Tag: hope

Oh yeah! I am a fighter!

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December! I don’t know how this happened. December? 2015?  Life has felt good and slow and easy. It surprises me that I type that because, really, we have been pretty stinking busy and stretched.  But, it *must* be a God thing, because I don’t think I should have this much “okayness” with life right now.  I know that God is with me because I can look back at the chaos life has served me and feel okay.  Not just okay, even, but, peaceful.  And, there is joy…
The pain isn’t keeping me down all the time, but it’s a subtle reminder of growing disease. A year ago I was walking a couple of miles everyday.  I am thankful now, just to walk to my car sometimes.  I have been using my hands, more and more, to walk up my thighs as a way to help myself up from a seated position. We’re going to get some of those handles installed around the house, sooner than later. 35 and hips and back growing too weak and painful to stand up without assistance.  Humbling.
The reality is, it’s looking more and more like I drew a really bad lottery… twice.  Though I have only been diagnosed with Multiple Sclerosis, I also have positive blood tests for Stiff Person Syndrome (SPS).  SPS is rare.  Super rare.  1 in a million.  My neurologist is treating me for it now with every prescription most Google experts recommend, with the exception of anything IV.  That is saved for when it gets bad.  I thought I might go to some real life expert in Seattle to get the official diagnosis, but… I am being treated now.  Which is more than a lot of people who are and are not diagnosed, and suffering, are getting.  For that, I am thankful.  For right now, it’s the best that can be done, regardless if I have an official diagnosis.
After 15 years of dealing with the medical community, I sort of have an idea of which battle to fight.    If, in fact, this is SPS, I am still at a mild stage of the disease, but there is progression.  Particularly, the lower back and hip problems.  I want to be the fighter.
I want to keep making to-do lists that are too long and planning my church service months in advance and I want to keep daydreaming and pushing this little flower shop along.  I want to cuddle my boy and chase the girls to all their activities.  I want to see my middle schoolers thrive in Jesus and my Bible study ladies devoted to God.  I want to fight.
I have such a great coach in my husband, Toby.  He routinely inspires kids and adults into greatness at his jiu jitsu classes, at youth group, or in his sermons.  How fitting that God would pair me up with someone so encouraging and strong.
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My husband, Toby, and my mom, Susan, at the annual community Thanksgiving Dinner our family hosts in Weiser.  And a bag of turkey gizzards.
It’s also ironic, or completely DIVINE, that I have been able to watch my mom so closely fight her cancer over the last 9 years.  Although life has been cruel, hard, lonely, and unfair, here she is!  Doing the best she can, where she is, with what she has.  That 18% chance to make it two years.  Ha.  After having small intestine cancer reoccur 6…7 times (I honestly lose track), surgery after surgery, battle after battle, she gets back up and tries again.  Most would have succumb to the cancer.  The pain, the bills, the depression, the weight of it all.  My mom has endurance and heart.  All bundled up into a beautiful smile and the most tender soul.  She is a fighter.
God is good, I am always loved, and I will fight, too.

Deeper

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I am one hour and fifteen minutes removed from doing one of the most ridiculous things I never ever thought would do in my life.  I was an adult leader in a  weekend retreat for a group of 12 teens from our church.  We fasted.  Seriously.  I did not eat for approximately 38 hours.  I could have never done that on my own, but in the presence of the kids and the five other adults, it was ridiculously easy.  I ate a bit at lunch, but haven’t been back to the trough, yet.  The realization that nothing is going to satisfy me, even the best food I can think of…  the enjoyment will quickly fade.  

I’m different today than when I left – mentally and emotionally.  I’m different in one way because my perspective on God has changed.  The first night we were there our Not-Youth-Pastor, Hunter, led us in a lesson, worship music, and prayer.  During the prayer he said, “God, we love you.”  I realized quickly in that moment that I didn’t even feel love for God.  I want to serve God, I want to please him, but I’m not sure how to love Him in the right way.  In the way that a daughter ought to love a father.  That should concern me and it does.  I do not know how to fix it right now.  I am willing to learn.  

That night we split up into girls and boys groups and it started to become real about what we were doing.  So, we’re really going to bed hungry?  We’re just going to read the Bible, talk shop, and pray?  For a day and a half?  I did not know what that looked like.  Who does that?  

Saturday morning was quiet.  I could tell that some of the kids were struggling and becoming restless and I was sort of concerned.  Were they able to get passed the hunger, lack of cellular devices, and awkwardness of this retreat and find the Jesus behind it?  I am so happy to say that, YES!  Yes they were able!  It was a day filled with Biblical lessons, life application, inspiration, motivation, and prayer.  My Toby gave a lesson.  I never thought he was more handsome.  I was proud of him.  It wasn’t just delivering his message, but the preparation that I saw him do in the weeks ahead of the retreat.  He is a good man.

