The Parable of Fire and Glass

Today I am thinking about my life as blown glass.

Several years ago, I visted the Chihuly Glass Museum in Seattle. If you've never experienced the enchantment and whimsy of blown glass, I would highly recommend a trip to this Suessical world.

Years later, my family and I had the further opportunity to visit a glass blowing studio in Maui where I was, once again, drawn in by the artistry and allure of blown glass. This studio, in particular, aimed to capture the beauty, majesty, and motion of the ocean. 

Pictures courtesy Makai Glass

 

As much as I loved the final pieces (and I did!), I was absolutely fascinated by the process that went in to making the glass. It felt like a carefully choreographed dance as artisans skillfully moved around each other with incredible precision, knowing each step and tool they needed at just the right moments... knowing their end goal from the very beginning. 

Image courtesy of  Makai glass

The glass makers would start with a very small amount of material (a sandy-type substance), rolled on the end of a large pipe, and then stuck it in a blazing hot furnace (2500 degrees!). 

Images courtesy of Makai Glass

Once the glowing, neon-orange orb was pulled out, the glass smith immediately began to blow, roll, bend, twist, and mold it. Just as some semblance of shape would take form, the maker would shove the piece back in the furnace, then, once again, pull out the fiery ball and continue to blow, pull, and bend-- trying to shape it a little more. This process repeated over and over again.

 

Image courtesy of Makai Glass

Image courtesy of Makai Glass

We saw several iterations of shape and size as the glass blowers continued these same steps. Though the artisan had a plan and exact end-goal in mind, it was impossible for a bystander to tell throughout the process what the end shape or color would be. There were several times when I thought, they were near done and assumed that the piece would be a small, orange globe or bowl, when in fact, there was more work yet to be done. We were surprised when, in the end, the final piece turned out to be a large, multi-hued blue vase. It was amazing to see something that started as grains of sand, fired and blown into something so majestic and beautiful.

As we left the studio with a glass piece in hand, I thought about how the scene I had just witnessed was a literal representation of the refiner's fire.

How, too, are we like raw material in the hands of a master artisan-- 

repeatedly thrust into a furnace of tribulation, only to be pulled out and

further poked, prodded, and molded into something beautiful and new.

 

Image courtesy of Makai Glass

How often do we long for our troubles to be over? How often do we beg to be left as a lopsided bowl rather than turned into a beautiful vase, capable of holding so much more? How often do we forget that the Master has a plan for our lives and knows exactly what it takes to shape and mold us into the final creation he envisions?

 

I know this, and, yet, I still find myself crying (begging! pleading!) for reprieve from the fire. Why does it have to be so hot? Why does it have to be so painful? Why do I have to go through it again and again?

 

Some days it's hard to keep the faith. Some days the fire burns too hot. Some days it's hard to trust the plan and trust the Maker. But what blessings are in store for me as I yield to the Master's hands and let him shape me into something more?

Living Life in Limbo

I’ve been living in limbo for almost four years now….  Four years ago I was in the process of expanding my business, planning a vacation for my family, teaching fitness classes, and working towards various personal, family, and professional goals.  Then, one fateful day in October, I collapsed on said family vacation and all the pieces of my life were instantly suspended in space and time.    

It kind of sounds like a movie plot.  Maybe it could be, except the most exciting parts seem to have already happened.  Limbo, where I sit today, isn’t very exciting.  I can imagine the void of my life where all my hopes and dreams are floating in some viscous liquid that’s holding everything in suspended motion.  I’d like to rescue those dreams, but they are just too far away and my head is hammering and my limbs are made of lead and I’m just too stinking tired to move.

It’s raining and thundering outside right now and my mood is matching.  I used to love a good summer rainstorm, but now it just means that the barometric pressure is low and my P.O.T.S./ Dysautonomia is flaring. 

