What will your verse be?

“…That the powerful play goes on and you might contribute a verse.”

-Walt Whitman (O Me! O Life!)

“What will your verse be?”- Robin Williams (Dead Poet’s Society)

I couldn’t sleep last night. This echoed in my ear over and over again. Dead Poet’s Society has long and forever been my favorite movie, and Robin Williams my all time favorite actor.  But, I must admit neither often keeps me awake unless things are on my mind.

My father-in-law passed away last week.  His funeral was Saturday.  Parkinson’s was ruthless and took its time ravaging his body.  Yet, through the end his spirit never wavered.  During more than one conversation we had over the past few months, he would often say, “God in the front.”  He would tell it to me in English, and in Spanish, but I won’t pretend to be able to even type the Spanish version.   The conversation often led back to the same sentiment.  “Everything went wrong when we stopped putting God in the front.”  He meant in life.  In the world.  In the chaos.  In the anger and the hatred so often around us.  To him it was simple.  It was powerful to hear him explain it.

I realize not everyone shares my faith, and I am ok with that.  What I do wish for everyone is a belief in something that can help you maintain your poise and grace through indescribable agony or just generally difficult times.  Because none of us know what our future holds.  But, as Walt Whitman said, even after we have left this earth, “…the powerful play goes on, and you might contribute a verse.”

What is my father-in-law’s verse?  To me it is everything.  My husband.  My daughter.  Their light.  Their souls.  Their spirits.  Their hearts.  He contributed to this world two of the most spectacular humans.  The powerful play goes on.  He rests now.  But his verse, it has ripple effects.

A very young grandchild of a family friend had a very near miss on a life and death experience this week.  He is recovering.  I spent many hours talking to God about what his verse could be, and how much he could still do here on this earth.  Heaven had enough angels.  It was not the first miracle I have witnessed.

A photo taken by my Dad of a much loved statue. He is forever now one of our guardian angels.

What will your verse be?

I’ve reached a point in my life, where I will not give people the power to affect me negatively.  My older sister has given me this advice countless times, but it is finally starting to register.

Meghan and I have talked a lot about the Nature vs. Nurture debate these last few weeks.  We’ve played what if games with a ton of scenarios.  The thing about this debate is the only truth is, it’s both. Nature and nurture impact who we become.  Sometimes one is more powerful than the other, by no fault or credit of anyone.  But, it’s undeniable that they cross over.  All the time.

Bad things happen.  We can’t always choose those things.

Relationships with both family and friends sometimes sour.  We can’t always fix it.

Health sometimes fails by no fault of our own.

Sometimes there’s a global pandemic, and everything gets turned on its ear.

We often can’t choose what happens to us.

What we can choose is our response to those things.

And often, it is the response you choose that can lead you to peace in the darkest hours.

Life is not easy.  I am not telling you I’m never mad, or sad, or flat out angry.  I’m human.

But, lately I’ve been choosing to spend less and less time in the dark places.  And while I recognize getting to the point where you can make that choice is in and of itself a battle for some, I know that everyone moves at their own pace.  For me I’m at a place where I’m choosing the light.  I’m choosing not to give people power over my happiness.  I’m choosing to put “God in the front.”

I am 4 weeks post op from a major foot surgery, and still non weight bearing.  The other day I went out on my crutches determined to drop a package at the post office and put gas in my car.  Three separate people stopped to offer me help at the post office, and a kind old gentleman insisted on pumping my gas.  I saw so much good.

I choose to think its always there, but it stuck out so much more because I am prepared to seek it.

What will MY verse be?

I’ve been thinking about that a lot.  The truth is, I don’t know.  But, I do know I want to start forming it now.

Having a rare disease, and also just having open eyes and ears has grounded me in the reality that there is no promise of tomorrow on this earth.

What will MY verse be?

I’m not sure yet. But, I’m working on it.  One day at a time.

#beatingcowdens

Anxiety- an after effect, or a symptom?

