New Wolf

Today, I was told that if I didn’t drink diet soda, I’d not have Lupus.  I was told that if I just ate protein instead, I wouldn’t need the caffeine.  I was asked if I ate the bananas because then I wouldn’t have a cramp in my left calf that has been hobbling me for days.    I have been told that if I weren’t . . . I wouldn’t . . . all. my. life.

The problem with this thinking is that there are some things that we just don’t have control over.  Autoimmune diseases have “no known etiology” – in medical terms that means “no one knows what causes that”.  Skinny, healthy, athletic people get lupus.  Women of childbearing years in the prime of their lives get lupus.  Fat people get lupus.  Old guys get lupus, though the ratio of women to men with lupus is 10:1, so maybe if I weren’t a woman, I wouldn’t. . .

Wolves see the weak in a herd and stalk them.  Often, the victim doesn’t know they’re  even there until they are being chased and caught and the life drains out of their eyes.  One day, you’re grazing away, being careful about where and what you’re eating and then bam! you’re running, running for your life, the lungs you’ve depended upon now damaged and not carrying you as fast as you need to go, you’re energy reserves being depleted so much faster than you can make them up.  Without help and support from the herd or from a hunter, you’re toast – wolf supper.  Done.

I’ve survived a wolf attack before.  It came for me when my child was only three months old.  It was insidious – a little nausea in the sun, a rash on my face.  A strange pain at the base of my lungs when I breathed deeply.  An inability to do anything with a 5 and 7 combination mathematically without pencil and paper or a calculator.  And fatigue – deep, grinding, make you pass out and sleep three hours at a shot, walk with your eyes closed, feel-it-in-the-marrow-of-your-bones fatigue.  Fatigue so engulfing and complete that your body forces you to cry when you can’t stop and sleep.  Five months after the first inkling of something wrong, I was given three and a half months to live.

I studied everything I could about Systemic Lupus Erythmatosis.  I had to, because every time my lungs shut down and I couldn’t breathe, the ER docs asked me “what makes you think you have Lupus?”  Like I had to do their homework for them.  Every time, I patiently explained all my markers and positive test results.  Every time, I wanted to scream “read my freaking chart!!!”  Every time, all I wanted was to be able to breathe.  I’ll do anything, just help me breathe.

I survived that bout.  Although the treatment gave me cancer.  I got through that, too, now sans bladder and everything around it.  I pee through a straw now, and standing up.  Funny, my husband now chooses to sit when he pees.  Don’t know why, but he just does.

Now, 28 years after the first diagnosis of Lupus, and 16 years after the cancer diagnosis, I’m back at the beginning.  Numbers are up, scarring in the lungs that wasn’t there before.  Can’t breathe well, and the fatigue is becoming overwhelming again.  Two days ago, panic gripped me.  Yesterday, my C-reactive Protein was more that double what it was before after ten days of steroids to drive it down.  I’m still fighting bouts of tears at what I suspect may be before me.  But I have to keep working at my job, keep moving forward.  I’m scared.  I feel alone, though there are friends and loved ones standing at the ready to support me.  I feel alone, because none of them know – really know.

27 years ago, I asked the doctor what I did wrong that caused me to have this terrible illness.  Was it because I was fat?  Genetics?  What?  He, in all his kindness and caring, assured me that I did nothing – nothing – nothing to cause me to have Lupus.  It.  just.  happened.

But he told me something else.  He told me I was a miracle for surviving it in the first place.  That the treatment was experimental and actually worked.  (I was the third they tried it on.  The other two died.)  And then he said, “I don’t know if we can save you if it happens again.”