Today I was supposed to be going on vacation with my family—well, actually we were supposed to leave yesterday, but I was too worn out after a doctor appointment, packing, and little sleep.  So we decided to wait until today.  Postponing plans is always a toss-up—is the crudiness I feel today going to be better or worse tomorrow?  Well, I lost the toss up; it’s definitely worse today, so no traveling is happening in the near future.  I’m hoping tomorrow will be better, but, if not, I’ll send my family on without me—as I have for so many trips the last few years.

We made plans for this trip over a year ago.  It’s only a few hours away, but I haven’t travelled that far by car in the last four years, so it was probably a bit of a stretch to think I could do it.  Of course, a year ago when we planned it I thought “surely I will have improved enough by then to go.” 

Ha!

What is that saying?  “You make plans and God laughs.”  I have definitely learned that my plans are not always His plans, and I believe God has a sense of humor, but I don’t think he’s laughing at me right now.  I’m pretty sure He’s crying with me. 

Living in limbo is so hard!  I feel like I’ve put parts of my life on hold until an unknown time in hopes that I might someday feel better.  

How can I make plans if I don’t know how I’m going to feel a year from now, a week from now, or even a day from now?  Honestly, things can change within minutes.  How can I set goals if I have no idea if I’ll have the capacity to achieve them?  My grand ambitions on a good day generally just glare back at me with a menacing laugh on my bad days. 

At the same time though, how can I NOT make plans?  If I don’t make plans, I don’t have anything to look forward to. Without goals I have nothing to strive for.  But having aspirations can also so easily lead to heartache when plans fail.

Yet, I have to keep hoping and searching for something that helps me feel better.  Fortunately/unfortunately, I subscribe too earnestly to the concept of Hope sometimes.  I have one good day and all of a sudden I find myself making plans for future days that I expect to feel good-- only to realize that my medication didn’t help as much as I thought, my CSF fluid is leaking again, or that something so unchangeable as the weather can control my ability to function.

Sometimes I wonder if I am going to live the rest of my life in limbo— never being able to fully plan, do, or be what I want….

*****

I’m sorry.... This post has taken a much more dismal look at my life than I intended.  So, before I drown in misery (think Alice in Wonderland engulfed in her sea of tears), I’ll stop myself now and try to end my ramblings on a more positive note (because sometimes I have to remind myself of the good things too). 

I was re-reading this talk by Elder Kyle McKay this week, and I love his thoughts on the immediate goodness of God that comes while we are waiting in limbo for the bigger blessings we desire.  He says:

“[God’s] time, and frequently His timing, is different from ours…. But my message today is that, even while we are patiently waiting upon the Lord, there are certain blessings that come to us immediately.

"The immediate goodness of God comes to all who call upon Him with real intent and full purpose of heart. This includes those who cry out in earnest desperation, when deliverance seems so distant and suffering seems prolonged, even intensified....

"God also gives immediate hope for eventual deliverance. No matter what, no matter where, in Christ and through Christ there is always hope smiling brightly before us.  Immediately before us.”

I can testify of the immediate goodness of God.  It's the rainbow that comes during the storm.  It doesn't make the storm go away, but it certainly makes it more bearable.  

Sometimes that immediate goodness comes in the form of:

• An inspired message from a friend
• My husband giving me a hug or making me laugh
• A note left on my pillow from my tender-hearted son (and Puppy Puppy)

• The ability to finally fall asleep after enduring hours of a migraine
• Getting an appointment with a knowledgeable doctor
• Being able to leave the house after days of cabin fever
• Having the energy and ability to help or serve someone else
• A quiet feeling of comfort and peace

Despite the bleakness that living in limbo can yield, and though I can’t always readily feel it or see it, I know that “there is hope smiling brightly before me.”  As I lay here in limbo waiting for the miracle that will heal my body, I can still reach for and feel God’s grace in my life as he sends me the tender mercies and immediate blessings I need. 

