What do I long for?

That night walking along the dock, arm in arm, before dinner with friends that hot July summer. I had quickly changed my clothes in the truck on our way back from the airport to the restaurant, into something I later deemed too cutesy for a woman nearing her 6th decade of life. It didn’t matter that night . . .

Perhaps it was the same night of the day when we paddled our custom, tandem Huki outrigger canoe on the great Lake Winnebago after the EAA air show: the biggest in the nation. Sometimes you get to feel cool. Riding around with a 24-foot OC-2 on your roof is definitely one of those days, anytime, anywhere . . .

OC-2, outrigger canoe, River Bear Racing, Hawaiin boat, married couple on the water, lake kayaking, lake canoeing, tandem canoe

In the crispness of the salty air waifing all the way to the east side of Tampa, I recall our relaxed stroll through the sales lot of the RV park where we were staying. Lazy Days indeed. We dreamed about upgrading our Tin Can Ranch, a dream that would be realized just a couple of years later for reasons that were more puzzling than exciting. Even so, that night was magical with you. Were we even supposed to be out there? Kind of weird in a way to pick this memory when a walk along the Sunset Beach would have held so much more charm and majesty. Well we did that too another night . . .

I’ve rarely felt smaller yet more in awe as when you showed me around Palisades Reservoir along the most southeastern corner of Idaho that one could go. After we launched, there was no one around for probably miles except for the moose you had seen the day before! Would we see them crashing into the water from the woods this afternoon too? The water was as blue as you could ever find: crisp and clear and oh so refreshing as it sprayed off our carbon paddles moving that OC-2 to parts unknown. Your confidence as a competitive paddler calmed my fear of flipping over in a place where no one would ever see or hear us. Did we have all we needed for a fabulous adventure? I think so . . .

The laughter burst forth easily as we took turns zipping along Lake Wauwasee on the jet ski we rented for your birthday. Daniel and Rebekah took turns as we all did, knowing that your other adult children Christina and Patrick would have had a blast too if they could have been with us as well. But it was our friends Ed and Kinsey that would end up joining us later at The Frog Tavern when we ran into them near the end of our outing. Imagine that! It was such a wonderful day . . .

The thrill was palpable as we zoomed in your Dad’s MG along the coast of Solana Beach and beyond. Dang that engine was loud and the clutch barely held a gear! It wasn’t too much for you my lover of all things that fly through the air whether on land, sea, and now THE SKY! Your kids were still a little weirded-out by our recent wedding then extensive travel together from Indiana to California two months later. Eventually they chilled some. Eventually I came to understand how meaningful that trip really would become in opening up the stories of your life to me as we stayed in your parents’ home. Let’s ride in a convertible along Highway 1 again sometime soon . . .

Waiting on the tarmac of the Kendallville airport that cool evening held much anticipation as you completed the FAA exam for your Private Pilot license. I wanted to be the first to congratulate you on realizing your lifelong dream to fly! The wind sock and other funky towers whose purpose I still don’t understand faded from view as the night sky filled the viewfinder of my camera phone. And then you came in for a landing: just you, pilot-in-command! What a privilege it was and continues to be for me to witness the desires of your heart taking flight. No experiences I have had in my past years compare to the calling to get behind your man when he is being blessed by the Lord. I pray that I get to be in the cockpit with you again soon my love . . .

So this night, when I can hardly travel at all with you nor fly nor paddle nor lie in your arms lest the wretchedness of illness take over, I long for another adventure with you. Is it the enduring the tumultuous trials of our times and the stretching of our souls that must suffice for the awesome view of a mountain lake, a $100 hamburger by way of a bumpy flight in the RV12, or the crisp scent of a beckoning water body virtually anywhere? Do the sometimes demonic trials that test all we know about life and love and faith and time and space earn us a better day when we can live freely in the moment, hand in hand, without a care at all? Lord willing, this side of heaven?

I do long for you my love. I long for all the more that we can wander through together without the pains of this life the Lord has allowed which sidelines them, albeit for His purposes. Will you hang in there with me? Please don’t ever stop asking me to join you in your adventures for one day I may be able to say yes! And do cherish me tenderly as you go. I am hurting from the trials of late. This too shall pass with proper care and perhaps more time than either of us would like. You are my intended beloved not just the one with whom I am somehow stuck by some vows. I do respect you. And I do love you dearly.

What do I long for? I do believe, he is already here . . .

So little. It’s still pretty

Full-time I used to serve others in my healthcare profession and now I can barely get a meal to my husband on a daily basis. My reserves for giving are diminished but not gone, or so he says.