Tonight, as I try to rest and sleep has fled from my troubled mind, I work to convince myself that there are new advances in medicine.  New treatments.  New things to try.  But I know that when I see the new rheumatologist soon, I’ll have to answer the same question, “why do you think you have Lupus?”  Will I get someone who will understand me?  Who will believe me?  I’m old, I’m fat, I drink diet soda.  Will they want to wait?  Will they be aggressive in the treatment, or will they wait until I’m a shell of myself before trying to forestall the end?  Do I need to update my Advance Directive, fill out a POLST form and make my arrangements?  Update the will?  I did that when I was 31.  Maybe I should check that out.  What if I go and they tell me I’m fine?  I’m NOT fine.  I can feel it in my bones.  But if they say I’m fine and they send me home, how long to I have to be NOT fine?  Until “it happens again” and they can’t save me?

And I tell this to you, dear blog, because I’m pretty sure no one reads you but me, and I don’t want to worry the fam.  I can’t say all this to them.  They need me to tell them I’ll be fine.  That I am fine.  That “God don’t want me and the devil’s running scared” so I’ll be around for awhile – even if I think, in the pit of my gut – that I’m lying.  And if I speak the real that I feel, will they think I’m a hysterical woman?  That I’m overly dramatic?  So, dear blog, you get to hear it.  I have to go out there and keep that stiff upper lip, shoulder the load, move forward.  Really, though, I don’t know if I can when the fear hits.

I look up from where I graze, checking the woods along the edge of the meadow.  I can see the yellow eyes watching me.  I’m poised, ready to run.  But it’s not coming.  Yet.  How long can I stand here with my family in this one spot in time before it comes for me?  I won’t know until it’s halfway here.


Karma and the Politics of Anonymity


Sometimes you read things that just really cement things you already knew.  Like Karma.   Before I was Mormon, I lived my young years in San Diego, and we talked a lot about Karma.  It was the 60’s and 70’s, for crying out loud.  Karma was everywhere.  You get what you give.  Put those good vibes out there so they will come back to you when you need them.  Be nice to other people and they’ll be nice to you.  It’s all Karma, dude.

So I was reading for a class tonight, and Karma got me.  There’s a scripture in the Book of Mormon (you don’t have to believe it like I do, but just go with me there, okay?) that says, “Therefore, my son, see that you are merciful unto your brethren; deal justly, judge righteously, and do good continually; and if ye do all these things then shall ye receive your reward; yea, ye shall have mercy restored unto you again; ye shall have justice restored unto you again; ye shall have a righteous judgment restored unto you again; and ye shall have good rewarded unto you again.  For that which ye do send out shall return unto you again. . .”  (Alma 41:14-15)  And there it was – Karma.  In the Book of Mormon.

I have had reason to reflect recently on the current political climate in our country, and with the advent of social media, I’ve found that some forums for political ideology can be quite vicious.  People post things that are lies, demeaning, and cruel to others who don’t believe as they do.  On all sides of the spectrum.  And people who would NEVER say that face to face feel a new freedom to speak to their true thoughts, unfiltered, impulsive, and angry.  If you read the first paragraph, you may guess my leanings, but really, they’re not important here.  Suffice it to say that during the last couple of years, I have had people I loved, or at least liked, say things about me (or people like me) that I never thought they would think or say to me.  In fact, they never have.  Except on Facebook.  And it hurt.  A lot.  And then, with the mask of the keyboard and screen, they feel free to say and write whatever they like, and hurting and disappointed and angry, I got caught up in it now and then.

But Karma.  Karma’s a . . . .  And again tonight I was reminded that what we send out returns to us.  So I deleted all of my political posts, minus one share from C.S. Lewis, because he was a great man, and I like what he says.  And I don’t care what his political leanings were.  I just liked the post.  It was from “The Screwtape Letters” – and if you haven’t bothered to read it yet, I’d recommend it.  So I left that one.

But remembering Karma, I’ve decided that whatever my political thoughts are, well, Facebook and all who reside there, it’s now nunya.  None ya business.  Because I’m really tired of finding out what people I trusted with my friendship really think about me.  It hurts.  It hurts to know how much I’ve seen and endured in my life and how much I can offer and have it discounted because it’s not the right color or on the proper side of the of the political line.

