Sunday, July 16, 2017

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.”

Saturday, June 24, 2017

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.
Does My Illness Define Me

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 BrenĂ© 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.  



Sunday, May 14, 2017

Why I Choose to Love Mother's Day (from a Perfectly Imperfect Mom)

Mother’s Day evokes a lot of mixed emotions for me, as I know it does for many others. 



As a child, I loved Mother’s Day.  I loved the opportunity to show my mom how much I adored her.  This was usually accomplished with a rudimentary card plastered with hearts, homemade coupons for hugs, kisses, and extra chores, and a bouquet of dandelions from the lawn and lilacs that were cut off our lilac bushes in the back yard.

As a teenager, however, I discovered that my mom hated Mother’s Day.  I couldn’t imagine why!  Besides the sneezing fits and watering eyes from her allergies to the weeds and flowers we gave her, didn’t she appreciate the gifts, songs, and outpouring of affection she got from her kids?  It wasn’t until I was a mom myself that I understood the negative association that many women have with Mother’s Day.

Instead of basking in the glory of being a mom, grandma, aunt, sister, or woman, Mother’s Day has, for many, turned into a day of guilt and an examination of shattered expectations.  At church and on social media we hear about idyllic mothers who have sacrificed everything for their kids—raising the bar for moms everywhere to live up to and adding to that never-ceasing mom-guilt we all carry around.

Additionally, rather than a day for respite, Mother’s Day is oftentimes only accentuated by the mundane motherly tasks that don’t exactly fill our hearts with joy.  Whether it be getting up with crying kids, cleaning up toys, making dinner, or wiping those dirty bottoms, it sometimes makes it hard to cherish everything it means to be a mom.



Having lost my own mother a few years ago, Mother’s Day has also become one more poignant reminder of the gaping hole in my life and my heart— that my own personal cheerleader is no longer a phone call away to buoy me up and tell me that everything is going to be alright.

Being a mom is hard and sometimes it doesn’t always feel like there is a lot to celebrate.

However, my perspective has changed a lot in the last couple of years since becoming home bound and often bed bound with POTS (Postural Orthostatic Tachycardia Syndrome) and autoimmune issues.  You would think the fact that I can now do LESS as a mom would make the ever-present mom guilt even worse—and in some respects it has.  There are certainly days that the “dark side” works hard on me to admit defeat amidst my crumbling losses.  But the lessons I have learned about letting go and celebrating the little things in life has also been liberating and provided clarity about my role as a mom.   



Being a chronically ill mom, I’ve had to drastically lower my expectations of myself (which has been incredibly hard for an over achiever and previously aspiring wonder-woman).  I’ve had to learn to let go of a lot of things that I want to do and be.  I’ve learned that many of the things I used to feel mom-guilt about don’t really matter that much.  I’ve learned to cherish the moments I have with my kids, and appreciate the days I am able to spend time with and help them (even if it is just wiping a dirty bottom).

As President Monson has reminded us, “If you are still in the process of raising children, be aware that the piles and piles of laundry will disappear all too soon and that you will, to your surprise, miss them profoundly.”

So with all this in mind, I have decided to change the way I view Mother’s Day.  I have decided to make it a day of thanksgiving rather than a day of comparisons and shattered expectations.  I have decided that I want to relish the time that my kids are still young enough to give me hugs and kisses, make homemade cards, and pick dandelions from the lawn.  I have decided to embrace Mother’s Day as a day to rejoice in my sacred calling as a mother and appreciate the sweet spirits that God has given me stewardship over.



I know that I am far from the perfect mom.  I recognize that, even in my condition, there is still a lot I can do to improve.  I also understand that there are a lot of things out of my control that I can do nothing about, so I shouldn’t worry about them (sometimes easier said than done). 

M. Russell Ballard said, "There is no one perfect way to be a good mother.  Each situation is unique.  Each mother has different challenges, different skills and abilities, and certainly different children.  The choice is different and unique for each mother and each family.  Many are able to be “full-time moms,” at least during the most formative years of their children’s lives, and many others would like to be.  Some may have to work part-or full-time; some may work at home; some may divide their lives into periods of home and family and work.  What matters is that a mother loves her children deeply and, in keeping with the devotion she has for God and her husband, prioritizes them above all else."

In case you missed it the first time: “There is no one perfect way to be a good mother!”  While there are certainly plenty of wrong ways (most of which would land child protective services at your door), there is not just one right way to mother.  What is right for one family may not be right for another.  What is right for one child, may not be right for another.  Thus, there is no point in comparing! 



