Monday, December 30, 2013

Chemotherapy and Blood Work

Wes went in for some blood work and a meeting with his chemo oncologist today.  Result:  His blood is perfect.  White cells still strong.  He is experiencing very few of the side effects from the chemo so far, has good energy and is still working.

All these things are answered prayers. 

Glory to Thee, O Lord.  Glory to Thee!

Sink or Swim

I am learning through this crisis in my life that is my spouse having cancer to internally slow down.  Think each thought,. Feel each feeling.  Be in each moment.  Wonder each wonder.

It is OK to think, feel, and wonder.  But it's also OK to just BE.  And to focus on the necessary dailyness of being.  Things like coffee and lentil soup and what's for dinner? 

I stare at my pretty wedding rings that are mostly not even "wedding" rings (one was from an anniversary and one was from a Christmas and is CZ)  and I wonder how much longer I will "get" to wear them.  Then I remind myself that I can wear them forever if I want to.  Because LOVE lasts forever, even beyond death. 

I am learning to take care of myself....or continuing to learn this.  I am eating nutritious food.  I am not caring as much about weight loss as I am about keeping up my stamina and little of that as I have. 

I am taking my vitamins. 

I am learning that it is impossible to cry while I'm swimming.  But that's pretty much the only time where it's physically impossible to cry (too busy staying alive in the water to cry, and that is what swimming ultimately is:  putting yourself in an unnatural-to-humans environment and moving forward.  A good metaphor for so many things.) 

I value bed time, and simple to so lists. 

I am learning to delegate. 
I have learned how to pay the bills. 

I have learned that I don't need to go to every Oncologist's appointment yet.  I can drop him off and go do other things. 

I am learning that it is important for my soul to give alms and think of others, too. 

I am learning that I can't do everything, and that help is available. 

I am learning about true love, and to treasure each little moment. 

I got a water bottle.  It's good to stay hydrated. 

I like makeup and manicures and sweatpants and comfy robes, psalters and prayer ropes and rosaries and akathists and sugar free chocolate.  There is room for all of that. 

I am learning that if it's between washing a sink full of dirty dishes and the chance to go swim, I'd better go swim... because...survival.

Sunday, December 29, 2013

Happy Birthday, Wes!

Birthday man turned 44 today!  I made a high protein, low carb cake out of coconut flour and flax meal.  It contained 10 eggs!  And chocolate.  It was sweetened with erythritol and stevia.  One of Wes' medications has evil effects on his blood sugar, so other than a bit of fruit and the occasional portion of prunes, he is avoiding sugar.  The cake was popular with everyone in the family, which was a nice surprise.  And since it is not loaded with sugar and carbs, it will make a nice breakfast!  Here are some pictures: 
Prayers are certainly appreciated.  Right on schedule, Wes is starting to experience some of the side effects from his chemo.  He can't go very long with an empty stomach now, without experiencing an uncomfortable gut clenching sensation.  And the hair loss: That has begun and is progressing.  Please pray that God would grant Wes the ability to keep working through this round of chemotherapy and radiation, which will last until near the end of January. 

Thursday, December 26, 2013

Camned Dancer

I picked Wes up from work today to take him to his radiation appointment.  We were chatting.  How was your day?  How was your energy?  Well, I see at least you still have your I snuck a look at his beard and chuckled.

He paused, a funny look on his face.  "Actually..." and he whipped off the hat I"d knitted during his biopsy surgery.  I pulled the car over, still in the parking lot of the place where he works, so I could take a look.

Sure enough, a couple of bald spots on the side of his head:  one of them as big as my palm. another, about thumb sized.

I joked that at least now we know the pills aren't placebos.  The laughter covered up tears.   I noticed he looked pale, wan, and worn out. 

His hat went right back on, and we ran a couple of errands (filling prescriptions at the pharmacy, checking mail at our P.O. box...nothing earth shatteringly fun). 

After supper I shaved his head with barber clippers.  I've done it hundreds of times before.

But this time it sure felt different. 

Camned Dancer. 

Saturday, December 21, 2013

Saturday Update

Eight days of chemo and two weeks of radiation under his belt and Wes is still feeling pretty good.  So far he still has his hair and although we have noticed a slight increase in fatigue, he is still pulling his weight at work.  I'm so grateful that he's working from home as much as he is.

Me, how am I doing?  Horribly.  Seems like my whole day every day is errand after errand and driving driving driving.  My son has missed two activities (Boy scouts and choir practice) this past week, and the girls missed an American Heritage Girls meeting because I was too tired to drive in the evening. And I was also too tired to call and find them a ride. And by too tired, I mean, I could barely hold my body upright by the time I dragged through the door after the radiation treatments around 5 pm each day.

Thank God for the crock pot.

On Wednesday, I bought a car.  I won't go into details about how ridiculous and exhausting the whole process was, but in the end, we got approved for a car loan and were able to get this: 

And it's kind of a big deal for me, personally, because I was the one to do the research, find the vehicle, go talk to the dealer, do the test drive and fill out the initial paperwork application for financing.  I wrote the check for the down payment.  And then I brought Wes in in the evening to finish up the paperwork, sign stuff and all that.  Sorry for the lousy picture that cut off the front and back.  My new ride is a 2012 KIA Sedona.  I hope, truly, that this will be my VERY LAST minivan.  I want my next car to be a compact, because by the time this one is done, hopefully ALL my kids will be adults and driving their own cars.  I look forward to the day.

I don't mean for my blog or my facebook posts to sound whiny or pathetic...but they are.  I'm sorry.  Every day Wes is doing well is a day for rejoicing.  And at the end of this month, hopefully, he'll be allowed to drive again, I think (although I am deeply uncomfortable with the idea of a person with a brain tumor driving a car, even if he IS on anti-seizure meds).

I AM struggling with depression and exhaustion and exhaustion and exhaustion and did I mention exhaustion, and obvious adrenal fatigue and pain.  Having this sort of challenge would be exhausting for anyone.  This, on top of my fibromyalgia and Hashi's, and parenting the kids through their autism related challenges in the midst of this...oy.  I feel sicker than I think I ought to feel with these conditions.  Perhaps I am delusional about what to expect with fibro etc. 

This afternoon I promised to take the kids to see the Hobbit movie. 

I honestly don't know how to ask for help. 

Tuesday, December 17, 2013

In All Things, Give Thanks

I suppose my readers here would like an update on how Wes is doing...So far, he is doing GREAT.  As a matter of fact, he is running circles around me. His face is puffier though, and his smile Larry the Cucumber.  Small differences.  Probably from the steroids. 

He's been receiving radiation for six treatments so far (today is day seven) and chemo every day since last...what was it?  Wednesday or Thursday.  something.

Each day he has energy and no side effects is a gift, and so far, he's been fine.  We do realize that it is cumulative and that the nausea will probably kick in once his stomach lining cells have been destroyed along with his hair follicles and hopefully some of those nasty cancer cells.  We shall see...but each day he is feeling good, we give thanks.

Meanwhile, I am EXHAUSTED and dealing with plenty of fibromyalgia pain from day to day.  I don't have the option of slowing down and resting, since I am the family driver, at least through the end of this month.  Barring another seizure, Wes can return to driving on his birthday at the end of December.

I'm still trying to take good care of my health.  I saw the doctor yesterday and we talked about what else I can do.  Even after two years of heavy duty vitamin D supplementation, my levels are still too low.  So she's bumping that up, among other things.   My big question for today is:  stay home and putz around the house (muchly needed!) or go for a swim at the YMCA (also muchly needed).  

At this point, a week after the car wreck that totaled my minivan, it is looking and feeling way more like an act of Providence (God's providing grace) than something bad.  We got the settlement from the other party's insurance company, and it is WAY MORE than Kelly Blue Book value.  We will be able to go and buy a much newer minivan and use it as a sizable down payment.  Considering that our old van was leaking oil and starting to fall apart on us, this is a GIFT.  Glory to God for all things!!!!!

So, this is all the Sheldahl family updates that are to be had.  The kids are continuing in their work and school work.

