The Gratitude Experience

Five years ago, I was staring out of my master bedroom window watching my children play outside in the beautiful green grass. I watched with pain in my heart as they ran freely with the open land and  mountains as their backdrop.  I felt a twinge of self pity as I thought of my current circumstances. I was bed ridden most of the time, my new medication wasn't working, and financially I knew that with my health condition, medical bills, and loss of income, we were in the process of loosing everything.

Then to add despair to the current misery, I thought about how freely my children were running. I thought about how before my current health conditions, I would be playing and running with them. The heavy weight of loss was beginning to pour upon me.

In despair and self pity, I prayed to my Heavenly Father, "Why am I loosing everything?" The emotions were overwhelming. But just as it was about to consume me and throw me into a whirlwind of depression,  a loud and clear voice came to my mind almost as if  He was yelling at me.

With vigor and zest He proclaimed,   "At least you had it!"

Taken back by the "still small voice" who was not being still or small, all the consuming emotions paused in my mind.

I was shocked and amused by the response from the Holy Ghost.  Was it kind? Some may say no. Was it validating? Not really. Could anyone else have said it except for Him ? Probably not.   But somehow, in that moment, that was exactly what I needed to hear.

Stunned at the answer, I thought it would be wise to consider what He was trying to teach me. When I looked out the window the second time, and I watched my kids play, I realized  that for 30 years I ran and played as much as I had wanted ( or didn't want :)!   I ran in high school, participated in races as an adult, and even ran a marathon a few years earlier.  This strong epiphany was followed by a long forgotten memory. In my minds eye,  I  saw myself as a little child running freely as I  played in the yard, ran to my friends house or walked to the store. These memories were vast, rich and enlightening.  And again, a voice full of passion yelled to me, "Jodi! You RAN!!"

 It was as if God was amazed at all that I had experienced, and He was showing me how to celebrate.

Again, I looked outside over my yard, and my house.  But this time as my eyes scaled the details of my home and the beauty that surrounded me, I saw all of it in it's present state, and not in the loss I was anticipating.  I  thought, "Jodi, you HAD this!!" And my heart leaped with joy. It was as if God was giving me my house again, for the first time and only for that day. And it felt like it was a really big gift. One that no one owed me. A gift that could be removed at any moment and that was okay. I quickly began to comprehend that if I never lived in a house again,  if all this material loss was somehow permanent, that I HAD it. I felt amazing!

As I retreated back to my bed, I pulled out my notebook and wrote:

"Today I learned that Gratitude is a mindset. It is a way of being. It is not an moment, it's not a list, its not about your blessings. Gratitude is lens that allows us to see the world as God see's it." 

I felt physically weak, and completely uplifted. And over the years, as I have met many challenges with this disease and with life, I try to remember the power of gratitude and the ability it has to change my view and the direction of my life. 

Here are some things I try to remember: 

* Gratitude is more than a feeling, it is a mindset. It's a lens that helps us see outward and inward. 

* Gratitude doesn't help us have success, it is why we have success.

* Gratitude is the first power that will save our relationships. 

* Gratitude is a state of being present with who we are. 

* Gratitude is the fuel for ambition. It helps you run to something, not from something.

*Gratitude helps you maximize your day. When you realize you have everything that you need today, you can free up your mind to focus on capturing and optimizing the moment that is right in front of you.

So this Thanksgiving, as I share my story with you, I want to thank you for taking time to read this blog, for stopping in the middle of a million important priorities and giving me your time. Thank you for stopping me at the store, at work, at church and on Facebook to remind me that these things are worth writing. Thank you for finding hope in the stories, and joy in the journey. You are truly a blessing in my life. Happy Thanksgiving!

Why we are not Entitled to Instant Happiness

I remember the day and time clearly. As if it was yesterday. It was the day that I realized that I was truly suffering.

Deep,  heart felt, desperate, completely unfair, unsure, REAL, GROWN UP suffering. 

Prior to Cataplexy, my core focus in life was about avoiding suffering. I believed and even based my faith on my ability to "overcome " my suffering, avoid it by making good choices, and figure out how to remove any pain I felt by changing my attitude, my mindset, increasing my faith or lowering my expectations. 

I had some false belief that I think I still carry from time to time. One that treated happiness like an Instant Rewards Program. Some of my beliefs included: 

1. If we don't sin, we won't suffer. Suffering is only caused by our own limitations. No sin equals Instant Happiness. 

2. We have faith to help us avoid pain. If we have faith, we won't experience pain because our faith will cure us of all the pain we suffer. Faith equals Instant Happiness. 

3. God will carry all of my pain, if I let Him. All of it. So if I have enough faith, I'll never hurt. Just let God have it. Casting my burdens on the Lord equals Instant Happiness. 

4. Righteousness is shield that helps us avoid all suffering. If I am just righteous enough..... Righteousness equals Instant Happiness. 

5. I can control my happiness. My happiness is up to me. God wants to make me happy, I just have to let Him. If I am not happy it is because God is trying to make me happy but I'm NOT letting Him. Stop being a stubborn nerd and let GOD make you happy, dang it!! Let God make you Happy= Instant Happiness. 

But this disease was challenging those beliefs. It was bigger than anything I had ever gone through.It was bigger than my mindset, my expectations, my faith, my attitude and even bigger than my current relationship with God was able to absorb. 

Maybe some of you have already experienced this before?  Maybe I was immature in my thinking, but it was a real, genuine place for me and it shook me to my core. I was deeply afraid to live with this disease and deeply afraid of living with something I couldn't fix! 

 Here is what I feared the most: 

1. I was afraid to wake up each day and see the disappointment on my children's face when I had to miss one more activity because I was too tired to go. I didn't know if I could do it. 