Heavenly Father gave MY children to ME, so He must have the confidence that I am the right mother for them and their needs--despite my faults and my short comings, and for me, specifically, despite the fact that I am mothering from bed most days.  I am the mom that was divinely selected for my kids and they were divinely selected for me, and that is worth celebrating!   

So on this Mother’s Day, I choose to appreciate this day for what it is—with no reliance on unrealistic expectations of myself or anyone else to make me happy.  I choose to be happy because I am a perfectly imperfect mom who recognizes my faults, strives to improve, tries to let go of the things I can’t control, appreciates the tender, happy, and not so happy moments I share with my family, and loves the heck out of my kids. 

Friday, April 14, 2017

Being Alright - No Matter What

I had the privilege last week of being interviewed for an amazing project called Women like ME, that focuses on connecting women through their stories, perspectives, and faith. 
One of the questions I was asked was how my experiences have helped me draw closer to Christ. 

As Easter weekend draws near, I have appreciated the opportunity to reflect on this further. The last decade-plus has felt like one trial after another in dealing with endometrioris, infertility, the death of my mother, and now autoimmune issues and POTS (PosturalOrthostatic Tachycardia Syndrome) that have left me homebound and often bedbound. In all things, it is my faith that has helped me cope and push through.

Being sick in bed is an incredibly lonely place to be—even surrounded by loving and supportive friends and family. One of my sweet friends, Mickelle, currently going through chemo, was able to pen the thoughts much better than I could’ve. She said, “I am lonely because this is my trial-- something I have to experience and do all by myself. I can’t, no matter how much I want to, pass off part of this to others.”

Although others can sympathize and empathize and do their best to support me, no one around me knows exactly what I’m going through or has experienced exactly what I have experienced in the same way I have experienced it.

Yet, I have come to the same conclusion as my friend—“there IS one person who understands” …the Savior.  He is the only one that knows exactly what I am feeling and there are many times that He is the only one that can help.

Source: Lds.org


It’s been 18 long months since my initial POTS collapse that turned my life completely upside down. For the first four months I could barely make it out of bed. I often couldn’t even walk the few feet from my bed to my bathroom without collapsing. It took so much effort to talk or listen or even think! My brain was so clouded and foggy all the time. Yet there were so many things left hanging on the line in my life—so much we had to figure out and so many important decisions that had to be made. 

How do I care for my kids and family? How do I fulfill my church, school, and home responsibilities? What treatment options do I pursue? And one of the most pressing was, as a business owner, how do I continue to run my business? Not only do we rely on my income, but I had legally binding contracts and obligations to fulfill. It wasn’t something I could simply walk away from. I was so wracked with the stress of this weighing on me and my muddled mind. My usually creative and logical brain tried to run through various scenarios, yet it was so difficult to see through the muddy mess. There didn’t seem to be an obvious, simple solution; every potential path only presented more immediate work and stress—two things I simply couldn’t handle. 

In the midst of this frustration and despair, my dear friend Marci (no stranger to trials, having fought cancer multiple times) came to visit.  She looked me straight in the eye and said, “Katie, Jesus is really, really smart. He knows exactly what you need to do.”

This was exactly what I needed to hear! Sure I had been praying my heart out for help and answers, but had I been trusting that the answers would come?  I was so caught up in my own anxiety and fear, I was forgetting to exercise my faith.

Faith is more than just turning to the Lord, but it’s also trusting and believing that everything will be okay—no matter what. 

A few years earlier, when my mom was diagnosed with terminal leukemia, I struggled to come to grips with the fact that she was dying. One evening a group of young women came to visit her to cheer her up.  As she sat out on the porch on that warm summer eve, she bore her testimony to these ladies that she knew that she was dying, but she knew that everything would be okay, no matter what.  She knew because of her faith in the gospel and Jesus Christ.  As she said the words, the spirit also bore witness to me of this same principle. As hard as it was to watch my mom pass away (and still hard to not have her here), I knew that everything would be okay.  It would be okay because of Jesus Christ.  He overcame death, and sin, and sadness, and loss, and grief, and pain so that we can also.


My faith had been strengthened then through the experience with my mom, yet here I was in another crisis and already forgetting this lesson. My friend’s poignant words that day reminded me of what it really means to have faith.