I realized yesterday evening that Christmas is only a week away.  I have not given one single solitary thought to baking, or feast-planning, or anything like that.  Before our family got medical orders to eat gluten and dairy free, my go-to Christmas dinner was a Stouffer's Lasagna.  Unfortunately, that is flat out no longer a possibility.  I don't want to do a ton or work but I want to put something on the table that a)everyone will like-HA! b) is relatively effortless and c) feels festive and special.  Tall order.  And Christmas cookies....need. to. make. Christmas. cookies.  Because they don't sell gluten free ones at the deli.

And for today, that is all she wrote.  There is not enough coffee in the world to coax anything more profound from my fingertips this morning.  Have a blessed day.  


Friday, December 13, 2013

Lipstick Courage

At the oncologist's yesterday morning, I observed that you could pick out the caregivers. Most of them seemed to be daughters of elderly mothers or fathers. Some sons. The daughters and sons were my age or older. 
 All the women were very intentionally dressed up just a bit...just like me. Perhaps it is forced cheer in a stressful and sad place:  Lipstick courage and prayer to bolster the flagging spirit that can too easily descend into that sorrowful place of anticipation. 
The oncologist office seemed like a very sad place, on the whole. But also full of caring and devotion, love.  
I coined the phrase "Lipstick Courage", not to call it false courage, but rather to describe the particular place a caregiver finds herself in.  It's a strange place to be; a prayerful place, an exahusting place, a place of death-to-self.   I know this, and I've only just barely stepped across the threshold.
During all my copious weeping last week, and the week before, someone advised me to take special care for myself during this time of taking care of Wes.  This is good advice.  Putting on some makeup is the easiest thing I do, but it is perhaps, merely a reminder to myself to take care of myself in all the other ways that matter more:  nutrition, sleep, prayer, exercise (have not figured out yet how to do that one on my new schedule), reaching out to people and saying "yes" to offers of help, and BALANCE.  
More than one person has told me that Cancer is harder on the caregiver than it is on the sick person.  Perhaps that is true, at least until just near the end?  I don't know.  It won't be me losing my hair and vomiting.  Those things are still just a "perhaps" for us.  Right now cancer just means extra doctor's appointments, radiation appointment daily and some pills to take on a schedule. Me doing lots and lots of driving.  And extra bills to pay.  
So, here's to Lipstick Courage, and all that it means:   The best advice someone has given me is to live in the NOW. I strive to do just that. 

Tuesday, December 10, 2013

An Eventful Day...

Yesterday was very eventful.  It was NOT the type of day I imagined when I was stretching and waking up as my alarm clock went off.

It started out normal enough:  I took Maia and Wes to work.

First detour:  I went to the beauty parlor to get a hair cut.  I came away with a wax, cut and COLOR.  And I ADORE how my hair looks now.  The stylist said that I was 15% gray....I'd been thinking of getting a box and doing it myself, but I have consistently had bad results doing that...the boxed color just slides off my gray hairs. 

So I got a new "do" and that took all morning long.  Sorry kids.  Bad mom.  They got their school work done independently, as usual.

Because the salon took for-freaking-ever, I had to run and pick a Maia a few minutes late, grab some lunch and eat it while driving to pick up Wes.  Yes, I AM that driver.  The one eating pie.  While driving.

So, long story short...Wes picked up and dropped off at Cancer center for his first radiation treatment.  Me, home resting for a few minutes because getting one's hair done is just so...strenuous.  La!

Finally Wes called me around 4 pm to be picked up.  On my way there, about 3/4 of a mile from our house, I was in a car accident.  Someone ran a red light, and crashed into the drivers side rear wheel area of my tired old minivan.  Took the wheel off.  I did a 180 in slow motion. 

That someone...could have been pie eating ME.  I could have done that.  A busy mom, fresh from Christmas shopping, rushing and worried to get to her kids' bus stop on time. 

So.  Totally. Could. Have. Been. Me. 

God bless her and be with her. 

Thanks be to God!!!!!!!!  THANKS BE TO GOD!!!!!  She hit the BACK of my car and not my door.

It hit me later how close I came to being very very seriously injured.  Or dead.  Thanks be to God, I was not.

So, the next few hours were spent standing in the cold, talking to the police, waiting for a tow truck, etc.

Poor Wes had to walk home from the cancer center.  2.1 miles to the accident site.  So, eventually he showed up and started calling insurance agents, and such.

I am way to dependent on him for that stuff.  Oh well.  I guess I still get to be.

The wheel is off my car, the axel, I think, might be broken.  (So says the tow truck man.)

Today will be the hassel of getting a rental, running errands that were supposed to be run yesterday evening, and starting to deal with the car insurance company of the person who hit me.  Fortunately I have a witness, and her story matches mine, and there is a police's all just stuff to do.  Stuff to do.

So, the question that has been on our minds of whether or not to replace this vehicle, and when, seems to have been answered for us.

And all I have is a slightly sore jaw, and the feeling that I experienced some torque.  If I need PT or a chiropractor, I will find one.  And the insurance company can pay for it.

I'm grateful for the friend who came a picked us up and took us home.  It was SO VERY COLD.  I'm grateful we were able to slip into the Goodwill store and warm up.  People are kind.  I'm grateful for our dear friends who loaned up their car for a day or two until we get a rental.  

All I see here is God's protection and provision, and I'm feeling extremely grateful.  God be glorified.  

Friday, December 06, 2013

Gluten Free Cinnamon Rolls

3 cups gluten free flour blend (I use 1:1 ratio of tapioca starch and rice flour)
2 tsp. salt
6 tsp. sugar
1 tsp. xanthan gum.
1 T. rapid rise yeast

Mix dry ingredients. Add to this:

1 egg
1/4 cup oil (I used sunflower seed oil)
2 or 3 cups warm water 

Stir together, and then beat with a mixer until batter is smooth.  this is pretty much just like my gluten free bread recipe up to this point, just w/ smaller quantities.

When batter is smooth, gently shake in some gluten free instant mashed potato flakes, and mix them in, a little bit at a time.  Do this in small amounts and slowly...don't get the batter too stiff.  Stop adding potato flakes when batter is sticky but not completely stiff.

Add a tiny bit more flour (about half a cup) and mix it in, so the batter is now a dough and forms a ball.

put some flour on your rolling mat/surface and pat this dough out so that it is a large rectangle, less than 1/2 thick.

spread melted butter or oil on the dough and sprinkle liberally with sugar and cinnamon.  Roll up, then cut 3/4 inch slices and place in oiled 9x13 pan.

Allow to rise in a warm place between 30 minutes and an hour.  It doesn't rise very much, but will a little bit.  Bake at 350 for about 35 minutes.


I apologize for the loosy-goosy nature of this recipe.  Tis how I cook. 

Wednesday, December 04, 2013


I had a wonderful time today, visiting with my bestie, Alicia.  She and her girls came over for tea and baked something-or-other and we had a grand ol' time.  Of course we talked about all the important things in life:  kids, our concerns, health stuff, Church stuff, God stuff...all that stuff.  We drank tea.  We used pretty china.  It was so awesome. 

Earlier this morning I was feeling pretty emotional, and I didn't want to go home after I took Maia and Wes to work.  So I hit the thrift store, and I found some tea cup/saucer sets!  (I collect them).  I also found some pants that I was in need of.  So, mission accomplished.

Pink Roses on the tea cup!  That's special to me. 

And I had another wonderful conversation with another friend tonight after I dropped off my son for scouts.  She had her new 12 passenger van to show me, and we talked about the sorts of things people who buy 12 passenger vans talk about:  Health, nutrition, when the baby is know...good LIFE stuff. 

I realized that Wes' cancer diagnosis feels a little bit like a pregnancy in reverse.  There's that sense of "everything is forever different now" along with that strong urgent sense of expectation.  But this is a very different sort of passage, and is more negative than positive.  But in that "rite of passage" "life change" sort of way, a cancer diagnosis is huge....and forgive me if I am writing as though I have decided that he is going to die.  I am, I suppose.  I have to accept it.  And I'm doing a lot of processing of that idea...while still praying and asking  God for healing. 

