Friday, April 26, 2013

Tell Me What You Know About God

Or what you believe.  Or think.  Or understand to be true.  Or wonder.

And then I'll tell you what I know and we'll both be better for it.

If I tell you what I know, and it's different from what you know, will you take offense?  Will it cause bad feelings between us?  Will you feel judged by me?  Will you feel superior to me?

If I tell you what I know, and you are unsure about God, will it make you feel insecure?  Will you feel like I'm trying to convert you?  Will you feel like I'm trying to tell you what to believe?

If you tell me what you know, will it be because you want to convert me?  Will it be because you feel it's your duty?  Will it be because you have truth that I should have?  Will it be because you care for me?  Will it be to condemn me?

If I tell you what I know about God, will it make you uncomfortable?

If you tell me what you know about God, will you try to use it to control me?

I'm fascinated by the beliefs of others.  My faith (the faith within me, not my church) brings me so much joy.  I wish everyone could experience it.  But I don't believe my faith is the only way to find joy.  I believe truth brings joy.  I believe there is a lot of truth out there that I don't know yet.

I've spent my whole life surrounded by people who were almost all members of the same church as me.  I used to think that meant we all had the same perception and understanding of God.  As I've grown I've learned this is not at all true.  There are some general things most of us believe, but there are also differences.  We know different things.

Because you can study and research and ponder every word that has ever been written about God and not know Him as well as a little girl who prays when she is scared.  This little girl who feels something outside of herself that makes her feel safe.  This little girl who feels a strength beyond her own.  If all you do is read and study and ponder, she will know more about God than you do.  Because she will know God.

Maybe you've felt something, sensed something, been aware of something beyond what you can explain.  Maybe you aren't ready to call that God.  Or maybe you call it something else.  I'd love to hear your story.

Or maybe you've never had a sense of anything beyond this world and think others are deceiving themselves.  That it's a happy fairy tale we use to make this world a little less scary.  I'd love to hear your story, too.

A few simple truths I know about God.  My truth.  (People say truth is truth and we can't have different truths, but I don't believe that.  Because our truth isn't just about what is true.  Our truth is also based on who we are and how we can receive it and process it.)

God is aware of each of us individually.  He was once like us.  He experienced mortal life on a world like ours.  He is now God because of the way He lived that life.  He earned it.  He is the Father of our spirits.  He has a physical body but not like ours.  His body is perfected.  And as His children, we have the potential to become like Him.  To do wonderful things after this life.  And hard things, too.  To continue to grow and progress and become.

As our Father, He hurts with us.  He allows difficult things to happen but almost never causes them.  He knows the best us we can be.  He knows hard things are how we get there.  He knows we are strengthened by the resistance of trials.

He knows me.  My life is better when I turn to Him and let Him guide me.  He does not control or force.  If we want Him to be a part of our lives, we have to choose to invite Him.  He waits for that invitation and it brings Him joy to answer it.  We are His purpose.

These are some of my truths about God.  As I grow and learn and experience some of them might change.  Some of my truths will be expanded upon.  I might see others from a different angle.  And some of them may no longer be my truths.  It will be fun to see.

Now I've told you some of what I know about God.  All those questions I asked in the beginning, I'm asking again.  Do you feel threatened by my truths?  Do you feel judged by my truths?  Do you feel superior to me because of my truths?  Do my truths align with yours or challenge yours?

I would love it if you'd share some of your truths with me.  Or just thoughts or feelings or questions.  Questions we can ponder together.  Tell me what you know about God.

**********
I welcome all opinions and viewpoints, but if you are unkind or abusive or disrespectful I will delete your comment.

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Friday, April 19, 2013

Balance is a Myth

My daughter's Chiari 1 Malformation repair surgery went well (decompression and duraplasty).  The doctor didn't have to remove any of her brain.  Thank you to all who offered prayers and support in our behalf.