There is no question too complex for Him to answer, no mystery too great for Him to solve, and no disease too wide-spread that He can’t heal it. Sometimes we have to take a step into the darkness before we can see the light. Even though I can’t always see where I am going, someone else can, and I can receive direction from Him if I so seek it. What sweet reassurance that brings!

Of course, my undying hope was then (and still continues to be!) that I would be healed. But knowing that Christ has the power to heal us, does not always mean that we will be healed, or at least not in the way we may want. It wasn’t the case with my mom, and unfortunately hasn’t yet been the case with me either. However, even though I am not physically healed, all is well.


Now, 18 months later, I’m still dealing with this chronic illness, but it’s easier to look back and see how, even though I’m not fully healed, I have been blessed and received answers to prayers in so many ways. Although my life has been pared down dramatically, what remains at the core is still fulfilling. I have been sustained and upheld in the ways that I have needed most. My brain can function again (for at least a part of most days). I am miraculously still able to run my business. I am spending quality time with my family and able to hug, snuggle, and comfort my kids. I am finding little ways to serve and lift others. I am certainly more grateful and appreciative of the good days and tender mercies my life has offered.  And my faith has grown ten-fold. 

So at this Easter time, I’d like to bear my testimony of my Savior. At those moments that have been fraught with cold and darkness, He has shown me warmth and light.  On those days when I felt of little worth to my family or the world, He has sent others to buoy me up.  On those nights when I have cried out in exhaustion after hours of tremors running through my body, He has stilled them and stilled my soul. I am so grateful for a testimony of the gospel, for my Savior, Jesus Christ, and for the knowledge that everything will be alright—no matter what. 

Sunday, February 26, 2017

Mountains to Climb

A Facebook memory popped up this week with a picture of me smiling, hiking down a mountain with a pack on my back.  This was me 7 years ago, embarking on a four-day hike down the Grand Canyon.  My first thought as I looked at the picture, as with many of my previous memories, was envy of my former self—a longing for days gone by when I could wear a pack and hike a mountain.  These days, with my autoimmune issues and POTS (Postural Orthostatic Tachycardia Syndrome) just climbing a set of stairs about does me in (stairs are my nemesis!). 



However, there's much more to this picture than meets the eye. I had no idea of the grueling ordeal that was soon to come in the days after this picture was taken.   

I have always had a love for history—there’s a lot of lessons to be learned and parallels that can be made by examining the past, and this particular story is no exception.  This Grand Canyon trip ranks among the toughest physical challenges I’ve had.  I’ve alluded to it a few times in other posts, and although I could summarize in much less detail, I think it’s a story worth re-telling to the full effect, so here it goes:

Hiking the Grand Canyon


To set the stage, let me just say that I have never been super outdoorsy—Yes, I loved to ride my bike on the groomed trails around the lake, or go for day hikes in the mountains, but camping (and going multiple days in the dirt without showering) has never had much appeal to me.  So agreeing to go on a four-day back-packing trip through the Grand Canyon was kind of a stretch out of my comfort zone.  Also, I had just had a third laparoscopic surgery a couple months earlier (trying to cauterize my painful endometriosis, once again).  So going into this trip, I hadn’t been able train as much as I would’ve liked post-surgery and probably wasn’t as prepared as I should have been.



Things started out fine, but a few miles in to our descent I stepped on a baseball-sized rock that rolled underneath me.  My ankle went one way and my knee went the other.  Surprisingly, my ankle was fine, but my knee was tweaked a bit.  I rested for a few minutes to “shake it off” before continuing on.  In all honesty, it seemed pretty minor and had I not hiked another 5 miles at a very steep decline with a 40-pound pack on my back, I probably would’ve been fine.  But by the time I reach the bottom I was cringing with each step.  (A trip to the doctor after arriving home confirmed a pretty bad knee ligament sprain). 

Day two at the bottom of the Grand Canyon was beautiful.  Although it had been cold and snowy at the top of the canyon, it was 65 degrees and blue skies at the bottom.  Our party took a day hike out to a waterfall, but I opted to stay close to camp and let my knee rest.  With the beautiful weather, I enjoyed the day and thought, “I can totally do this camping thing.”

My dad returned from the waterfall hike not feeling well and shortly after started vomiting—whether a stomach flu or severe dehydration we weren’t sure, but he continued to get sicker, weaker, and more dehydrated throughout evening.  I was worried.  He’d had a heart attack several years earlier; I was terrified that all the exertion and the sickness would bring on similar problems.  He was still sick when night fell and had to stay close to the bathrooms (amazingly, and thankfully, there are flush toilets at the bottom of the Grand Canyon), but they were not very near to our camp.  I was worried about letting him stay there by himself.  What if he had a heart attack and no one was around?  Not that my limited CPR skills would be much good if needed, but, nonetheless, I sat on the cold ground outside the bathroom with my dad for the better part of the night. 