I am surrounded by good friends and family and love.  I can feel it.  It is real.  Thank you. 

Tuesday, December 03, 2013


Today Wes went to the radiology Oncologist.  I liked the doctor.  He was very informative and explained the procedure and process of what Wes is going to be going through  over the next six and a half weeks.  The most interesting tidbit we learned was the size of Wes' tumor.  Back on September 30 when he had is Aphasia episode, and we took him to the ER thinking it was a stroke, the tumor measured 2.3x2cm.  On November 21st, less than 2 months later, the MRI they did before the biopsy showed that the tumor measured 3.3x3cm.  That is a LOT of growth!  And very rapid growth! 

I think this knowledge really has hit us hard, making it all real, again, on a whole 'nother level.  I shed a few tears, and so did Wes, and so have some of our kids.  Each one of us is showing our sadness and fear in different ways, and I'm trying to encourage us to talk a little bit about the fact that people grieve differently from one another and that there is a wrong way and a right way to grieve. 

Obviously, the outcome is not guaranteed, one way or another.  God is not a vending machine in the sky, and we don't just demand healings from Him, even though we humbly ask. 

Jesus also asked that this cup may pass from him, when He was in the garden of Gethsemane,facing his torture and death.  But then He prayed "Thy will be done". 

And that is the prayer of my life:  "Thy will be done." 

So, I don't know the future.  And that is a good thing, because the future is un-handle-able.  But we have grace for the present. 

On Thursday Wes will see the medical Oncologist, and be started on oral chemo drugs, in addition to the radiation therapy.  Of course he's also going to work daily and working from home when his schedule demands that, since I'm still doing all the driving for now.

Symptoms so far, that we can discern:  Words come slower and with more difficulty.  Wes misspells things more easily, is more sensitive to noise, and sometimes has trouble singing a tune. He is more run down and gets tired more easily.   No headaches yet, thank God, and so far just the one seizure. 

Lord have mercy, Lord have mercy, Lord have mercy. 

And my God be glorified.  No. Matter. What. 

Sunday, December 01, 2013

An Ordinary Day

Today my fibromyalgia kicked me in the rear, and I stayed home from Church.  Unfortunately that meant the kids stayed home, too.  Wes, feeling great, walked the 1.5 miles to Church. 

But for supper we had a couple come to visit us who live in another state, whom we have been friends with since before we were each married.  (In fact, their wedding was just about three weeks before ours, the same summer).  It was so good to visit!  They are the types of friends who are friends for life, that you just pick up with again where you left off and there's really no "leaving off" even if we have not seen each other in a few years. 

Tomorrow, thankfully, is an ordinary day.  I'll just get up, take Maia to work and then take Wes to work.  After that, I have to go get my blood draw done, so that my doctor can have lab reports on how I'm doing with my various health concerns.  That's what so weird and difficult:  Just because Wes has cancer does not mean I don't still have thyroid disease and fibromyalgia that I have to manage.  Just because Wes has cancer does not mean Bethany doesn't still have her autism and mental health issues to contend with.  Just because Wes has cancer doesn't make the world stop. 

I think the world should stop. 



But I'm so glad tomorrow is fairly normal    I hope I can go for a swim in the afternoon.  I desperately need the exercise. 

On Tuesday the extra doctor appointments start for Wes.  But tomorrow  I'm going to hang on to ordinary as tight as I can. 


Several people have suggested to us that we start fund raising for Wes' cancer treatments.  To that end, I have set up a gofundme account.

With humility and gratitude.  May God be glorified. 

Saturday, November 30, 2013


I didn't really know that heartache ACTUALLY makes your heart ache.  But I know now.  It does.  I am so sad, and Wes is so stinking positive.  I just want to curl up in a ball under the covers and cry for the rest of my forever.  Meanwhile Wes is busy researching, and figuring out where to go to get a second opinion, learning about treatment options, and being all pro-active.  Of course he is.  He is the most stubborn man alive, and right now, I'm so glad for it.  Knowing him, his stubborn will take him far in this cancer battle.

It is utterly depressing to think of a two year survival time of being a good outcome and outside the norm. 

We made a list of what I need to learn to handle for if/when he dies.  One of the things on the list is to go over to Ratterman's funeral home and make some plans.  Another thing on the list is to talk to a financial advisor.  Another list item is finding out how much social security death benefits will be, and creating a budget. I want to do this before hand, and talk it over with him.  He is so much better at that stuff than I am.  

In my mind is the constant question:  What will I DO?  I'm one of those "lame" women who has never worked outside the home.  I've been a stay at home mom all of my marriage, other than being in grad school for a few years.  I graduated with my M.Div. in 1995.  After that it was diapers, breastfeeding, teaching kids to read, cooking, playing at the park and endless loads of laundry.  And then it was raising older kids, and cooking and  endless loads of laundry.  Now, it's a house full of teenagers, and cooking and endless loads of laundry.  And no matter how much I do to try and get healthier and take care of my health, it feels like I am ALWAYS hitting a wall in that department.  I still have very low energy, and quite frankly, I need lots of help.  And my help is deathly ill now. 

I keep looking at my wedding rings, wondering how much longer I will get to wear them.I've never been a widow before, and I'm not one yet, I know.  But there's a good chance I will be.  And soon.  I am so sad.

How will I cope when my fibromyalgia is really bad?  What will my children do? 

I need to find someone who can teach Maia how to drive a car.  And Eric, too, when he turns 16 next August.  I'm going to push him to go ahead and get his license asap.  Bethany is disabled and should not/does not drive,and for Ariana that is yet a year away. 

Meanwhile, I'll be driving Wes to radiation and work daily for the next six weeks, or so.  I should probably just focus on the NOW and stop thinking about the future.

We will be setting up a fundraising website this weekend, so that people can help us.  Chemo, radiation, and brain surgery, is very expensive. 

We put up  the Christmas tree yesterday.  Trying to be as normal as possible. 

Oh, my heart aches.   

Thursday, November 28, 2013

A Journey of Tears

On September 30 my husband had an episode where he could not speak.  I thought he was having a stroke, and after checking the symptoms online, I drove him to the ER.  They got him in right quick, and did a CT scan.  Sure enough, something showed up on the CT scan, and they admitted him to the hospital.  All his symptoms had resolved by that point, and so the doctors spent the next three days running many tests on him, trying to figure out why a young healthy thin man would have a stroke.  His arteries and veins were very very clear, with no clogged anything.  It made no sense.

One doctor in  the group had a different opinion.

He is a neurosurgeon, and when he looked at the MRI, he said "Brain Tumor".

So, Wes was sent home with medicine for both:  They put him on blood thinners in case it was a stroke, and they put him on an anti-seizure drug in case it was a brain tumor.

A month later, he had a follow up MRI and a week after that we went to see the doctor to find out the results:  The tumor was lit up from the contrast dye and still very very much there.  If Wes had had a stroke, the spot would have cleared up by then.  The tumor is located in his speech center. 

So Wes was scheduled for a brain tumor biopsy surgery.  That took place on the 21st.  He was in the ospital for a few days, and came home last Saturday night.  We knew for sure he had cancer after the surgery. Yesterday, we got the pathology report and found out how aggressive it is.  It was the worst possible news.  The cancer he has is the most aggressive brain tumor there is:  Glioblastoma.

He's not had another episode of not being able to speak since that first one, and he is recovering from his surgery very well.  It doesn't seem like he is sick at all.  It is so strange. 

The treatment, at this point, is chemo and radiation merely to try and slow down the cancer's growth.  Surgery is not indicated because the damage from the surgery, at this point, would be worse than what the tumor is causing. And also because there is no way to get ALL of a glioblastoma, and they always come back. So, next week he has apointments with the radiologist, the chemo oncologist, and also to get the stitches out of his head.

I have been weeping buckets.  The doctor was grim, and vague as he could be, but I know from research that the median survival time from diagnosis of this type of cancer is 14.6 months.  Only 10% survive to five years.  I pray pray pray that Wes is one of them.

