

P.S.

Yes, walking does help and my big black lab likes it too.

[DesertBob]

Corinne,

Yes that is one of my core issues with organized religion. It is, I think, a willfully ignorant attempt to build an ivory tower where all is sweetness and light, that excludes those who are not willing to dismiss whatever struggles they may have with unexamined stock rationalizations. Underlying it all is a core belief that is seldom articulated or admitted to, but ever-present: God's children are favored sons, and those who suffer, somehow or other, have their own selves to blame for it.

I have a friend right now who is going down the same rabbit-hole as Linda was with environmental illness / multiple chemical sensitivity, except that her family refuses to be supportive and thinks she's nuts. She sleeps outdoors, in 100 degree plus heat, because they will not be inconvenienced with any of the avoidance protocols, even the simple ones. That is bad enough, but her charismatic / fundamentalist sister and brother in law tell her that she needs to "be stronger", and that she needs to go to church, needs to be "baptized in the Holy Spirit", etc. In other words she is sick because she doesn't follow their particular doctrine, and because she just won't buck up.

I will find my own way back to God, eventually, and probably over many dead bodies of people like that, but it really shouldn't be this hard [sigh].

--Bob

After [Jimmy] died I did leave the church and God probably because I was so mad at the teachings(or should I say misleadings), they always taught the good things about walking with God but never prepared you for the bad things that happen.

[Corinne]

Bob,

I am sorry your friend is now going through the illness she is. I also feel sorry for her family being fed all the nonsense that everything is "perfect" when God is in your life (unfortunately for them it sounds like they will have to find out the hard way). Nothing in this world is "perfect", I believe everything will be perfect in heaven but definitely not here.

Another thing I find amazing is that people do not realize all the horrible chemicals that we are being exposed to in our every day lives and the damage they are causing our bodies. Why does everything have to be so artificial. You know it is pathetic when they put artificial sweetners in childrens medicine(Is the amount of natural sweetners going to add 20 pounds to a child in the few doses they need?) This is another one of those subjects that I could go on and on about so I will end it here.

Know that you are in my thoughts and prayers.

Hugs & prayers,

Corinne

[DesertBob]

Well, Corinne, you are preaching to the choir when you talk to me about chemicals. The worst of it is that since the 1930's we've introduced literally hundreds of thousands of chemicals into the environment and virtually none have ever been studied for toxicity in the combinations they're commonly used in actual products. We are nowhere near as safe as we want to think.

Currently, depending on whose numbers you believe, 7 to 15 percent of the population has been diagnosed with one or more chemical sensitivities (as distinct from allergies, which is a whole other animal). Relatively few of those have MCS, and mercifully few of those are universal reactors like Linda, but mark my words we'll be seeing a lot more of them in the next few years.

I am and will continue to live chemical / fragrance free and eat quality organic foods. There is no way to totally avoid everything that might be dangerous, but there are a lot of practical things you can do to improve your chances for continued good health over the long haul.

--Bob

Another thing I find amazing is that people do not realize all the horrible chemicals that we are being exposed to in our every day lives and the damage they are causing our bodies.