(24) Learning Peace with the Flying Geese

Join us monthly for support and encouragement to live your best life with MS.

Last Thursday evening, January 19, 2017, kicked off our very first MS Support Group* meeting for the Central Kentucky area!  This monumental support effort has been in the works for a while, and a special thanks to Dana Galloway, our MS Coordinator, and Emily Wooldridge, fellow MS patient, for getting the ball rolling for MS warriors and their families.

What better way to appreciate those two gals and the brave souls who attended than to tell you about it in hopes that you, too, can come join us in the future! 

(My administrative skills peek out here.)

The meeting room gathered MS patients (both genders) and their family members despite the crazy Lexington/Nicholasville Road, close-of-business-day traffic and congestion.  The cool, soggy, misty rain added excitement in getting to the Central Baptist Hospital complex, newly renamed Baptist Health Lexington, on time, bad-hair-day hair intact, and nervous self focused and present.  After figuring out the best place to park (see graphic above) and finding our way to the lower level of the 1720 Building Education Center, we followed the arrowed signs to the meeting room where others had already arrived and commenced socializing.

I signed myself and my husband in on the clipboard and created our self-adhesive nametags.

His read “Mark Taylor, ‘I’m with her.’ >>>>>”  Mine read “Lori Taylor.”  🙂

Asserting courage despite my introverted anxiety, we chose two seats in the front row.  Well, actually, I chose the seats while Mark confirmed the location of the nearest restroom.

cookiesWhy is it that no one likes to sit in the front row anyway? 

As long as I don’t have to speak in front of the crowd, I personally can see better, hear better, and be closer to the snack table!  Haha!

So what happens first after everyone gets a snack, finds a seat, and we begin?  We do introductions. 

Of course, we do introductions!  I thought I might have to tell someone my name, but honestly, I had expected a smaller crowd.

No one wanted to go first, so our co-leader, Emily, began telling us about herself and her interest in support efforts.    She explained the name of our group, “Learn to Fly,” inspired by the mighty geese, their astonishing flying “v,” and the amazing way they help take care of one another.

By the way, she has incredible spunk and if she had any jitters, she hid it well.

When she told us a little bit of her story and then looked around for someone to begin, a hush fell over the room like church on Sunday (if you’re a certain denomination, of course, like me.  Wink. Wink.)  My patience had paid off, the support group was established and meeting, so the least I could do was to help break the ice.

I stand up, tell my name, where I’m from, who I’m with, how many kids I have, when I was diagnosed with MS, and was then supposed to tell something interesting about myself.  I confess my gold star nerd status, and then…

I don’t even remember what I said after that.  Hahaha!  I do remember people chuckling at me and Dana revealing that I was the secret newsletter planner/editor for our area MS Newsletter.  After I finished my little shpill, I sat back down and listened to what fellow MSers had to say.

For some, I listened to what they didn’t say.

In short, the following observations stuck out to me:

  • There were 15 MS patients (1 male, 14 female.)
  • At least 5 were diagnosed within the last year, and 6 were diagnosed or had symptoms for more than 20 years.
  • Most suffer from Relapsing-Remitting Multiple Sclerosis (which is the type that plagues me.)
  • More than half of participants seek Tysabri as their choice therapy; some take Copaxone; some, Tecfidera (which is currently the therapy I undergo;) a few, Lemtrada, while others take alternate medications, supplements, and at least one or two that do not currently undergo any drug therapy.
  • Symptoms that seem to be common amongst the group were vision disturbances, numbness and tingling, fatigue, depression, heat sensitivity, spasticity, lack of concentration and focus, brain fog, and either a struggle with or loss of use of different parts of the body.  I’m sure there were more that escapes my memory.  I am an MSer, after all.  Wink. Wink.

Listening to these other MS patients tell their stories, my own story felt a little more validated and legit.  Other people felt like me.

Maybe I’m not an alien after all.  The weirdness that is Multiple Sclerosis does exist, and I’m not the only one contending with its for-real crap.

I think it’s easy yet unintentional for family and friends to forget a person with MS (or any chronic illness) pushes through extra struggles to just make the day.  At times, there is no push at all.  The struggles are there.  The day plays out whether one is ready face it or not.

BUT…

The remarkable similarities regarding MS were not just symptoms and indications of suffering.

We were alike in our convictions and aspirations of overcoming.

Not everyone that day, or all days feels like putting up their fists to fight off the monsters.  But hearing another person talk about the ways they cope and get through their hardships can be enough to at least hunt up the boxing gloves.

The following good, sound advice, tips, and what things work for others reverberated in the discussion until they bounced and landed on me like glue:

  1. Trust Dr. Winkley.  Everyone loves Winkley!
  2. Make sure your reading materials and/or research information is Dana-approved.
  3. Rely on your support system–you know who they are.  It’s times like these when true colors shine bright for all to see.  If a dear one flakes out or avoids you as if you are contagious, mourn their loss, not yours.
  4. Stay positive!  It’s hard some days and when it is, refer to #3.
  5. Try to get as much exercise as possible.  Keeping the body active seems to be a common effect that produces excellent outcomes.
  6. Take your medication/therapy.  Don’t go off of it even if you think you are doing fine and do not need it.  Just trust your fellow MSers on this one.

And that is where I close this post and refer back to the name of the support group, “Learn to Fly.”  Geese are strong.  They are stronger together.

wild-geese Continue reading

(23) Support Group & Sprinkles

excited_cartoonMy very first MS Support Group meeting ever is happening this evening!

A shout out goes to Emily and Dana for knitting this group opportunity together for us MSers, and our families.