By day three our beautiful weather had disappeared, and a cold wet drizzle descended upon us. Although we were supposed to be starting our hike out that day, our group decided it was best to wait one more day and let dad rest and recover.  We sought out some park rangers and asked if there were any other options to get dad out of the Canyon—mule, helicopter, etc.  We were told that unless he actually did have a heart attack, in which case the cost to be air-lifted out would be an astronomical amount that we’d be paying off the rest of our lives, the only way out was to hike. 

I was dead tired after my night of no sleep.  I went back to my tent to take a nap.  When I woke up, I was completely soaked!  The tent had leaked.  Not only were my sleeping bag and pack wet, but my shoes had filled with water too.  I burst into tears!  I was so tired and cold.  My knee still throbbed, and now everything I owned was soaked through and there was little chance of being warm or dry for at least few more days. 

That evening the park rangers sought us out to tell us that a huge storm was heading in and they wanted everyone out of the camp as soon as possible.  Due to the steepness of the trail, we had planned to take a longer, somewhat less steep, trail out of the canyon and to split that hike up into two days.  However, with the storm, we decided that it’d be best to make the two-day trip all in one day, leaving the following morning.

The rain continued to worsen throughout the night.  We had to double up like sardines in the remaining “less wet” tents and, needless to say, it was another long sleepless night. 

Morning finally came and we packed up our muddy tents in the rain, put on our sopping gear, and started our trudge up the mountain.  The trails had turned into little streams, with the water carving them down into a V shape with steep sides.  We had to hike with our feet awkwardly sloshing and slipping at odd angles through the mud on either side of the V-shaped trail.  You can imagine how great that was on my sprained knee.  At times we had to wade through calf deep streams that had completely washed over the trail.  Sometimes my foot would sink so far into the mud, I had to physically use my hands to help pull my leg up out of the mud.  More than once, my foot emerged, but my boot stayed firmly rooted in the sludge.  (I won’t even go into detail about the blisters and lost toe nails from that day…)

About half way up, we stopped to eat soggy granola bars for lunch.  After resting for those 15 minutes, I tried to walk again, but my injured knee had locked up.  It refused to go any further and every step on the muddy trail was torture.  I burst into tears once again.  How the (insert expletives) was I going to get up this mountain?  I was so tired, so wet and muddy and cold, and my knee hurt so bad! 

After letting myself cry for a few minutes with my husband standing by trying to be reassure me, but with little he could actually do to help (he’d already taken much of the weight from my pack for me), I finally had to pull it together and remind myself that there was no way out except to hike (trudge, trod, slog).  So I finally took a deep breath, told myself, “I can do this,” turned on my iPod, and started back up the trail.

Not much further up the rains turned to heavy snow and ice—a blizzard.  As everything we owned and wore was already soaking wet, we pretty much turned to ice as well.  The mud mixed with slush and patches of slick ice.   As we hit the last few miles with endless steep, icy switchbacks, I tried to keep my eyes on the prize.  “I just have to make it to that next bend, then I can take a little break.”  And at the next bend, I’d look to the next bend and repeat the same thing.  Most of the time when I looked up, I couldn’t see the top—just more endless rows of switchbacks.  How much further did this mountain go?!  Would it ever end!

At one point my iPod shuffled to the Matchbox 20 song, “Let’s See How Far We’ve Come.”  I stood at a bend in a switchback.  While I couldn’t see how far I had left to go, I looked down the mountain and could see how far I’d come—miles of trail unwound below me.  Wow!  Had we really come all that way?  I took courage and strength in that sight while my own personal sound track was playing.  Instead of focusing on what we had left, I kept repeating over and over again, “See how far we’ve come!” 



As we hiked I thought a lot about the pioneers.  I suddenly had a much greater empathy for them.  This was just a four-day trek.  I couldn’t imagine the feats they had been through over weeks/months.  Additionally, I knew that I had a restaurant and a hotel room waiting for me at the top of the mountain with a juicy burger and a warm shower.  The pioneers had arrived to an empty valley where they still had to build their own homes and grow their food.  If they could do that, I could certainly do this!