It took longer than expected because she has an extra thick skull.  (The doctor said it was about three times as thick as most, and if he'd had to remove any more he'd have had to get a new saw because he burned through the one he was using.)  He removed a piece of her skull.  He removed the back half of her first vertebrae and shaved off part of the second.  He opened up the dura (the covering of the brain) to make more room and patched it with a piece of her scalp.  She goes back next week to have the staples removed and make sure everything's healing well.

She's still quite medicated, so it's tough to tell if any of her symptoms are better.

Three long days in the hospital with her were exhausting.  I was sleep deprived when we got there and it only got worse.  I tried to take care of myself while taking care of her.  I ate some.  Slept some.  Neither enough.  Because she was my top priority.  She needed me there in order to feel safe.  She was scared.

Since we've come home it's been better.  She's slept more.  I've slept more.  I'm keeping her on a strict medication schedule to stay ahead of the pain -- absolutely no waiting until it hurts.  As soon as she can take more meds, I give them to her.  It won't be this way for long.  I will start to stretch it out when I think she's ready.  But right now she needs to be able to relax a little and sleep so she can heal.

I am sleeping on a mattress on the floor of her bedroom at night.  There was an oxygenation issue in the hospital that's got her a bit paranoid.  Having me there to make sure she's breathing lets her relax.  It's a small price to pay.

While I was at the hospital with her those three days, my oldest daughter played mom at home.  She got people up and off to school.  She kept track of people.  She ran things.  All while finishing up classes and studying for finals.  She was a life saver for me and now has a better understanding of how hard it is to be a mom -- I understand there were some tears.  (Don't ask where my husband was.  We had a fight that started while my daughter was in surgery and continued throughout the day, both of us sleep deprived and stressed.  He was not in a good place those three days.)

Since we've been home, my daughter's ex-boyfriend-but-still-best-friend has spent most of the daytime sitting with her in her room, running errands for her and/or me, and giving me a chance to rest.  This would have been incredibly difficult without him.

And I have had to give up a lot of things.  I've let a lot of things slide.

All of that brings us to my point.  Balance is a myth.  Life isn't about making everything we want fit into a tiny space of time and energy.  Life is about deciding what's most important and choosing that.  Life is about letting go of things that don't matter to focus on things that do.

I wanted to be at my oldest daughter's concert, but I was needed at my other daughter's bedside.  I wanted to go to a discussion on literature of world religions, but needed to take care of myself.

There was a time in my life when I would have demanded it of myself to keep doing all I was already doing and find a way to squeeze this in there, too.  Luckily, I'm wiser than that now.  I know that's not healthy and not something to strive for or admire.

My priorities right now are my daughter, my health, and the other people in my life.  The house will wait.  There will be other fun opportunities.  And anything that really needs to get done can be farmed out.

Life is about seasons.  We do one thing for a while, at the proper season.  As the seasons change, we need to be willing to change with them.  We need to find the beauty in each season and not feel like a failure because we leave the other season behind.  We need to be willing to let a season go when it's time to move on.

This is my season to take care of my daughter and help her heal.  And it's the perfect season for me at just this moment.

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Monday, April 15, 2013

My Daughter's Brain Surgery

It's a strange thing to be sitting in a waiting room, kind of bored, knowing my daughter is just down the hall with someone cutting open her skull and possibly removing parts of her brain. 

This man that we met once.  Talked to for fifteen minutes.  Holds my daughter's life quite literally in his hands.

The last three weeks, since her diagnosis, have seemed like a year.  It's taken forever.  Mostly because all we had was a diagnosis, no information specific to her case.  Then, last Thursday we finally met with the neurosurgeon.  We learned what her situation was.  We learned his plans.  We scheduled the surgery for the soonest possible date.  The last four days have flown by and dragged.  You wouldn't think they could do both, but they did.

And now we are here.

Pre-op was a bit tense.  Knowing it was just around the corner.  Sam was quite anxious, which added to my anxiety.  Then pre-op was done and we waited.  It was about an hour and a half of waiting after pre-op was done.  We got bored again. 

Then someone walked in, told her it was time to go, and the fear returned.

And they took my baby away.  Nineteen or not, she's still my baby.