For all you central Kentucky folks who would like to participate in this newly formed support group, please contact Dana Galloway at Baptist Health Multiple Sclerosis Center at 859-260-3330 or mailto:dana.galloway1@bhsi.com for more information.  The group will be meeting every third Thursday evening each month at Baptist Health Education Center in Lexington.

Chances to learn, to relate, to empathize, and hopefully to encourage others sparks hope for me, personally.

Hope and possibilities get me from one day to the next.

I share this article by Vicky Uhland published in Momentum Magazine about how a little thing called resilience carries one through the difficulty of a chronic illness.  (Click here to read the article.)  Learning new ways to cope and new skills and habits can propel MSers to not just survive, but to thrive!

The video below, released by the National MS Society, shows how cupccake-with-sprinklesfolks in different walks of life handle the challenges that go hand-in-hand with MS.

Both the article and video sing the uplifting song of hope.  Hope gently rains down colorful sprinkles of possibility, and everyone likes sprinkles!

 

(22) Let Not Your Heart Be Troubled About Noxzema

sunset-girl

How well do you handle disappointment?  What do you do when it befalls you?

  1. Do you cry like a starved infant with a nasty diaper and no afternoon nap?  OR
  2. Do you pout like an overly spoiled kid (or adult) who got a middle piece of brownie instead of a corner?  OR
  3. Do you fume and blow steam out your ears like a train engine pulling 793 cars up a steep grade?  OR
  4. What?

To be honest, I have done all that and more.  I’m not proud of it, but I do hope that I am sharpening my coping skills each time I feel shattered.  Everyone has their own “dark night of the soul” at some point if not at multiple points.  I am no expert on coping with disappointment of any kind, but I can share some of the things I do my very best to keep in mind when I am wandering the dark, scary hallways of grief and uncertainty (concerning marriage, munchkins, and MS) in the middle of the night.


It was Christmastime at a relative’s house in the 1980s.  My family and I joined 101 other family members in a tiny house about the size of a rubix cube.  It came time to open gifts, and my sister and I were handed a nicely wrapped package with a little red bow.  Being the oldest, I opted for my sister to open hers first–a doll.  How nice!  She loved it! She grinned like a ‘possum and held it close to her chest.

And then it was my turn.

Everyone watched in a hushed roar while sweating bullets–not because of the gift, I’m pretty sure, but because of the fantastic, highly efficient, wood-burning stove.  What was inside my package?  I was a newcomer to the teen scene, and intense awkwardness (that only a teenager can understand) seized my body while being in the spotlight.  My shaky fingers peeled back the edges of the wrapping paper, began to crumple up the paper, and ripped the paper right off that small box.

(You know how sometimes you get gifts in cereal boxes and shoe boxes and such, right?  Well, this SURELY had been a mistake.)

So, I checked to make sure and opened the top of the box to reveal its contents.noxzema

Noxzema.

A blue jar of Noxzema.  Like THIS one.  ———–>      ———–>

Whaaaaa?

I instantaneously prayed for a black hole.  I sat there holding the jar of Noxema when  relatives began to say things like “Oh, how nice,” “What a thoughtful gift,” and “Your skin will look so good using that stuff.”  I managed a smile and a quick “Thank you” as my insides cringed with embarrassment, disappointment, hurt, confusion, absurdity, and a feeling of momentous discouragement.  Rather than be encouraged by the potential of the gift, the s-t-i-n-k-y stuff took a GIANT hunk of youthful cheer out of my small, frail teen courage and confidence.

Was I not pretty enough just the way I was?  Was a breakout on my forehead or chin really what others saw when they looked at me?

While the gift was intended to help my occasional teen skin issues, the disappointment and humiliation was unbearable.  I shrunk inside my shell and the doorway to the next room and watched others open “normal” gifts.  A big “L” for loser seared my anguished ego.


Years and years later, like 30 years later, I think back on that incident that left a scar on my pride, my brain, my heart.  I am no longer angry, sad, or hurt, about receiving the choice gift.  It’s the disappointment that sticks out most to me now that I am older and (hopefully) wiser.  The Noxzema was genuinely meant to be for the good of my T-zone–forehead, nose, and chin–but I took the gesture as me having a fault or defect, a lack of some sort of physical beauty, or possibly even as punishment for being a kid. (Haha! Not really. I was a good kid.)

The anger, sadness, hurt, embarrassment, confusion, foolishness, and disappointment I feel about that incident these days are not because of the acne-treatment-cream-Christmas-present.  Those things linger because I feel sorry for my adolescent self.  I wasn’t mature enough at the time to have realized that it would not be the death of me to have received it.  My poor, poor ignorance!

If only we could tell our younger selves what our older selves have learned and experienced over the years!

Since the 80s, I have been handed countless boxes with blue jars of Noxzema–some larger than others.  Disappointment comes in all shapes and sizes and intensity.  For instance, losing a childhood friend at the tender age of 19 years old, circumstances leading me away from a college career, the crashing horror of truly hard labor working a factory job, breakups, three high risk pregnancies, losses of grandparents, the diagnosis of Multiple Sclerosis, and the most recent personal loss from which I am trying to recover.whammy-time

Disappointment is more than an unexpected, unwelcome whammy.

Disappointment is a result of loss and therefore requires maneuvering through the grief process and coping.

I’ll be honest, I don’t handle grief very well. Being an empath, I feel every single emotion–good or bad–down in the marrow of my bones. BUT, I have learned four things (following, in short) that help me get through the awfulness.  (See the Five Stages of Grief here.)

PATIENCE.