Meanwhile, I am weeping, the kids are weeping and we tried to have a lovely Thanksgiving dinner today.  The table was pretty, the food was good, and after lunch I cried.  Then we played scrabble and ate pie and Wes and I walked to the corner Rite Aid and bought a bottle of wine.  I should go have a glass.

And so a new journey begins for me as I walk beside my beloved husband:  A cancer journey.  Possibly a death journey.  A Journey of Tears.  I will be honest and say this:  I am terrified and heartbroken, and so are our kids.

The scripture that keeps coming to my mind is:  "The Lord is my Shepherd.....Yea though I walk through the valley of the shadow of death, I will fear no evil.  Thy rod and Thy staff they comfort me." 

After we got the pathology report yesterday, Wes and I went for some coffee at a coffee shop.  We sat there crying together, and a stranger gave us her pack of tissues.  During that conversation we came up with a motto for all of this:  "God be glorified."  So whether Wes is miraculously healed, or whether he dies a Christian death at an all-too-early age:  God be glorified.  

Thursday, October 31, 2013


I'm done.  This shirt "fast" has been a good thing for the past two and a half weeks, but it's over.  Yes, I know.  I said until the 15th, but I have to stop.

My reasons:

First of all, mission accomplished, for now.  I AM now more grateful and satisfied with what is hanging in my own closet, and that urge to shop shop shop has died down.  I will remember this, and pull back on my wardrobe variety in the future when this issue crops up again for me.  I know it will.

Second of all, I realize my own foolishness.  I put burdens on  myself that neither the Orthodox Church nor God is putting on me, and this is a very heavy load indeed.   I need to learn to submit myself to a little bit of freedom every now and then.  I like rules and I like boundaries, but then I get depressed and go crazy with self imposed nonsense like this.  I am broken.

Thirdly:  I am betwixt and between.  I've lost some weight and most of my skirts from last fall/winter no longer fit me in the same way and everything is saggy baggy and very very frumpy.  I'm having a hard time finding replacements.  I am also finding that it is TIME to start sitting under my full spectrum light for 15 minutes a day.  Depression has started dogging me again.  Happens every year.

Fourth:  I have enough going on in my life without some silly shirt experiment.

So yes, all of you five readers out there who "know" me by now:  You were right.  I didn't last.  I don't mind.  This, too, is good for my humility.

Now, what the heckldydeck am I going to WEAR?  ;-) 

Tuesday, October 22, 2013

Blue Shirt Project Update

Well, I"m about a week or so in to the blue shirt's been a good week.  I wore my blue shirts except for the days when I was sick at home and in my jammies/lounge-wear.  There is a stomach bug making its way through our family. 

But other than that, there's nothing much to say.  I mean, it's JUST CLOTHES....and I sure do like not thinking much about what I'm wearing.  I sure do like not having a yen to hunt for things at the thrift store. 

And I DID actually go to the thrift store today.  Twice.  This morning I had to go to the dentist to get a filling replaced, and they shot me up with so much novocaine that I went to the Goodwill that is next to the dentist office before driving all the way that the medicine would wear off for a bit and I would not be so shaky.  I bought NOTHING. 

It was a proud moment. 

Then, this evening I took Bethany out to get some supplies at the pet store for her Angora Bunny, and afterwards we swung in to the local Goodwill so that she could see if there was a suitable fall jacket to be found.  She did find a cute pink fleece jacket, and I browsed the skirts as I always do and found nothing worth getting.  Did not even glance at the tops.  I'm so sick of it all. 

This is progress, y'all.  This is exactly the kind of personal growth I as looking for:  Less of a shopping yen, and more peacefulness. 

I don't think I'm going to go out and get rid of all my clothes when I'm done with my plain blue shirts month, but I DO think I will be more content with what I already have been blessed with. 

Feeling grateful. 

Tuesday, October 15, 2013

A Quote

"Our seventh struggle is against the demon of self-esteem, a multiform and subtle passion which is not readily perceived even by the person whom it tempts. The provocations of the other passions are more apparent and it is therefore somewhat easier to do battle with them, for the soul recognizes its enemy and can repulse him at once by rebutting him and by prayer. The vice of self-esteem, however, is difficult to fight against, because it has many forms and appears in all our activities - in our way of speaking, in what we say and in our silences, at work, in vigils and fasts, in prayer and reading, in stillness and long-suffering. Through all these it seeks to strike down the soldier of Christ. When it cannot seduce a man with extravagant clothes, it tries to tempt him by means of shabby ones. When it cannot flatter him with honor, it inflates him by causing him to endure what seems to be dishonor. When it cannot persuade him to feel proud of his display of eloquence, it entices him through silence into thinking he has achieved stillness. When it cannot puff him up with the thought of his luxurious table, it lures him into fasting for the sake of praise. In short, every task, every activity, gives this malicious demon a chance for battle."
-- St. John Cassian
Perhaps a better translation of "self-esteem" would be vainglory, say some.  But yes.  This.  My struggle.  Forever.  

Monday, October 14, 2013

The Blue Shirt Project

Remember a few years ago, when I did the brown dress project, where I only wore a brown dress (I had two of them) for a month?  Well, it is time for me to do something similar again.

I am trying to curb my acquisitiveness.  I am like a magpie collecting shiny things when it comes to clothes.  This must stop.  And I am ready to do violence to this passion.

I am going to dress plain.  Or at least plainer than I have been.  Sort of.  I made some blue shirts, in a style that will work for me in the urban context in which I dwell, and this is what I will wear.  The reason I chose to make myself four blue shirts for this project as a collection of random reasons:  Blue is my husband's favorite color, blue is also standing for/reminding me of the Theotokos.  Blue is a pretty good neutral color that looks OK on me.  It is soothing and calming.  I chose to sew them from scratch mostly because I can, but also a little bit to gain an appreciation for how much work goes into clothes.  Every item in my closet was made somewhere, by some human  being whose hands were busy, whose back ached, and who likely got paid very very little to do that work.

Clothes are fast, cheap and easy for me, being the thrift store shopper that I am.  And I don't want them to be so anymore.  I want them to be slow, deliberate, a bit more difficult and much more rare.  Clothes and the creation of outfits as a form of entertainment....getting more because I'm BORED with what is already hanging in my closet....getting more because of that indescribable LONGING mood that strikes from time to not. spiritually. healthy.

I know some of you know what I'm talking about.

So this is a fast, of sorts.  It's not an experiment.  And perhaps I ought not to be blogging about this at all.  I don't know.  Look at me, I'm being WEIRD.  I'm FASTING!!!!

But the fact of the matter is, I identify a sin in my life and this is what my particular path of repentance needs to look like.  I am a person who does not do well without structure and boundaries and rules.  Without such, I am all dissipation, sloth, gluttony and greed.  

We are one month way from the start of the Nativity fast and for starters I will commit to a month of blue shirts.  I have an array of black and brown and denim skirts that I will pair with them, and cardigans as necessary.  My headscarf collection has been pared way way down as well, to only a few that will coordinate with these blue shirts.  This is about keeping it simple.

I'm not going to dump all that is in my closet...yet.  But I do want to pare it down at some point.  But nothing done in haste.  For now:  Blue shirts. 

Friday, September 20, 2013

I have been remiss...

in blogging.  For that, I apologize.  You know that old song from 1979 called "Video Killed the Radio Star"?  Well, in my case, facebook killed blogging.  But I want to do better.  I promise. 

Lately most of my mental energy has been going towards day to day survival, working on things for my etsy shop, and building up my health and physical fitness, on top of the usual raising teenagers, feeding people, acquiring food for them, and doing the prayers and Church thing. 

In have started designing and making unique home altar cloths/Pascha basket covers.  I'll be making more, as I can.  I hope they serve the needs of Orthodox people here in America and fill a niche of something that is unique, American, and Orthodox. 

