Drama or Miracle…You Choose


Albert Einstein is quoted as saying: “there are two ways you can live your life…as if nothing is a miracle or as if everything is a miracle.”

By definition, chronic illness never goes away; its peaks and valleys create the drama that is your life…and by its nature, chronic illness is dramatic.  It steps onto the stage, swings its cape and demands your attention by announcing the imminent arrival of some new and unexpected complication.

I propose that the application of Albert Einstein’s “miracle” choice will keep the drama that is chronic illness in check.  There is little one can do to prevent the next crisis that will inevitably sneak up on you and snap it’s cape in your face.  But you can do something about it – you can choose how you will respond.  You have the power of choice in your corner.  You can succumb to the drama and play along or embrace the miracle of your life.

Accept the wonder of your strength and marvel that you survive, that you heal, and that you live to see another day; that is truly miraculous.


No one ever said a journey would be fun…

“The hero journey is one of the universal patterns through which that radiance shows brightly. What I think is that a good life is one hero journey after another. Over and over again, you are called to the realm of adventure, you are called to new horizons. Each time, there is the same problem: do I dare? And then if you do dare, the dangers are there, and the help also, and the fulfillment or the fiasco. There’s always the possibility of a fiasco. But there’s also the possibility of bliss.” Joseph Campbell, Pathways to Bliss

New State, New House, New Job…

My precious girl has moved!  Most journeys include some kind of baggage.  Even a trip to the grocery store involves dragging something to and from the store.  As much as she wanted to leave her old friend Lupus behind…well, no such luck. 

She made it through the stress of packing a whole house of stuff.  She managed to survive the death of her beloved dog.  The day after she arrived at her new house, thanks to a nasty storm, she spent the following three long days and nights in 100% weather (with 90% humidity) with no power.  She sent her only child ot kindergarten and volunteered to be the Class Mom.  Then she found a job whereby she can finally utilize her hard-earned Masters Degree and continue her own career journey.   

Throughout the stress of all that comes with a major move, my girl hung in there.  She managed to manage.  She was positive.  She is a warrior. 

And then it happened.  Three months after the move she traveled back to her former home state for a 30th birthday weekend with her girlfriends.  Thanks to a lovely flare, they spent the first night having fun and the next three days visiting Gillian in the hospital. 

There are a truck-load of positives about this new move.  When it comes to Lupus, a larger city means more options for treatment.  We have a lot to look forward to; new doctors, new hospitals, new pharmacies…same ole Lupus.



Another TIA…

And life goes on…THANK GOD!

My precious girl (okay, she’s almost 30) had another transient ischemic attack (TIA) Sunday night.  “Attack” is an interesting word when used by the medical community.  I think I prefer “knock on the door” to “attack.” 

(Knock-knock)  “Hello, I’m TIA.   I’m a clot to your brain and I’m here to let you know you are likely to have a stroke soon.  Oh, and sorry about the pain.”      

So, what is a TIA?  A TIA is like a stroke but not a stroke.  It’s caused by a temporary state of reduced blood flow to the brain.  No damage to the brain tissue.  It can (and has) damaged the eyes and ears.  And it hurts. 

It’s an “attack” to which you have no defense.  Another trip to the hospital (a different hospital this time).  Another ride in the ambulance.  More pain.  Piece of cake.

I understand that TIA’s are fairly common when you have Lupus.  Of course, the fact that this “attack” is common doesn’t make it any easier for her or anyone else who has to put up with Lupus.

My daughter has been through hell this past year.  I’m getting ready to phone her to see how she feels today.  I’m at a loss for words.  I feel my “positive attitude” shpeel has lost its appeal.  I’d like to hug her, to hold her, but I’m two states away.  So, I’ll pray. 

As I punch in the numbers on the phone I find myself humming the end song in Monty Python movie “Life of Brian” – Always Look on the Bright Side of Life.

Some things in life are bad,
They can really make you mad.
Other things just make you swear and curse.
When you’re chewing on life’s gristle,
Don’t grumble, give a whistle,
And this’ll help things turn out for the best…

   (whistle, whistle, whistle….)


Control…A Survivor’s Word

Ah…Control.  It’s a bad word.  It’s the worst of the worst when it comes to name calling, a verbal slap in the face.  Admittedly the word “control” comes with a lot of negative baggage.  But when it comes to Lupus, the word “control” is a positive word.  A survivor’s word.

I know that there are many aspects of Lupus you simply cannot control.  It seems that every time you turn around some doctor is giving you more bad news.  Sometimes you want to give up.  Give in.  What else can you do?

Here comes the good news (wait, did you say “good” news…we’re talking about Lupus, right?)   The good news is that when you have Lupus you can come to a heightened appreciation of the aspects of your life that you CAN control.  You can CONTROL your diet.  You can CONTROL your stress-levels (yes, you have permission to eject any and all who stress you out).  You can CONTROL exercise.  You CAN CONTROL your lifestyle in general.  Controlling these areas of your life CAN have a positive impact on your health, your life and your disease.  Really.

The positive aspect of the word “control” is in the act of decision-making.  You can decide to have a better diet.  You can decide to get the appropriate exercise.  You can decide to learn ways to deal with stress in the best and most productive and healthy manner for you.    

Be fiercely protective about what you can control.  Own it.  Respect it.  

And when people say you are controlling or call you a control-freak, realize that that very unfriendly taunt comes from someone who doesn’t understand Lupus or you.  Take that kind of name calling as confirmation that you are on the right track, that you are taking care of yourself.  And don’t forget to substitute the word “decision” when some mean person uses the word “control” when they don’t like your behavior (usually because they can’t control you!).  They’re just jealous that you have the courage to stand up for yourself. 

Yeah, that’s right.  You’re proud that you’re a decision-freak.  You’ve decided what’s best for you.  You’ve decided that you’re important enough to put your needs first.

BTW…”drama queen” is just another nasty way to criticize your need to defend your health and your life.  So go ahead.  Embrace your theatrical self!

Hospital Schmaspital

Life as you know it stops when you’re in the hospital.  The good, the bad, the ugly…all comes to a screeching halt. You are now in a place where time is out of mind.  And slowly you go…out of your mind. 

You can’t pay bills.  You can’t get to that appointment you made six weeks ago.  You’d rather not post on Facebook that you’re in the hospital (again).  How do you tell everyone that the vaccum of your illness has temporarily sucked you out of your life (again). 

You miss your child, your husband, your bed, your friends, your shower…and ease of access to clean underwear.   

Yes, once again you’ve been sucked into a hellish Neverland.  You cry out for the Pan but he’s a no show.  Not even Tink ventures a flyby in this horrid place.  Sigh.  How the heck do you get out of this hospital???  Time to make a deal with Captain Hook.  Please let me go.   I want to get back to life.  My life. 

You’ll never fix me, you say.  I have a chronic illness for which there is no cure, you say.  Just apply the appropriate bandaid, make sure I don’t die…and please, please get me out of here before this filthy, infection factory called a hospital kills me. 

Don’t worry, you say.  You’ll see me again.  I’ll be back in three months.