Post Script: I wrote this post over a week ago and I’m happy to report that I was able to see some of that immediate goodness soon after!  I really debated going, but I did, indeed, make it on our family vacation!  I may have only left the hotel a handful of times and had a few rough days there (and have definitely had some down days recovering afterwards), but I kept my expectations low, and am just grateful for the time I was able to spend with my family.

Learning to Love My Broken Body

Years ago, long before my current 3-year exile in bed with POTS (Postural OrthostaticTachycardia Syndrome), I was casually chatting with some friends. I don’t remember our exact thread of conversation, but something spurred me to blurt out "I hate my body!"  The statement came out with such force and vehemence that I startled myself as well my friends, who looked at me with shock and concern and perhaps that "I think she's lost a few loose screws" look. 

My comment of self-loathing wasn't referring to my body image, my short stocky legs, my desire for a flatter stomach, or anything like that.  I was talking about the feelings of utter betrayal I felt for my body.  At the time I was dealing with severe endometriosis.  Not only was I coping with horrible pain, but I was also struggling with infertility as a result.  Anyone who has gone through that, knows what a deep, dark hole it can create.

Growing up I had been taught that my body was a temple- a gift from God and something I needed to respect.  I had listened and obeyed.  I graduated from college with a degree in health education.  I exercised regularly, ate well, and avoided alcohol, drugs, and other harmful substances.  I had done my part to respect and take care of my body, yet where was the reciprocity that should have insisted that my body take care of me in return?

I truly felt forsaken by this body of mine.  My strongly worded opinion that day revealed the feelings of anger and loss that were brewing underneath what looked, by all outward appearances, to be a perfectly healthy body. 

Though I'm a bit ashamed at my frequent lack of faith at the time, I am happy to report that after years of struggling with that painful disease, we witnessed a miracle.  Our beautiful twins arrived to complete our family, and I was able to have a hysterectomy to rid myself of the endometriosis and pain that had been plaguing me for so long.

Only a few years went by, however, before I started to experience regular bouts of pervasive pain that sent me to bed for days or weeks at a time.  Once again, I felt the sting of betrayal.  What was going on and why was my body not cooperating?  Though we suspected autoimmune issues, I had a hard time finding answers and treatments.

It was in the midst of dealing with these sporadic flares that I was asked to speak on health to a group of women from my church.  This was nothing new-- as a health educator and fitness instructor I had given many such presentations before.  Instead of turning to my standard spiel on the topic, however, I felt compelled to take this presentation in a slightly different direction.  Though I still incorporated some of the typical information on fitness and nutrition, I also wanted to focus on the mental and spiritual aspect of caring for our bodies.  I spent extra time doing research and scouring conference talks for ideas and quotes I could use in my talk.

Here are a couple of the poignant quotes that really stuck out to me.

• “Our spirit and our body are combined in such a way that our body becomes an instrument of our mind and the foundation of our character."  - Elder Boyd K. Packer

• "Our physical bodies are a blessing from God.  We received them for the purposes of fulfilling Heavenly Father’s work….. The body is the means by which we can attain our divine potential."  -Elder Joseph W. Sitati

My cutie patootie twins!

As I pondered the role of our bodies, my mindset began to shift.  I was reminded of an experience I had not long after my mom  passed away.  My twins were young toddlers at the time-- still so also easily excited by the simple thrills of life.  On this particular evening they were playing and squealing with that full-of-joy, contagious laughter that can't help but tug at your heart strings.  As I sat on their bedroom floor, grinning at their excitement, I had the sudden impression that my mom was there with us, and I could sense how badly she wanted to give them a hug.

I love this picture of my mom and son.
She was such a kissy grandma!

As I thought of this experience, I felt immediately humbled.  My body didn't always have the stamina I needed to do everything I wanted to do, but there were still a lot of things I could do that I took for granted-- hugging and snuggling my sweet babies being at the top of my list!

It was the very week after I gave this talk that my health took an even more dramatic turn for the worse.  My body collapsed on family vacation, and I have been mostly homebound and often bed bound ever since.