My Shannon and I were led by the Lord to make some pretty powerful “prayer stations.”  There were 12 different themes to each station and the kids were asked to go to them and interact with the station.  For instance, there were candles and matches at the “Light” station.  At that station there was scripture of God creating light, Jesus being the light, and how we are a light to others.  The kids were asked to pray and meditate on the scriptures while they considered how their own lives reflected the light of Jesus.  We also had things like forgiveness, strength, wisdom, and discipline.  This could be something easily used in Sunday school or at any revival.  They were fun to make and the Lord worked through them well.  At the “You” station, the kids read about God being their maker and they had play-dough, a globe, and a model-statue thingy.  This activity was really meaningful to me, for some reason.

We did have a few breaks throughout the day and we tried to make it a light atmosphere, but the thing I think I like the most about these kids and their response to this process was – it was not designed to be fun, entertaining, or for their a-musement.  It was a hard core, Jesus in yo’ face, what are you going to do about it challenge.  It would be us leaders that would finally be the ones to crack Saturday evening.  Okay, it wasn’t all leaders, it was me.  

We had read and discussed Elijah relinquishing his spirit to Elisha.  As one generation of leaders to the next, we wanted to pray over the kids in a special and meaningful way.  We each had drawn two kids that we had been praying for leading up to the event.  Even before I got to my first girl, I was crying.  I just knew it would be a hard prayer.  Relinquishing some of my hopes and dreams over to my Kelsie.  Realizing that my time with my hands is limited and that, I am so thankful that I was able to use them to spend time with her at the flower shop.

I am not getting better.  My symptoms of spasticity, tremor, and pain are very difficult to treat.  The progression of my illness into my upper body has really slowed me down.  I am uncomfortable, now, in any position.  I usually don’t sit for too long because my legs ache and now that my upper body is crappin’ out on me, it’s really put me in quite the pickle.  My neck, shoulders, and arms are just tired.  Just lifting my hands up to lay on the kids, was a struggle for me physically.  

I’m normally very excited to go to work and get to “play.”  It is a burden now.  Dana is tired.  I pray for miraculous healing.  I am hopeful that my neurologist will help me.  I get in to see her the 28th.  I can hang on for 23 more days, right?  After that, Toby and I will assess the situation and see if the shop does need to be sold.  It makes me cry.  It might be what the Lord is asking me to do though.  Maybe I have to get rid of the shop to get somewhere else.  I’m just not sure.

Perhaps the most challenging part of the entire weekend was signing an agreement with all the other attendants – a contract, a call, a commission to serve God wholly and completely.  I am good with that.  We were asked to commit to Bible study, devotional time, scripture memorization, and to seek the Lord first everyday.  I am good with that also.  The part that didn’t feel so good was committing to use my suffering for the growth of the Kingdom.  From the outside, it’s like, “Yes!  I will do anything for the Lord!”  But, when you are IN the suffering, you want nothing more than to get out.  

I have been trying to recondition my mind to understand that this illness and the problems it creates can help me and are actually a good thing.  I’ve been trying to accept that healing may never come.  I’ve been living and waiting as though I would feel better someday and as I realize that it may not happen,  I grieve for the dreams and experiences I haven’t had.  I am sad to be limited by this stupid body.  At the same time, I know I can offer the world a completely different perspective on things because of the uniqueness of my walk.  I might help someone.  And, if I can, but instead I choose to sit and feel sorry for myself…  that is not the legacy I want to leave.

The difficulty in signing the agreement, for me, was a few words.  Bryon presented the lesson and gave us a beautiful message on a friend he had lost years ago.  The friend died, full of life and love for the Lord, and his character not only impacted his immediate circle of friends, but generations of family’s now.  The friend, Bryon illustrated, lost all of his lifeblood in one moment.  The rest of us who struggle, serve, and work for the Lord may not lose our blood in one foul swoop, but one drop at a time.  

One drop at a time.  

Can I be okay with that?  For me, to be OK with it would mean that I could face my pain and illness with strength, with a good attitude, and joy.  As it is, I don’t have that mentality about it.  I don’t trust that it will all be OK.  I’m seeing these little droplets of blood everyday and I’m freaking out and well, freaking out isn’t really helping anyways.  But, dang it!  I just wish I had the ability to carry this cross for the Lord with a happy heart.  I want to change in that way.  I want to pursue His will for my life because I know that is the place that I will be used most.  If his will for my life is for me to weaken in body slowly, yet ever so surely, how can I accept that for really reals? 

