The love in my comb

Gently he pulled the brush through my hair as if each stroke was a special salve for my soul.  You could hear nothing in the silence, not even his breath or mine.  The darkness fell between us.  The moment hung there in time.  We had just witnessed so much . . . there was no need for words.  Only love moved from his hand to me, gently freeing the hairs once tangled in the madness that had just gone before us.  You might see this as an act of romance I suppose.  But this night no romance would explain this kind of tenderness that now drifted between us.  We simply enjoyed the silence, the calm, the love lain there slightly wounded just up from the floor.

That love was near me that night alright, well within my grasp.  Oh I felt it with each stroke of the brush that was the tool he could reach first in the awkward darkness.  I felt it from his warmth standing closely behind me as I sat with my legs uncomfortably collapsed underneath me on the hard tiled floor.  The rug, marred with uneven loops from the dogs paws underfoot where she slept each night, gave little warmth.  My hair was wet and so were my shoulders.  The stuggle that came with forcing myself to wash my hair in the tub at the tail end of a convulsive episode had subsided into a senseless stupor.  With my broken sentence my beloved found my grooming basket under the sink.  It made no difference what implement he chose.  His love would find its way to me with soothing swiftness followed by the tempo we might take one fine day, walking along a seashore somewhere beautiful.

Oh that I should have such an opportunity again!  Will his capable hands finger their way through my auburn hair blowing in the warm sunshine of a summer day?  Would he tighten the drawstring clasp beneath my chin of the paddling hat matched with our tandem outrigger canoe as we headed out onto the glistening lake?  Or when his arm slips around my waist as we laugh at our pup racing along the stream of a wooded path, will I forget that our tender moments were once matched with sorrow so deep?  I do hope so, Gentle Reader.  For all of us who suffer what we ought not to endure, I do pray that restoration, healing, and mercy will cover what was once ugly with that which is lovely again and again.

Until that glorious day for me, I shall keep my eyes fixed on the sunshine streaming through my bedroom window.  I know by Whose creation it shines and that one day all will bow and marvel in His glory, fully well, fully at peace.  The love of our Lord, Jesus Christ will comfort and redeem our suffering beyond what the ones we cherish could ever do for us.  And yet their heartache for sharing this journey with us shall be rewarded too.  The darkness shall fade away forever for all of us one fine day.  Only His light will reign and the darkness shall be no more.  In that day my friend, we will comb the heavens never finding an end to joy for all who believe, for all who hold out for the hope of heaven.  Together we will dwell in the presence of the King of Glory!  Yes, indeed.

Sigh.  That day is not here yet.  What is here is the love of my life holding my comb in the shadow of night.  He lifts me gently into bed and covers me with love that I could never imagine in the past.  He is my Jesus with skin on when I need them both.  I am so blessed.  How could I ask for more?

If I get to see you . . .

 

If I get to see you in the coming year, please understand that I will be singing songs of joy in my heart!  Social isolation has been one of the most devastating effects of serious illness from these past 3 years.  Should the Lord allow the circumstances for me to get out for an activity other than medical or a trip to the grocery store, I CELEBRATE!!!

So if I might ask for a few accommodations when we get together and you graciously oblige and I still get sick then blame any negative symptoms you may witness in me as the consequence of illness and not you!  Very few folks live in a “clean room” like we have here at home.  I did not clean at this level either until it was a matter of survival.  Steve did not engage in my extreme mold/contaminant behavior strategies until two years ago.  These strategies are necessary for this season of our lives together.  Overall I do better when we follow certain guidelines resulting in less reactivity, the worst of which are fewer seizure-like and convulsive episodes which continue daily.  We are implementing some “due diligence” from what we have learned to reduce my suffering with the goal of eliminating this illness altogether.  We believe that the Lord has allowed these trials for mysterious reasons and ultimately His glory.  He is good!

Both Steve and I recognize that there are definite signs that I am getting better.  We have trained our eye to search for even tiny changes in the pattern and intensity of episodes, pain, and reactivity to keep us hopeful that one day I will be well.  It is happening!  So please don’t be discouraged when either one of us might mention that I had a rough night or you witness a significant setback.  Recovery is a long, jagged line of progress, setbacks, and lateral “bunny trails.”  The overall trending is positive!