Meanwhile, I'm just as weird as I ever was.  I float along through my days like an intensified Mr. Magoo, forgetting half of what is probably important and feeling blessed that I have not, yet, lost any of my kids or pets or my own head anywhere dire and irretrievable.  Having it all together is way over rated. 

Here is a link to my latest creation, for your perusal, enjoyment, etc. 

Pascha Basket Cover

Friday, August 09, 2013


I have utterly neglected this blog over the past few months.  It's been a good summer for our family.  We've been gardening, and Wes and Maia have been working.  I've been doing a bit of canning, trying to continue taking care of my health and running the usual amounts of errands and cooking the usual meals from scratch.  Life goes along. 

Transfiguration was good, although I forgot to bring a bowl of grapes.  Any evening service that I actually make it to, is good.  It brings me joy. 

I decided to try and sing in the choir a bit, too.  Wes has been for a while, now.  And so going to choir practice on Thursday nights is my new challenge.  Energy. 

Right at the moment I have a headache. 

Friday, April 05, 2013

The Amazing Soup

I made an amazing soup tonight. It's completely lenten, dairy free, gluten free (sorry, not paleo this time)...and it was SOOOOO GOOD. And we had more than half a gallon of leftovers because I made a bit vat of it and it was very filling. Yum.

And then I put it in a jar and went to put it in the fridge...and slipped. And it fell on the floor, and crashed and spilled broken glass and hot soup all over my feet.

My feet are OK. Only three band-aids needed. The soup was hot but not scalding.

I am very sad about not having those leftovers, though.

Here's the recipe:

Chop: 5 or 6 stalks of celery, 1 large onion, and about a cup of carrots. Sautee these in the bottom of the pan with some coconut oil. Add a big dollop of minced garlic (as much as you like, I like a lot).

Peel and cube a 5 pound bag of potatoes. Peel and cube 2 turnips (or a couple extra potatoes). I added the turnips to add variety to the nutrition of the soup.

Add this to the pot, 1/2 T. salt, or to taste. Pepper and parsley as you see fit. Add water to cover the veggies but not too very much. Let boil until all the vegetables are tender.

Blend until smooth with immersion blender.

Add 1 can of coconut cream and 1 bag of Daiya cheddar style fake cheese. Allow to melt into the soup.


This was a very nice creamy dairy free "cheesy" soup and I really really wish I could have another bowl right now. But that is not meant to be.

Thursday, April 04, 2013

Mid Lent Update

Well, Lent is going along just fine here at our house. I've discovered that keeping the right balance (as in LOTS) of fruits and vegetables in my diet is making it possible for me to keep the fast for the most part (still the occasional egg or can of tuna). I'm very grateful for this and it is an answered prayer.

Another interesting answer to that prayer I prayed, the "God, help me to fast and help me not to eat so much food" prayer: I got pneumonia. I was really really sick for five days, running a very high fever off and on for five days before I finally made it to the doctor. I was surprised at the pneumonia diagnosis, but that's what it was. So they put me on the type of antibiotics that can kill the plague, or anthrax, gave me a nebulizer and some albuterol, some cough medication pills, and some mucinex, and sent me on my way.

All those things...I needed them. So that basically took a solid two weeks out of my life. I have nothing but gratitude to see that fever gone.

All the rest of my family's been sick, too. Their version of this scourge has "merely" been fever and bronchitis. But I have no doubt it is the same germs causing it all. Wes is sick now, he's the last one. And there's lots of work for him to do at work, so he can't just take it easy for two weeks.

But boy oh boy...while I was sick I ate nothing. For an entire week I had no appetite. First time ever in my life for that to happen. It was an enjoyable novelty.

So my stomach shrank a bit. I'm trying to KEEP IT THAT WAY. It seems an appropriate thing to embrace during this lenten season.

I still cough so hard that I feel like I'm going to black out. I've not been to Church in two weeks....too sick. I would disrupt everything with my hacking and coughing.

But being sick sure has made the time fly...Pascha is only a month away! Time will fly.

Today I was able to get the groceries that needed getting and I cooked some food (fruit salad, and clam chowder made with coconut milk). It's the small things that make me proud.

Pascha will be here soon.

Sunday, March 10, 2013

Meatfare Sunday

Today was a good day. This morning we missed Sunday School. Although we knew about daylight saving Spring forward, and all that, our bodies just did not want to cooperate. But that is OK. We made it to Divine Liturgy and that's the most important thing.

Our family did not stay for the Meatfare potluck at coffee hour because Eric stayed home sick and because we have food issues. It's just easier to eat at home. Lunch was just sandwiches. Usually when we get to meatfare Sunday at our house, we are sort of down to the dregs, and so food was basic today: Turkey lunch meat sandwiches for lunch, Pasta with meat sauce for dinner. And Ice cream for dessert. Dairy free ice ceam that is not homemade is meh, but I pretended.

But this afternoon (I'm so thrilled) I actually had energy and I DID STUFF!!!! I did a bit of mending/alterations on a couple of skirts, and I went to Walmart to get some velcro and elastic and the like...and found some fabric on sale for two more skirts (and that will take care of my summer wardrobe needs).

And then Wes and I went to the Peddler's Mall, and found some treasures. I'm collecting pretty china plates to hang on my side of my bedroom (if I were rich and had a big house I'd wish for my own room. He snores, I toss and turn and good heavens, I want a pink shabby chic rose bedecked boudoir and he just doesn't go for that!)

Home again, dinner. Ice cream. A bit more sewing. It was a wonderful day.

And now, for me since I am already dairy free, the fasting begins. I pray that God gives me the strength to fast more and better and more sincerely than I have in years really confront my passions. I pray for strength. And I will take it one day at a time. I don't expect to be perfect. Lord have mercy.

Saturday, March 09, 2013


This pain is a prison.
It hems me in.
My body is not free.
Pain is exhausting.
Pain robs me of sleep.
A deep ache in my bones.
Bruises inside my elbows.
Shooting niggles of nerve pain through my side, across my back.
Muscle aches in my shoulders.
Bone aches in my hands and arms.
Tingling in my toes.
Numbness on my feet, crawling up my legs.
Shooting pain in my shoulder that limits its range of motion.

And I’m tired.

Pain feels like a cage.
Am I a canary with clipped wings?
Have I even forgotten how to sing?
Do I have a voice?
Can I still think?

My mind is numb, dealing with pain.
I have thoughts and then I lose them.
But most of the time, I am too dull to think of very much at all.
My body does not work.

But my heart does.
Inside my heart, there is light.
Inside my heart is freedom.
Inside my heart there is joy.

Christ is there.

Heaven is there.
All the Saints are there.
And even when I am too tired from pain to think, or to work...I can still BE.
I can BE and I can LOVE and I can PRAY.

O Lord Jesus Christ, Son of God, have mercy on me, a sinner.

Thursday, March 07, 2013

Here We Go Again

Start with the usual pre-lenten post about anticipation: Menu planning. Recipes. Stack of spiritual books I almost never end up reading. Cutting back on electronic media

Whip up some froth about piety and saintliness.

Add in one's own very sinful human reality. Blend with a half cup of daily grind.

Mix thoroughly.

Allow to simmer for two months.


Friday, March 01, 2013

My First Pedicure

I’m such a clod. No, really, I am. A friend invited me to go get a pedicure together, and I thought that would be a good idea. It was lots of fun. But I felt sort of like an elephant in a china shop...or was the a bull? It doesn’t matter.

The first thing I did wrong, is that I wore normal shoes and socks. My friend came out wearing flip flops, which is a logical thing to wear when one is going to get a pedi. It just never occurred to me. I figured they had magical toenail polish drying wands or something.

So, we get to the salon, which was lovely, and in a rather arty part of town, in a refurbished victorian house. Lovely atmosphere. The chairs were big and decently comfortable, with a foot tub attached to the base. It was all very nice. So I picked a color and a foot lotion, and the lady led me to a chair and I rolled up my pants, took off my shoes and socks (of the brown sweaty variety) and sat down. The water was blissfully hot and felt great everywhere except that one spot where I accidentally cut my foot open the other day when I set up the ironing board-with it’s metal base/sharp edge on my foot and made it bleed. The part that was still healing burned like the dickens. But ah, I am great at ignoring pain, so I went into bliss mode and decided to enjoy myself.