I am interested to see the ripple effect that continues in me, the other leaders and in the kids.  The retreat is like a big rock getting plunked right in the middle of a quiet pond.  We’ve only just dropped the rock.  The first wave of reaction is in the works and I’m thankful.  I’m tired.  Our prayer as leaders was that this experience might cause a chain reaction that didn’t just end with the teens leading church today, but continues to envelop the kids in their homes, with their family’s, friends, peers and the generations that follow them.

I am thankful that I got to shut the whole world off and focus on God.  That is a rare opportunity.  Happy to be home with my monsters and as I type in my chair, watching all four of them cuddled up on the couch, I have tears.  If this is the only way that I could have them, I would do it all over again.  That makes me glad. 

 

It’s ALIVE!!!

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A few weeks ago my daughter, Quincy, read through Robinson Crusoe for school.  We listened to parts of it on audio and I overheard Robinson say, when he crashed to the shore of the island, “Thank God I am alive.”  I can still hear it plain as day.

“Thank God I am alive.” It wasn’t so much the way it was said, the context, or even the circumstances.  It was my reaction. I immediately thought, “Why would anyone be thankful for that?”

In my mind, death is entry into a place with no pain.  Hear me clearly:  I am not suicidal and I make sure to keep a dialogue going with my husband when I do fall into the ditch of depression.  As much as there is for me here, I can say without hesitation, that I am excited to be in heaven.  Death has no consequence to me.  It is my freedom from this suffering.  I have nothing to lose.

In those moments of realizing just how disconnected I was from this life, I became saddened, angry, and guilty.  It’s not that I am not grateful for the beautiful blessings I have in my life, it’s just harder to appreciate them when you are unwell.  The revelation that I was so beaten down in body and mind and spirit, just flooded me.

I chose to kick things in high gear and be more aggressive than I wanted to be with my application to the neurology department at the Mayo Clinic.  Once and for all, I could face this MS thing and figure it all out for sure.  My case is so atypical and complicated. Is it really MS?  Is it really progressive MS?  Nothing has been easy.

After speaking with my family practitioner, my friends with Mayo Clinic experience, my husband, and doing my own research, I felt confident that if any place could help change my life, it would be the Mayo Clinic.

This brought me so much hope. What if life didn’t have to be painful?  Hope.  Nobody sees how much I can’t do because I’m worn out. Nobody sees how much Toby and the kids have to sacrifice beause I don’t feel well. We don’t get vacations, we get medical tests, treatments, and hospital bills.  My husband works in a job he is amazing at but has no passion for, because of the health insurance we have to have for an illness we can’t treat.  I needed hope.  Big hope.

My prayer life changed over the few weeks we prepared the final paperwork. I felt *IN* my prayers.  Friends prayed, family prayed.  Aaaaaaannnnnnnnnnnnnnd:

I totally got rejected.

I guess I don’t meet the application criteria.  We are not given that information. The letter was extremely vague.  Toby brought it to me at work Saturday afternoon with the saddest eyes.  I left in tears, certain that life was going to suck forever. We had all prayed.  I was asking for a doctor…  how could the Lord deny someone a doctor…  in America?  It seemed like a cruel joke.  Get my hopes up, put myself out there, and then whack me in the knees while everyone is watching.

Is this really the God I believe in?  It rocked my world.  Toby and I talked about doing this life thing with God and without God. Sometimes it feels so much easier to do it without God because how can you explain a father who leaves his only son on a cross to die and blesses his daughter with a life of struggle and pain?

Ultimately, Sunday morning I had to make a choice.  I was up most of the night crying. Thinking I would start getting my business ready for sale, anticipating that in the next few years I would be a vegetable just like my grandma was.  Yay Jesus!  I was irreverent.  Bitter.  Upset.  Guarded.  I felt forgotten, rejected, alone.  “Sure, He is always with us,” say the perfect favored people who never get ditched by God.

Sunday morning Toby and Tripp stayed asleep late.  The girls were routinely taken to church by grandma.  I debated what to do.  Did I want to go to church?  I did not want to be any closer to God.  He was freakin’ me out.  I did, however, find a very curious spot in myself that questioned what Jesus would have done.

I’ve been studying him. The human Jesus.  Trying to understand why I should value what he did, because honestly, it didn’t mean enough to me. I have actually thought, “I didn’t ask him to do it, but I am supposed to be thankful because I get to live a life of pain and misery?  Thanks, Jesus.”

I can only confess these intimate thoughts because my mind has been renewed.  The thing I find inexplicably interesting right now is that I absolutely do not know where I stand with Father God.  But, me and JC are tight.  Is this even possible?  My brain is slow.