I've thought about this lesson a lot the last three years as my previously fit muscles have turned to flab with disuse.  My body has betrayed me over and over again.  It has failed to function at the most inopportune times.  It has denied me the time upright that I need to physically care for my house and family.  It has refused to see me through so many of my kids' concerts and recitals.  I have run the full gamete of emotions-- loss, sadness, anger, humility… and even gratitude-- not for this trial, necessarily (I'm not that pious, unfortunately), but for the things I CAN still do. 

It's always a huge win when I feel good enough to leave the house.
Happy day to have made it to the pumpkin patch with my kiddos this year!

• I can work on my computer.
• I can write this blog post. 
• I can listen to and advise my kids.
• I can see and feel the warmth of the sun.
• I can read good books.
• I can care for my own basic needs (most days).
• I can hear inspirational talks and beautiful music and welcome their power on my soul.
• I can empathize and share my love and appreciation for others.
• At times, I can sit and chat with friends or play games with my family.
• Though I now share a lot in common with the physical prowess of my 95-year-old grandpa, I can still, on good days, even scale a flight of stairs.
• And, as previously noted, this broken body of mine can give and receive hugs with those I love.

I made it outside with my ear plugs to watch the fireworks on the 4th with my fam.

I know that God is well aware of my situation.  If my body is an instrument for Heavenly Father's work, as Elder Sitati declared, then I have to believe that, even in my broken state, God still has a purpose for me and a means for me to fulfill that work.  Though I may not be able to be the physically active mom, wife, sibling, friend, kind stranger, etc that I idealistically WANT to be, I can still be the person I NEED to be for myself and those around me as I actively seek direction and listen to that still small guiding voice.   

Yes, I still have times of mourning, anger, and discontentment.  I'm not even sure, at this point, that I can honestly say that I love my body-- but I am working on it.  And I do have a newfound respect and appreciation for it.  I know that as I continue to creatively seek to help others in the ways I am able and focus on all the things I CAN do and everything I have to be grateful for, I will learn to love this broken body.

Flecks of Gold: Finding Joy

I noticed a trend in New Year's resolutions this year-- rather than just setting goals, I saw many people also deciding on themes for the year.  One of my friend's posted that her theme was to "Strive." Rather than feeling like she had to achieve a set number of goals, she wanted to simply work on "striving" to be better and improve in many areas of her life.  I love that idea! 

I've thought a lot about what my goals and life's theme are for this year.  (I know, it's June- I'm a bit behind as usual).  Goal setting is especially hard for me right now-- not because I don't have goals or ambitions (recovering overachiever here!), but because my body has so many physical limitations.  It's honestly pretty soul-crushing to put my hopes into something that may never come to fruition or easily slip from my grasp due to circumstances out my control.  Though my POTS (Postural Orthostatic Tachycardia Syndrome) symptoms have improved a bit over the last few years, there are still many days I can't get out of bed, and a good 3-6 days a week that I am rendered useless when my chronic headaches turn into debilitating migraines. 

  

Photo credit: Sean Peck. This was after a late spring snow storm.
 I think it's a beautiful depiction of blooming despite hardship.

My daily goals are usually pretty simple-- make it through my inbox of work emails and projects, get some very "light" exercise in when possible, enjoy dinner with my family, read to and sing songs with my kids before bedtime.  Some days, even those goals are a little too lofty for me though.  But it's really the failed plans like, "attend my daughter's concert" or "make it to my twins' school program" that are especially hard to swallow. For some reason, after 2.5 years of dealing with the repercussions of this chronic illness, it's still hard for me to grasp the concept that just because I felt good enough to do something yesterday, doesn't mean I will be able to do it again today (in fact, because I did something yesterday, I will probably won't be able to do much today!)

But as I've thought about goals and themes, the word that keeps chasing me down and poking me in the ribs (or sometimes just taunting me) is JOY.  Joy is what I have been looking for the past few years as I've tried to come to grips with my crippled life.  It's what we all seek, right?  It's the seemingly intangible holy grail.  I'm not just talking about the thrill you get on a roller coaster ride, but that deep down warm, happy, content feeling in your heart. 