2. I was afraid to live in a world where my husband was coming to bed each night, exhausted from all the work of taking care of the kids and ensuring that all their needs were met, while I laid in bed and  took care of "just" myself. 

3. I was afraid to be called disabled by anyone. I just didn't want to be called that. 

4. I was afraid living with the feelings of guilt as I watched my family go to church while I sat in my pj's or laid in bed because I was too exhausted to worship with them. 

5. I was afraid of living in a world where my disease was causing chaos, and there was little I could do to "fix" it. 

It was humbling to know that my family and I were at the mercy of a very intense disease. An "everything changing" disease that we didn't understand. And not only did we not understand it, but every paradigm about our happiness was being challenged! 

I found myself pleading with God to remove my suffering and the suffering of my family. I found myself asking Him over and over if somehow I had done enough to be healed, or if somehow my kids could be healed now, or tomorrow or very very soon?

I remember getting a blessing....again, asking God to help me figure out how to make this work. How do I fix this? What am I missing? Then I got an answer I did not expect. 

"Jodi, this disease is supposed to be hard." 

I was in shock. What do you mean it's supposed to be hard? It's supposed to be difficult?! Why can't God fix it and make it easy? Isn't that His job? To help me?  To heal me? To reward me for my faith?  

It was at that moment that I realized that God's plan of happiness was a PLAN, not a instant rewards program. You see, for you and I there is always a PLAN. There is always hope for things which are not seen, which are true. 

Then came this verse to my mind.  "The Son of Man has descended below them all, art thou greater than He?" ( D&C 122:8). 

Even Christ, who was perfect could not avoid suffering. Deep, real, incredible suffering. And why was He willing to suffer greater than any of us will ever understand? I don't know all the answers, but I do know that He also believed in the PLAN.  

And there in lies the secret to living with our suffering. There is a PLAN. There is not an instant fix. We may have moments where we feel lifted. But most of us suffering from an ongoing trial recognize that the suffering can hit us during the most unexpected moments. Moments that feel awkward, vulnerable, weird and even out of the blue. It can be discouraging, and even depressing. But for today, I am learning to live with a new paradigm about Happiness.

1. Happiness is a PLAN. If it was fast, we wouldn't need a plan. It would be called, "The great idea of happiness." But it's not. Let the PLAN work in you. 

2. It's okay to cause suffering on others. It's part of being human. It's the most humbling part of being human. It's the crappiest part of being human. And the most human part of being human. When you understand that your best efforts will still cause suffering, you can be more compassionate towards other peoples best efforts that also cause you to suffer. It's weird, but it works. 

3. God does not owe you anything. Wow. God doesn't owe me this chance to wake up today?  No matter how imperfect I woke up today, I woke up. No one owes me that. Not even God. Thank you for giving me another day, even if it sucks. Even if I lay in bed, and accomplish very little.  It's still a day that no one owed me. 

4. God can't cure or stop all suffering, but He does care about us. He weeps with us. He is all knowing, which means that He knows what we are suffering with and it is sad for Him too. He does His best to help us turn it into the best that it can be for today.  He never sits self righteously staring at us, thinking "Oh brother! I have a PLAN! Stop getting so worked up!" I have felt His compassion, His love, and His genuine concern for my well being. I have felt His love for each of my children and His genuine concern for their suffering. He loves them. He loves me. He loves you. 

5. We don't need an  Instant Reward Program. We actually don't need Instant Happiness to be okay. We don't need it in order to accomplish all the God needs us to accomplish. He can do great things thru us, even when we are suffering. Often times, I am shocked at the miracles that have happened in my life, even when I feel like I am doing nothing. He is God which means He respects the PLAN, and will do everything in His power to help us move forward. 

So now when I am frustrated at the lack of Happiness in the world, the lack of balance that exist, and the ability of this fallen world to truly live up to its name, I can remember to leave the Instant Rewards Program  to the grocery stores and credit cards. And for today, I will try to remember that I am alive, I can write this post, we can feel  His compassion, we can feel  His love, and we can patiently endure, because just for today, His Plan is enough. 

Why My Husband Stayed

With Father's Day yesterday, I was brought to contemplate the journey that Isaac and I have been blessed to embark on as couple. I was filled with gratitude for the past, hope for the future, and most importantly, a keen sense of the absolute miracle that we are still together today.

Yes, miracle.

You see, it wasn't too long ago that we were approached by someone we had barely met who asked questions about my Cataplexy (Greek for suddenly struck down) and Narcolepsy. After listening for a moment, he asked a profound question that still echoes in my mind.

"Why did you stay with her?"

My husband's answer was polite. Ironically, we were not offended. We thought about this long after he left. We were moved by his total lack of understanding. And together, in private, we answered the question.

He stayed, or as we like to phrase it, WE stayed because we weren't afraid of this disease. WE stayed because we had already gone through so much before Cataplexy ever hit our lives. We stayed because we had practiced for many years prior the art of showing up each day.

You see, Isaac was 21 and I was 19 when we decided that were ready to commit to marriage. We were immature, short sited, self centered, co dependent, and extremely stubborn kids who decided that as freshman in college, we knew what we wanted in an eternal companion (we are married for eternity in our religion, so... yeah its a pretty intense decision) and we weren't open to any advice unless of course, it supported what we wanted to hear. 

He was from the country,

I was from the city.

I am an extrovert. 

He is happiest on a river, alone, with fish that he never eats. 

I am happiest at taco bell with a crowd of friends who also love taco bell.  

He loves sports. 

I love to decorate. 

He loves nature. 

I love it too, as long as a Walmart is within 15 minutes. 

I love to dance. 