The most important accommodations that would be helpful if we get together are as follows.

Meeting in a public place:  Select a place with less noise and less loud music.  Newer buildings are generally better than older ones; please no historic buildings or ones with known basements or crawlspaces and history of flooding.  Restaurants that make their own food with fresh ingredients are better able to modify dishes to meet my food sensitivities.  This rules out most fast food places!  Letting me know the name and phone number of the establishment ahead of time will allow me to contact them with my needs and make the experience of ordering food more pleasant for both of us!  Please do not wear cologne or perfume that day.  I will need to greet you and depart with a “virtual hug” to avoid exposures to hidden elements that might be on your clothing or coat.  Forgive me if I sometimes forget this step in the joy of the moment when I see you!

Meeting in your home:  This is still a situation that I avoid since there are too many variables at this time that may cause serious problems.  I cannot come over if you have 1) ever had flooding in your home of any kind from a leaky toilet to a wet basement or 2) have older carpeting.  If you are willing to have me then please remove all fragranced products at least the day before we are scheduled to be together (such as plug-in or spray air fresheners, candles whether lit or not, potpourri, etc.)  Keeping windows cracked open in cooler weather or open in warmer weather to allow fresh air inside always helps (unless someone is burning something nearby outside!)  I prefer to visit in the area of your home without carpeting and sit on non-upholstered furniture.  Wood, plastics, and leather are best.

Staying overnight:  If we are invited to stay overnight then we will either bring our own linens, blankets and towels, or ask that you wash and dry everything in fragrance-free detergent and softeners (including dryer sheets).  Please replace a moldy shower curtain liner with a new one!  I will bring most of my own food and hand soap where possible.  Providing non-cured, non-smoked meat cooked only with salt, plain oatmeal, plain salad-type vegetables or zucchini/cauliflower without seasonings will be a HUGE treat!  I will always bring the extra condiments and food that I can tolerate.

Yeah, I know that this is a lot for a busy household to prepare!  Thank you for helping us out with this stuff.  Steve and I are exceedingly grateful to have recently obtained a travel trailer which has helped manage all of this tremendously well.  (It is a lot of work for us too, I tell ya!)  Both of our families and many close friends now live out of State so travel is necessary to see them.  This single change in our mode of travel has allowed me to leave our home overnight much more safely and go places from which I have been cut off for most of the past three years.  We are humbled and blessed!  I really like having a mobile safe house that has already opened up my world, provided privacy during setbacks on the road, and aided sleep with a really comfortable bed that can be hard to find when away from one’s own humble abode at home.  Thank you Jesus!

Visiting Daniel and Elizabeth in Alabama
Visiting Daniel and Elizabeth in Alabama

 

We are hoping that the ongoing extreme avoidance and dietary strategies are temporary; some level of precaution albeit more relaxed than the current level will likely continue for some time.  How long will we need to do all of this?  We simply do not know.  We believe the Chronic Inflammatory Response Syndrome (or Multiple Chemical Sensitivity) is due to mercury toxicity and we finally have the correct treatment protocols to get me well.  I have excellent medical guidance and a proven treatment plan to follow.  We are hopeful that I will be in better health within this year!  I AM GOING TO GET WELL!!!

And that Gentle Reader, is much to celebrate!  JJ

It is enough

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We had decided to pack four gallons of water just in case something went awry during our second cold weather camping trip this season.  The related online blogs recommended this among other tips such as purchasing a heated hose and waiting to un-winterize the travel trailer until we had traveled enough south to avoid freezing temperatures overnight.  And so we prepared accordingly reviewing our long “To Do” list of stuff over and over again before heading out the door.  Check!

Just before our departure, arctic temperatures plagued the entire country east of the Mississippi River from Michigan to northern Florida!  Who knew that after driving nearly 800 miles due south we would still be facing weather more characteristic of Indiana than our first destination in the deep south of Fort Rucker, Alabama?  We had run the propane heater in the Camp Lite a few times back home to minimize the out-gassing of the relatively new-used mini furnace.  We intended to fire up both heaters (propane and electric) soon after hooking up everything upon arrival so we could sleep comfortably.  Check!  After all it would be about 5:00 in the morning when we got to stop number one.