Allowing myself to be sad and hurt and disappointed and angry is a start. I have learned to be kind to myself and not beat myself up if I don’t “get over it” as soon as others think I should. I am entitled to my feelings, and I have to sit with them for a while–some for longer than others, and that is okay.

ACCEPTANCE. 

Reminding myself that “it is what it is” and I cannot change “it” is important. If I can accept the fact that “it” has happened and then start formulating a new game plan, WOW!  That is a HUGE step in the right direction.  However, this is one of the hardest tasks.

CHANGE. 

First of all, no one asked me if I wanted to create a “new” normal. But whatever size blue jar has been handed to me, it is up to me to choose whether to use it for my benefit or not. I’ve failed miserably at this over the years.

I don’t like it.  I don’t want it.  It’s stupid.  I can’t believe this is happening.

(And so on and so forth.)

The quicker I start putting the pieces of myself back together, the faster I can move forward and live into this “new normal” that just is.  (Yes.  This is a punch in the face sometimes.  Well, a lot of times.)

RESILIENCE.

Being able to put pieces back together for me is like trying to be a master architect for a skyscraper project and only having an amateur general laborer’s knowledge.

I sulk.  I stomp.  I spit.

But with patience, accepting that I can do this with the right tools, and then using those tools, by golly it is possible and even probable that I can become Queen Resilience and keep building my skills for future ginormous projects–future jars of Noxzema.

tumblr_o38ijxbmzq1tvcmjco1_500

I highly advise that you be kind to yourself, people.  Be patient through the awfulness. “It” may never go away, but see “it” for what “it” is, and take the next step forward.  Baby steps are good.  And another piece of advice…Don’t let yourself get stuck. And for goodness sake, don’t let yourself stay stuck.  Being stuck like a wagon wheel in a rut takes extra momentum to break free and roll on.  The energy it takes to magnify and multiply momentum?  Ain’t nobody got time for that!  🙂  It is a process.

For me, I hope and pray that each time I’ve endured the process, greater and stronger tools have helped me gain the muscles needed to open Pandora’s boxes of new cobalt blue jars with the esteemed chemical-laden cream, Noxzema.

I feel convicted to put myself in the shoes of the giver.

The Noxzema wasn’t meant to hurt me, it was meant to help me. Truly.

I AM beautiful just the way I am. It is okay to be ME. There is nothing WRONG with me nor should I feel like others’ eyes only see any weakness or brokenness.  And, I am NOT being punished.  😉


I wished at the time I could throw that blasted blue jar of smelly goop into the nearest fiery pit.  If I had just seen down the road 30 years or so, I might have been able to get past the jar’s contents’ obnoxiously repulsive, eye-watering existence to smell the aroma of a growth opportunity.  I can’t promise that I would have jumped for joy about the lucky chance, but maybe.

As I unwrap the gifts of each new day, It is safe to say that I will not like them all.  I know that some will require that I suffer plausible abominations that leak out or sneak out of nowhere-box and into the fullness of my life, I still get to choose how to deal with the bump in the road.

Good can come from a bump, right?  (If not, generously apply Noxzema to the affected area.  Hahaha!)

z-me-cp-blueLord, let me always be able to smile and be grateful whether I like the package handed to me with its contents or not. Let me always feel encouraged in that moment and thereafter.  Let me feel that TODAY. ❤

Relative Z, really?  Noxzema?  Really?!!!  Hahahaha!  I am thankful even so and even though it may have taken me 30 years!

(21) Smile Awhile

A new year rolled in a few days ago, and it (or maybe just nosy people and overachievers) begs for resolutions, goals, plans, inklings of new, good things.  Just say no to complicated and yes to manageable.

Personally this past year, 2016, held a steaming pile of heartache for me.  In 2017, I look forward to cloud-like, fluffy piles of joy instead.  Rather than overwhelm myself with giant goals and resolutions, my something simple is bright and cheerful.

I just want to smile more.

all-smiles

That’s all. 

Lots of things make me smile, actually.  So what did I do?  I brainstormed.  I made a list (which is one of the things on the list.)  🙂  Without taking much time and overthinking the task, I identified things I can pay closer attention to this year…and intentionally smile more.  This two page brainstorm of softly falling rain includes but is certainly not limited to things that cause the spread of Lori-lips across my face.  What are the the common denominators?  Five basic categories showed up on my legal pad.

What makes me smile?


THINGS THAT ARE LIVING & BREATHING

  • My husband.  Well, of course my husband!  Who takes care of the load when I simply 18-bwcannot carry it?  He does.  Who supports me in all I do?  He does.  Who is dependable, trustworthy, morally sound, cute as a button, and has loved me through the betters and the worses?  Him.  Knowing he will be home soon from work, will guard the bedroom door when I need alone time, will go to the grocery store and plunge a toilet, and will show affection to gross out our girls totally makes me smile.  He’s made me smile for more than 20 years now.  🙂
  • My three daughters.  I carried those baby girls, delivered them, and have raised them with everything I have, everything I do and can be, and they don’t have to do a single thing to make me smile.  The gift they are is sufficient.  Can they make me frown and scowl and go completely mad?  Yes.  Yes, they can and yes, they do.  I love them anyway.  It is my pleasure to love them and be their mom.  End of story.  🙂
  • My extended family.  My parents, sister, grandparents, aunts, uncles, cousins, and allfriends-collage those ones thrice removed make me smile.  I even smile about the crazy ones.  My in-laws make me smile.  They raised my husband, so I am indebted to them for sure.  Family is constant, and they share history with me and know from whom, where, what, when, why, and how I/we came to be who we are.  🙂
  • My Tribe. (aka my friends.)  These women are the closest (and sometimes closer) thing to family there is.  As a matter of fact, I seek them out first with many things in my life because I know they care, they have my back, and they want to help.  They don’t care what I look like, when I call or text, or how precarious situations unfold.  They do care about my ability to smile, to talk, to laugh, to share, and to walk alongside them in life.  Yes.  My friends make me smile quicker than a leprechaun sliding down a rainbow with a pot of gold.  🙂
  • My church family, my writing groups, pretty much all babies and most animals (and baby animals! Oh!), elderly people, and the awesomeness of God’s green earth.  Perfect reasons to smile.  🙂