He loves to not dance. 

He is patient.

I am quick to make decisions. 

He believes in slow and steady.

I believe in fast and then faster. 

But we were in love. He was calm, and I was a hyper active outgoing person who didn't have to entertain him. He thought my endless babble was interesting, and I thought his cool and laid back attitude was admirable. He was the most respectful man I had ever met. He was the kindest man I had ever met. He was perfect for me. 

Seriously, we were so in love... and really dumb.

And so we were married. Our happily ever after was about to begin. Time to rest from our worries, and ride into the sunset with our soul-mate. 

And then it hit. The clear and blatant reality that we were completely different. 

In fact, it kills me to write this, but 3 years into our marriage, and 2 kids later, we sat in our counselor's office as he bluntly delivered the news. "You have a 95% chance of getting a divorce in 5 years unless you dramatically change the way your communicate with each other."

Huh? 

I was dumbfounded, sad, humbled beyond belief, and feeling completely helpless. We had been in counseling for nearly 18 months. I felt like we had given it all we had. We had never worked so hard, and we had never been so miserable. 

It felt unfair. 

It felt like his fault. 

It felt like my fault. 

It felt like a dream. A really crappy dream. 

And so we left. And we continued to struggle for a couple more years. Yes, years. Yes, we are slow learners. Remember, we were dumb when we started.... soooo don't judge. 

But the one thing we both had in common was stubbornness. Over time, and a lot of counseling, the stubbornness turned into determination, and then into humility, and then commitment, and lastly into joy. 

After six years of marriage, and three kids, we figured out how to be happy. Genuinely, joyfully happy. And something else blossomed in those 6 years of intense struggle..... gratitude. A real sense that neither one of us had to be there. That we were reliant and completely dependent on the each other to show up each day. Some days: 

We showed up half way. 

We showed up physically as in "Hi I'm here. Yes I'll change a diaper, but don't talk to me" 

We showed up emotionally and had great conversations.

We showed up crying. 

We showed up angry. 

We showed up happy and then irritated because the other person showed up grumpy. 

We showed up happy even when the other person was grumpy (that was a game changer). 

We showed up hurt. 

We showed up excited about life. 

We showed up ready to listen. 

And we kept showing up. Ugly, pretty, nice, mean, weird, off, unsure, scared, excited, and all. There was something magical about showing up each day. There was something totally imperfect about it all. We stopped chasing the "perfect days" and started appreciating each day. 

And the best part about showing up is, you get to try again tomorrow, even when you reallllly screwed up today. Even when you said something so stupid, hurtful, rude, awkward and unforgivable that day, we both knew that we were going to be there tomorrow. 

Fast forward 5 year later and 11 years of  marriage under our belts, and we were sitting around talking about how grateful we were for those short 5 years of counseling we had. We loved each other, and we tried to avoid being dumb the best we could. 

And then "It" happened. I had Narcolepsy with Cataplexy.  We were so busy showing up, that we didn't see it coming. And then, one day: 

I showed up paralyzed. 

I showed up broken. 

I showed up with really messy hair. 

I showed up sad. 

I showed up helpless. 

I showed up unclear of the path ahead. 

I showed up as a house decoration that talks. 

I showed up in walker wheelchair. 

I showed up and fell asleep walking to the front door. 

I showed up unable to carry my part. 

And then by the grace of God, the help of angels around us in the form of friends, neighbors, and strangers, and the tools we learned in counseling, Isaac was empowered. 

He showed up strong 

He showed up and helped me do my hair.

He showed up really sad too (and that helped us heal). 

He showed up with hope. 

He showed up with faith that God would provide a path.

He showed up and listened. 

He showed up and pushed me in the wheelchair.

He showed up and carried me into the house. 

He showed up and carried my part. 

And eventually, just as before, when we both showed up each day,the days turned into years, and we healed. And now as we look forward, we hope and pray that we are privileged to have those years turn into eternity.

So now when people ask us how we did it, how He did it, we simply smile and think:

Show up.
Practice, practice, practice, practice
Show up. 

I hope that if your took time to read this blog, that you understand and that you have the courage to show up too. 

Happy Fathers Day to all the Dads who show up everyday. 

Sometimes Faith Is:

I have always considered myself to be an optimistic person. Someone who has faith and hope in life. However, Cataplexy brought me to my knees as my life was reduced to laying to bed, paralyzed, able to hear but not to act. Being reduced to a bed ridden, silent state ( those who know me, know I love to talk), my faith was tested. My optimism completely ran out. I wondered if I really had faith. I learned that depending on the day, and the circumstances, faith can be grandiose and amazing, or simple, and even insignificant to others.

So today, I thought I would write what I have learned about faith.

Sometimes, faith is:

* Loosing everything
* Moving away
* Accepting that you are enough
* Letting God speak to your heart
* Listening
* Waking up
* Showering even when you know you're going back into bed.
* Going out in public
* Falling down in front of people you respect
* Praying
* Trying something even when you know you've failed before
* Trying something new
* Accepting Gods will for that day
* Believing God can make something out of you
* Seeing your children grieve, and trusting God sees it too.
* Letting your husband carry you
* Letting your neighbor bring you a meal
* Feeling gratitude for the love of others
* Acknowledging the angels that are surrounding you
* Acknowledging the good in the mist of a hellish experience
* Believing you are more than your body
* Believing you are more than your mind
* Eating
* Thriving
* Giving
* Accepting
* Respecting Gods miracles and truly seeing them
* Hugging the ones you love even when it hurts.