For God is not the author of confusion but of peace . . .  (1 Cor 14:33)

We did not count on the entire camper freezing over along the way!  I grabbed the hair dryer and extension cord from the cab of the truck and proceeded to thaw out both door locks.  Once inside I discovered that the four “emergency” one-gallon jugs of water were frozen solid as was the entire water system “winterized” with special RV antifreeze!  We had our two sport-sized bottles of water 1/2 filled with us in the car and that was it.  Closer investigation found some frigid water sloshing around in one of the gallon jugs so we gave it to our pup figuring she would not mind the temp.  (Sure would hate to have to choose between man and beast on such a night!)  Steve used a, er, warm water stream to punch a hole in the toilet ice seal to make it operational for the night.  Check!

Hooking up the water and electric did not go well either.  The water spicket had frozen beneath the towel that our southern/Aussie host (formerly from Indiana) had prepared before our arrival.   Hmmmmm.  When the crochety 30 amp electrical hook-up proved to be broken, Steve plugged us into the standard outlet to get us through the night, thus preventing draining our battery overnight.   Oh well, we could live without hot drinks in the microwave:  we had the warmth of each other after all . . .

But our bedding felt like it had just come off the train from Siberia!  Steve bundled up head-to-toe in Smart Wool and collapsed into bed.  I tried to join him but the nighttime unpleasantries I often face reared their ugly head first. Eventually the buzzed feeling I had from the late night excitement, convulsions and checking of Facebook yielded enough fatigue to turn everything off in my head for a few hours.  Even the sound of street noise 50 feet from our pillows drifted into the distance.  We had made it to see my hubby’s darling youngest son and his wife the next day and I was glad.  Check!

Many are the plans in a person’s heart but it is the Lord’s purpose that prevails.  (Proverbs 19:21)

Who knows why our lives are so difficult these days.  The last two times this past year we gratefully were able to camp with the conveniences of a travel trailer in colder weather we certainly prepared as best we could.  It’s not like we did not know what we were doing!  I perused and posted questions on multiple camping forums to learn from more seasoned travelers.  We purchased some special gadgets and kept snow pants, hats and gloves nearby; Steve donned his biking/paddling headlamp upon arrival like a pro to keep his hands free during the late night procedures.  I had enough food prepared in individual and meal-sized portions to keep me compliant with my special diet and the skilled driver nourished for most of our first few days away from home.  We did the best we could to avoid disaster and this is just how it goes sometimes!

The next day was a blur for me.  Yes, we said hello to Daniel and Elizabeth when they stopped by in their Honda Fit (everything is so cute about these two!) midday.  I had not eaten breakfast yet and needed some more recovery/rest time so Steve took off with them while I headed back to the tin can ranch.  What happened next can only be called a near-death experience!  That one deserved its own blog story so I won’t go into it here.

What is clear is that my writing block of late is definitely broken with some new experiences ordained by my Jesus albeit AFGE if you will (aka “another fun growth experience”)!  As in the Wizard of Oz when Dorothy turns to her dog Toto after the great tornado, I’ll say it here, “Toto, we are not in Kansas anymore” and that is good.  My social and geographical isolation enduring illness at home is now broken for a time.  What matters now is faith in the Lord and obedience for His will and I know that His goodness shall prevail.  Yeah God!

. . . keeping the commandments of God is what matters.  Let each one remain in the same calling in which he was called.  (1 Corinthians 7:19b-20)

For I consider that the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us.  And we know that all things work together for good to those who love God to those who are the called according to His purpose.  (Romans 8:18; 28)

Be encouraged Gentle Reader.  The two partial bottles of water were all we needed that night anyways.  It was enough and in our hearts we knew it all along.  JJ

Camper mascot Kermit the Frog here!
Camper mascot Kermit the Frog here!