THINGS THAT INVOLVE MY FIVE SENSES

  • Other smiles.  When another person smiles at me, I have this involuntary reaction to mimic them.  It is my smile honoring theirs without even knowing why.  Smiles are contagious!  Try it!  🙂
  • Hugs. Hugs, hugs, hugs make me smile (unless its from someone I don’t know, or in a clown suit, or other rare forms of being.)  🙂
  • A compliment.  It took a long time to discover and practice saying “Thank you” when someone offers me a compliment.  They are not asking for anything in return.  Most intend simply to make someone feel good about themselves.  I learned not to deny them the good feeling they get when they know they’ve touched the soul.  🙂music
  • Music.  A melody that floats, dances, or rock ‘n’ rolls on the invisible sound waves we share makes me smile.  Music is feelings disguised as song.  I beam every time I hear “The Star Spangled Banner,” and it reminds me of the time I sang solo to begin commencement services for my 8th grade graduation.  Thinking of many who have sacrificed for our freedoms in this country and knowing we are protected, my appreciation and I can’t help but smile.  🙂
  • Comfort.  Air conditioning, comfortable clothes, and good fitting shoes are things that make me smile.  I appreciate these blessings and smile because of them.  🙂
  • Fresh flowers, Christmas lightssautéing onionssnow in winter and rain on a tin roof any ole time makes the little girl inside me light up and jump up and down.  🙂
  • Symmetry and color coordination in home décor and fashion.  I threw this one in here just to prove what a proud oddity I am.  🙂

THINGS THAT ARE TANGIBLE OR INTANGIBLE

  • favesTangibles.  Coffee, anything pink, chocolate, old photos, sparkly things, caramel frappes, office supplies (particularly pen, paper, and journals!), makeup, elevators (and valet parking,) a clean house with a vanished mountain of laundry, my label maker, bedroom ceiling fan, my iPhone and pc (and cable internet vs. dial-up.)  Yes. Please. And thank you!  🙂
  • Intangibles.  Organization.  Again, organization.  Memories captured in the mind, on paper, in photos, in tall tales and family history.  History, in general.  Laughing.  Good Causes.  Clean bill of health.  Relief of any MS relapses.  Peace–Absence of chaos and drama.  Positivity.  Feelings and emotions.  (I relate with those most of all!)  🙂

THINGS THAT ARE GIFTS FROM THE DIVINE

  • Overcomers and their stories.  Oh, how I love these!  Talk about warriors!  🙂
  • New Bible revelations, lessons, words, thoughts, challenges, and studies.  I am on a mission to grow!  🙂
  • Prosperity of others.  I admit that I can be green with envy sometimes, but I am grateful for the welfare and plenitude that others experience.  God does not have limits with His abundant love.  He has plenty for everyone!  🙂
  • Quiet time.  Meditation and prayer.  🙂
  • Nature.  (Minus the bugs and severe heat and humidity.  I’m so spoiled, huh?)  🙂
  • 1-encourageGifts, Purpose, and Meaning.  I believe we are all given individual gifts to give away to others to help fulfill our purpose and from which we draw meaning.  🙂
  • Encouragement.  I like to dish it out and soak it in.  🙂

THINGS THAT SILENTLY SCREAM, LIGHTS! CAMERA! ACTION!

  • Giving.  Better than receiving, any time!  🙂
  • Accepting a gift or good deed graciously.  I finally learned to allow this and not deny others a blessing too.  🙂
  • deepest-yearningCreating!  Crafting, writing, scrapbooking, designing digital graphics, collaging, editing photos.  These things are a natural high.  Of course, I smile!  🙂
  • Learning.  My kids think I’m a total nerd but whatever!  I love to learn new things.  🙂
  • Trying to dance.  Umm…well, I don’t have ANY great dance moves but I like to do it and enjoy and own my goofiness.  🙂
  • Checking off my To Do List.  I will write down things I’ve already done that I forgot to list just so I can mark them off.  haha!  🙂
  • Singing.  Singing loudly for all to hear (if they could because I’m in my minivan rockin’ out to Bruno Mars with the windows up.)  🙂
  • Dreaming new dreams.  I decided that dreaming wasn’t just for kids.  And besides, who decided that I wasn’t a kid anymore?  Yeah.  🙂
  • Traveling.  Just give me a bottomless bank account, and I would go see the world.  🙂
  • Coming Home.  After visiting the new, the old, the ancient, the most strikingly beautiful places, I am content to come right back home–the place that rises up to meet me exactly as I am.  🙂

So as I close this post, my cheeks are quivering from all the smiling I’ve done just thinking about these things.  Joy is not just found in the large goals and accomplishments of life.  It is hidden in all the nooks and crannies of ordinary living and breathing.  One of my favorite childhood songs describes the flavor-full vanilla charm of our ho-hum, humdrum, mundane home on the range.

O, give me a home where the buffalo roam, where the deer and the antelope play

Where seldom is heard a discouraging word, and the skies are not cloudy all day.