I'm actually ridiculously calm.  Except for this underlying anxiety that I feel every time my children leave my presence.  Just kind of magnified.

I believe the surgeon is skilled and knows what he's doing.  I believe things will go well.  But there's still that part of me that holds a constant prayer in my heart that she will come back to me.

I wonder if that will ever go away or if I will just always have that small alert in my heart.  No matter how old they get, I wonder if I will always have that sense that they are vulnerable to this big, bad world and I need to protect them.

I can't imagine doing this without faith.  While I believe everything will go well and she will heal and finally feel better, there is a tiny chance that things could go not well.  That she could have permanent damage of some kind, have a successful surgery but feel no relief, or even die.  All of those things are possible.  But I am still much more calm than not because of my faith. 

I know that I am not the only one worried about her and watching out for her.  I know that she was His child first.  I know that no matter what happens, she will be okay.  We will be okay.  There is great comfort in knowing that.

But it doesn't mean I'm ready to give her up yet.

I imagine she'll come out and we'll have a rough go for a few days with a consistently upward curve of healing.  I imagine that within a few months, the only evidence of today will be the six-inch scar up the back of her neck and skull.  I imagine she'll be up and running, back to usual, before we think she should.

But right now a doctor has her head splayed open and is working on her brain.  And we wait.  And it's scary.

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Wednesday, April 10, 2013

The Blessings of Chronic Illness

Last night I had a conversation with someone who knew nothing of my chronic illness.  This is someone I only run into occasionally, who has only seen me when I'm doing well.  Which makes sense because when I'm not well I generally don't leave my house.

I don't remember what brought us to the topic of my health, but there we were.  I was explaining to her that I've fought debilitating fatigue for twelve years and a chronic headache for nearly eight.  With no answers as to why.  And I watched her face change.  There was concern and sadness.  And she expressed as much.  As she said what kind of specialists have you seen and doesn't anyone have any answers and oh, how hard that must be, I realized I don't see it that way.

And I told her of the blessings I've received because of my chronic illness.  (Some of which I've written about here.)

As a society, we tend to celebrate busyness.  Go, go, go.  That's how to be a good person.  Do, do, do.  There's never enough time in the day.  We have too much to do.  Why can't we do and have it all?  Chronic illness has taught me that this is foolish. 

Doing just to be busy is worthless.  Even damaging.  When we do and have more and more, it is usually worth less and less.  There is such value in choosing how we live our lives, every moment of our lives, instead of getting caught in the rushing flow of life as it happens around us.  And sometimes choosing to do nothing.  Choosing to be still and quiet.  Choosing to do only one thing at a time instead of always multitasking.  Teaching our minds to be at peace.

There are people who can learn this without chronic illness.  I am not one of them.  If I felt better, even now after all I've learned, I would be running around like a chicken with my head cut off -- just like I used to.  Bragging (without realizing it) in a martyr-like way about how busy I was.  Holding my exhaustion up as a badge of honor for the war of busy I fought.  Busy because I couldn't bring myself to give anything up.  Because I didn't have the willpower to choose what was important and get rid of what wasn't.  Because I didn't understand that empty spaces in my schedule were worth choosing. 

I needed chronic illness.  I needed the smack in the head that said, "Sit down and be quiet!"  I needed to be forced to pay attention to other things.  I needed to question the desires of my heart and decide what was important enough to me to spend the tiny bit of energy I have on it.  And it can be summed up in one word.  People.

The things I was doing before were good things.  But most of them were not of eternal significance.  People are of eternal significance.

I'm still working toward the ideal for me.  For now, I have structured my life in such a way that I am able to take the time to be with people when I need to.  I'm blessed that my husband makes enough money that I don't have to work (which I couldn't do anyway because of my health).  I'm blessed that the days of small children needing all my time are behind me.  As I create my new life, which is constantly in flux, the one thing that must remain true is my ability to be with people.  I need this.  To set other things aside and just visit.

Maybe it's an hour chatting on my porch.  Maybe it's a trip out for ice cream.  Maybe it's lunch.  Whatever it is, it will involve intimate conversation about things that matter.  Things no one else has the time to listen to.  I have the time.  I protect the time so that I can offer it to others.