For this I have seen

The darkest time of night

Brings hope in ways not the norm:

When breathing is restored and the room stands still

My mind clears and my Lord speaks in ways never heard before.

He knows my frame

And delivers me once again

With less pain overall these days

And more wisdom than trauma for all the suffering.

For alas I can go

To such a wretched place

Time and again whilst wondering “why?”

Only to find hidden answers just for me, in the those tender places.

Not all makes sense

And that can be o.k. in the end

When I know the Lord is at the helm

And uses my suffering for His glory, my healing, to bring light, and more.

No, it was not wasted

When I found you who came along

This way with me where the blackest times of night

Served to shine streams of sunshine into days once lived in shades of gray.

Oh to keep mediocrity!

That would be dreadful indeed.

To never see beyond vanilla, boring landscapes

Creeping traffic in the middle lane when the Audubon beckons in a Ferrari 458.

Mach 1 with your hair aflame

Is bound to singe your eyebrows too

But how will you know if you are truly alive my dear

If you have not seen, tasted death along the edges of life truly lived whoot, whoot?

Because when it is over

A job will be waiting for you as me:

To tell our stories to those stuck in the dark

Or on an exit ramp on the wrong road they once thought went nowhere too.

There is always more

Even when our breaths are numbered

When we each see the door to the last destination

And can no longer wonder if we did too much or too little when our past cannot change.

The door to eternity awaits us both dear one:

With adventure of which we cannot conceive;

A place filled with wonder and no more tears

Where our heart will be home, finally, at last.

Will you risk this to be true and come to Him?

Will you lay down your fight, the need to know

To let Jesus Christ be your true reason to live:

The Alpha and Omega, the beginning and end.

Even when in our hearts we must let Him reign

Leading our thoughts and quieting all our fears

Adding His increase when no strength remains.

Finding this kind of peace transcends all we see:

We will find more than the mind can imagine for

We will live at peace I tell you for this I have seen.

:JJ

 

diaperthongGotcha!  ;J

 

Twas a dark and rainy night deep in the heart of Texas . . .

‘Twas a dark and rainy night deep in the heart of Texas.  We had just travelled over 1200 miles the past two days when the 5-pointed star on the black metal gate came into view.  In just a few minutes we would be safely in bed, asleep at last.  Or so we thought anyways!

Rain had sprinkled the roads without incident for the last few hours as our caravan had made its way from Indiana to Texas.  Since when does it rain in the Lone Star State?  Well it’s good for them but not for the weary travelers who must set up camp in the muddy grounds of my in-law’s ranchette.  As it should be, the horses roam free here and reminders of this are soft underfoot as we park near the barn.  Holy crap!

The plastic mat near the door, that I read on an RV forum to be a nifty idea, went from good to bad in a matter of minutes!  It would be another hour before we would realize that we should not wear shoes inside the newly outfitted travel trailer that would be our home for the week.  Remnants of Armani and Buddy would grace our socks and that’s just the way it would be.  Eventually we tucked our shoes underneath the camper to keep them dry.  O.k. That works!

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Our pup Elle adapted quickly to the wide open spaces.  I never really saw where she decided to potty over the course of our visit and that is just fine by me.  Eventually the mounds of racquet-ball sized horse manure would dry on all of us and we would figure out the clearest path from the trailer to the house in the daytime and in the nighttime too.  We simply opted to wipe Elle’s feet every time before she entered our humble abode for the night.  The rest of the time?  I just cannot account for that.  She settled in with the old girl lab, Leah, and darling retriever, Molly, in their respective pecking order and all was well with the world.  Elle would be depressed for days after returning home for having bonded with everything furry out there . . .

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But the tasks at hand upon our arrival to KK Ranch were not done yet as morning drew near.  Attaching our heavy duty power cord tripped the breaker in the barn no matter how my beloved Steve tried to configure it.  At 4 in the morning we just did not feel comfortable waking up Kyle and Katherine for advice.  Lights, refrigeration, and microwave/convection power would have to wait; we had what power we needed from our stored battery power.  Then in a stroke of genius, Steve attached the charger to the shore power via the smaller outdoor cord provided then attached the charger to the battery of the trailer.  Ola!  We had enough AC to run the lights and tickle the frig until we could figure out a better configuration in the daylight.  In the end Steve ran two separate cords from each of the two outlets to the camper:  one for the frig and a second one for the lights and electric heater.  We simply would not use the microwave for this leg of our trip.  No problemmo.