As long as this blog post is now becoming, it is not nearly as long as that 10-hour hike up the canyon.  But, as I’m sure you’ve guessed, I did eventually make it out alive (and, in case you are wondering, so did my dad, who later confessed to me that he was, indeed, having chest pain for most of the trip.  Thank heavens nothing major happened!). 

Lessons Learned

For the sake of brevity (oops, sorry, too late for that!), I’ll just point out a just few of the lessons I’ve been reflecting on as I’ve revisited my Grand Canyon memories. 

1   1.  Rose Colored Glasses

So back to the present day, as I mentioned, when my Grand Canyon Facebook photo popped up, my initial thoughts were of envy with the reminder that I once had the ability to hike, walk, climb, run, etc—something that I can no longer do (at least not without constant fear of passing out).  Yet in reality, that was a harrowing experience and not a challenge that I would ever like to face again. 

Sometimes when looking at the past, I find myself looking through rose colored glasses.  Because I’m still grieving for all the things I can’t do now, I often only see the “grass is greener” things from my past.  I forget about the struggles I dealt with then.  At the time of this hike I had actually been dealing with a lot of other trials.  I have already mentioned my multiple surgeries for the crippling endometriosis I dealt with.  I had also been struggling from years of infertility and failed treatments, and some intermittent depression as a result as well.  

My life in the past wasn’t as perfect as I sometimes remember.  Yes, I had more physical abilities than I do now, but I also have some things now that I didn’t have then (perspective, stronger faith, deeper friendships, greater awareness of others, time to write really long blog posts…). 

I can learn from the past, but it doesn’t do me any good to dwell on the things I can’t bring back or change.  I have to keep moving forward.


2.  If They Can Do It…

As I thought a lot about the early pioneers on my hike, I similarly gain strength today by knowing that “others have done it.”  Maybe they don’t have the same problems I have, but since my illness, I have become so much more aware of the trials that those around me have.  I am in awe of the strength I see in my friends that are battling cancer, other health problems, financial struggles, or loss of loved ones.  Their fortitude and courage in the problems they face help me in mine… if they can do that, then surely I can do this

     3. I am Stronger Than I Think I Am

From that hike, I found strength in myself that I didn’t know was there.  It was one of the hardest things I had done, and I survived.  It was a testament that I really could do hard things.  Additionally, in remembering the dozens of silent prayers I sent up with each step of my journey, I would be foolish to not recognize that it wasn’t just my own strength I was relying on, but the strength of the Lord to help me through that ordeal as well.

Doing hard things is not just about physical strength, but mental and spiritual stamina as well.  One of my favorite talks of the same title, “Mountains to Climb,” by Henry B. Eyring, reminds us that “If we have faith in Jesus Christ, the hardest as well as the easiest times in life can be a blessing.  In all conditions, we can choose the right with the guidance of the Spirit.  We have the gospel of Jesus Christ to shape and guide our lives if we choose it… We can live with perfect hope and a feeling of peace… The Savior has promised angels on our left and on our right to bear us up.  And He always keeps His word.”

I have felt those angels, both heavenly and earthly.



4   4.  Let’s See How Far We’ve Come

Today I still climb mountains—my mountains are just different.  My mountains are making it through a painful and lousy day/week/month while trying to hold on to a positive outlook and not lose hope or faith.  There are days where I break down and cry, “How the (many expletives) am I going to make it through this?”  But just like on the trail of the Grand Canyon, I realize that I don’t have many options.  I can sit down and wallow in the mud, or I can keep trudging, keep trying, keep seeking out something that is going to help as I continue to work on my faith and endurance.
 
And some days, I can only look as far as the next bend and tell myself “I just have to make it through today!” 


Although I can’t see the top of the mountain or the end of this journey, I can look back at the path I’ve come and gain strength and hope from seeing the trail I’ve traveled.  It’s been a rocky road, but I’ve come a long way.  Although there have been a lot of ups and downs, I have seen improvement since my first diagnosis (when I couldn’t even walk from my bed to the bathroom without collapsing, and I certainly wouldn’t have had the cognitive ability to write this ever-increasing lengthy post).  I have also made progress on the road to acceptance and emotional healing.  Although there may not be a true summit and complete physical healing for my condition in this lifetime, I can keep climbing, have faith, and try to take heart in the plateaus and vistas along the way.