I still have to take care of myself.  I have to remember that I am important, too.  I have to remember that if I don't take care of myself I will have nothing left to offer others.

It is the desire of my heart to connect with people.  To lift and strengthen them.  And in so doing I am lifted.  I am strengthened.  Instead of draining my tiny bit of energy, it increases.  It feeds my soul.

My illnesses and life struggles have taught me empathy and an understanding of a great many things.  Between physical health problems and mental health issues, and the diagnosis and treatment of both, I've waded through many dark waters.  Certainly not all of them, but many of them.  Sometimes I am miserable and hurting.  But I would not trade it for the world.  Because it has blessed me with an understanding heart.

If I could go back in time and do something different that prevented me from getting ill, I wouldn't.  I am so grateful for what I've learned and how I've grown.  I am so blessed to be able to offer what I can.  And none of this would have been possible without my chronic illness.

I watched her face change again as I told her these things.  I watched it soften.  I watched her smile.

If I don't learn from these experiences and bless the lives of others through what I've learned, then it was just a lot of ugliness and unhappiness and pain.  But if I use it to reach out, it meant something.  It has value.  It has eternal significance.

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Tuesday, April 2, 2013

Practicing Self-Care

This is a tough one for me.  It's one I've studied and written about over and over and yet I still struggle.  I do well for a while and then I blow it.  And I don't think I'm alone.  I think many of us struggle.

There's basic self-care:  eating, washing, sleeping -- all those daily activities that keep us alive and healthy.  There's a step up:  exercise, cleaning, going to the doctor, paying bills -- those things that we think are extra, that fall away when we just have no energy left.  We might each have different things on those lists.  Something that's basic survival for me might not matter to you, because there is an element of emotion involved in survival.

And then there's more.  There are those things that feed our souls.  Those things that reward us for all the things we make ourselves do when we don't want to.  Those things that reward us for all we do for others.

I really stink at those, but I'm getting better.  I may not do them as often as I should, but at least I know what some of them are now.

I try to do them every so often.  That's probably not often enough.  I recently read a suggestion that we find time every day to do something.  That was a jolt to me.  I definitely don't take time every day to focus on feeding my soul.  But I agree that I should. 

I'm going to work on this.  I'm working on finding things that I can do in five minutes that feed my soul.  Like blowing bubbles.  Or coloring in a coloring book with crayons.  Maybe I don't have an hour every day to spend on this, but I can find five minutes.  And I can guard that five minutes.  I believe it's important.  It's time to make my actions reflect my beliefs.

When I started therapy and really working on my personal growth and mental health a few years ago, I was challenged by my therapist to do something good for myself.  To practice some self-care.  And I was completely lost.  I was clueless.

So I turned to my friends.  I asked them what they do.  And I created a resource for myself, something I can turn to when I need a little kick start.  Today I am sharing that with you.  If you don't read the whole list, at least scroll to the bottom and read the last paragraph -- that one has gotten me through some tough moments.  It's quite a long list, but I am sharing the whole thing because I don't know what will be right for whom.  I want you to be able to find what you might need.  Also, there are a few that are region specific (I live in Utah and several are about places in my area); I am including these -- as a bonus for those who live in Utah or as a jumping off point to find something similar in your area.  Some are quick.  Some are not.  I hope there's something here that helps you.  I welcome any you would like to add.

And I hope to be posting a list of my own healing activities soon.

**********

On December 28, 2006 I sent out the following request to about 35-40 people in my email address book:

I have a strange request for help.  I am in need of emotional educating (or something like that).

If I have sent this to you, then you are someone that I think could offer something of value in my current quest.

I have recently come to realize that I have difficulty relaxing, doing something that I enjoy, or rewarding myself.  When I am asked to do one of these things, I am at a loss.  I have no idea what I enjoy or what might help me relax.