A nice Asian lady sat down and started working on my feet. Perhaps she did not speak English. The young man working on my friend’s feet did, though, and we all chatted. My lady had a pinched look on her face. Although I had shaved the fur off my toes before going, my toenails took her twice as long to trim, shape and repair as the attention required for my friend’s toenails. I didn’t really look when the brought out the sharp cuticle trimming instruments. Oh no, can’t look at that!

Then there was the massage, gel. Oh dear goodness, they are gonna massage all the way up to my KNEES???? Ordinarily, for a person with experience this would not be so bad...but me, never having done this before....well, I shaved half way up to my knees. Oh dear oh dear oh dear!

The pinchy look turned into a grim pinchy look. Oh dear. She kept working, though.

So eventually all the scrubbing and buffing and massaging and polishing comes to an end. I get presented with a pair of disposable flip flops (thank goodness!) and she paints my toenails. Lovely coral pink.

Then it’s time to move over to the drying station. I climb down. I pick up my purse and the bottom of my purse smears across my left big toe. Oh dear oh dear oh dear! I sheepishly tell the lady what I did...and stick my foot back on the base of the chair and she re-paints that toenail. Trust ME to botch a professional nail painting job. So I got my purse, my jacket, my shoes...and head over to the drying stand. A minute later, here comes the nice young man that did my friend’s feet...with my ugly sweaty brown socks that had fallen out of my shoes.

Oh dear oh dear oh dear!

“Oh, sorry about that. Thanks.” I don’t look him in the eye. I stuff them into my purse as fast as I can.

Needless to say, I left a big tip.

I’ve alway joked about needing a farrier instead of a pedicure. The reason is, that one of the symptoms of low thyroid is really thick and cracking skin on your feet. There’s a medical reason for the horror. This morning I woke up and found a spot on my feet that cracked during the night. This happens from time to time. So now I have cute toenails and a giant bandage on the side of my foot.

I think I need to do this again someday, though. I could get addicted. And next time, I won’t be such a clod. I promise.

Thursday, February 28, 2013

Nothing to Say

I have absolutely nothing to say, but I am going to say this nothing anyway. The decaf coffee is dripping into the pot this morning, and there are almond flour muffins in the oven. It is Thursday. The world outside my window is gray and wet, except oddly enough, there is a fine layer of snow on both our cars. Nowhere else, just the cars. I have a theory about the ground warming up and about cold metal boxes. We’ll go with that, why don’t we?

The cats are wrestling in the hallway, feeling fat and sassy after their morning meal. They look healthy and fine and all things good about cats. They are extremely good looking cats, but we’ve noted to ourselves that although ordinary and cat-ike, they do not seem to be the most intelligent cats we’ve ever met. But that’s OK. We did not hire them for their brains.

People are starting to wake up. I just heard the bathroom door open, and some freshly washed person has emerged. An alarm clock is going off, predicting the arrival upstairs of one very groggy and grumpy teenage boy.

For my own self, I’d honestly rather be knitting right now, than writing, but I do have some writing related dreams and since I can’t quite seem to get my head wrapped completely around the creation of characters and a plot for a story, this faint effort at a blog post will have to do.

Life is small and ordinary, isn’t it? So many of us live like heroes and we don’t even know it. Many of us love when it is difficult to love, we communicate when we would rather withdraw, we work when we are in pain, and we push ourselves beyond the comfortable. But because life is so small and ordinary we don’t even see this about ourselves, do we?

And now everyone is awake, and the room is too noisy. I have no more thoughts. Nothing else to say.

Saturday, February 09, 2013

In the Middle of a Flare

Yesterday I had what I like to call a “pain day”. I was in pain. I blame the perfect combination of the cold front moving in, and the fact that I had a rather strenuous day of grocery shopping at multiple stores behind me the day before. The pain and extreme fatigue actually started on Thursday evening, and went through the night and all day yesterday. Today I am forcing myself to rest and recover, and setting some small goals along the way, so that my whole day is not wasted.

But I still did some good things yesterday. I had an extended chat with someone about special needs elimination diet food issues. It’s always good to connect with a kindred spirit who also has Autism Spectrum kids...someone who understands. I suppose that connection goes both ways. What a blessing.

After lunch I decided to force myself to do something and so I did something fun that brought me pleasure: I got out my pretty china and I set the table and took some pictures of it. I also made tea and cinnamon scones. I took the pictures and put them on this blog and on Facebook as a virtual tea party. I wished I could invite anyone who reads my blog or my facebook page...especially those in pain, or in grief, those who are lonely and the bedraggled.

The kids and I enjoyed eating the scones for afternoon snack and for breakfast...Ok, I’ll admit it...I made vegetable soup for dinner so that I could also eat another scone at dinner and stay with my calorie budget. Yum.

Today’s discipline involves forcing myself to be still and continue resting a bit. That means not going anywhere until this evening. The pain is greatly diminished...just present around the edges. But it could come flaring back if I over do it. I hope I can make it to Vespers. I had the opportunity to go get my CPR certification renewed today...and for only five dollars! But I passed it up. I have learned the hard way that in a fibro flare, I MUST say “no”...even to golden opportunities.

My only goals today are to bake bread, which I have done, clean up the kitchen, put together my new vacuum cleaner and sit down with some knitting. And this right here fulfills my wee writing goal for the day.

Such is a small life in the midst of a fibro flare. There is goodness, there is beauty and there is love in the midst of the pain.

Friday, February 08, 2013

Thursday, January 24, 2013

Fibro Arms

The mountain of laundry was looming at me. I knew I had to do it, burning arms and all. You see, that is what happens...the burnig arms was one of the first signs to me that I had fibromyalgia, but I did not know it at the time. thought I just has so much laundry to fold that I was getting a good arm workout. I would fold laundry and my arms would burn. Now they always burn when I fold laundry if I’m in a “fibro-flare”.

I had two babies when I first noticed it. I remember mentioning the arm burning thing at a La Leche League meeting. The other moms looked at me like I had two heads when I mentioned that I got lots of exercise from laundry folding. I’m sure they thought I was delusional. Maybe one could define it as such. All I knew is how I felt when I exercised...that’s when your muscles burn, right? That’s how it feels, but instead of lifting weights, you are folding a dish rag. That’s fibro. And instead of dumping the dumb-bells back in their racks and being done with the workout, and feeling pride, you just have another pile of laundry to fold. Chances are you folded the same items two days ago. It’s SO not exciting. I know you know this. You have laundry, too.

Fibro can sure change your day. I thought I was going to get twice as much work done today as I did. I planned on going to Costco this afternoon. I’d already taken two kids to the dentist this morning, and while they were busy getting their teeth polished, I ran over to the Walmart by the dentist’s office in order to grab my “Walmart items” know, the stuff that is cheapest there like garbage bags and cat food... So I felt like my day was moving along nice and efficiently. I was in control. After dropping off the two dentist kids at home, I zipped over to the Walmart near my house because I still needed gluten free pasta and some yarn and the other place did not carry those items. Then I swung by the library, picked up M from work and it was home for lunch. I was so grateful to have B, because when I dropped her off at the house after the dentist, she put some sweet potatoes in the oven to bake for lunch. I was on top of things, getting things done and looking forward to more shopping in the afternoon.

I was going to go to Costco for the meat and fruit and lemon juice, olive oil and butter. Except I didn’t. Suddenly after lunch I was very very tired, and I stayed tired for the rest of the day. I knew I could not drive safely. There’s tired and then there’s the kind of tired that tells you you should not drive the car. That’s the kind of tired I’m talking about. The kids did their school work and I stupidly vegetated. I did a bit of laundry and eventually threw some frozen vegetables and a chicken into the oven for dinner. Dinner was late, and tasted about as exciting as the amount of effort I put into it. The day felt wasted. Now it means tomorrow will be extra busy. So that is how I came to the end of my day with a mountain of laundry that needed to be folded. And only me, with my burning arms, to do it.

