Unplanned Journey

Illness, especially having a severely disabled, mentally retarded child is an unplanned journey. Add fibromyalgia to the mix and things get really tough.

Suffering puts spiritual people into kind of a bind. All those people who think God makes you suffer in order to make you better should be aware that suffering tends to make people bitter rather than better....therefore they should stop blaming God for putting suffering on people to chastise them. And in my case they really have to stop saying stuff like God gave you this disabled child. There is evil in the world, demonic evil, world evil, greed, human evil...and human mistakes and accidents. That’s what causes sick children. Not God’s great mercy.

It is very hard to describe what my life is like...and unless you have an autistic kid you may not really get it. But I will describe my house right now. About ten of the windows are broken (because son threw something at them and broke them and we had no money to fix them.) The bathroom door is kicked in and has a big whole in the bottom panel (because son is often in such daily intense pain that no one can figure out.) All the kitchen cupboards are broken because son kicked them in or broke them. We have been using a burner because the gas pipe broke four years ago and cost $2100 to fix it but we were so busy with family medical bills – and my inability to work cause I’m so sleepless– that we couldn’t fix it. The used car family bought six months ago and got a $5000 loan for is a lemon and doesn’t work. The house is a total mess because I get into long stretches of sleeplessness that I am in so much pain I can’t work... plus when I manage to fall asleep around four in the morning after being awake all night ...son comes to my bed greeting me with his crying and dragging me out of bed to get him ready for school. And folks, that is just a small portion of the stuff that has been continually happening for the past 18-20 years. The worst of it is when one sees one’s son suffering because of some pain and one has no way of knowing how to fix this sickly whining kid. That’s what hurts most of all.

Imagine all this and then some atheist telling you that trusting in God is a crutch. Or imagine annoying Christian person coming to one’s house and saying one has no faith, or one gets too testy. (Of course I’m testy! I’m in pain, you idiot! I’ve been in unbearable pain for twenty and I’ve watched my son be in unbearable pain for 18 years. Yes, I can have a nasty personality and please don’t tell me that if you were in the same position you would be oh so much more pleasant than I am.) And honestly, if I were as testy as this particular Christian says I am, I wouldn’t be the one that so many people call up to get comfort from. I’m rather nice, actually. And if someone has a terrible headache I never get into comparative mode and think, “Oh gee! This person doesn’t know suffering.” I am genuinely kind to all. And, unlike know-it-all atheists and know-it-all Christians, I tend to steer away from judging people. Unless I'm in so much pain I just lose all patience.

And yet... I have to confess that I do find a kind of impatience coming into my life toward those who are healthy and who have money and who nevertheless whine. It’s as if I’ve gone through so much crap that I have lost my ability to commiserate with certain kinds of people: namely the healthy, the rich, etc. So this suffering business has really affected me by making me bitter and actually has me falling into the category of someone who judges another person's pain. When I see some middle-class woman talking about her sorrows about “getting old” I find myself looking at her without any mercy whatsoever. Not good. In my mind I think, “Woman, getting old is normal, WTF is your problem? There are people starving in Africa! There’s a global food crisis? Heck, I spent the last three months eating beans and stuff from the pantry and seeing my son go to the fridge and find nothing....(because of older son’s speeding tickets and him turning 21 and the IRS dependents issue.) And you are f*cking talking about how sad it was to have lines on your face!” This is not good at all. As a Christian we are supposed to love everyone, even those who are rich and healthy. As a poor person we are not supposed to judge wealthy people. As a sick person, we are supposed to love health.

I also find myself despairing when I see healthy starlets in good shape running across my tv screen. I wish I were as healthy as they are. I bewail my lost youth and my lost beauty. I wish that I too could dance and sing and play volleyball.

C S Lewis said that Greed is the sin of the rich and envy is the sin of the poor. I've been thinking about that quote since I began working on my new novel. Like Wind Follower it's against imperialism. But unlike Wind Follower, it's not about loving God but about loving one's neighbor as one's self.