When you are curled up in your closet at night, wondering how you can continue to move forward in your life, on those days, faith is:

* Allowing yourself to fall asleep
* Not going for the bottle, the pills, the computer, the food and just being in the uncomfortable, heart wrenching feelings
* Not taking your life
* Choosing to not get in your car and leave it all

On the mornings when you feel like you can barely move,  barley manage your own emotions, and you can hear your children talking, fighting, and laughing in the other room and you know its only minutes before they are coming in to get you. On those days, faith is:

* Removing your warm covers
* Putting  a bra on under your pajamas.
* Putting down your phone
* Addressing your dread
* Digging deep with courage to face the day
* Putting your own desires behind.
* Brushing their hair
* Pouring cold cereal and still feeling good about your ability to parent

When you are driving home from a long day at work, and your tired to the bone, On those days, faith is:
* Walking through the front door
* Embracing your children
* Listening to them
* Preparing a dinner out of your freezer but feeling like you worked hard to make it.
* Turning off your mind about the urgency of work
* Replacing your passion for your job with your passion to be a mother

When I looked out the window, and  watched my children enjoy the home we worked to build, and we were loosing because of my disease, on those days, faith was:
* Feeling gratitude
* Focusing on my children instead of my losses
* Believing that God can give and take away
* All things will be restored
* Acknowledging that I still had the only thing that truly mattered, my family.


When you are sitting in church, next to your husband and you look at all your children sitting, singing, nudging each other and acting angelic and imperfect at the same time, on those days faith is:
* Taking the sacrament
* Believing in a Savior
* Believing you can be forgiven
* Believing that life is meant to have joy
* Allowing the bread and water to work in you.
*Allowing the Lord to work through you.

And ultimately, faith is believing that, by the grace of God,  you can do it all again tomorrow.

How Not Being Special Gave Me Courage

Often times in our childhood, we are blessed with experiences that we don't fully understand. Precious moments, and memories that Gods graces us with even when we don't fully deserve or understand it's significance. My childhood miracle was not something I truly appreciated until I got Cataplexy (Greek for "suddenly struck down"). Today, I am honored to have the opportunity to write about the one person who taught me at a very young age that I was NOT special.

When I was 8 years old, my mom introduced to me to a new ASL (American Sign Language) missionary named Philip Van Curen.  I didn't understand the impact he would have until much later. Elder Van Curen was serving a mission for our church while dealing with a rare and often fatal disease called NF2. But I was 8, and quite frankly, would not comprehend the severity of his disease until I was much older. And unlike most missionaries that my family met and fed, Elder Van Curen would be more than a missionary. In fact, I would be privileged to call him my "family" at the age of 10 when he returned to Arlington, Texas to live with my family while receiving treatment and surgery for his NF2.  I didn't fully understand it then, but the minute I met Philip, his body was rapidly deteriorating. NF2 was a vicious and fierce disease that would allow tumors to grow all over Philip, which included his brain, his arms, and his legs. I innocently touched the tumors on his arm, and pushed them with my finger. I was fascinated by the brace on his leg, and the large lumps( tumors)  on his forehead. I was surprised when we went out in public and people stared at him. He would tell stories about little kids who cried when we waved to them. My little 10 year old mind could not comprehend the cruelty of the world, and I truly didn't understand why people thought he was so different.
Perhaps the most burned in my memory was the surgeries and how each time he came home from a surgery, his face was more paralyzed, his  lips more slanted, and his eyes more drooping. Perhaps I was shielded the most because I was young, or because Philip shielded me from the changes with his amazing attitude and spontaneous dance parties.

Philip was full of life!! He was funny, and goofy, but most of all, he loved to dance! Even though he was profoundly deaf at the age of 12, he still cherished music and his love for dancing. My love for dancing, and my lack of inhibition often came from watching Philip carelessly dance, while using his left hand to pull up his right arm, and singing YMCA at the top of his lungs. He danced at home, at the park, at the parades, and the single dances.  I loved him.

Years later, Philip's disease became increasing worse and he had the privilege of moving on. When he passed, I had mixed emotions. I was happy for him, and overwhelmed with my grief. But I struggled to understand the impact he would have in my life.

Then in 2010, one week before my cataplexy set in, I found myself thinking about him as I prepared a lesson for the primary kids at church about the resurrection. I presented the lesson with mixed emotions as I re-processed my grief.

And then Cataplexy (Greek for suddenly struck down) hit one week later. And when I finally realized what I had, I knew that my only choice was to keep moving forward. But to keep moving forward meant to keep living. And to keep living meant that I needed to enjoy life. And in order to enjoy life, I needed to leave my home. My safety net. I had to be vulnerable. And then I remembered Phillip.

I anticipated my first time out in public.

What would people think?

Who's going to tell them that I'm not drunk and passed out?

Who is going to prevent them from calling an ambulance?

What will people say?

And perhaps what scared me the most is:

 How am I going to feel about myself?

Going out in the world to me meant opening myself up for feedback. It meant announcing to the world that I have a disease that I don't fully understand and that I have no control over. It meant facing some terrible lies that I started believing immediately after I was diagnosed:

1. You are awkward
Intense diseases or any type of mental or physical trial will quickly teach you that you are different than anyone else. It also lies and tells you that everyone else is normal and that somehow everything you do will be noticeable to them. It tells you that your pain goes out to them and everyone else feels it too.

2. You're going to embarrass yourself
You should be ashamed of who you are. What if you laugh and fall over? What will people think? What if your shirt comes up in the back when you slump over and those stupid low ride jeans you bought on sale expose your butt crack? Don't risk it. Life is so much safer at home.

3. People will feel sorry for you
People will feel bad around you. They are going to feel pity which will ruin their day and yours. They will think you are strange. We don't want them to feel that burden.