Home, home on the range, where the deer and the antelope play

Where seldom is heard a discouraging word, and the skies are not cloudy all day.

Do not be discouraged or overwhelmed by the new year and the pressure to perform.

Come sit down with me, grab a blade of grass or straw to chew on, and let’s smile awhile under the big skies.  Besides, I bet it’s hilarious to watch deer and antelope play!

 

(20) The Elephant in the Room

grandma-gilreathAs a high schooler when my Grandma Gilreath passed away suddenly, I experienced grief for the first time over someone I dearly loved.  I felt the pain of loss and grieved over never getting to witness the way she would see to everyone’s needs when all the family gathered to visit.  I cried during the funeral service for my own self but for other family members who were feeling the same sting as I.  It hurt me that they hurt and therefore, my grief exponentially intensified.

It would never be the same.

I had questions.  Did she suffer?  Would she miss me as much as I would miss her?  Did she worry about how her family would manage?  How would I get through the void of her absence?  What was life going to look like without her?  Would I always feel so brokenhearted and raw with emotions?

peanutThe very first time I can remember what grief felt like was when I was a child, about four years old.  I was an only child at that point and relied on my dog, Peanut, to be my companion.  He was faithful to be with me wherever my two little feet would go.  After being told that Peanut had gotten sick and was found dead under a parked vehicle, I was overcome with grief.  (Why I associated death with the color red, I do not know, but I would not drink red Kool-aid after that for a long time.  Weird, I know.)

My little heart was broken because of my worry.

Was he in pain?  Did he suffer?  Was he cold?  Was he lonely?  Was he scared?  Did he see Jesus?  Was he going to miss me too?  Would he go to heaven?  All these thoughts lingered in my heart for a while.

high-school-gradThe next major grief I felt was not over a person, but a circumstance, a loss of a dream.  Having been such a dedicated student all through my school years, I grieved the fact that I had failed to continue college past my freshman year.  Education was highly prized in my family and represented success and all things good and smart.  I felt as if everyone was counting on me–I was to set an example for all my younger cousins.

What a big, fat failure with a capital F!

That’s what grieved me anyway.  I had done everything I could to survive day to day…independently…while keeping my own bills paid without help from anyone or any government assistance.  Working to stay alive and keep my financial obligations fulfilled was the maximum I could do with the time and energy I had…

…and it had not been enough.

I thought that anyway.  That grief would travel with me and haunt me for decades.  I would not feel as an up-to-par human because of the lack of that fine paper hanging in a frame on a wall.  This low self-esteem also caused low self-confidence and a need to prove myself over and over again–to prove my intelligence, my work ethic, and my being-good-enough for years and years to come.

martisueOne of the single most, worst cases of grief I have ever and possibly will ever have experienced was the unexpected loss of my childhood friend, Marti Sue at 19 years old.  She was placed in a medically induced coma to keep her from fighting the ventilator so she could breathe after suffering a terrible case of bronchitis turned pneumonia.  After seven days in ICU, she slipped away.

Before going to the hospital, she had been with me at my hew home as I moved in so she could celebrate with me.  For years I would blame myself for not have gotten her to a doctor sooner.  I would believe for a long time afterward that her death was due to my lack of care for my friend and not getting her medical care sooner.  My grief on that day of her funeral turned me into someone I had never had the guts to be before.

I was stone cold.

I did not want to hear anyone’s words of condolences or be touched by anyone trying to console me.  This was a bold action considering I had always conducted myself in a manner to keep from hurting anyone’s feelings.  That day I didn’t care about anything but my anger.  My heart had been shattered, and there was no one that could pick up the pieces and put it all back together.  It was an impossible task.  So, I drove myself two hours home where I would spend the next year and a half in a state of shock and numbness.  I didn’t trust what life would throw at me next, and my hope of goodness had been snuffed out.

I questioned God.  Are you even there, God?  How could you let this happen?  You had the power to heal her and you didn’t?  She had her whole life ahead of her…why did you take her so soon?  How could you?  Don’t you love me?  Are you there?  Do you even exist at all?

Life carried on, but I lived in a constant bubble afraid of everything and trusting very little of anything.  I had slightly forgiven God for taking my friend.  (Ironic, huh?)  I married, bought a house with my husband, and had two daughters in those next 18 years after Marti’s passing.

Imy-mamawn the spring of 2008, the biggest cheerleader in my entire life grew increasingly ill and left us on Mother’s Day that May.  I knew my mamaw was better off where she was going than to stay here and suffer, but it hurt to lose our incomparable bond.

More questions arose.  How am I going to survive without her?  Who is going to listen and support me in the same way she did?  How would my children ever know just how wonderful she was?  What would happen to our extended family now?  Would we fall apart and go separate ways?  Would we make the time to care about each other as she had cared about us?  How am I going to go the rest of my life without being able to see or talk with her, hug or drink coffee with her, laugh and exchange stories with her?  How could I tell her all my worries and receive nothing but love, encouragement, and support in return?  How?

papawJust two and a half years later, I would lose my grandpa and experience the grief of losing one of the most important elders in our family.  Despite his quirks, he was going to be missed in ways we couldn’t even fathom at the time.

How are my girls going to know and experience hands-on and ears-in family history and family togetherness without him and my grandma?  Would our family drift away from each other?  What am I supposed to do?  I don’t have the strength or energy to plead for us to come together to visit and enjoy the company of one another, so how will it all work out?

my-ms-journeyPrior to losing my grandpa, I experienced a life-altering grief that still affects me today.  It is not over a person per se, but over control.  After suffering two separate relapses, I was diagnosed with Multiple Sclerosis in January 2010.