Photo credit: Sara Young

This chronic illness journey has given me a lot of and ups and downs… and downs and ups and downs and downs. It's hard not to get depressed or lose hope when you feel so cruddy all the time. It can be hard to feel happiness and joy when there's sludge running through your veins and an ice pick chipping away at your brain. 

Not long ago, after a particularly rough string of bad days, I happened upon a talk by M. Russell Ballard.  It was exactly what I needed to hear. 

He told the story of a young man who sold all his possessions and left his home in Boston in 1849 in search of gold in California.  He worked tirelessly, day after day, dipping his pan into the river and coming up empty.  After many fruitless days he became discouraged and distraught. He had spent all his money, put in so much time and effort, and was seeing no reward.  The young man was just about ready to give up when he came upon an old prospector with a bulging pouch of gold.  He ask the old man how he had found so much gold. 

Photo credit: Sara Young

The prospector replied that you just need to know where to look for it.  He then picked up a rock from the young man's discarded pile and smashed it to reveal the flecks of gold within. 

"But," the young man protested, "I want to find  large nuggets of gold like you have in your pouch, not just tiny flecks!"

The old prospector took the bulging pouch from his waist and opened it so the boy could see that it did not hold large nuggets, but thousands of tiny flecks of gold.  He said, "It seems to me that you have been so busy searching for nuggets of gold that, you have been missing out on all the precious flecks along the way."

Sometimes my life feels like it has gaping holes.  I'm sad about missing out on those large nuggets of gold.  I am incredibly wanderlust- I love to travel and have adventures, but anymore I just feel confined in my home and claustrophobic from cabin fever.  I want to  vacation with my husband and family.  I want to go hiking or ride my bike around the lake like I used to.  I want to get in the car and drive myself to a store, spend an hour shopping, and drive home.  I want to make it to all my kids activities and events and help at their schools.  I want to have the energy to go to an exercise class or run around with my kids in the back yard.  I want to see my mom again and feel her hug and hear her tell me everything is going to be alright.  I want to not be light-headed every time I stand up or have anxiety about passing out every time I'm in public.  I want to be able to better serve my family and friends.

But I know that when focusing on those elusive nuggets, I am missing out on all the precious flecks of gold around me.  These are just a few of those flecks that bring me joy:

• I find joy in being a rock star in my own home. (I love when my twins shout "Mom!" and run to hug me every time I emerge from my room.)
• I find joy in getting and giving hugs to my kids.
• I find joy in reading stories to my kids and our nightly bedtime ritual when everyone piles on my bed and we sing songs and say prayer together.
• I find joy in days with blue skies and sunshine.
• I find joy from floating in the pool and staring up into a cloudy sky at sunset.

Photo credit: Sara Young (Sarah's pictures always bring me joy!)

• I find joy in watching my kids make good choices or show kindness to others.
• I find joy in family game night.
• I find joy in hanging out or joking around with my teenagers.
• I find joy in visiting with thoughtful friends.
• I find joy in the days I'm able to feel productive.
• I find joy in the times I can leave the house and return home without incident.

Oh happy day! I made it to the Tulip festival with my family last month.

• I find joy in the matching little electric scooters that my daughter and I got to cruise around the neighborhood. (I can't go often or for long, but it gives me a sense of freedom I haven't had for a long time.)
• I find joy in my amazing husband-- how much he does to make our family and house run, for comforting me constantly, and for making me laugh every day.
• I find joy in the small acts of service I'm able to do or when I can occasionally feeling like I have helped someone else.
• I find joy in my faith and testimony of Christ.

Photo credit: Sara Young

 Russell M. Nelson said, "When the focus of our lives is on Jesus Christ and His gospel, we can feel joy regardless of what is happening—or not happening—in our lives…. We can feel joy even while having a bad day, a bad week, or even a bad year!  The joy we feel has little to do with the circumstances of our lives and everything to do with the focus of our lives."