Each night and morning I poured over my caseload, looking for the best ways to make the most of each patient’s time in occupational therapy. Shall I bring Sally a 2-pound weight that I picked up at Walmart or load up adaptive equipment for a better education and training session? Now I’m lucky if a couple of times per year, I can drop off a gift to a friend after one of my medical appointments. Or ride an exercise bike for 5 minutes in the middle of the night.

Sending a card for each birthday and gift for close family has shifted from 1) before his or her special date to 2) days or weeks afterwards. We apologize. It’s the thought that counts, right?

Then I send a PM (or is it DM?) to a friend via social media to ask how she is doing when I really need to pour out my own heart on how wretched I feel, the new symptoms and diagnoses that get added to my pile. Aren’t you tired of my tears Lord?

But enough of my sorry lot. Giving to others in my own strength will never balance the angst of my days. Pitching the good against the opposite is a mental exercise at best that risks the tasks being done for the wrong reasons; they barely even measure on the MET scale of physical activity anyways. What’s the point? My weak bones need resistive exercise as do my muscles that are softening by the day. Both my mind and my frame need REAL exercise. The kind that stretches me, tears down and re-builds muscle fibers for measurable strength. The kind that transcends a weary heart. But how is this possible? Gee. Looks like I need a refresher here on how this really works.

If I can only do a little then that little bit needs to be pretty enough. If I am to do anything significant then my strength must come from a source outside myself. I don’t have it. The Lord does! If He leads me through the Holy Spirit to these acts of grace then I trust that He will provide whatever is necessary to finish the task. This is true even if it stretches me beyond what I think I can do. His power is infinite! And if I can keep my eyes on my Jesus no matter the horror of my suffering then I know I will be stronger somewhere down the road than I ever could have imagined. Seeing our Lord’s power in our lives is how we grow our faith. Moving towards Him as He leads makes it so, makes us resilient as we go. And the more we follow His lead in His power, like a weak muscle trained over time, we will shine for His glory not ours. It’s really better that way anyways.

Doncha think, Gentle Reader? JJ

Coming out of shock

Quite disturbing is the realization that the consequence of serious illness

Adds damage from its own dynamics, worsening symptoms to a hellish level.

Hours of convulsive episodes reveal failed treatments intended to cure

Instead I have whiplash and the trial of convincing my Doc to test me some more.

Fortunately for me, he was willing to throw the book at me, inside and out

Not so good for my hubby who held me as I hung from his arms for my chiropractic care.

Gotta hand it to my Doc for making it all work when I could not stand

Both of them enduring the gutteral eruptions of screams when my brain is afire, nonetheless.

We all got through it, me with zero sleep from the night before

Grateful for the comfort from a local burger joint to restore our famished bodies, minds.

Oh to have respite from this waking nightmare whose root-cause is still mysterious

It’s the kind of Groundhog Day that repeats until you finally get it or maybe not.

Someday maybe . . . Lord willing. JJ

Nightly mayhem

If it weren’t bad enough that the beast meets me as I am falling asleep each night and before most naps, add to it the treatment rituals that make my bedtime routine laborious to say the least.

Here’s my brain dump to maintain my sanity, my health . . . Such as it is, that is!

  1. Turn on the electric bed warmer pad ahead of time to warm the sheets then turn it off when going to bed. Warm sheets decrease the shock of otherwise cold sheets that have triggered episodes in the past.
  2. Adjust the thermostat if the weather is cooler so we don’t overheat when sleeping.
  3. Remove the comforter and 2 decorative pillows from the bed and place in guest bedroom.
  4. Position a pillow where my knees would go and another where my back would go and another to hug in front of me. This allows positioning for what therapists call “back precautions.” Knees slightly bent with “neutral spine” alleviates pressure on my low back.
  5. Foam pillow top over the mattress cushions the bony prominences and joints. So comfy!
  6. My Pillow-brand pillow contours to the head-and-neck nicely for switching from side to back overnight without pushing my head too far forward off of the mattress.
  7. Wear a long-sleeved shirt over my bed clothes to keep my neck and shoulders warm overnight.
  8. Take nighttime supplements and hormonal creams but not too close to bedtime for the former.
  9. Moisturize with various products for various body parts!
  10. Now apply an eye cover to create darkness for better sleep.
  11. NEW: pack of ice wrapped in a hand towel placed mid-sternum. Calms vagus nerve to actually decrease convulsive episodes!
  12. Temporary addition: cardiac event monitor control pack tucked into a pocket for 7 days. In the event of an episode or worrisome symptom, get up and go into the bathroom to record the incident. (The unit has no night light!) This is one of SIX tests in a workup going on right now before seeing a cardiologist who specializes in electrophysiology. This all came about when I noticed some heart rate variances during episodes. More clues towards a potential cure? We shall see.
  13. Apply nighttime specialized dental appliances for optimum TMJ positioning. Reduces jaw pain.
  14. Get up in the middle of the night (or morning) to complete sinus rinse procedure if I wake up with annoying sinus drainage. Go to the front bathroom if Steve is still sleeping. Attempt to go back to sleep or do a passive activity until I am tired again. Eat, take care of the dog if needed.