For all of my politically active posting friends, I just want to remind you that what you send out there comes back to you.  If it’s belittling, hate-filled, self-righteous, cruel, divisive, derisive, wrong, lies, or hurtful in any way, you’re messing with Karma.  And, you may find that the mask of anonymity the computer screen gives you really does give others a clear view to who you really are deep down – who you are when no one is looking.  I’ve seen some of you, and was shocked.  And I looked at myself, and was ashamed.  In fact, I’ve begun my repentance here.

So if I’ve offended you because I don’t see it the way you do, I’m sorry.  I never intended to hurt or offend.  Sometimes I responded to things that just riled my temper.  And I used the screen as a buffer.  But I won’t be doing that any more.  Because I’m in a wheelchair right now, and if Karma comes in the form of a bus, I’m just not fast enough to get out of the way.

On Brokenness

I once had a crystal bowl that I loved very much.  It had been my mother’s, and she handed it down to me as a wedding present when I married my husband.  After she died, it would comfort me as I used it occasionally.  It looked like her – like something she would pick (which wasn’t necessarily something I would pick – we had differing tastes).  I would use it and think of the times when she brought it out for a special occasion and I would think of the love we shared with that bowl on the table.  I didn’t use it often, but it was there, and it was comforting.


One day I came home from work, and there was my bowl on the counter.  Shattered.  And after the horror of the moment passed, my heart was right there next to it, broken into as many pieces as it was.  I picked up the pieces and threw them away, then went into my room and cried.


My son and my husband were the only ones who knew how much that hurt – I didn’t want to hurt anyone’s feelings – but the person who broke the bowl never said they were sorry.  It was like it didn’t matter.  And that act of making insignificant something that, to me, was very significant, broke my heart a little more.  Now, to be fair, I don’t think the person who broke it even realized that it was precious.  It was just a pretty bowl, not used much, and just the right size for what they wanted to do.  They didn’t know how much it meant to me.  They didn’t ask, and I never told them.


We all have things happen to us that break us.  Sometimes it’s just a chip, sometimes we’re completely shattered.  Sometimes it’s mendable, and other times, it’s not.  Some of us are broken quite often, and some not so much, but at some point, we all have that feeling of deep loss, like we’re never going to be the same.


The Fourth of July marks ten years since I became an orphan.  Mom and Dad both died exactly five months apart in 2007.  When my Mom died, I thought I would never recover.  The brokenness I felt at the time seemed permanent, unfixable.  Dad’s passing was almost as bad, but I was comforted knowing he chose to go and be reunited with his sweetheart.  Whenever I see fireworks, I think of their reunion.


In the years since, I’ve found that some of the wounds are healing, but it doesn’t take much prodding to open them up and start the flood of tears again.  That happens less often than the everyday it was back then, but it’s still there.


The thing is, there is always someone who can fix us.  The next Christmas after my bowl was broken, when I was sure it would never be replaced, my son presented me with a new one.  It wasn’t the one my Mom gave me, but it was made all the more precious because he wasn’t the one who broke the first one.  He was innocent, and yet he paid for it.  He replaced what was broken.  He made it whole.  And it was one I would have picked out for myself.  Now, when I use that bowl, I think of that special moment when my son took the time to mend a broken heart, and it’s even more beautiful because it carries with it not only that memory, but the memories I had with the other bowl as well.

I was reading a verse in Isaiah in Spanish on Saturday.  It’s in Chapter 53, verse 3, and it’s about the Messiah to come.  (In English, I can’t just read it, because Handel’s “Messiah” is one of my favorite pieces of music, so I sing it in my head.  Please don’t ask me to read it out loud to you – it’s embarrassing.)  In English, it reads: “He is despised and rejected of men; a man of sorrows, and acquainted with grief: and we hid as it were our faces from him; he was despised and we esteemed him not.”