It’s called asceticism. It’s called “death to self”. Those of us who are married-with-kids don’t get it in very glamorous forms. And no one remembers our ordinary lives. There’s only one way to get through a mountain of laundry with burning fibro arms: “O Lord Jesus Christ, Son of God, have mercy on me, a sinner.”

Wednesday, January 23, 2013

Vignette number 3: Hungry Ghosts

The ghosts are angry tonight. They are angry with me because I told them I would not feed them anymore. The ghosts are dark and they lurk in that place, the vast uncharted territory of my heart. If I were to map it, I’ve always imagined the map would be a wasteland with the label: “Here Be Dragons”. Dragons, ghosts, ghosts of dragons, monsters of the dark...whatever I want to call them, they are my own.

They say that the best way to get rid of an unwanted animal is to stop feeding it. So, I have determined that the ghosts will not get fed. They clamor, creating a fear inside of me...shaking the cage and screaming at me that if I do not feed them, I will be hungry forever. They scream at me, that I don’t deserve to be hungry, and that I should feed them because by feeding them, I am feeding myself.

But they lie to me. The hungry ghosts have been lying to me since I was about thirteen years old. Looking back, I can see things so much more clearly than I did back then. There’s a name for what was going on with me when I was thirteen. I look at my pictures and I can hardly believe that the girl in the photos was me. I thought I was Jabba the Hut, when in reality I was shaped a lot more like Marylin Monroe. Now, most thirteen-year-olds don’t want to be shaped like Marilyn, so no wonder I felt odd....but the ghosts were born, and they lied to me. I had body dysmorphia. What I saw in the mirror did not match reality. And the ghosts were born.

The ghosts were born the day I was taken to the gyno for an exam, and it was so very very painful that I screamed and gagged at the same time. All the grownups in the room were yelling at me to relax. They said I must remain a virgin forever unless I got cut because I was “too tight”. “Nothing wrong with her periods that losing twenty pounds won’t fix,” the doctor glibly chided as he left the room. I went home and went on my first diet. Shame raged, and the ghosts were born.

I ran. I ran and ran and ran, and still I could not manage to be shaped like the stars on TV. I looked at all the small women, and wondered why I was different. And I ran and binged and ran and binged. Exercise bulimia...that’s what they call it nowadays. Back then it was tear-filled Friday nights crying to my ever-patient mother who waited up for the storm after my babysitting job that always resulted in me eating too many sweets, followed by nausea-inducing runs on Saturday mornings to "make up for it". The ghosts were having a hay day.

“You don’t get to eat. You are fat, You are ugly. You are a loser. You don’t have a boyfriend because you are FAT. FAT FAT FAT FAT FAT.” The hungry ghosts yelled at my constantly, and I would lie in bed falling asleep hungry. I would go to school and be hungry...starve all day and binge in the afternoon when I got home from school. All I fed were the ghosts. I watched my thin friends eating sandwiches, fruit, cheese sticks...good things. All I ever packed in my lunch was two rice cakes with a thin smear of peanut butter, and an apple. I tried to live on crumbs. But the ghosts wouldn't let me.

I did not know how to care for myself. I thought taking care of myself meant drinking diet coke instead of the regular stuff.

And as soon as the running came to an end (I got injured), the weight started to creep. After four babies and a bum thyroid it stopped creeping and just piled. And through the years, the ghosts were with me. Always yammering. Always judging. Always screaming inside my head, full of shame and loathing.

Of course from time to time, I would pull myself up by my own bootstraps and start a diet. I would determine that I’d be good to myself, that this time would be different. But the hungry ghosts who filled me with loathing and shame...they wanted to be fed. Because as long as I fed them, they could keep existing and the cycle of loathing could continue. I could be secure in that comfortable, familiar place where I’d lived for so many years. I never understood why I would sabotage myself. But now I know about the hungry, angry ghosts. The fear I feel when I’m faced with hunger, those are ghost noises, ghost feelings. The anger over all this...when I eat about it, I am feeding the ghosts. Those feelings of helplessness, the desire to throw in the’s all about the ghosts. I MUST stop feeding the ghosts.

And so my new rule: Don’t feed the ghosts. They will starve, they will shrivel, and they will go away. It will take work. I will have to unlearn a thing or two...but I think I can learn to recognize a ghost when I see one, feel one, hear one, think one.

And through all this, I cling to the advice my priest gave me a year and a half ago: Peter, sinking into the water saying “Jesus, save me!” That is SO me. I am Peter. I am drowning in hungry ghosts. And I cry out “Jesus, save me!”

Don’t feed the hungry ghosts.

Tuesday, January 15, 2013

What Do You Want?

Sometimes the process of setting a new goal can shake you up and make you see things more clearly. At least that is what I have been experiencing this past week. I’m taking a writing course, and it is a huge challenge for me. The first thing I realized was that I have been very very bad about setting goals in my adult life. Once I finished graduate school and became a mother, the only goals I had were to fix the next meal, change the next diaper, and...three more times...have the next baby. I’ve been in survival mode and I’ve been pouring my life out for my family and in the process I’ve become a muddle. My one-day-at-a-time existence has allowed eighteen years to slide by, mostly treading the path of least resistance.

Yes, there have been things I’ve learned over the years. I have accomplished some things-most of them domestic. I taught myself to sew with a sewing machine I purchased with wedding gift money. The end result of that effort has been that I’ve made a few wedding dresses and some baptismal gowns for people. People think I’m a seamstress. Perhaps I am. Perhaps I am not. I always know I could do better.

I’ve gotten to be a fairly good cook over the years. I make most everything from scratch...even stuff like mayonnaise and occasionally ketchup. I have learned how to can things like green beans and broth and leftover soups. I do allegry-free cooking...So I have definitely not been a slouch in the kitchen.

I can knit...and I’ve made sweaters, socks, hats, ... lace, fair isle patterns on socks. Again, it’s a homey and domestic sort of thing.

I always have the urge to create try something new. I’ve dabbled in so many things: Folk Art painting, crochet, playing the mouth harmonica, playing the guitar, song writing, embroidery, cross stitch...dabble, dabble, dabble.

But a few things have eluded me: Losing weight, making money, and being organized (and not necessarily in that order of priority). And guess where “society” “our culture” --and the inner shoulda-oughta-why-doncha voice-- puts the emphasis? On being thin, on making money, and on staying on top of things. Because unless I can hit those BIG THREE, I am not a success.


But when I focus on the things I am doing well, then the list of things I want to improve on does not seem so daunting. When I let go of what I cannot control, the things I CAN control seems more approachable.

What am I doing well? Being tuned in to my family’s needs...each person. I’m here. We are here together and I love that. My teenagers have a cameraderie with each other that I’m happy to see. We laugh together, we are silly and we also get some learning done each day. I’m sensitive to the special needs of each one and am quick to try to help them find coping strategies to enhance their successes. (Sometimes this is very difficult, especially when people’s needs conflict, or I lack the ideal resources.)

I”m also feeding my family well. Enough said about that.

We make it to Church. We have family prayers. We read the Scriptures together. That’s another area that I am faithful in.

And glory to God, another thing I have learned to do, thanks to my various illnesses, is to delegate! I went from being the mom who does everything herself, to the mom who makes her kids clean the house....and they do a fine job of it, too. So that’s a success.

Where am I falling down on the job? Well, I am a Fly Lady dropout and a weight watchers failure. And I don’t do very well in keeping up with some of the home school paperwork that the state of KY does NOT require me to do, but which I really ought to do better on. So there’s a pattern here, isn’t there? I don’t like structure, I don’t like limits and I don’t like someone else telling me what to do, even if I’ve given them permission to do so. And I’m a muddle at being organized when it comes time to read up on what services my daughter with autism might qualify for, or to find her a new doctor, or to grade last week’s history assignment. I feel pulled in so many directions, and the things I am weakest on fall by the wayside too easily.