I testify that this statement is true.  My illness is horrible, but that does not mean that my life is horrible.  I can find joy and peace in my life, despite my circumstance.  I may not be happy every single day, but I can choose to rely on my Savior, have hope, and appreciate the small miracles, amazing people, and tender mercies He places in my life.  I can find joy.

You Lift Me and I'll Lift Thee

"Thee lift me and I'll lift thee, and we'll ascend together." I have found a lot of truth in this Quaker proverb the past few years as I have dealt with the crippling effects of POTS (Postural Orthostatic Tachycardia Syndrome) and autoimmune disease, yet have been lifted by countless friends and neighbors.

One of the things that has been especially hard about my illness is all the things I miss out on, especially with my kids and family.  It is hard to stand by and watch life happen without me.  Just a few months ago my husband took our kids to visit his dad over spring break.  He sent me pictures of them all playing happily at the beach.  I was glad to see them having a good time, but it still hurt my heart to not be there making those memories with them.

A sweet friend of mine, knowing that I was home alone for the week, asked if she could come visit me.  It was a great visit and truly helped to lift my spirits.  What amazed me even more about this act of kindness is that my friend is currently battling cancer.  In fact, it was her last “good” day before her next round of nauseating, life-sucking chemo—and she chose to spend her precious time with me!  Oh, how much that meant to me!

As I have spent the last couple of years fairly homebound and bed ridden, I have been consistently impressed by the number of amazing people there are in this world that are so giving of their time, talents, and selves.  I’m amazed at the level of generosity and thoughtfulness of others.  One of the many things that my time in bed has made more infinitely clear is how much we need each other.  We weren’t put on this earth to live a solitary life, but to serve and to be served. 

Everyone has struggles and heart ache.  Everyone experiences loss-- whether it be death of a loved one, poor health, struggling relationships, loss of job, home, or financial security, or something else entirely.  We don’t all have the same problems (thank Heavens!), but that doesn’t mean we can’t show compassion and empathy for others, no matter what they are going through.

A comment I frequently hear from others is, “Well you’re stuck in bed, so I have no right to complain about my problems.”  Not true!  We all have difficulties we are struggling with, and we can all use support. 

 

Photo cred: Stephanie Ann Portraits

This life is not a competition to see whose problems are the most difficult.  Just like one person’s good fortune in no way diminishes another’s blessings, one person’s trials, does not make another’s less hard or frustrating for them.  And just because someone’s problems may seem minor to one, does not mean that they aren’t a big deal to the person experiencing them.  (I have to often remind myself of this when it comes to my kids and the struggles they are dealing with that may seem inconsequential to me). 

Linda K. Burton said, “We are here to help, lift, and rejoice with each other as we try to become our very best selves…. There is so much more happiness to be had when we can rejoice in another’s successes and not just in our own.  When we seek to ‘complete’ rather than ‘compete,’ it is so much easier to cheer each other on.”

Being the beneficiary of so much compassion has caused me to reflect on my own deeds.  When I was healthier and able to do more, did I?  Was I as aware of those around me that were in need of lifting?  And now that I am less capable of physically helping others, are there still things I can do to be of service?  Since I have been sick, I feel like I have become more keenly aware of others sorrows and needs, yet I often feel so powerless to help.

So, how can I help others when I can barely help myself?

Many have shown me that I don’t always have to physically do something in order to help.  Sometimes a note, a text, or a quick visit has had the greatest impact in buoying my spirits.  Just knowing that someone else cares can make a world of difference.  

Meals, treats, and gifts are certainly a happy surprise (and I have been so amazed at the generosity of others), but I’ve also learned that it’s more important to do something than to do nothing.  When you’re not able to send a meal, at least send at text.  When you don’t have a gift to give, write a card.

