Why this blog?

the melody in malady

This is a copy of the very first post. It is the heartbeat of why I write here.

When your whole world suddenly changes in a seeming instant… when you can’t stop your dreams from crashing at your feet… when things don’t make sense and you wonder why your prayers are the ones that keep going unanswered…

Your eyes start searching and your soul starts aching.

You have to find something to ease the pain.

To quiet the fear.

A ray of hope.

A piece of beauty.

Something to hold on to.

A needed metaphor

For a variety of reasons, 2002 marked six consecutive, tumultuous years of pain.  It culminated with my mom and dad both passing away from cancer two months apart.  Despite my typical paradigm of positivity, I grew dispirited and enervated.

I needed hope.

Sugar-coated admonitions dropped flat.  I felt lost.  Just then, I read a chapter in the Bible that talked about how something good can come out of even the hardest of times.  Even more importantly, it didn’t invalidate or dismiss my pain.  One line in particular really intrigued me.

“I will teach her to sing as in the days of her youth.”

What did that mean?  Could it be that this time of suffering could change me for the better?  Was there a chance that I could regain those unjaded, bright-eyed, wonder-seeking lenses of childhood?  Could I possibly shake off the baggage and biases that I may have unknowingly garnered through my years of adulthood disappointments?

Was there really a melody in this malady?

Then things got even harder

Little did I know, however, that my season of hardship had only just begun (see my About Me page for a little bit about the diseases I battle).

In 2009, my health problems were so severe that each hour of my day was devoted solely to pain management.  If I wasn’t in bed, I was hobbling through physical therapy.

My husband Dave and I searched nationwide for help.  Soon into this process, we received dire news from a prospective surgeon.  He told us that there really was nothing prudent that could be done to alleviate my completely debilitating symptoms. There was only one surgical option, and the odds for life expectancy were terrible.  Was that it?  That was the extent of my life?

Dave and I hardly spoke on our long commute home that spring day.  All I could do was close my eyes, put on some unseasonable Christmas music, and try to pray.

As it turned out, that wouldn’t be my true prognosis nor my only option.  At the same time, it also wasn’t the only time I had to face my mortality.

I’m doing far better than I was back then and am very hopeful that things will improve much more.  But I’m not even going to pretend that this road has been easy.

Every single day, I really do need something to hold on to.  I must be able to find the value both within and around me.  This is too hard to not have worth.

Though I never would have chosen this path, I have found treasures here that I would have never known  elsewhere.

“I will teach her to sing as in the days of her youth.”

A literal lifeline

Little did I know that those life-giving words would not only be imagery.  They became literal.

Buoyancy.

Hope came unexpectedly.

Music.

Hope literally came through music.

When I was 11, I discovered my unquantifiable LOVE for singing.  Never had I felt so alive.  I felt it on a cellular level.  But tragically, I forsook that love.  I silenced my singing voice after harsh words were spoken by a couple of influential adults.  It has been a secret and gaping wound cloaked in shame.

If I’ve learned anything from having seen life hang in the balance, it’s that the time to resurrect shattered dreams is not “someday.”  It is NOW.

More on this later, but suffice it to say that the thread of beauty and inspiration that’s interwoven through each day of my medical treatments is my newly found, it’s-never-too-late pursuit of singing and guitar playing.

Now, let me be clear.

I am a straight up beginner.

But it doesn’t matter.

It’s music.  It’s still magical.

It affords solace, power, beauty, joy, and camaraderie.

It emboldens me.

It makes me feel like me.

Learning to sing has not only been a needful metaphor, it’s also my literal lifeline.

We’re stronger together

pkd-awareness-2015
PKD (polycystic kidney disease) Awareness Day 2015

Sometimes uninvited hardship can cause us to traverse a different path in life, often leaving battle wounds and shattered dreams in its wake.  I’m writing from the perspective of chronic illness, but this blog is for anyone who is trying to find hope and value amidst hardship.  It’s for all who are unwilling to allow obstacles to ravage their self worth.

We need a voice.  A collective voice.

A belief that there is more.
Hope still bellows.
We have purpose.

We are still dreamers.

Triumphantly, we will get through…
and on the other side, we will be better.

There IS a most beautiful melody, and it is sung very uniquely within malady.

I’d love to hear your thoughts

Please comment below with any advice or insights that you can offer us.  There’s so much to learn from one another.

If you haven’t already done so, I’d also love for you to tell us a little about yourself on my About Me page.

Special thanks

My most heartfelt gratitude to Alyce Brodoff (www.voicesbyalyce.com), Ryan Dey (my brother-in-law), and Kim Smith (www.inspiredtosing.com) – all extraordinary souls who are teaching me to sing literally.

And my truest thanks to each one of you.  I so look forward to learning to sing figuratively together with you.

xo!
Sase

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Newsletter

Since my health issues prevent me from posting regularly, I'd love to send you a notification of new posts. This newsletter also has a few extra thoughts from yours truly. If interested, please enter your information below, then check your inbox for an email to confirm the subscription. My truest thanks, Sase

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Newsletter

Since my health issues prevent me from posting regularly, I'd love to send you a notification of new posts. This newsletter also has a few extra thoughts from yours truly. If interested, please enter your information below, then check your inbox for an email to confirm the subscription. My truest thanks, Sase

This information will never be shared for third part