So I am looking for some suggestions.  I would like to know what each of you do to relax, to reward yourself, or just for fun.  Obviously, I don't want you to divulge anything that will be embarrassing to either of us.  And things that are outside of the norm would be helpful, things that others might not suggest.  The more diversity the better.

Thanks in advance for your help,
Robin

And here are the amazing responses from my generous friends:

  • Coloring with crayons
  • Watercolors
  • Crafts
  • Digital scrapbooking
  • Pedicure
  • Massage
  • Exercise
  • Shopping
  • Anything without kids – date with spouse, movie with friends, driving
  • Cleaning
  • Learn something new (e.g., how to play guitar)
  • Do something different even when you don’t feel like it (e.g., comedy club)
  • Read a good book
  • Take a bath and pamper yourself with a salt or sugar scrub and some good lotion
  • Call a friend
  • Eat chocolate, especially dark chocolate
  • Sleep
  • Buy something for yourself – make sure it’s for YOU!
  • Listen to some good music and be sure to sing!
  • Shut the lights off, lie in bed, and listen to relaxing music
  • Hammock in the sunshine (indoors by a sunny window in the winter)
  • Nature, solitude in the mountains, by a lake, or somewhere quiet and scenic
  • A hot bath (a hot tub if you have access; the bigger the better)
  • A good movie or TV show
  • A favorite treat (suggestion: Steven’s hot cocoa with a pastry made from rolled out pie crust with cinnamon and sugar on top and cut into squares and then baked to perfection)
  • Yoga/relaxation or meditation type video
  • Prayer
  • Drive up in the hills or mountains and listen to favorite 80’s music
  • Scenic places such as the Alpine loop overlook or Tibblefork reservoir, Bridal Veil Falls, Temple Square, across the lake on a drive, up any canyon
  • Ski resort
  • Mountain biking
  • Laser tag/paintball
  • A new movie you want to see
  • Hiking
  • Go to a water park
  • Video games
  • Play sports with kids
  • Attend a comedy at Hale Center Theater
  • Boating or canoeing
  • Frisbee
  • Eating good food at a good restaurant
  • Going to a national park
  • Lava hot springs in Idaho
  • Play pool, air hockey, pinball
  • Walk or hike – time to enjoy my surroundings, time to reflect, time to think, time to push myself
  • Go to a movie alone
  • Lunch with friends with restrictions on topics of conversation – no whining or complaining, no talking about work, no trying to solve the friends’ problems, just light conversation about the meaning of life or solving global warming
  • Games
  • Writing
  • Find a life coach, if necessary
  • Get your hair done, every 6-8 weeks
  • Get a “couples massage”
  • Go somewhere with best friends for a couple of days
  • Creative writing – no reality-type writing; fantasy, science fiction, fairy tale (escape)
  • Poetry
  • Curl up in a throw and just listen to some quiet, instrumental music
  • Quick crafts, something you can do ten minutes at a time
  • Listen to smooth jazz
  • Needlework – cross stitch, knitting, crocheting
  • Listen to audio books
  • Watch favorite DVDs
  • Play computer games
  • Take time to be alone
  • Build something
  • Sew
  • Get in the car, turn on music that I know all the words to, and just drive and sing!
  • Drive around and look at houses – and dream
  • Look at a magazine
  • Exercise outside
  • Bike
  • Walk in the canyon
  • Splurge on a totally unnecessary item for yourself
  • Give yourself permission for guilt-free television watching, within limits
  • One-on-one time with your children -- choose something wild that you’ve never attended or done, grab one of your kids, and just go do it (e.g., skiing, monster truck rally, etc.)
  • Go to Barnes and Noble ALONE, choose a book, and sit in one of those big chairs and just read
  • Hot shower, clean shaven legs, and clean sheets to climb into bed
  • Read – not something to learn from – just popcorn for the brain
  • Create with the computer – do something with the computer just to see if you can
  • Treat yourself with downloads from iTunes
  • Go to a ski resort in the summer, with a mountain bike; they put the bike on the chair lift, you have a nice quiet ride up, ride the bike back down, then do it again
  • Go for a ride in the car with no destination in mind, with or without company
  • Go for a walk with no destination in mind, with or without company
  • Go for a walk at night while it’s snowing or just after a snow