There have been so many times that I’ve had a rough day and gotten an encouraging text or note from a friend.  I’m especially impressed with those friends that have been consistent.  Even being surrounded by people, trials can be extremely lonely.  It means so much to know that you haven’t been forgotten.

Knowing what a difference it has made for me, I have tried more earnestly to listen to that still small voice.  If there is someone on my mind, it is probably for a reason.  Even if I don’t have a great piece of inspiration to provide, I can still reach out to say, “Thinking of you today.  Hope you are doing well!” 

I have also become much more emotive with my friends and loved ones.  I commonly tell my friends how much I love and appreciate them.  Previously I may have worried about sounding too corny or cheesy.  I don’t care about that now.  Everyone deserves to hear how incredible they are.

Words can be a powerful tool for good!  In an effort to highlight the good deeds of others, thank those that have been great examples to me, and put forth more positivity into the world, I started doing a “Hero of the Week” post every week (or so) on my Facebook page.  I have loved openly sharing my appreciation for others in my life and hopefully lifting them as well.

Another form of service that I have come to rely heavily on is prayer.  I may not be able to physically help others, but I can always, ALWAYS pray for them.    

Though I have learned it anew, I first realized this lesson several years ago.  My twins were born premature.  Those two babies completely rocked our world (in both the good and bad sense).  After coming home from the NICU they quickly became colicky and would cry for hours on end.  Within a couple months both also developed RSV (a respiratory infection).  They were miserable and so were we.  I remember wondering how two tiny human beings could be such an incredible blessing and such a trial at the same time.  The feedings, diaper changing, fruitless attempts at calming, and sleepless delirium became our new norm.  We went into survival mode, with little time to even shower or clean house.  We could barely care for ourselves and our kids, let alone help anyone else. 

At this same time, in fact just a few weeks before the twins were born, my mom, who lived 200 miles away, was diagnosed with breast cancer and started the rigorous treatments of chemo, surgery, and radiation.  It was heartbreaking for both my mom and I to watch each other struggle from afar and be able to do very little to help the other.  I longed to be in Idaho helping my mom and she longed to be in Utah holding the twins and helping me.  It was at this time that I truly realized the power of prayer for others—and that no matter what my own abilities are (or are not) to help someone else, I can always pray for them.  If I couldn’t be there with my mom, I could at least pray for angels to attend her, and I know she did the same for me.   

I could fill pages and pages with names of people that have helped me and my family the last several years (and I doubt I could ever do an adequate job sharing my gratitude, but if you are one of those people—Thank you! Thank you! Thank you!).  The charity, kindness, and generosity of others has set a beautiful example to me of how to pay it forward.  

No matter our circumstances in life, we can recognize those around us that are struggling and work to achieve the proverb, “Thee lift me, and I’ll lift thee, and we’ll ascend together.”

Why My Illness Defines Me

As a subscriber to various chronic illness forums, I often hear the phrase, “My illness does not define me.”  I have pondered on that statement and asked myself the same question.  Does my autoimmune disease or POTS (Postural Orthostatic Tachycardia Syndrome) define me? 

When I look at my life today, I can’t seem to separate myself from my illness.  I am still me, but I can’t deny the effect of my limitations or the experiences caused by my disorders.  Certainly there are moments in my timeline that only exist because of my sickness.  In fact, most of my experiences these days are defined (or confined, rather) by my illness.

Many of these events and the memories they have produced have not been wholly positive.  For example: 

• Every time I go out in public in my wheelchair wearing knee-high compression socks, dark sunglasses, and noise-cancelling headphones and feeling awkward and conspicuous.  

• That embarrassing time that my wheelchair hit a bump, tipped over, and I found myself prostrate on the asphalt in a crowded venue and unable to get up. 

• That time that I had a decent day and thought I was doing well enough to attend a friend’s party, only to become a public spectacle when I passed out on her couch.