So many questions soared through my crowded mind it would put a presidential candidate in a debate tremble.  What is this?  Why did it happen to me?  What’s going to happen to me?  To my marriage?  To my three daughters?  Our livelihood?  Will I be a burden on my family?  Do I have anything left to offer at this point?  I’m no good for anything now, God, why not just take me on? 

Now that was some crazy grief talk!  But in all honesty, that is how grief attacked.  I do still grieve over this diagnosis especially if I am having trouble with a relapse or a side effect from the medication that I take to try and keep it in remission.  Through prayer, friends, family, my dear husband, bible study, reaching out to connect to a larger community of people, changing my focus, I can now try and rehearse THIS question everyday as best I can…

What can I do today versus what can’t I do today? 

This has helped carry me.

My most recent grief does not have to do with death or self-esteem, lack of a college degree or even a chronic diagnosis, but grief over a child making poor, life-altering choices and shutting out everyone who has ever loved her to be with a boy.  The situation is bleak watching her drop out of college, be satisfied with homelessness and temporary housing, with no money, no job, no car, little to no food, and with someone who lacks ambition.  Everything she’s been taught in the last 18 years seems to have gone down the tubes in a matter or months.

I am inundated with questions.  How did this happen?  How could she be so hooked with someone who has so little in common with her?  What is the appeal?  Can’t she see what is happening right before her eyes?  How can she shut out her family and even her closest childhood best friends?  Doesn’t she see a problem with this situation?  How can it be that if she were to see it happening in one of her friends’ lives, she would be adamant about helping them see the light?  How can she let opportunity pass her by so easily?  Doesn’t she know how hard it will be to survive?  Doesn’t she care about all these debts incurred for school only to throw her education away?  And for what?  How could she put us through such worry and anguish.  I thought she loved us more than that.  Doesn’t she?  Does she even love us at all anymore?  Since when do we not matter in her life but the family of another does? 

And the questions keep circling around my mind like vultures picking apart my sanity. 

I have cried louder and harder and with such earth shaking agony than any other time in my 42 years of life.

This is a new grief for me.

And, I am trying to navigate it as best I can.

I hurt.  I hurt a lot.

I hurt emotionally and now physically.

Like it has been in all other incidents with grief, it is difficult to see around the bend and know for sure that I’m going to make it and that everything will be okay eventually.

What if it doesn’t become okay?  If it doesn’t, how can I find the place and land on that space of All Will Be Well? 

Because right now, it doesn’t feel well at all.  I’m not well.  My heart is broken, and I don’t know which way to turn to make it better.  (I know that I can’t really.)

It is the grief of not being able to check things off a To Do List to neaten things up and start moving forward.  It is the grief knowing that it is not MY To Do List. 

So, here I sit.

Grieving.  Wailing.  Agonizing.  Feeling miserable in mind and body.  I know I need to ask more questions.  I need to listen to that still, small voice that is there if I can turn down the volume on all the other voices.

What is it that I can do instead of what I can’t do?  I can love.

How can I make this excruciating pain lessen and the heartbeat in my ears go away?  I can love (and maybe see a doctor.)

How can I get through this day?  This week?  This next month, the holidays, and beyond?  I can love.

That is the thing I can do. 

my-broken-heartAnd because I can love, I can experience God in ways I never encountered before.  I can pray for the ability to extend grace.  I can hope for change.  I can pray for protection.  I can take time to start healing this gash in my heart.  I can trust that people will understand when I need time to just “be” instead of to “do.”  I can pray for skills and resources, friends and family support, and the wisdom and peace that I am only going to find in the loving arms of Jesus Christ.

I can manage a true method of getting through grief–to manage one day at a time. 

My question after a period of time and experiencing different types of grief has transitioned.

It once was a question to God.  Do you even exist?

Now it is a question I ask myself in the sight of God.  Do I exist evenly in You?

I understand that grief is just a natural part of life, but it doesn’t mean I have to like it.  I can even hate it if I want to, but I must remain in the same room with it because I have no choice.  Nobody ever does.  I just need to sit with it awhile.  I can’t make it go away, but I can learn how to navigate the room even with it here.  I don’t have to give it permission to paralyze me.  I do realize that it buddies up with its friend, fear, to intimidate my faith, my hope, my love.  And even though it is hard to breathe right now and I am battered beyond belief, I will stand again.  I will be strong again.  I will keep my convictions and beliefs intact.  I will tend to my bruises with prayer and good self-care.  I will hobble if I must.  But, I will pull up a chair for now and just sit.  And take the time necessary to heal.

I’ll sit with grief for a while. 

I might not like it, but I’ll do it.

 

 

 

(19) Feathers & Woods

Dear Blog,  I am still here.

I’ve gotten lazy, I suppose, about finding and keeping enough hope safely tucked away, especially for rainy days.

My searches for a bigger stash of the thing with feathers* have only been picking up Vegas-style hope.  You know…the kind that is conspicuous right in front of you.  That kind of hope it easy to find and gorgeous like the bright, flashing lights of Las Vegas.  (Did you know that it’s the only place on Earth that can be seen from space?) This brand of hope grabs my attention like Vegas street performers, shows and entertainment, ah-mazing fountains, (ahem, Bellagio!) incredible architecture, gleeful sounds of lucky winners, and the bustling excitement of just being there!

I can sit all day with evident and easy feathers*!

But what if I started looking a little harder and a little smaller for hope?