Then our attention turned to connecting water supply.  Most folks not familiar with trailer and RV camping have probably seen the American Lampoon and Robin William’s RV movies that magnify the importance of good sewer lines and running H2O!  If you don’t have access to fresh water, things go bad really fast!  Steve attempted to connect our two hoses to the spicket adjacent to the barn only to find that the short threading of the former prevented attachment.  No problemmo once again.  That’s why we brought extra water in case of an emergency for flushing the toilet, rinsing our hands, and nourishing the dog.  Within a day we were able to get everything together but the spicket leaked badly, flooding the ground around the barn.  Within another couple of days our gracious host purchased some new hoses, pulled everything together with a firm twist of a massive wrench, and all was well with the world.

The day we over-filled the black water tank underneath the trailer came as a surprise.  Only 3 1/2 days had passed and we were nearly maxed out!  By this point we had already dumped the gray water tank onto the ground ’cause hey, this is the country ya know?  A little soapy water from the sink and shower is good for the land anyways.  But dumping raw sewage even softened with an biodegradable enzyme tablet is not exactly the best gift to leave behind after a holiday weekend with relatives!  This created a dilemma for me.  I need to get up multiple times in the middle of the night pre and post-seizure episodes to use the facilities.  Walking 50 yards in the dark to go into the house would surely keep me up more of the night than would be advisable to sacrifice.  Somehow in the end, we made it to the max of our capacity just one day before departure and visiting the free dumping facilities of the Flying J truck stop north of Austin.  It is amazing how much “stuff” that tank can hold!

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And just when we thought the initiation of the newbie travel trailerers would be complete, there was one final challenge and it came in the light of day at the end of our stay.  Ya know, we don’t intend to use the television anyways!  My beloved whacked the T.V. antenna on a lower branch of a tree as we were preparing to leave KK Ranch.  The mushroom shaped projection on the roof got sheared off at its base leaving a black cord dangling mercilessly from beyond our reach.  Oh well.  Our roof is more streamlined now!

Arriving in a foreign land in the middle of the night poses a test of character for even the most seasoned of married couples.  In the end I had to smile at the interpretation each of us had at all of the unfortunate circumstances we faced together.  While Steve was facing the elements in the crud and cool evening air when we arrived, I was setting up camp inside our humble abode and taking care of the pup.  This is how we work as a team and that is nothing new for us.  We both get busy completing the tasks at hand.  The bigger picture was telling a different story however; we shared that one with each another after some sleep.

My beloved was concerned that I might be upset that he requested we drive very long days to get to our destination in just two days instead of the almost three days we spent over the same route last year.  Arriving in the middle of the night came as a consequence of driving 12 or more hours each day and leaving later than expected trying to get everything prepared for each leg of our journey.  On the other hand I was concerned he would be upset with me that we have to bother with all of this travel trailer stuff and expense to meet my health needs.  When the Lord graciously provided the resources to purchase a new-used unit and outfit it according to my sensitivity needs I did not realize that I had overwhelmed Steve with this project.  Making allergy-free cushions, finding the right wheel chocks, assembling enough linens from here and there, and so on was fun to focus on when so much of my time is spent in the throes of illness and recovery.  In the end we worked through all of it and had some fun creating this new memory together.

Somewhere in the middle of this night in a land far away is another starry-eyed couple making a cross country journey.  Somewhere in the course of things they will encounter wacky setbacks and have to go to bed with remnants of those unpleasantries still stuck to their feet between the sheets.  I hope that they too will discover the wonder of it all:  ’tis better to smile and say goodnight than to expect things to be perfect and crash into bed in a different heart-place.  “Trust the process” has been my mantra over many years as a believer in the Lord Jesus Christ and over many trials.  Besides if everything worked out right all of the time, what would we all blog about anyways?

Happy trails campers!  JJ