In the Spanish, it looks a little different, and the meaning of the words sunk into my heart.  Words like “despreciado” and “menospreciado” have to do with the price of someone.  “Despreciado” makes me think of “not worth anything” and “menospreciado” leads my mind to “undervalued”.  And then the term “acquainted with grief” translates to “experimentado en quebranto”, which made me think of that term in a whole new way.  “Experimentado” means “experienced” and “quebranto” means “grief”, but it comes from the word “quebrantar” which means “to break”.  At that moment, I came to realize it meant that the Savior was experienced in brokenness.


Experienced in brokenness.


Now, I don’t know what religion you are, or even if you have one, but if you know me personally, you know that it means a lot to me, but I’m not a real zealot.  It’s just a part of me, kind of like breathing.  But I don’t breathe in your face and get offensive with it.  I’d rather you just sat and breathed with me.  And I feel that faith has to come gently, or it doesn’t really come at all.  So breathe with me here for a second.


Experienced in brokenness.


A perfect being who came here to not only expiate for our sins, but to feel our sorrow, our sickness, our happiness – to understand every human emotion so that he, the only perfect person, could relate.  He knows what it feels like to really, really want that chocolate, but turn it down anyway.  And he knows what it feels like to eat it and then feel really sorry for it the next day on the scales.  He knows what it’s like to be a victim, and to be the perpetrator.  He felt it all.


Experienced in brokenness.


The best part of that is that he understands.  When a woman was brought to him who had committed an act worthy of death, he didn’t condemn her.  He just wrote in the sand.  And waited until her accusers left, with the weight of their own brokenness on their heads.  And then, gently, told her that he didn’t condemn her, but to go on her way and sin no more.  Be better, be who she should be.  But he wasn’t going to toss the first stone.


Experienced in brokenness.


You know, we can all be each other’s saviors, in small ways.  Like my son, who wasn’t guilty, but still paid the debt, we can heal other’s brokenness.  Sometimes by just listening, patiently, without judgment, and letting them know that there are better days ahead.  That they are precious in our sight.  And that they can be mended.  That each person is allowed to break at times, whether it’s a little or a lot, and that, unlike crystal bowls, they can be made perfect again.


Let’s be kind when we come in contact with brokenness.  We’ve been there, and needed that listening ear, that hug, that presence with us until we were ready to talk and let it out.  We’ve all needed someone to believe in us and to tell us we can.  And it’s our privilege to be that for those around us.


And since we’re all experienced in brokenness, we can also be experienced in healing.  It just takes love.


Snake Wake


Pt. Brower

When I was a kid, was a member of the US Naval Sea Cadet Corps.  I learned how to march, shine shoes, fight shipboard fires, give and follow orders, survive a gas chamber full of tear gas (a skill that would be useful during my time in Ecuador), shoot a gun, chip paint, and pilot a Coast Guard cutter.  It was great fun, and I learned a lot.


One weekend a month, a few of us would go and hang out on the USCG Point Brower – that’s her in the picture above.  She was moored at the Coast Guard station at Point Loma, which is one of my “sacred places” in San Diego.  I used to go out to the lighthouse and just find my center, listening to the lighthouse tone, smelling the sea, and watching the ships and boats come and go.


Now, I was horribly seasick as a kid – probably still am now.  In fact, the first few times I was on the boat, I got sick while she was still moored!  I would eventually get my sea legs (somewhat – depending on the seas).  But I loved being at sea and seeing flying fish, porpoises, and, if we had a slow tow, trolling for Bonita off the back of the boat.


Sometimes, the boatswain would let me pilot the boat.  At first, I thought it would be easy, but it wasn’t.  I had to keep us on course, but it took awhile for the rudder to respond.  My attempts to compensate when I would go a few degrees off course would take me too many degrees to either port or starboard, and I would then overcompensate the other direction, which resulted in what the Coasties affectionately called “snake wake”.  A glance to the aft, and you could see a long, serpentine wake.  If you were an experienced pilot, you eventually got used to how long it took the rudder to respond to the helm and could manage a nice straight wake.