Sunday, January 1, 2017

My Hallmark Movie: What Matters Most

What do you do when you are stuck in bed for the better part of 15 months?  Watch an awful lot of lot of Hallmark movies, of course. While they are certainly predictable and perhaps a little too saccharine at times, they are low intensity, don’t require much thought, and upbeat—all things that work well for me right now. Having seen dozens of these movies the last year, I’ve discovered they all follow the same pattern. 
It goes like this:
  • Life is going well
  • A sudden change turns everything upside down
  • Main character slowly starts to adjust and find happiness again
  • Another dramatic plot twist occurs that generally requires the main character to make a tough decision, reflecting on the deep, heartfelt lessons she has learned over the course of the show and what really matters most in life, and oftentimes choose between her old life and new
  • A decision is made and the best possible outcome emerges.  Everyone lives happily ever after.
One common subplot of the Hallmark movie is the dream sequence.  The main character wakes up to find that her life has totally changed—for better or worse.  At the end of the movie, she awakens, once again, to realize the “new life” was somehow just a dream and she is able to go back to her old life with a new found perspective to enrich and improve her life.
****
About a month ago I attended my son’s Eagle Court of Honor.  He has been working diligently on getting his Eagle Scout award for the last 5 years, including earning numerous merit badges and culminating in a 40+ hour service project that involved his family, neighbors, and community.  I was so proud of his accomplishment and so eager to attend his Court of Honor.  Yet, I showed up and was immediately overwhelmed by the light, noise, and chaos around me.  I started to crash and ended up passed out on the couch in the foyer.  (Fortunately, I was able to make it back in just long enough to see him be given his award, before my husband promptly wheeled me out and back home.)
I came home upset and discouraged, once again, at my limitations.  The thought occurred to me, “Why can’t my life be like a Hallmark movie?  Why can’t I just wake up and have my old life back!? (And, of course, still remember all those great heartfelt lessons I’ve learned from the past year.)”
Totally plausible, right?
Fast forward a couple weeks.  I had a good day!  I was able to go sit in the temple for a few minutes.  (For anyone not familiar, the LDS temple is a house of worship where sacred ordinances are performed and instruction received.  Everything in the temple is light, white, and bright.  People speak and act in reverent tones, and feelings of calm and peace prevail).  I had been unable to go to the temple for over a year, and while I couldn’t participate in any ordinances, I was so pleased to just go bask in the peaceful atmosphere for a few minutes. 
With my POTS (Postural Orthostatic Tachycardia Syndrome), my tachycardia and excess adrenaline always make me feel somewhat frantic when I am sitting or standing.  And while those symptoms were still present, there was certainly a layer of calmness there that I have been craving.

As I sat in the celestial room, I reflected on my life circumstances and found myself caught up in silent prayer.  The thought came clearly to my mind that I have everything that matters most.   Yes, I dearly miss our family adventures—traveling, exploring, hiking, and biking.  Yes, I miss being able to go out with friends and throw or attend parties.  Yes, I miss wearing the nice clothes and jewelry hanging in my closet (yoga pants and t-shirts are my staple now).  Yes, I miss shopping the aisles of Target, Kohls, and Hobby Lobby looking for those great deals that give me a temporary high.  Yes, I miss helping at my kids’ school, going to their programs, and even cooking and cleaning for them.  Yes, I miss having the independence to go where I want when I want and not having to leave the house in a wheelchair or live in constant dread of passing out in public.  But, in the eternal scheme of things are those the things that really matter?

My family’s basic needs and wants are met.  I have an incredible, loving, and compassionate husband.  I have four amazingly sweet and healthy children.  I have family, neighbors, and friends that I love and that love me in return.  I have faith in Jesus Christ and His gospel.  I have everything that matters most.