I’m a country girl, after all.  And, McCreary County, Kentucky is nothing like Las Vegas!

Yesterday, as an exercise in looking harder and smaller, I thought about the wonderful world of simplicity I experienced as a kid in McCreary County.  Back then, immaturity impaired my cognizance of how spectacular simple things were!  It is only now through vivid adult retrospection, I find those things quite riveting…and humbling.

It’s good to take a walk in the woods**.

As a kid growing up during the 70s and 80s in Stearns, it was a gift to be surrounded by Daniel Boone National Forest, a place where the sun creeps up over the hills and hollers to play peek-a-boo with its inhabitants, warms the day, and gets those cicadas wildly reverberating in the wide rural expanse.

It’s a place where I once could listen to Mrs. Yancey draw water from her well and hear her sing “Amazing Grace” even over the screeching pulley system.

I could do countless things in that place which some would consider small fluff.  Examples follow:

  • I could dream of 1000 different ways to play with seasons-old acorns from a generation before.  Those trees and more trees stood strong and mighty, gave tremendous shade, and held fast in winds and in calm like good friends–always there, always listening, always watching over.
  • I could catch a show of dust flying ’round about, funnel-like, caused by dirt daubers or watch the competition of grasshoppers leaping for best height and length.
  • I could spend all day saluting dandelions–part of them yellow as sunbursts and part as snowy puffs–all standing at attention.
  • I could heed the call of the earthy path leading to my Mamaw’s house.  It invited me to travail over tree friends’ woody veins sticking up out of the ground and follow its well-worn trail to one of my favorite places ever.
  • I could rely on blankets of leaves to offer comfort when I would fall, on the bench swing to sing me a mute song of peace, on the blue skies and cumulus clouds (in the middle of seemingly nowhere) to tease my imagination about the places it could see besides my hometown.
  • I could count on wild-growing blackberries and poke sallet begging to be plucked and devoured.
  • I could visit the little creek down over the hill.  It coaxed me to its quiet retreat–my own Terabithia where the stream took its sweet, easy time to flow through my family’s property and where respite and a cool drink for the deer and other small land creatures was offered.
  • I could whisper beneath the canopy of trees leading down to the creek and feel confident in their promise to keep my secrets safe within their giant tent.
  • I could watch the big tree stump at the southeast corner of the house show off little wildflowers that sprouted around it.
  • I could appreciate the unique sound of popping and crackling loose gravel in the driveway sounding off under my shoes with each step.  (I loved sitting on the edge of the couch listening to cowboys with their jingling, boots and spurs pounding desert floor in old western tv shows and movies and loved to mimic them.)
  • I could enjoy sparse traffic and the space it made for me to ride my gently used, pink bicycle (with a flowered-y banana seat and cruiser handlebars) so I could pretend to be Daisy Duke chasing bad guys.

What a delight to live in modest McCreary County!

It would be a shame to carelessly forget these little things that together with bigger things, make up the sum of my experience.

So, I was reminded.

After coming out of an ear/nose/throat specialist’s office yesterday, I burst into tears.  I’d been told that I had a perforated tympanic membrane (eardrum) from last week’s ear infection but was getting over it beautifully as a result of the antibiotics.  Although the double ear infection was in the rearview mirror, I still experienced pressure, hushed hearing, and vertigo.  The ENT specialist advised that my hearing loss was not caused by the infection.  He believed that the nerve deterioration was a result of a separate issue.  He prescribed a second round of antibiotics (to be on the safe side) and steroids to work toward reducing the inflammation and vertigo.  Maybe that will make it better.

Maybe.

I heard the doctor’s words edged between his silence whispering “hey, it’s most likely caused by an MS relapse.”

I carefully walked back up to the receptionist desk and made a follow-up appointment to come back in two weeks.

My dad was waiting in the lobby for me. ( Bless him!  He waited out there for almost two hours!)

Volcanic-like energy manifested into uncontrollable tears after coming out of the office, into the hallway, and shutting the door behind us.  Dad started to offer his arm to escort his dizzy, nauseous daughter but did something different instead.  He loosened his elbow from mine, dropped his arm by his side, and took hold of my hand.  We walked in slow motion, it seemed, down the long corridor to the main exit where he safely deposited me against the outer wall and fast-walked to fetch the vehicle.

It was in those quiet few minutes, standing there crying, I realized the significance of what had just happened.

I was overcome with grief at the idea of MS further demyelinating nerves in my brain and spine.

BUT, I also felt a sense of wow-ness!

Yes, it completely sucks that MS exists.  Yes, it is frustrating to be facing another relapse.  Yes, I will at some point lose my footing and fall head first into the doorway of my own pity party.

STILL…

That awesomeness–my daddy holding my hand–reminded me that hope can be as small as the space between fingers.  Hope can be a slow walk down the corridor.  Hope can be the wait time until you are picked (back) up again.

I’m still perturbed about the MS relapse thing, the ear pressure, hearing loss, and the vertigo.

But, I am trying to focus on the biggest, small thing in a long time–the fact that my daddy held my hand and my heart with his own tender hand and heart.  (If you know my dad well, you’d know that he is a man of few words, more of a behind-the-scenes guy rather than displaying emotions on the big stage.  It was a huge deal!)

Yesterday, hand in hand weaved fingers and part of the gap between depression and acceptance.  This woven blanket of warmth has covered me when I need it most.

So, why does the magic of hope have to look and feel grand like a blockbuster movie premiere?

It does not have to.

We must take a moment to intentionally study our surroundings and make note of the magic, the hope that abounds in the cracks and crevices of life.