But there’s an adverse consequence of snake wake.  Besides the funny undulating wake behind you, generally, everyone who could get seasick would.  Which meant I could only pilot for a short while before I was hanging over the rail, “chumming”.  Which was nice for the Coasties if they were trolling for Bonita on the way home, but not so nice for me.


I learned a valuable life lesson from snake wake.  I’ll bet you’ve already figured it out, but if you haven’t, it’s this: you have to have enough patience to let the rudder answer the helm.  Sometimes, you have to steer your life in one direction, then wait until things fall into place before you quit and go another direction.  So don’t give up on things just yet.  Otherwise, you create snake wake in your life.  And eventually, it makes everyone on your boat sick.


Sometimes that means sticking with the job you have to have until you can get the job you want.  Or living on less until you can live on more.  Or buying the cheap car until you can afford the Maserati.  Or dumping a few toads before you find your prince, or princess.


We set our lives in motion, and we want to be right on course, right now.  I find that with trying to shed tonnage.  I want to start a diet and exercise program and I want it to work RIGHT NOW.  I sweat and starve and deprive myself for sometimes up to a few months (more often a few weeks, honestly) and when nothing happens, I’m decimated.  Snake wake.  Or I decide I want to be a hiker and I hike 20-miler and then get hurt and can’t hike anymore because I didn’t take the time to do the short, easy hikes first.  Snake wake.


We all have it.  And sometimes we, and the people we love, end up over the rail chumming.  At those times, I find it wise to ask a more experienced pilot to help me out.  Your pilot can be anyone who is more experienced at what you’re doing than you are.  The key is to watch your pilot, take the advice you’re given, and apply it.


Now that doesn’t mean you’ll never have snake wake in your life, because every boat you pilot has a rudder that answers the helm in a little different way.  But I guarantee, for every boat, there’s someone who knows how to sail her.  Find that pilot and enjoy the voyage.


And once you’ve got it, when there’s a new kid on board, make sure you take the time to help the kid find the right balance to get the wake straight.  Because it just might keep someone on their boat from chumming.




Sometimes I need a change.  I don’t like the way the things in my life are arranged, so I rearrange them.  It might be the furniture.  It might be how I think about myself or how I treat others.  It might be a path I’m following that just isn’t where I want to go.  So I change it.  And it’s good.

I once talked to a person who told me, “People don’t change.  They never will be anything other than what they are right now.”  And that thought broke my heart.  And I don’t believe it – not for a minute.

We spend our whole lives making changes in ourselves, and experiencing the changes that age and maturity bring.  We find that something about us is confining or that we don’t like it and we get rid of it.  We put it behind us and we move forward.

But I’ve talked to a lot of people who are stuck by things that have happened to them.  Old grievances, hurts, wrongs.  Things they were either the perpetrator or the victim of.  At some point, it becomes an unbearable burden, and they want to put it down and let it go, but they don’t know how to.  They walk away from it for awhile, then come back to it and pick it up again.  The thing is, they come back to it.  Even though it hurts to carry, even though it slows them down, even though it makes them tired and sad to carry it, they do it.  They walk along for awhile, unburdened, happy, and then slow down.  The familiar pain is gone.  It hurts, but it was there all the time, and it’s so weird not to feel it.  So they hang their head, turn around, walk back to it, and pick the cursed thing back up.

The key is to leave it there and keep going.  Don’t look back.  Take the lessons learned by carrying it, the strength you developed, then let it go.  Once you’ve taken it all the way you can and you can’t carry it anymore, put it down.  Let it go.  Leave it there.

Forgiveness gives us the ability to do that.  We forgive the one who hurt us.  We forgive ourselves.  We ask forgiveness, then leave it to the person who needs to forgive, BUT WE MOVE ON.

And when we move on, we are free.  That’s freedom worth fighting for, don’t you think?


Why I Did It

Once upon a time, there was a woman who longed for children.  She was happily married and her life was filled with love.  But something was missing.  She waited and waited, and finally, she found she was going to be a mother.

