Beyond Isolation

Behind the door to our home is me and my dog much of the day and evening.  I support my husband in his athletic, church and community endeavors knowing that it will often leave me home alone many nights, days, and parts of weekends.  Don’t want to bring him down with the “dog days” of this illness and he needs a break, some balance in his life too.  This process of healing could take another year or more; it’s not so bad in the 15-minute increments in which I live my life anyways.  Too bad that many people leave your life when you go through trials or can’t be there at the usual places of connection.  It’s just how it is.  But hey, I am grateful for you my furry Elle; I’m just tired of being alone!

In spirit, I know that I am not alone.   In the Bible we find that our Lord promises to those who know and love Him that: 

. . . surely I am with you always, to the very end of the age.  Matt 28:20 NIV

I learned when I found myself single for the four years before meeting Steve, to take my Heavenly Husband with me wherever I go:  Jesus Christ.   “Come on JC let’s go!,” I would say when getting into my little black race car AKA Honda Civic.   Or when facing illness in the past, I took a friend’s advice and played Christian music especially hymns.  Never was into listening to hymns at home until those times.  Sure was cool having angelic music fill my condo as the sunlight illuminated my rest haven.  He even spoke to me on occasion.  How precious was my Jesus to me then and now as well.

These days He speaks to me occasionally and goes with me from room to room, place to place, this time in my pick up truck.  My how things have changed!  Instead of a wrought-iron balcony lush with planters, an antique mirror, and a sweet table for two, my world outside is more spacious indeed.  He has allowed me to begin to landscape an entire yard:  growing many more plants than ever before, creating custom trellises, designing a flagstone patio, and even harvesting some veggies too.  My Lord knows my love language of gardening!  It is here that find my solace to be peaceful and not isolatory.  It is here that the sun reminds me of His glory, His truth, His holiness.   His light casts off the darkness and fills my santuary, my heart.

Feeling better already just writing this blog.  Say, if you’re reading this, how about dropping me a note or making a quick call sometime?  I promise I won’t be a drone about the rigors of treatment.  There are more important things happening just outside my window.  You shoulda seen the goldfinch drinking out of the royal blue birdbath this afternoon.  Stunning colors of His glory, just for me to enjoy today.  Cool beans. 

What’s up with your world?

Go Elle!

My Little Buddy Today

Oh Elle!  I guess you need to go out, right?  Sometimes it takes a dog’s whining to give me the courage to try to move off the couch when my body is shaking involuntarily because of this illness.  And I appreciated it today.  In the midst of what would be 23 of 24 hours of this crap-ola-ski (again, Polish) I became immobilized by fear:  will these symptoms never end?  Somehow while standing on the back patio tossing the ball for my little buddy, they stopped.  How’d she do that?  Must have been puppy love.  

However, she was not outdone by my Stevers earlier today.  I had showered and drove to church a little late this morning to meet my hubby who had left eariler; that’s the one hour missing in the 23 of 24 hours noted above.  Sure was lovely worshipping together with Steve holding me a little closer than usual.  (He had seen what the morning was like earlier as he brought me breakfast in bed then watched it sit next to me until there was a break in the symptoms to enjoy it a bit later.)  We chatted with a few friends after church.  The sounds of so much activity started to get to me so much as a headache emerged and intensified, that I couldn’t even speak clearly before blurting out that I “had to go.”  Guess Steve thought I was driving myself home.  

Driving home?  Not exactly.  I sat in my truck (my own cool 4×4), as the shaking began and increased.  There’s a new version of these “tics” that has begun since the 80-hour hiatus earlier this week:  resting may not extinguish the episode.  Just move and WHACK!, a gross motor anomaly with a gutteral utterance oozes out.  Lord have mercy!  Didn’t know what I was going to do as dialing the phone to Steve wasn’t possible yet.  Then I saw him in my rear view mirror, getting into his vehicle gratefully parked within view.  I hit the speed dial on my cell and he answered! Yeah God!  Before long we figured out that he would be driving me home in his car.  So he transferred me and my stuff over there, moved my truck to a better spot in the parking lot, and off we went home.  There was a Missions Night tonight at church and something would surely work out to pick it up when we returned later.  

Not exactly.   Never got out of bed or off the couch in time to join Steve at church.  The tics would not stop!  So I turned on the tube.  I used to like watching golf on T.V. as a kid and 2 of the 6 stations we get were golf.  Opted for the McKales Navy re-runs instead.  All day long, McKales Navy until a better choice came along . . . and that option was my sweet dog calling to me.  Needing ME!  Okay little buddy, I’m here for you!  So I say, “Go Elle!” 

By the way, you folks out there know that I always say, “Go Steve,”  usually along the bank of a river as my River Bear races by in his Stellar SE Ultra kayak extraordinaire.  Stevers is my hero first and foremost in this life.  Today after returning home from church, you changed your clothes into super cyclist mode and rode your bike back to church in the 90+ degree heat to rescue my abandoned Frontier.  Wow!  Another “Goooooooooooo Steeeeeeeeeeeeeeeeeeve” is in order!  Then when you are gone, it’s, “Goooooooooo Elleeeeeeeeeee!”    I am richly blessed!