****
Fast forward one more time to this past week.  On Christmas Eve I wasn’t feeling well (chalked it up to typical POTS stuff, plus straying from my restrictive diet).  However, by Tuesday my symptoms had escalated greatly. I was in more pain than I have ever been (including labor).  A trip to the doctor and, later, the ER proved fruitless as, after blood work and scans, no apparent problems could be identified.  For most of the week I have been curled up in bed with my pain level hovering at a 9/10.  It has been excruciating and unbearable.  I haven’t been able to eat, and even drinking water sparked intense pain that nothing could touch.  I sobbed from the pain, but also the terror that this might be my new reality. 
Miraculously, this weekend, the doctor’s office called to report that the initial screening that showed no infection was a false negative, and I did, in fact, have an infection.  (Hallelujah for an answer!).  After a heavily dosed antibiotic shot, I am extremely grateful to already be feeling some relief.  Although I’m not totally out of the woods, and still have further scans and tests next week, I am so grateful for any relief and pray that the intense level of pain does not return (and appreciate any additional prayers on that front as well!)
In some ways, I guess my life is a little like a Hallmark movie-- a sudden life change last year, working to find happiness again with my new conditions, even a dramatic plot twist this week.... Perhaps this past week is similar to the dream sequence (I hope I’m now fully awake from the nightmare and that it’s not a tell-tale sign of things to come).  It has certainly given me more room for reflection on what I am grateful for.  Although I am not a stranger to chronic pain, it has given me more compassion for others that live with constant levels of such high pain.  My typical POTS symptoms, though awful, seem like a walk in the park after the last week I’ve had.  I have seen proof of the saying, “Things can always be worse,” and regained perspective and gratitude for the seemingly lesser problems I have.  As I move forward facing the sometimes bitterness of reality, I cling to the sweet reminder I was given that I have everything that matters most.

Sunday, November 13, 2016

Strengthening Marriage: Being the Kind of Spouse I want to Have

I was recently asked to write a talk about marriage.  Although my blog has focused mainly on parenting when sick, I thought it would be appropriate to post my talk here as well, as a parent-child connection is not the only relationship that can suffer when mommy gets sick. 

In terms of marriage and people with disabilities, neurologist Richard Senelick, wrote an article discussing the struggles married couples have when facing disability.  He said, “Disabilities break down the basic structures of relationships. Roles may be reversed overnight…. The disability places increasing demands on the relationship.

We’ve certainly seen a role reversal here as my husband has had to take on so many additional duties in the home, with the kids, and in caring for me.  It has added stress to our lives and has made me feel inferior in regards to being an equal partner in our marriage.  I’ve had to look at other ways I can contribute and other things I can do to help my husband and continue to build our relationship. 

The following is geared towards everyone that seeks to improve their marriage relationship, not just the sick and disabled.  Yet, I’ve appreciated the opportunity to take a closer look at things I can do to improve my relationship with my husband, despite my current state of health.


Maintaining a Strong and Healthy Relationship with Your Spouse

  

Henry Eyring has said, “There is no more important commitment in time or in eternity than marriage."

And yet, life sometimes gets in the way.  I know there have been many times in my life where after dealing with work, kids, school, extracurricular activities, house, laundry, church responsibilities, and more, that my poor husband is the last person to receive my attention.  Currently, with my illness, my time of feeling “good” is so limited, I have to be so picky about what my priorities are and how I spend my time, as I can only do so much in a day.  

So amidst our chaotic lives, how can we make marriage a priority and how can we strengthen and maintain a good relationship with our spouse?

A piece of advice often given to those who are single is to be the kind of person you want to marry.  This advice shouldn't end once we've found our companion, however.  

We should strive to be the kind of spouse we want to have.  


The golden rule most certainly applies to marriage.

So what is the kind of spouse do we all want to have?  I have thought about this a lot the past week, and have come up with a rather long, yet I'm sure not all-inclusive, list of things I seek or treasure in my spouse.  Thus, I know these are the things I need to work on for myself, as well, in order to improve my marriage.

1.      I want to be a spouse that is kind.  Why is it that we are often kinder to strangers than we are to our own family whom we love?

2.      I want to be someone who takes time for and listens to my spouse.  We need to go on dates, share the exciting and mundane details of our days and, with the age of electronic devices in full force, put down our phones and have quality conversations and connections with no self-inflicted distractions. 

3.      I want to be a spouse that shows empathy and seeks to understand.  We may not always have the same opinion or point of view, and that’s okay.  But we shouldn’t discount our spouse’s point of view because it isn’t the same as ours.  As Stephen Covey has counseled, “Seek first to understand, then to be understood.”  

4.      I want to be someone who is quick to recognize my spouse's accomplishments and show gratitude for his actions.  So many of the mundane daily tasks in our lives may start to seem commonplace—but don't let them go unnoticed!  Show gratitude often.  I'm amazed at how much more willing I am to cheerfully serve my family when I know they recognize and appreciate my efforts. 

Additionally, if we can focus on the positive things each other is doing, it helps us to avoid dwelling on the things they aren't doing or we wish they would do-- which only leads to negative feelings and frustration.

Linda Burton said, "The nature of male and female spirits is such that they complete each other.  We are here to help, lift, and rejoice with each other as we try to become our very best selves.  Barbara B. Smith wisely taught, ‘There is so much more of 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!”