As a Christian I MUST learn to love what I do not have. If I get annoyed at some airhead movie starlet's health, how can I draw it to me? I am hating a thing and saying such a twit doesn't deserve such health (and such big bucks) while I and my son DESERVE them. And yet, as a Christian, it's not a matter of deserving, is it? If I judge someone as not deserving...and if I say that good things should only go to those who are deserving....then I myself must be deserving. And no human is deserving of anything, really. We are all sinners, all evil really. No matter how good my atheist friend thinks she is. (Yep, she actually told me she thought she was a good person. I didn't say anything. The world thinks that way because they don't get into the kinds of morbid introspection religious people get into. And they have entirely different standards. But I digress.)

So anyway, I am trying not to hate wealth...trying not to feel that only those who are worthy of it should get it. Because the world treats us in the way we demand that it treats others. And if I have some inner vow that states "good must only come to those who deserve it" and if I dislike those who "don't deserve iot" then I have put deserving into the mix and have forgotten that God is gracious and loving to all...despite their worth and deserving.

One of my favorite Bible verses is "The race is not to the swift nor bread to the wise nor wealth to the brilliant nor favor to men of understanding." Ecclesiastes 9:11 I know many Christians who use this verse to talk about how unfair life is and how bad it is that life is unfair. But we must consider that life's unfairness often works for us. I have a sweet husband that I truly don't deserve. And I have lovely friends who honestly should have friends lovelier than I am. I am not particularly brilliant but my book got published. I am not particularly smart and yet I have had jobs -- through the grace of God-- that smarter people should have gotten. So I am glad about life's unfairness.

Ane yet, the gospel was preached to the poor for a specific reason. Illness causes poverty. Poverty compounds illness. So I believe in the power of the gospel to remove illness and to make rich...or at least to push starving away.

Anyway, I was in quite a state a few days back. Back in the day I would ponder suicide and wish that both my son and I would die so we could be free from our illness, but God gave me a vision of hell (not a nice place!) And a vision of hope and miracle...and for the past ten years I’ve been searching and growing in my faith.

Two nights ago, after three days of total sleeplessness and with my son developing some weird new symptoms that frightened me. (I don’t know if you understand what it’s like to go to bed for 18 years worrying that your son will die in his sleep...in addition to sleeplessness and pain.) So I was sooo depressed.

Then God gave me this dream.


I dreamt of walking across a field and I saw a road ahead that was beside the field. I was pushing a very heavy cart. It was a very dark night and at the edge of the corner of the field were oxen and lions but I couldn't really see clearly. I wanted to get to the road but it was so dark and I didn't want to accidentally walk on a lion and get eaten. Although the lions were quiet.

I heard the voice of a little girl I know. She's about 5 and her name is Daniella. Her parents go to my church which is an evangelical hispanic church. She saw me coming and she knew it was too dark for me to see. She said, "Caro!" She couldn't pronounce my name right...and in real life she doesn't pronounce it well cause she has baby talk plus she's hispanic. She said, "Here is my hand! Touch it and I'll lead you." I still couldn't see her, but I followed her voice. And in the darkness I took her tiny little hands. And she kept comforting me and saying, "Don't worry, Caro. I'm with you." I looked at the sky. It was so dark, but as we walked up the road which was walking up a hill, the burden I was pushing got less heavy and the sky became brighter.

I woke up crying and cried and cried for two hours after that. But it wasn't as if I was crying. It was as if the tears were flowing out of me. At last I felt the holy spirit saying, "Carole it's a consolation dream. Don't worry." I feel the dream is saying that I should become like a little child and put my trust in God and put my hand in God's hand.

There is a motto for the Episcopalian Mission Society: "And I said to the man who stood at the gate of the year, 'Give me a light that I may tread safely into the unknown.' And he said to me, 'Go out into the darkness and place your hand into the hand of God. That will be to thee better than light and safer than a known way.'"

So, a little child shall lead. And Except we become as children we cannot enter the kingdom of God. Or have it work through us. That's what we're all here to do...whatever unplanned journey we find ourselves on. Let the kingdom of God work through us, and put our hand into God's hand as he leads us. -C