  • Take a book with you in the car so that if you are stopped in traffic or have a few minutes to wait for an appointment you can read
  • Work on a puzzle
  • Travel/explore new adventures
  • Read cookbooks
  • Research things
  • Garden
  • Look at fabric
  • Organize things
  • Walk around in art museums
  • Take classes
  • Go to plays, concerts, and movies with friends and family
  • Write poetry and prose – this can help work through strong emotions
  • Ride a motorcycle
  • Practice the breathing/visualization techniques you learned in childbirth classes
  • Play racquetball
  • Do something physical
  • Take a nap
  • Tickle/wrestle with your children
  • Watch movie trailers on apple.com
  • Call a loved one
  • Sudoku
  • Time with family
  • Dinner out
  • Pray for someone else
  • Quilting
  • Hot bubble bath when NO ONE can interrupt you
  • Hot chocolate with marshmallows
  • Read a book from your childhood
  • Write in a journal – without worrying about how this will sound to future generations, just for yourself
  • Window shopping at a store that is so expensive you’re not even tempted to buy (e.g., Banana Republic and Bass Furniture)
  • Let your friend give you a pedicure
  • Go to the dollar store and put together a little pampering kit for someone who won’t expect it and surprise them
  • Learning – it’s great now that I don’t have to do it for a class
I don’t know if sleeping is hard for you, but if so:
  • Sound machine – can get one at Walmart ($14, Conair); it has about 12 different sounds, 60-minute auto-shutoff, or constant
  • Deep breathing – there are CDs that can lead you through different exercises
  • Erasing thoughts – If I lay in bed with racing thoughts of things I need to do I have a notepad next to my bed to write stuff down.  Once it’s written you can usually let it go.  I will also close my eyes and picture a large chalkboard with all of my thoughts on it, in words or pictures, then you picture yourself with an eraser wiping them off.  For me sometimes they show up on the board again, so I just walk back and forth erasing until they all disappear.
  • Heart Beat – take your left hand and squeeze your right thumb until you feel your heartbeat; once you feel it count 10 beats then move to your next finger; repeat through all ten fingers; usually by the second time around you are asleep.
*  If all else fails follow your heart.  We all have purpose in life that brings us happiness.  Sometimes it just takes time to find it.
*  I can think myself out of just about any adventure.  The key here is – don’t think!
*  One question you might ask is when did you last enjoy something or relax.  See if anything has changed since then that might counteract enjoyment.
*  I always need time to myself.  I really force others to know this.  Family and friends will always demand your time.  It is easy to find things to do for others, but it can be difficult to find things to do for myself.  It is a matter of training yourself and others.  My time is my time.  (Don’t fall for, “Can you just take care of this before you have your time?” thinking.)
*  Productivity, using my creative side, bringing order out of chaos, all of these are both rewarding and stress releasing for me.
*  I find I have to do self-talk before I do something for myself.  I am doing this for mental health.  I am taking a mental health break.  I will do this for _____ minutes and won’t feel guilty for a single second of this time.  I am worth it.
*  I’m not trying to promote an anti-kid theme, but I feel you can let your true feelings/stresses/anxieties out so much more when they’re not around – you know, no show to put on for them and their feelings.
*  Mostly it is a treat if I get to make my own choice about what to do with my time.  That happens rarely enough that I treasure the chance.
*  If I really want to treat myself, I get everything else done so the chances of my getting interrupted or feeling guilty are lessened to some degree, then I get in cozy clothes, find a cozy spot with a warm blanket, and make some hot chocolate – then I tune out the world and read.  It’s really in the extras.  In the summer I like to find a nice spot outside and have lemonade instead of hot chocolate.
 
*  Whatever you begin to do for yourself, JUST DO IT.  The fact that you are looking for suggestions is moving in the right direction.  If you don’t take care of yourself, you can not take care of anyone else.  You need to know that you are worth it, and you deserve anything you want.

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