But my biggest struggle of all is setting goals for myself. For so many years my goal was always “this is the year I am gonna get skinny” and I’ve limited myself so much in my own self-perception, that I have honestly had to struggle to get past that, and to ask myself “What ELSE do you want?” What do you want, Alana? What is your dream? What do you want for yourself?

That’s the biggest thing I’m getting out of this writng course I’m learning to ask that question. And learning to sit still, and listen for the answer. In my case, I do some of my best listening at the keyboard. I know this about myself.

Now I just need to get busy and write...and maybe in the doing, I will find the answer.

Wednesday, January 09, 2013

Vignette 2: On Barriers and Grace

I have always gone through my life with the feeling of being an imposter. It’s a strange thing to describe-even to myself. There’s a sense that I am living inside a silicone cube which I cannot get out of. An odd memory surfaces from my High School days: I was an avid jogger for many years, and that turned me into a cross country runner my junior year of High School. But there was a speed barrier in my running career I could never cross. While I was good at what we called “LSD”-long, slow, distance, I could never get my body to build up enough energy and strength to improve my speed, no matter how many hills I sprinted. It just wasn’t in me, no matter how hard I pushed, no matter how many intervals I ran. The uncrossable barrier dogged my steps. I was slow.

Some of the kids on my cross country team told me that the secret key to their better performance was that they lifted weights at the YMCA. This seemed like a mysterious ritual to me, and I had no idea really, how to proceed. Somehow I found myself signing up to do volunteer work at the YMCA in order to earn myself a membership-so that I could work out and improve my running times. That volunteer situation was not a good fit at all. I was utterly intimidated by the place, and at that point in my life American body language and gestures were still often confusing and vague to me, so I was never quite sure what I ought to be doing there. I don’t remember the volunteer gig at the Y lasting very long at all, and I certainly never worked out there. I was confused, terminally shy, and utterly non-assertive. The invisible barrier hemmed me in.

In a way, this above description shines a light on my character. I’m still that person. That I have learned to be a little bit outgoing, to smile at people and to greet them, to ask questions when I”m confused and need clarification...all these things feel like a miracle to me.

There have been times in my life when I’ve felt the invisible barrier hemming me in more than at other times. I think I felt somewhat free during my college years, but even there, I was utterly shy of getting to know some fairly interesting people in my department. I kept my head down and kept to myself for the most part. I always felt a bit lost and out of my element. I was the type of person to play it safe. I was easily led. I would NOT have made a good heroine for a novel of any sort. I’m the boring type that heroines of novels nowadays rebel against being.

But this sad little tale has a point. Here I am, exposing my worst darkest secrets to the world. There’s a reason I’m doing that. First of all, I want to encourage anyone else who feels stuck behind an invisible barrier, or like an imposter, or like they just don’t fit to keep on plugging along and someday you will find a place to fit. There’s room for everyone on this planet. Secondly, I want to say that I believe this feeling of being an imposter, or having an invisible barrier around me has helped me relate to my kids (and husband, surprise surprise) better, who are on the autism spectrum. (Yes, I’ve taken the, I’m not quite “on the spectrum” but I’m sort of close for a “neurotypical”). So, in a way, it has helped me to love.

And so the worst thing...has become the best thing. And that, I can only attribute to grace.

Sunday, January 06, 2013

Theophany Song

He became just like me
clothed in humanity
hungry and tired
so close to harm.
God lay as a baby
in frail arms.
O great mystery!

The Holy Spirit
came down like a dove
the voice of the Father said:
This is my Son,
beloved, in whom I'm well pleased.
O great mystery!

He breathed the air I breathe
such his Theophany
touching the water
the air and the land,
fully God yet he's fully man.
O great mystery!

But the whole universe
cannot contain
Him, so all
is forever changed.
His very touch
makes us holy again.
O great mystery!

O great mystery!
God is a trinity,
a humble deity,
and all things made new.


Baptized in Dirty Water....

Today is Theophany, when the Eastern Church commemorates the baptism of our Lord Jesus Christ in the Jordan River by St. John.

So it is making me remember my own baptism, as it probably should.

I was 12 years old and one night I was lying awake in bed, thinking about life, the universe and everything, and I heard this thought: "You should be baptized. You believe in me, don't you?" For some reason I was scared to tell my parents that I wanted to be baptized, because it seemed like such a BIG THING, and I imagined them giving me the 3rd degree about it, imagined grillings and lectures.

Finally I screwed up my 12 year old courage and told my mom I wanted to be baptized. "Oh, OK. We'll arrange it." That was IT? Where was the lecture and the grilling that I was so afraid of?

Since my dad was a minister, it was easy to find a minister to do the deed. We weren't formally members of the Swiss Reformed Church, so it made more sense to have a service elsewhere.

So, on the 8th of April, 1982, I was baptized by my dad with a small group of friends gathered around, in the Rhine river, in Basel, Switzerland, on a boat ramp. It was extremely cold. Words were said, I got dunked. The water was opaque. It was in the name of the Father and the Son and the Holy Spirit. I was wearing baptismal garments of blue jeans and a dark blue University of Basel sweatshirt. I think the boat ramp was about five blocks from our apartment.

Afterwards we went home pretty quickly and I took a hot bath and got some clean clothes on and I seem to remember a little Bible Study or something happening. There was probably food and hot tea, but since that was more than 30 years ago, my memory fades.

But I remember my baptism every year on Theophany, and on its anniversary.

And also whenever I hear the line in the song "God Love Her" by Toby Keith, I feel a little squiggle...because that ONE LINE fits: "She's a rebel child and a preacher's daughter, she was baptized in dirty water..."

So I don't know if any priest has ever thrown a cross into the Rhine river on Theophany, to bless it, but I do know this: One little girl who wants to grow up to be a saint, and whose life has become a cross was dipped into the Rhine one day. Maybe that's good enough to turn the Rhine into holy water, by God's grace.

Saturday, January 05, 2013

Keeping it Safe

New Year's 'em? Hate 'em? Do 'em? Avoid 'em?

I've been resolutely avoiding new year's resolutions for the past several years. And in the past, I've always had the typical diet, get in shape, get skinny resolutions that the rest of almost everyone in America has.

This year, I have some new dreams, but I don't know that they are necessarily having anything specifically to do with the new year....they are just things that are bubbling to the surface at this time in my life.

Oh, I wish I could tell you my whole story face to face! I would have so much more to tell. Deeper stuff, more personal stuff...things that should not be said on a blog. You know I'm a mom, and one of the things I've tried pretty hard to do is protect my children's privacy somewhat. So, that means I can't just write about what they are doing and what is going on in their lives and the dumb or silly or cute things they have said.

But because it involves my parenting, I also can't share with you my deepest heart breaks and biggest griefs. I have to respect my kid's privacy. Especially now that they are getting older. Those boundaries matter.

So I always feel like I'm holding back here on Morning Coffee, because I am. Last year, two of our big goals that we had as a family came to fruition. We moved house (same city, same section of the city) and we absolutely love where we are living now. It's nice to be out of the apartment and to have four walls and some grass. We adopted two kittens, who have grown into very large cats (a brother/sister pair) with amazing medium length fur. And, our oldest turned 18, and finally because of her special needs, we were able to get her on disability. This is a great relief to us. Additionally, our second daughter got her first job and is doing well in it and enjoying her work, as she continues to homeschool for high school. So there have been some big changes this past year.

So I do know what it is like to have a dream, make goals, and to meet the goals and to accomplish something big.

But what I don't know how to do, is to dream for myself, and set amazing life-affirming goals for myself. I am so close to being the servant who buried his talent in the ground, and then returned it to his master with no interest and no extra income. "I kept is safe, Lord." It is so easy for me to just give up and not even try.

And honestly, I don't really know where to go from "here". "Here" of course being my current role as mom/homeschool teacher/homemaker/wife....I want there to be more to me than this. I need to learn how to dream, and then set goals and set out to accomplish those goals. I have absolutely no idea how to find "God's will"...if such a thing exists beyond the keeping of the commandments, but one thing I do know: I'm tired of keeping my "talent" secret and safe.