4. You look funny when you go out. 
Your face droops and you slobber. No one needs to see that. When people see me slobber, they won't know what to say. They wont know how to react. I mean can you imagine having a conversation with someone who is slobbering?

And then I thought of Philip. Everyone could see his disability. Perhaps he was in my life because I needed a close example of courage. I needed an inspiration, and I needed to suppress this fear that was eating me alive inside and allowing my disease to teach me these terrible fears. Even if they are true, they can not be the center of my focus. I had to be like Phillip. I had to dance, "braces, tumors, deafness" and all. I was no longer a bi-standard admiring his courage. I had to find courage. And I believe my courage came from PRACTICING  these principles:

1. You are NOT special
Everyone has problems. Stop thinking about yourself! Think about them. Find out what principles they're learning. My guess is, it is very similar to yours. And my guess is, you'll choose cataplexy over their trials.

2. You can control 80% of peoples attitude towards you by controlling your own attitude
Most people are looking for direction when they see someone with a disability. I have the gift and ability to communicate. My attitude can influence their attitude. If I'm sad, bent over, and looking for pity, I'll find it. If I am happy, that has power to influence others too. Yes, people can be cruel, but most of the time, they are ignorant and unsure how to react, so they guess.  If I can be an example, it may help.

3. Ask for Gods approval and no one else's
I had to redefine myself daily. It wasn't a one time process. Somedays, I could get ready, and maybe even go to the store with a friend. Most days, I was in bed, unable to physically function. I needed lots of help, and eventually I set up a lifestyle that is different than what any of friends were living.

4. Remember, practice, practice, practice...
Practice may not make it perfect, but if you treat life like a constant practice, every experience doesn't have to work out right.  Your experiences are not meant to be perfect. We are here to learn.

So I did it. I went to a restaurant and twenty minutes into eating, I went Cataplectic. The waitress came to our table and asked if I was okay. I listened as my family fumbled and tried to explain my sleeping disorder. We were new at explaining it to strangers. But I was moved and surprised when she said something unexpected.

"I was in a car accident a while back," she said

A great reminder to me that other people experience pain. 

"It was hard because I hurt my wrist and it's made it hard to be a waitress." She continued.

A reminder that other people have set backs in their daily life. 

"And I need the money in order to make ends meet." Her voice saddened. "Its very stressful. I am in physical therapy and I am hoping to be better soon."

A reminder to me that other people are on this journey. That other people wake up everyday, imperfect, driven by hope. 

"I hope she can get help soon," and she walked away to help other tables.

A reminder that other people can make room in their life for compassion even when they have set backs. 

This was life changing because I could see the world in a different light. One filled with pain, triumph, compassion and hope.

It was awesome. I didn't have to hide in my home.

I wasn't special after all!!

Dear Body, I love you cause I have to: A letter to my daughter with cancer

Today I want to write about this awesome gift we received when we came to earth. Our body.

I was first inspired to explore this topic when my body was diagnosed with Cataplexy and Narcolepsy. And again, the topic was brought to the front of my mind recently when my twelve year old daughter was diagnosed with thyroid cancer.

As we sat in the office at Children's hospital last week, the Doctor clearly told my husband, my daughter and me that the biggest battle with stage 3 thyroid cancer is not survival of the body, but of the mind. Our responsibility is to help Emmilyn (Emmy) understand and learn to live with and love her body. And so I felt inspired to write her this letter:

Dear Emmilyn,

What's up with these bodies? Emmilyn, as you know, we believe strongly that we are all spirit children of our Heavenly Father who loves us. That we were given an awesome opportunity to come to earth to be tested. But do we think of our bodies as a test?  When measured against the campaigns you see about loving your body, or your body not being good enough, there is a third space that no one talks about. Loving your body because you have to. Loving your body even when it's not good enough.

Because, Emmy,  there is no other choice. Because hating it is not an option. Because if you believe that one day you will have your body back, just as the Savior was resurrected and regained His Body, then one way or another, this is what you have.  It's the only relationship that we have to engage in for eternity. All other relationships truly are optional. And quite frankly, don't you think God understands? Don't you think He looks at cataplexy, cancer, depression, etc, and says, "Yes, that is sad. Yes that stinks."

Sweet Emmy, I want to share with you a letter I wrote to my body when I was diagnosed with Cataplexy:

"Dear Body,

I am sorry I criticized the moles on your face, the shape of your jaw, the size of your butt, or the curviness of your hips! I am sorry I ever called you fat, dumb, lazy and treated you like sculpture instead of a real body. I am very sorry. For if I had known what I know now, I would have respected, honored, and appreciated that you are more than just a body, you are the house of  an unconquerable spirit!! "


Emmy, I believe God has complete compassion for our unconquerable spirits! I believe God knows that our spirit is stronger than our bodies, that our purpose is deeper, that our desires to fully live, fully be, and fully experience all that is good in the world is there. But these dang bodies are slowing us down!!

And now to the point Emmy. Here are some principles to consider when you think about your body:

1. It is a gift.
    Your body is a gift from God, even with cancer.  I remember the day you were born. You were so beautiful. Your body was so small, and you had so much to learn. You were the most precious baby in the world. Your body was a miracle to us. It allowed you to come to earth, a perfect, beautiful spirit needed your body in order to come here. It needed it, all of it, in order to experience everything that God has to offer, including joy and pain. Sometimes this gift can be an awkward, complex package, but it is a gift, not only for you, but for those who get to be around you.

2. It does not define you.
     Your body does not define who you are.  Your spirit gets to define who you are, and your body, your gift, gets to come along for the ride. Remember, your body is a gift, but your spirit defines you.