After debating a half hour or so, Sunday, I finally decided I would go to church.  But, I wasn’t getting fancy, I wasn’t showing up until service started, and I could not talk to anyone about the Mayo. No eye contact.

I made it to church, puffy eyes, in the middle of a row, perfectly alone.  And then, I spot the gold dishes stacked up in front of the Pastor’s podium and stare them down.  Communion.  Publicly partaking in the bread and juice as a symbol of your acknowledgement in Christ.  The pastor cautioned us that our hearts ought to be right with God before we take communion.  Was I?  My heart was hardened.  My eyes burned with tears for two reasons:  1.  Was I right with God?  and  2. I’m alone.

If you have intention tremor, it is extremely difficult to make visually guided movements with your hands.  The test they use in the neurologist’s office is having the patient use their pointer finger to repetitively touch their nose, the doctor’s finger or pencil tip, and back to their nose.  If the tremor gets worse the closer you get to the target, it’s defined as intentional tremor – it’s only during meaningful, voluntary actions.  Like getting communion cups and breadcrumbs.

Here I am trying to figure out if I should partake or not and, if so, how do I do it?  I decided since I went to church in pursuit of Jesus, I wasn’t completely righteous, but righteous enough to make the choice to participate.  “Righteous enough” was probably not the commitment the Pastor was looking for. But, I decided I was gonna do it.

I glanced at one of the ushers to the left and a lady down the pew from me to the right who walked in late.  Tate was right by me, but that’s like having a giant gorilla in a parka with a badminton racket to rely on.  I finally decided the usher on the left was quickest and I tried to discretely ask her to grab the tray for me.  I whispered that I needed help.  She nodded and smiled and then…   did not move.   As the tray was passed before me I had no choice but to grab it.  I reached for it with my left hand, but as I tried to grab the 1/4″ bread piece, I knocked others off the small dish in the center and I knew I couldn’t get the teeny juice cup.  I switch hands.  It is at that moment of crisis when me, the usher, and my gorilla girl all sort of realize, my tremor is going to spill all of the juice.  My usher-friend realized what I had been asking and stepped right in.  Toby is almost always with me, so this has never been an issue.  But, the more I sat there with my miniature fluted cup and bread…  I felt embarrassed and mad all at once.  I didn’t know how many people behind me saw me shake.  I wonder if they thought I was detoxing.  I sort of hope so now. Fun story.

The experience rubbed me the wrong way and it felt like another one of God’s cruel jokes.  Deny me the very medical help that I need just to take part in Communion.  Frustrated.

My pastor and his wife checked up on us later that day.  I don’t know why.  Nobody has clearly told them how clinically crazy we are.  Messages.  Prayers.  Friends.  By Sunday evening, I felt like I was brushing myself off. Monday I was sad, but in the Word.  Today I took a much needed day off. It was difficult, actually.  I went out this morning almost lost as to what to do. I came home from an errand and felt myself somehow moving forward in an awkward way.

Honestly, I think I’ve got some valid points to be a little pissy.  God has heard an earful.  I can’t tell you if I please Him or appall him. All I can say  is that I am super thankful that mercy trumps judgement because I suck at life and I can’t imagine him liking me.

I felt led by the spirit to write a letter to the radiology group that serviced my last MRI.  I’ve asked for them to explain what I don’t understand. Basically, I need something bad to happen before something good can happen.  The last MRI indicated lesions in both hemispheres.  My 2009 scan only had lesions on the right.  If I do, in fact, have new spots, it will help validate the progression of the disease and open doors to treatment.

Somehow, getting crushed by the medical giant of the Earth doesn’t hurt as bad today.  I think the reason why, is because I made a choice.  Even though I didn’t want to, I went to church.  I chose to take communion. I chose to meet with my small group Monday morning to talk Bible.  I am getting better at handling disappointment as a Christian.  It has been a process.  I am so weak in faith that I feel sort of like a fish out of water when it comes to trusting God’s plan.

“May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.” -Romans 15:13

God is my only hope.  By default.   LOL.  And, I’m thinking I’m gonna make it.  I believe in His strength.  I know I am a wiener at all of this.  Who knows?  Maybe I will be miraculously healed.  Maybe I will end up in the care center like Gramma Franka and Toby will come visit me every sunday just like Papa Roy.  Maybe I will never get any better, but never get any worse.  How I handle it, as trite as it sounds, is a choice.  I can choose to allow this illness to come between me and God.  I can decide it’s too hard to get out of bed, too embarrassing to take communion, and too painful to move…  and I will go back to that desolate dark place I came from, shrivel up, and wither away.

I will make a choice.

Thank God I am alive.