An interesting “conversation” in one of my online groups this week, regarding increased levels of anxiety and depression conected to PTEN mutations.

This is really how I view the race against Cowden's Syndrome
This is really how I view the race against Cowden’s Syndrome

One of those conversations that make you wonder if it is better to be validated or to fight the idea that this perpetual anxious feeling is actually hardwired into your genes.

I looked up the articles too.  I love to read for myself.  The experiments are done on mice.  I suppose there aren’t enough of us to get a controlled group for a good study, (although there is a drug called rapamycin being studied on humans – but that’s for a different day.)  But, among other symptoms the mice in their mazes did show marked increase in anxiety.  Although.  I have to imagine if I was a mouse in a maze I might get nervous too…

???????????????

Now I have a lot of throughts on this.

I have always been a worrier – highly anxious about most things.  Anyone who knows me knows that to be true.

But, conversely – throughout large portions of my life there has definitely been something to worry about.

CartoonV9991 ChickenOrEgg copy

So, as the chicken/egg thing goes -do I worry because anxiety is a part of Cowden’s syndrome, and even before my diagnosis I have had Cowden’s?  Or do I have acute bouts of anxiety because having Cowden’s gives me so much to be anxious about?

The best answer probably is – both.

I am a rational person by all rights.  Even in the middle of my worst anxiety I can stop and think and KNOW that my fears are irrational.  I can have the absolute belief that God will continue to care for the situation, and for my loved ones, yet still it is often like a crushing weight on my chest, making it hard t0 think, breathe or move.

worry

What I have on my side is that I was raised to keep on keeping on.  Thanks Mom, and Grandma and Pop especially… when the going got tough, we were taught to keep going.  So while I comfort myself with verses about tomorrow having enough worries of its own, and while I am faced with horrendous tragedies of things that cannot be controlled, I am able to press on.

So I can function, and the anxiety does not cripple me.  And, I know the “nature vs. nurture” reasons to explan it. 

But I do know that my daughter suffers too.  Not just with a PTEN mutation, and Cowden’s Syndrome, but also with anxiety.  She is a worrier, “just like her mother” they say.  Yep.  Maybe she is like me because of genetics, or my example.  I can’t really know for sure.

So what to do?

For me, the first step is just acceptance. 

I am a worrier. 

Regardless of the cause, and allthe logical justifications I can give myself – I will remain a worrier.

Then, find an outlet.  I am still working on this one.  I am thinking I like to write – so maybe that will help some.  I would like to get a few minutes to myself now and again.  I used to love to walk.  Maybe one day there will be time for some nice long walks.

I meditate a bit on the bright side.  Be grateful for the “good” that comes with a chronic illness like Cowden’s Syndrome.  I am not referring to the pain, and the surgeries, and the cancers looming, but rather to the “warning” system built in.  Parents would do anything to protect thier children.  How blessed am I that even among the strain of ceaseless appointments and hours waiting at offices and for results, we have a warning system.  I am confident that if we are vigilant, the Cowden’s won’t “get us.”

warning

Stay organized.  Don’t let the bills, the list of phone calls, the shredding, or the sorting to pile up.  It will just keep coming.

Stay ahead of the school projects.  You never can tell where tomorrow is going to land us.

Laugh.  Often.  It is deeply good not only for the anxiety, but also for the soul.

lsughing dog

Recognize you have lots to smile about.

Acknowledge the pain of others and “Pay it Forward” when you can.  I find that  NOT dwelling on our lives here, helps make me less anxious.

Did the Cowden’s cause the anxiety?  Is it hard wired into who I am as a person?  Is Meghan destined to be forever wondering and worrying?  Or, did a life of doctor’s appointments, pain, chronic disease, and general worry, create the anxiety? 

It really doen’t matter because it is here.  It is part of me, and to la large extent – us.  I doubt it is going anywhere.  I think its just my job to control the beast the best way I can, one day at a time.