Once upon a time, that mother held a perfect son.  He was the perfect combination of his parents, and her heart was full.

Once upon a time, she was told that she wouldn’t live to see him reach the age of one.

So she wrote – a legacy.  Something that a small child could hold in his hands and read and keep to perhaps come to know the mother he might not have anymore.  Thoughts that swirled around in her head – snapshots of life, if you will.  Snapshots of love.  Whispered thoughts, never spoken, but written and put away for another day.

That’s why I started writing.  To leave something behind just in case. . . .

I wrote a sacred moment on the day of my son’s birth when I just happened to look around the corner.

When I Peeked


You were born on Easter morning during a war

And Daddy was a Sailor.


A few hours old,

I left you for a moment

With your father.


He, dressed in camouflage green,

Strong and tired,

The battle won.


You, wrapped in a blanket of baby blue,

Wide-eyed and looking.


I peeked ‘round the corner

And beheld

Father and son.


He held you up

And showed you the view from the window.


“There’s the world my son.

Welcome.  I love you.”

He held you safe.


I peeked, and heard, and wept.

Quiet mother’s tears.


I keep these things in my heart

And, once in a while,

I peek again,

And smile.


I didn’t die, by the way, a fact for which I am eternally grateful.  I have watched that child  grow into a wonderful man.  And yet, the legacy I leave isn’t just the things I wrote when he was little.  You see, even though I’ve watched him grow, I still have those quiet thoughts swirling, when it’s quiet, and I can think.  And I’ve lost so many of them because I didn’t bother to write them down, and I find I don’t want to lose them any more.  And I find that I need time to quiet my mind and allow it to think.  Sometimes just to muse on something I’ve encountered, and sometimes on bigger things.

Share the thoughts with me, if you want.  I’ll put them right here.



I had a thought come into my head tonight, after being frustrated by my computer and having to ask my (deeply sighing, long-suffering) son for help.  It nagged at me until I knew I wouldn’t sleep until I wrote it down.  And, I thought, maybe someone else might just feel this way.  So I decided to make a blog.  I’m not very good at setting it up yet, but I’m sure my son can help me.

I’m on the edge of invisible.

That was the thought.

It’s an interesting one.  And unsettling to me.

I take care of the invisible every day.  The ones well past their prime who’s opinions are on the verge of not mattering anymore, at least not to anyone who is not their family.  And even then . . . .

I see it in the way they are treated by the medical profession, caregivers, family members, sometimes.  They talk about them while they are right in front of them.  They make decisions without asking directly.  They determine their fate without consulting them.  Sometimes it’s because they have dementia, and sometimes it’s because the assumption is that if you are past a certain age, you just don’t get it anymore.  Not considered in the process – that kind of invisible.  Patronized until you go away.  Or quit fussing.  Or concede.

But I’m not that old yet.

I’m on the cusp.

I still have game, don’t get me wrong.  I know what I’m doing and have a great amount of experience, but somewhere, niggling in the back of my mind, is the thought that I’m almost obsolete.  That the things I’ve been absolutely sure of all my life aren’t quite so absolute anymore.  That what makes me wise is now considered foolish.

Have you ever heard an old person wonder why they’re still alive, and when you try to tell them something meaningful, nothing comes to mind?  There are no babies to raise, no spouse to care for or love – they’ve gone on.  It’s them, alone.  No job, no purpose, just waiting.  It’s terrifying, if you think about it, because someday, I’ll ask that question myself, and nothing will come to mind.

So what do I do about that?

I will love.

Love is not invisible.  Love is not strenuous.  Love is kind and gentle.  You can love till your last breath and beyond.  Love leaves a mark (just ask Harry Potter).  Love lingers and fills the memories of those left behind.

I will love.

Love is patient.  Love has time.  Love gives.

So excuse me if my complex knowledge of a rotary phone and a Hermes 9 manual typewriter don’t matter anymore.  If you pass by and don’t see me because I can’t figure out the latest tech, know that love doesn’t require technology.

It just requires a beating heart.