And thank you Lord, for your grace today.  It’s a different kind of life for me right now but not without it’s own sweet moments.  Yes, like having Jesus with skin on and, er, fur on.  :J

A different kind of date night

After feeling sick most of the day, it was from bed at 5:00 p.m. that I called Steve to cancel our date tonight.  We had planned to go to his company night at Tin Caps stadium, the local AAA ballpark.  Premium food and tickets all for free, it’s the closest I can get to pro ball here in Indiana.  I enjoy watching baseball and Steve, not so much!  He said he didn’t mind not going as he didn’t want to sit out in the hot sun and be up late the night before his day-trip to Traverse City, Michigan tomorrow.  Cool beans.  Gotta love that guy!

It was 38 minutes later before I could get my arms to move, to get my phone, to get my hands to dial the numbers, to get my thoughts to get ready to emerge into words to call him back.  This is Chronic Lyme Disease.  You feel like there is a blanket wrapped around your brain, your head, your hands, your body: a separate one wrapped around each part.  Oh and did I mention the seizure-like tics?  After each one, the numbing magnifies and you must start the initiation process over again for any goal-directed activity.  When I lift my arm, my wrist goes limp.  And when I do complete a step of a task, I am even more tired because of the immense cognitive override that must occur to complete it.  Sometimes I can put a few steps together and this is all I need to complete the task.  Like getting up to use the bathroom.  Wow, made it to the white throne.  Now I’m done an need to get myself back to bed before the tics begin again.  Then I get back to bed, lie on my side and endure the involuntary shaking and spontaneous moans for as long as the damage to my central nervous system says so.  Usually, gratefully, not more than 45 seconds per episode, with episodes strung together with  breaks to catch my breath.  Today the ordeal lasted 2 1/2 hours. 

So I called Steve and he was open to finding the last bit of available cash needed to bring home Chinese food for dinner.  Yeah God!  No cooking needed (or possible!) tonight!  I even had an overdue DVD from the library available to watch.  There.  The alternative date night was set.  Some goodness redeemed for the day.  Love sitting next to my guy doing just about anything.  Sweet.  Moving literally in slow motion for the next hour, took a short treatment bath, a shower and got my hair combed before my hubby got home with the goodies.   Wasn’t able to speak much for the first 1/2 hour then gradually things improved.  Chinese food is good medicine for sooooooo many things, without MSG of course.

This is the second time within a month for this kind of alternative date night.  Cancel plans, eat some food watching a DVD.  Last time I had tics through the first half of the movie.  This time went much better.    Thank you Jesus!  Thank you Lord for a husband who is not rattled by this crap-ola-ski.  (That’s Polish for the unmentionable word.)  Steve exudes grace.  I love him and am very grateful for him and for you Lord, in my life.  Please bless my Stevers on the road tomorrow with a meaningful trip as he develops a new part time business in kayaking.  And bless me too.  Would really love to be able to get my haircut tomorrow so I can feel better about myself.  Would love to be able to make it to the Twilight Garden Walk too.  I trust you, Lord.  Goodnight. 

It was a goodnight, after all . . .

72 Hours!

On the cusp of 72 hours without:

  • “neuromuscular events”
  • tics
  • seizure-like tics
  • tremors
  • shakes

Praise be to the Lord!

Jeremiah 29:13

And ye shall seek me, and find me, when ye shall search for me with all your heart.

Image                                      

This is a resurrection lily.  Long, green leaves emerge in springtime with the tulips then fade with the warmth of summer.  By the 4th of July, I forget that there are there, under the soil.  Then in the Fall, these striking pink, yellow, and violet lillies emerge on single stems, sharing its beauty for just under 2 weeks.   I received these from a friend when I was going through a tough time three years ago.  Now they are a sweet reminder of her thoughtfulness and the majesty of the Creator of the universe. 

Just when I am overwhelmed at my physical struggles, my mind consumed with doomsday thinking about this or that, if I can squeak out a prayer, He answers! My Lord and Savior meets me right there in my sweat-soaked nightgown with His loving presence.  If I but remain faithful to trust Him, call upon Him, He shows me His beauty and grace, mercy and peace, gentleness and comfort.   I am not alone.

If the resurrection lily gets a do-over in how it first appears, then I must also do-over my first impression of an unlovely moment in time.  It an’t the whole story.  It isn’t the end of the story either.

No suprise that God speaks to me through His creation.  Mankind started the  journey of life in a Garden.  I blush like the lily.  He knows my heart so well, cares for the cries of my heart so well.  Thank you for meeting me at 1:00 a.m. today.  Thank you for loving me,

sweet Jesus.