5.   Along these same lines, I want to be someone who apologizes and also forgives.

Linda Burton posed a question that helps put this principle in perspective.  She asked, "When was the last time I chose to be happy rather than demanding to be ‘right’?"

Steven Snow said, “Unnecessary pride can dissolve family relationships, break up marriages, and destroy friendships. It is especially important to remember humility when you feel contention rising in your home. Think of all the heartache you can avoid by humbling yourself to say, “I’m sorry”; “That was inconsiderate of me”; “What would you like to do?”; “I just wasn’t thinking”; or “I’m very proud of you.” If these little phrases were humbly used, there would be less contention and more peace in our homes.

6.   I want to be someone who thinks often about the needs of my spouse and how I can help.  While I may not be able to physically help him with every trial, sadness, or stressor in his life, I can always, always pray for him.

7.      I want to be someone that is happy and strives to make my spouse and others happy. 

Gordon B. Hinckley said, "Life is to be enjoyed, not just endured."  I also love Russel M. Nelson’s recent talk where he said “we can feel joy regardless of what is happening—or not happening—in our lives.”  We can be happy, even if life is not going the way we planned.  That is certainly a lesson we have learned in our family this past year, and I am so grateful for my husband who helps me smile and laugh every day.



Take care of yourself so you can take care of your spouse.


In addition to concentrating on these areas of improvement, there are two other principles of focus that I feel are important for a strong marriage.  The first is to take care of yourself.  I know this sounds counter-intuitive when talking about marriage, but I would assert that if your basic needs are taken care of, it will be easier for you to take care of the needs of others.

Barbara Smith said, "The state of our health affects every facet of our life—our feeling of personal well-being, our approach to work, our social interactions—even our service to the Lord.” 

One of the bumpiest times in my marriage was after our twins were born.  They were preemies and slow to eat-- you'd just finish feeding and changing them both when it was about time to start over. They were colicky and screamed for hours every night.  They got RSV (a respiratory infection) early on which had lingering effects for almost a year after.  And it seemed like they never, ever, EVER slept at the same time or for more than an hour or two at a time.  Thus, we also rarely slept and merely coexisted in a state of constant exhaustion.  Needless to say, the frazzled ends of our patience tended to ignite much faster than should have— not because we didn’t care about each other, but simply because our basic needs (particularly that of sleep) were not being met.

These is a well-known health theory called Maslow's Hierarchy of Needs.  Imagine a pyramid with five tiers or levels.  The bottom level is your most basic physiological needs-- such as food, water, and sleep.  The second tier is safety, then friendship and belonging, esteem and respect, and at the very top is self-actualization, or feelings of fulfillment-- something we all want to achieve.



The premise of the theory is that it is hard to reach a higher level of the pyramid until the needs on the lower levels have been met.  For example, if you were hungry enough, I imagine you would be willing to risk your safety (in the second tier) in order to obtain food.  Similarly, how much harder is it to give or receive kindness, patience, love and compassion when you are hungry, tired, and stressed?

Jeffrey Holland has said, "Fatigue is the common enemy of us all--so slow down, rest up, replenish, and refill."

If we take the time to take care for ourselves through rest, a healthy diet, exercise, and mindfulness, it will enable us to better attend to our marriage.  We can also help our spouses do the same-- which may mean giving them time to exercise or encouraging them to refresh by getting out of the house to spend time with friends, focus on hobby, or walk the aisles of Target alone without any needy children.

Trust in the Lord


Of course, despite our best efforts, we can’t fully eliminate stress or exhaustion in our lives.  But Todd Christofferson has assured us that, “Much that is good, much that is essential--even sometimes all that is necessary for now--can be achieved in less than ideal circumstances.”

So that is where my final words of advice come into play: “Trust in the Lord with all thine heart; and lean not unto thine own understanding.  In all thy ways acknowledge him, and he shall direct they paths.” (Proverbs 3:5-6)

Trust in the Lord
Source: http://www.crosscards.com/cards/scripture-cards/trust-in-the-lord-tulips.html

We are told that we can do all things through Christ.  Moroni 7:33 says, "If ye will have faith in me ye shall have power to do whatsoever thing is expedient in me." 

Marriage is ordained of God. He wants us to be successful, and He has promised to help.  Pray for and with your spouse.  Rely on your Savior as you strive to strengthen your relationship with each other.  In so doing, we can follow the proverb “Thee lift me and I’ll lift thee, and we’ll ascend together.”