• Or that time that a stranger patted me on the head and told me I was a “pretty girl”-- as if he were speaking to a child or someone mentally handicapped just because I was in a wheelchair.  (I’m sure he had the best intentions…)

• Or those multiple times before my diagnosis when various health care providers accused me of being drunk (I’ve never had a drink in my life), on drugs, or needing a psych consult because they couldn’t figure out what was wrong with me.  And that one doctor, in particular, that got up in my face while having a cataplectic, adrenaline-dump, pseudo-seizure attack in the ER, and started yelling at me that he knew I was “faking it.”

• Or the many, MANY times that I have missed out on my kids’ recitals, performances, games, graduations or family activities and vacations because I was too sick to attend…. Those are the hardest.

These experiences have all been defined by my illness.  But what about me, myself?  Am I defined by my illness?  

I recently saw a quote by Brené Brown that helped clarify this question for me.  She said, “The irony is that we attempt to disown our difficult stories to appear more whole or more acceptable, but our wholeness—even our wholeheartedness—actually depends on the integration of ALL our experiences, including the fails.”

Having POTS has definitely changed my life and changed me with it.  It has made parts of my life harder.  It has provided unsavory experiences (as aforementioned) that I never want to endure again, and some that seem to be stuck, like Groundhog’s Day, on repeat (like waking up feeling disoriented, sick, and drugged every single day). 

But it is not all bad.  Having chronic illness has also refined me.

• Having a chronic illness, and all the experiences that come with it, has made me more compassionate and more empathetic towards others.  I understand what it’s like to not feel whole, and my heart aches for others that are struggling. 

• Having a chronic illness has increased my gratitude.  I have such an appreciation for the little things in life that I used to take for granted.  I am grateful for good days and precious time spent with my kids, family, and friends.  I relish the moments I get to snuggle my kids and celebrate when I feel good enough to leave the house (and return home again without major incident).  

• Having a chronic illness has humbled me.  It’s a difficult thing to not be self-sufficient all the time.  It’s hard to rely so much on others and to accept help when needed.  (I’m still often stubborn.)  It has helped me realize that we are all in this together—to lift and help each other, which has also increased my desire to help and serve others in the ways that I can. 

• Having a chronic illness has allowed/forced me to be creative.  Being a busy-body that has had to spend so much time in bed has forced me to figure out things I can do from bed to feel productive (like write a blog) and search for ways to still feel useful in helping my family and others when I can’t physically do as much.  

• Having a chronic illness has taught me that I can’t take myself too seriously.  For example, when I couldn’t physically walk from one room to another, I had to laugh when my husband had to drag me around on a blanket (mostly so I wouldn’t cry).  I also don’t worry about wearing make-up, doing my hair, or looking nice most days because what little energy I have I prefer to put towards time with my kids, or working, or trying to exercise to help myself improve. 

(I'm gonna admit it... I feel super vulnerable posting this picture
because I still struggle with the image of myself in a wheelchair.
Something I'm still working on...)

• Having a chronic illness has forced me to de-stress.  Pre-POTS I was always a mover and shaker—as well as big ball of stress.  Patience has never been my virtue and sitting still was not a thing I could abide well.  Although I had health issues well before my “great POTS crash of 2015,” I didn’t allow myself the time to rest and recover as I needed.  I pushed through until my body finally gave out and I couldn’t push anymore.  Learning to let go of all that stress I carried around was HARD.  But I now see that a lot of the things I used to worry about, don’t really matter.  And, in many ways, I am a happier person for that.

• Last but not least,having a chronic illness has increased my faith I have always had a strong testimony, but through my experiences, I’ve had to rely even more on my Heavenly Father and my Savior, and I have seen their influence in my life each and every day.

So back to my original question—does my illness define me?  While I am certainly more than just a girl with POTS (or a “pretty girl” in a wheelchair), chronic illness has certainly played its role in making me who I am today —or at least clarified the parts of me that needed a stronger definition.  So my answer to that question would have to be a resounding yes.  It DOES define me.  For better and for worse, my illness is part of me, perhaps just one part, but it has defined my experiences and my life, which in turn, have refined and defined me.