3. It will teach your forgiveness and you can pass that on to others.
    Emmy, your body is messing up pretty bad right now. It gave you cancer. If anyone on the street handed you cancer, you would be pretty hurt and irritated. You would have the right to feel annoyed and even upset. Jesus taught us that He is the way, the Light and the Truth. He is the reason for our joy. He taught us that we can rise above our experiences, and that through Him we are made whole. With that clarity, and joy, He also taught us to forgive. Forgive your body for being mortal, and you will find it easier to forgive others who are also mortal. Forgive your body for not protecting you against this disease, and you will be able to forgive your own mistakes, your own short comings, and in that process and the relationships that blossom, Emmy, there is hope and freedom.

4. Whatever is broken can be fixed one day- so don't stress too much.
    Through all of this, remember that whatever is physically broken, whatever disease, loss, or imbalance that happens, God has promised that one day our bodies will be perfect! Please don't ever think of your body as permanently broken. Nothing is permanent. One day, you will be resurrected to a perfect state, whole, beautiful, cancer free, and perfect, so don't stress to much. These physical trials are temporary.

5. Dream beyond what your body can do- and then keep trying to do it. 
    Above all, keep dreaming beyond what your body can do. Keep pushing yourself to reach new limits and goals. Listen to your body, but only listen to understand its feedback. Let your spirit rule your body. Let your spirit push your body to do things that you didn't believe you could do. Constantly test and push your body to do things your body thought was impossible. Your body may reach its limits, but if your spirit is still strong, you will be prepared for that perfect body you will one day receive. I hope that on that glorious resurrection morning, you will look at your perfect body and rejoice!! Dream beyond what our body can do, because one day your body will be perfect- so make sure your dreams are ready!

6. Be kind to your body- it holds your spirit
    Emmy, be kind to your body. Love it. For now, it holds your spirit. Appreciate everything your body does right. As you look at your scar from your surgery, remember that your body is healing! That's a miracle! Thank your body for everything it allows you to do, run, skip, laugh, talk, breathe, feel, taste, and love. Your body is amazing!! Remember to see the good. It will help you see the good everywhere in your life and this will strengthen your spirit.

7. God gets it- and He wants you to try anyway.
     Last, remember that God understands your pain. Our Savior understands what it feels like to be overwhelmed by our bodies and the pain we suffer. He too asked in His hour of suffering,  "Oh my Father, if it be possible, let this cup pass from me, nevertheless, not as I will, but Thy wilt be done." He atoned for you, all of you. He understands what it is like to suffer, and He wants you to lean on Him, and keep moving forward.

Emmilyn, along this path, and this relationship, you will hear various messages about your body, the only relationship you must learn to accept and love.
In closing, remember:

The Lord knows you will experience disappointments. Do it anyway. He knows you will experience set backs. Do it anyway. He knows you will often wonder if all of this is worth it. Do it anyway. Because as Mother Teresa said so eloquently,  "For you see in the end, it was between you and God. It never was between you and them anyways." This life was never between you and your bodies limitations, it is between you and God. And so in those hours, when you are angry, sad, and mistrusting of what has happened, remember, Love it anyway.

Love you,

Mom

The Day God Gave Me A Different Life

Sometimes in life, we evolve slowly and who we become seems like a slow and long process. Other times, who we become happens so quickly that it's burned in our mind and we never forget the moment, or few moments when God makes it very clear to us that our life would be different than what we expected.

Whether its through a sudden illness, addiction, depression, death, financial loss, or all of the above, we can be clear on one thing: The life we knew was over, forever changed by a simple moment, or in my case, a simple change in chemistry in the brain. Today, I wanted to write about the day that God gave me a different life.

On January of 2010, I was shopping for a computer. I had started an internet marketing company and I needed a laptop I could take to meet clients. So I was on the hunt. Then my financial advisor persuaded me to try a mac. I had been leaning in that direction so immediately after our meeting, I called my husband. 

“Meet me at the Apple store, you're going to be jealous.”

I went to the Apple store, fell in love, and with my husband there I said, 

“This is the happiest day of my life!” Isaac looked at me slightly puzzled.

“Oh yes, and our wedding. That was great too.”

Relief, joy and a new adventure awaited me. I had my new mac. Life was good. But as we were checking out I started feeling very shaky. Nothing new. 

I just needed food- which has always been my solution for most problems in my life- and 90% of the time, it worked.

So Isaac and I picked up the kids and headed to Wendy's. I felt totally tired and weak, but if I could just get a frosty- everything would be fine.

As we were going through the drive though, my legs began to feel completely unattached to my body. Then my torso, then my arms, and last my head and neck.

“Wake up!” I thought, “Your frosty is going to melt.” But even with that panic, I couldn’t wake up. Then all of the sudden, I didn’t want to wake up. Not even for a frosty, and that’s when I knew, I was in trouble.

“Honey. Honey. Here is your food.” My husband urged me to wake up. “Oh poor thing, she must be so tired.”

I was totally conscious but unable to move. Panic started setting in and I couldn’t tell anyone. My chest began to tighten and it was nearly impossible to swallow. As our van pulled into the garage, all the kids started pilling out of the car. They would bump me on accident, and I couldn’t move.

“Honey. Come on. Let’s get out. Can I help you?” my husband urged me.

I didn’t answer.

“Honey! Oh my gosh! Kids get back in the car, we are going to the hospital!' My husband is yelling. He never yells. 

 All 4 kids started screaming. Suddenly my ability to talk came back.

“I need sugar.” Was all I could say.

“Sugar you got it!’ Isaac said. “Kids, get out of the car and go inside. Go get candy!!”

We realized very quickly that we should have had a family home evening around “What to do if Mom gets stuck in the car ”, because it was sheer chaos.

Then Isaac darted out of the car to call my mother who is a diabetic. By now he was in a complete panic.