You don’t have to be from a rural area, of course, to do this paying-attention-to-details thing.

But, attend the school of thought that graduates its students with a degree in passionate expeditions of discovery

Hope can’t be totally hidden away nor be completely destroyed.  You may just have to look a little harder and a little smaller.


Feathers*…

Hope Is the Thing with Feathers

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Woods**…

Woods

 

(18) Superpowers and Snow Days

Today is snow day #4, and tomorrow has already been called off.  Three girls giggle at high pitches.  The volume crescendos.

QuestionsMy mind busies itself with thoughts of scholarship deadlines, first grade’s Unit #4 flash cards, what to cook for dinner tonight, balancing the checkbook, my friend’s house fire, the mountain of laundry that grows by waaaay more than an inch a day, revising a novel written two years ago, struggles in the family, filing taxes, that pesky project list that never seems to get done, and frustration from unrelenting fatigue.  Among those are these

  • I did reschedule that appointment for tomorrow due to the impending winter storm, right? 
  • I hope we don’t need milk and bread at this point.  <sigh> 
  • Why is my sheltie coughing and hacking? 
  • Man, I really need to get my roots touched up and a hair trim. 
  • Do my loved ones know how much I really love them? 
  • I need to write a new blog post. 
  • I miss my friend, Elizabeth…and April…Cynthia and Susan and Patti and Carol and… 
  • Planning a birthday party that involves a mall and a sleepover with teenage girls makes me shiver. 
  • Maybe I should call Mom and Dad or Jules to see if they’d like three girls for the night.  Lord, have mercy.  I do love them, but they sure bring out the fight or flight in me! 

“Quiet people have the loudest minds.”  –Stephen Hawking

I can’t speak for all persons, but I have a brain that never shuts down…not even in my sleep.  You can ask my husband, Mark.  My dreams are what Hollywood movies are made of.  Details.  Color.  More details.  Heart-racing action.  Throat-gripping horror.  Pee-your-pants funny.  Feelings and romance till you puke. 

And then more. 

Espionage in foreign countries, trolls with big teeth, Mark Wahlberg, <insert evil grin here> serenades and string music, being a beloved cast member on the set of Friends, falls from cliffs, antebellum houses with ghosts, tea with the Queen, stardom of all kinds, psycho maniacs chasing me, hot pink hair, fine dining on trains, hangouts with Oprah, roller-blading with some dude in tights, Greek mythology, crises resolved by Jim Caviezel, shame from wearing only underwear in public, and other I-could-make-millions-from-this stuff.

Somewhere in all that chaos, hot air blows speculation around in my brain threatening to melt my frame of mind. 

What torment does MS have up its sleeve next?

I consider myself to be fairly intelligent, romantically optimistic, and wrapped in the love of Christ. 

Still yet…I allow the abuse. 

It is preposterous to let such poison roam around in my head.  I know better.  I know better.  And, I still do it.

In my last blog post toward the end of September 2015 (too long ago,) I wrote about encouragement and anger and forging ahead.  I still believe in encouragement.  I ride the lightning bolt of anger still and strike out more than I’d like.  I still desire to forge ahead.  Some days, I have the strength to deal with the plague of worry caused by having a chronic disease.  Other days, I’m a wet noodle.

tecfideraMy neurologist seemed to think that taking the medication, Gilenya, caused a greater risk for me to get Shingles.  It is an immunosuppressant after all.  He immediately took me off the drug and vows to never let me take it again.  The only other drug that would work at the same level (or quite a bit better according to my doctor) is Tysabri—the one that poses a great risk for me (more than a vast majority of other patients) to develop PML, aka, a disabling or possibly fatal brain infection.  I just won’t go there.  After finally getting over the hurdle of Shingles, we talked about and decided to try the next best thing, Tecfidera.  The run down of effectiveness of these three drugs goes like this…

  • Tysabri is waaaaaay up here (as far as I can reach toward the ceiling.)
  • Gilenya works half as well as Tysabri for MS.
  • Tecfidera…well, it comes in half as effective as Gilenya.

Man, oh man.

Knowing this and pairing it with the prognosis (a masterpiece that my neurologist paints where the lines and colors veil the progression of the disease under my nose as I stare at the face value of day-to-day and relapses here and there) really try to steal my joy.  Blah, blah, blah. 

Now, if anyone knows Jesus, they know true everlasting joy.  But on this cold snowy day, I am weak and whiny and lost in the icy glaze of uncertainty.  Be that as it may, it’s a day like today when I remind myself of my motto (included at the top of my blog…)

One Day at a Time.  Are you singing that old hymn now? Winking smile

For it is possible that I will dream tonight of sandy beaches and sea salt air and refreshment from fruity drinks adorned with tiny umbrellas and sliced fruit wedges.  Maybe tomorrow, my kids will wake up and have the sudden urge to blast through our cleaning To Do list with their new superpowers—being mean, teen, cleaning machines with their sidekick supergirl sister, the lovely Laving and Laundering Lauren.  Mark might cook dinner and balance the checkbook.  Some people I Supergirls in Maskslove could make good, healthy choices leading them toward prosperity, and many people could make paying it forward part of their everyday routine.  I could be visited by my muse and be highly inspired to create through excellent expression.  Miracles happen.  Smile

Perhaps tomorrow, my spirit will be renewed, and I’ll store up some of my hope and courage.

Therefore on this fourth snow day, I will not let my heart grow cold and hard.  Are ya with me?  I think we can do this.  One chunk of day at a time.

Mights, coulds, and maybes lie in tomorrow.  And, the day after that.

(P.S.  I’m really hoping for the superpowers!)