My mom, who lived 400 miles away starts panicking too. “ I think her sugars must have dropped. That’s what it sounds like. Give her juice as fast as you can!”

My husband runs into the house and comes back with juice. I am partially able to move enough to talk. He lifts my head and starts pouring juice down my throat.

“ Common honey come on!! Just get to some juice and then we will take you to the hospital.”

After one cup, he goes back in the house for more juice. I am starting to wake up more, but I can’t move my arms and legs. In the mean time, my sweet 10 year old runs out to the car with a dum dum sucker, unwraps it and sticks it in my mouth.

“Here mom!"

Then my 7 year old, trying to help, runs out with tootsie roll, unwraps it and sticks in my mouth. 

By now, I am trying not to choke as my 6 year old runs out and sticks a hard candy in my mouth.

So like an obsessed, compulsive eater at a carnival, I sat with candy in my mouth, praying I don’t choke to death, but unable to have the strength to spit it out.

Then my hubby comes back, pulls the candy out, orders the kids back in the car and starts pouring more apple juice down my throat.

Suddenly, movement starts coming back. I look at my husband and I started crying.

“That was so scary!” I said. He started crying too.

“Let’s go to the hospital,” he said.  

Well, our insurance had a high deductible, so I told him that I was fine. He was not convinced. I just wanted to sleep. He talked me into going to the local drug store so he could pick up a test thing for my sugars.

In the mean time, we bought a large soda to keep my sugars up. I thought I was going to puke but knew that I had to do it. So I did. And every time I felt like sleeping, I would shove sugar down my throat.

My sugars came back low. We thought we had it down. I explained to my kids that mommy is not going to die, and that even though it looks scary, I feel totally fine, and I can hear them, but I just cant move.

“Ohhh, so like your not really hurting, it just looks like it?” my 7 year old asked.

“Exactly!” I said with the most comfort I can. “ I understand you're scared, but mommy is not hurting. I just need sugar.”

“Sweet. We’ll, Im just glad your safe.”

“Totally.” I told them. But in my head I was thinking, “and that was just plain freaky.”

 But I still made an appointment with the Dr. for the following Monday, just to keep everyone from worrying too much. I tried not to stress because I had a back up- Google.  See, here's the deal,  I looked it up on Google, and I was pretty sure I had hypoglycemia. The Google Doctor is in----and it was dead wrong!

The following Monday, the Doctor  came into the room and asked me what happened. By then I was totally better so I nonchalantly explained that I had this attack and now I feel fine. I thought he would treat me like a hypochondriac but instead he just listened. Then I told him I was pretty sure I was hypoglycemic cause I looked it up on Google and I seem to have the symptoms, but that my sugar keeps coming back normal, which is really frustrating. Then I went on about how maybe I’m a diabetic because it runs in my family, but hey, I’m self employed and I really don’t have time to be a diabetic.

“ Do you run your own business?” he asked

“Yes. And sometimes it’s really hard, but I love it!” I said

Looking back, my Doctor deserves to win  “the nicest Dr. in the world award” for listening to me go on and on about what Google thinks I have. And he never rolled his eyes.

“Well, stress can bring on sickness, but I don’t think it caused this. I can do a test to see if your sugars are little off.”

Oh dang.

So he did, and in 5 minutes he had the results.

“Your sugars are normal. That’s good. Your not diabetic or hypoglycemic.” He said.

 And I’m sure he wanted to say , “Let that be a lesson to all. Google is not a substitute for doctor appointments.” But he didn’t. I admired him for his self-control.

“Great!! Cause I really don’t have time to be diabetic… Oh well."

“Well, I’ll run some tests and see if you are lacking in some vitamins. In the mean time, I’m thinking you may need to see a neurologist.”

“Ummm… I really am fine.,” I said.

But I really wanted to say, “ Oh no, Dr. Chipman, I think you might be over reacting. Thanks for caring- you're wrong.” 

I think he read my mind because he backtracked.  That‘s always a little awkward.

“Okay, we’ll run these tests first and then if nothing comes back really off, I think you need to see a neurologist. Do you need one of my staff members to drive you home?”

I was touched by his kindness but wanted to say, “Dude, I’m little quirky, not dead.”

Little did I know, my Doctor knew exactly what he was talking about.  So I drove myself home. He even encouraged me to stop and eat on the way home, just incase it helped.

“Great idea,” I said.

And I drove straight home, never stopping to eat.

This may sound weird, but I have learned something from this…. I‘m an idiot.

So I called back after 2 days only to find that all the test came back normal except for my thyroid being a little off.

Great, adjust my thyroid and lets keep going!

I never went back in, and just kept trying to get my business up and running. I would get super tired, but tell myself kind things like, “Don’t be a lazy butt. You can do this. Everyone gets tired. Build a bridge and get over it.”

Ya know, all the stuff that really keeps you going.

Then a few weeks later, my denial came crashing down in the funniest way. It seems like God is always trying to send me answers to my problems but He can't get through, unless there is serious drama attached. And so He worked his miracle.

I was in church. I held a leadership position over the kids in my congregation, and so I attended a meeting that morning on how to be a better leader. I woke up feeling great. Put on my pencil skirt that goes to my knees, my red leather boots, and my pin striped blouse.  I sat in the meeting, thinking of everything I needed to do. After the meeting was over, I went to the chapel where the congregation gathers. I found my husband sitting a few rows back with all four of our kids. He looked like he was about ready to pray to be invisible as my two year old climbed all over him.

I sat next to him. “Thank you for getting the kids ready and bringing them.” I said. “and you look like a hottie.”

“Thanks.." he said in the nicest voice he could with clinched teeth as my two year old jumped from the pew onto his lap.

“He is driving me crazy,” my husband started telling me. All the sudden the same feeling of numbness came over me.

Tears poured down my cheeks.

“It’s happening again. Isaac something is wrong. Get me out of here.”

“Okay no problem, c'mon honey.” Suddenly the kids could have been shaving each others heads and picking their noses. Nothing mattered.

He tried to help me up. I couldn’t move. I collapsed. But here’s the best part.

My husband propped me up on the seat and moved my head on his shoulder.

“It’s okay sweetie. I know you’ll come out of it.” He tried so hard to comfort me.

Then the church music began.

“Oh crap.” Was all I could think. And the tears kept coming down uncontrollably.

Ten minutes passed, and my husband even took the sacrament with my head propped up against his shoulder. I couldn't move my head, but I was able to open my eyes for a few seconds here and there. The little boy passing the sacrament looked at him like, “Dude, what did you do to your wife?”

I gained enough movement to whisper, “Isaac, I'm in trouble, get me out of here.”

“I'm going to pick you up and carry you.”

Now I was flattered by his “knight and shining armor” idea, but the reality is this:

 I’m 5’8 and 145 .lbs of complete dead weight. I had visions of him picking me up and dropping me in the middle of the floor, pencil skirt flown above my head. That might be a little awkward.

"Oh heaven help me.” I thought., but “Noooo” was all I could whisper. 

Then I went completely paralyzed, unable to talk. 

"Okay, I'll have some guys helps me." 

I can't explain why I would have rather died in the pew than have these 4 men help carry me out. It must be a girl thing, or a Jodi thing. But I couldn't move and I couldn't argue. 

 And so they did. Four men carried me out. One in the back and one with each leg up. I felt like I was perfectly positioned to have an obgyn appointment in the middle of church.

 Thank the heavens, I couldn’t see anyone’s faces. It’s moments like that, when all my superficial barriers came tumbling down. Time to get real.

So I am hauled off to another room where a Doctor and 3 nurses from the congregation came rushing out to help. They called 911. My bra was pulled up to my chin, with my shirt still covering it.

“If I could move, I would pull my bra down for sure.” I thought.

First, a sternum rub.. “ Jodi! Jodi!” a nurse and dear friend of mine said. “ Come on! Can you hear me? Jodi….”

I wanted to say, “Yes, I can hear you and please stop doing that.” But I couldn’t answer. My husband jumped in.

"She can feel everything but she can't answer! This has happened before but never like this. Then she’ll wake up and be totally fine. We thought it was her sugar….” My husband is in shock and spinning. 

“She is stiffing so tight.” The nurse said. Her vitals are fine but her heart rate is a little weak. I’m nervous. We need help here quickly.”

I could hear everything but I couldn’t talk. I couldn’t move and now there were 5 or 6 of my friends gathered around me, while my bra sat comfortably 3 inches above my chest  covered by white blouse.

“Yep, this sucks.” was all I could think.

The ambulance arrived, and did the whole sternum rub, and by now, I started praying,

“Heavenly Father please give me movement for one moment so I can slap this man who thinks I can’t feel anything.”  Nothing happened.

Suddenly,  I opened my eyes, everyone stopped.

“Oh great she coming out of it.! Jodi! Jodi are you okay?” My friend asked.

 “Holy sh*t..” was all I could whisper. 

 I couldn’t believe I cussed! I don’t cuss! I was mortified. 

 Everyone started laughing.

“OOPS, sorry,” was all I could say and out I went.

“Way to leave a legacy!” I thought to myself.  I hope this isn’t an indication of what I utter on my death bed. I hope I’m more profound than that. Oh well.

When I arrived at the Emergency room I had woken up quit a few times. I felt weak but okay. The Doctor came in and asked me to move my legs.

“Give me a second and I will, “ I reassured him. “Everything feels really heavy, like I have weights on me, but it will go away.”

After 3 minutes, it was as if I had been risen from the dead. I lifted my arms and hand with ease.

“See. I told you!  Weird huh? Can I go home?” I asked, in a “I'm going home anyways” sort of a tone.

The Doctor laughed. “I am totally perplexed as to what this can be. I think you need to see a neurologist.”

Suddenly, I began to doubt myself. What if I’m crazy or I'm loosing it, and my body is shutting down to keep myself from breaking down?

Shyly I asked the him,  “Is there any chance this could be like “in my head”? “

“Umm.. no.” he said in a matter of fact way. “ I’ve seen lots of patience who are having psychological break downs and your reaction is not consistent with theirs.”

I went home and that’s when the cataplexy had finally set it.  On that day, my life changed dramatically.

With every emotion, I would go paralyzed. I became awesomely aware of how vast our emotions are. I became aware of how quickly our lives can change and how fast we can be moving in one direction and then hit a wall. Within a few weeks, I was diagnosed. It would be months before I had my medication. And it has taken years for my family and I to adjust to this new life with cataplexy and narcolepsy as our companion. In a matter of days I went from:

Complete independence to a walker/wheelchair

Being an active mom, to a mom who felt like a house decoration that talks. 

Being a leader at my church to sleeping in the hallway at church.

Going from a 6 figure income to near bankruptcy

Dreaming of being a millionaire to dreaming of being able to work again.

But the message was clear. God was giving me a new life. It was not the one I wanted, or dreamed of. It would take a long time for me to accept it, and to learn how to find joy in it. But I had faith that the  Savior atoned for me. That He could carry this burden. That He could heal my children, and comfort their loss. And over the years, I have come to understand that when God hands us a new life, it can be much better than what we ever dreamed. And even if it's not what we wanted, it can be flawless and exactly what we need.