Do you see a typical nightly skin care routine in there? Nope. I guess I am a “high maintenance” woman of another type. Exactly what type is that? A very odd one perhaps! Such is life. Better go start the routine . . . It’s nearing 5:00 a.m. and my bedtime is approaching. Yes, things are nearly reversed again in an attempt to wait until I am exhausted before trying to sleep. Seems to help, except when I have an appointment the next day. Then I spend the next 24 hours trying to catch up. Ugh. Sigh.

Our pup is so very confused by this routine! Good thing she has furry eyelids to keep out the light. Maybe I need them for my nightly mayhem too? JJ

He knew

Still in shock from the news, with tears coming forth without notice

I grieve the sudden death of my brother and all that it means.

Where do I begin to tell the story of his life and mine intertwined?

I just can’t write very well right now.

One dynamic is clear though.

Just before he died, he had come to know and convey despite horrific suffering

That life in Christ is worthy of our primary focus. It supernaturally transcends the incredible chaos of our time whether it be in our own broken frame or the society at large.

I don’t think he lived this belief out perfectly in all areas of his world. But in conversation with me, his witness was clear: LIFE as in LIFE IN CHRIST is the most important matter of our days.

With this I find it curious that his final words to his companion and caregiver of many years were, “I don’t want to die.” But Mike, to live is Christ, to die is gain (Phil 1:21), ultimately to be with the Lord and perfectly whole. Why did you not give in to death when in a coma, when seizing, when facing searing pain and be truly free? No one would know and no one would blame you for letting go. You didn’t even do so until the Lord called you home. I am seeing in you this gift of perspective that I have not been able to realize in my own time of battling serious illness. You got it right! I need to get it right too.

Thousands of waking seizure attacks have ravaged my body over the past 8 years. The health complications that came along the way have brought much grief, guttural cries out to the Lord for relief. Experiencing my brain on fire when I am still awake has brought traumatization, triggered memories of past incidents of trauma, stirred emotions that took me down, down, down. If there was lingering bitterness from the abuse of my past then it had no where to go to heal when every month it seemed, there was a new medical problem/diagnosis/treatment to consume my days. Sure, I tried to live around the compendium of illness; weather sick or faking wellness, I see now that my focus has been in the wrong place too much of the time. I need more of Jesus Christ and less of everything else NO MATTER WHAT IS GOING ON AROUND OR WITHIN ME.

I have struggled to read my Bible and pursue even passive activities that can strengthen my relationship with my Savior. It’s been really, really hard to do so. Somehow my brother Mike figured it out despite his suffering. He could only use one hand! His body erupted into violent spasms without warning. The simplest of self care tasks were laborious beyond belief. He has been bedridden for most of the past few years. And the pain. I don’t know if anyone really knows how much he endured, how much medication or cigarettes it took to numb the torture of severe contractures from a stroke about 5 years ago then subsequent medical mismanagement (or minimal management). So did he talk about all of this with me? NO! He chose share what he was studying in his Bible instead. He asked me important questions that I was barely able to answer. Mike meditated on the significant issues of life itself. He saw beyond the life his broken frame, not wanting it to end despite his suffering. Mike dwelt for hours each day in the presence of our Lord and blessed me in return by his doing so.

Mike really did not want to die. I get the sense that it was because he wanted to be here when the Lord returned in glory for His church. Mike thought he would be here for the rapture. Sometimes I think that I will be here for the rapture too, and that it might not be far away with the absolute chaos going on in our country. Despite my own faith in Jesus Christ, many times I have wanted to die. I have been overcome with despair, enough so that I could not imagine living another day with my own suffering (described here many times, portrayed on my YouTube channel). My faith has wavered at times when challenged by the worst ravages of chronic illness. I am not proud of it. This is important to share however, as I know that I am not alone. Tis better to bring these issues to the light of day in the right way at the right time. Now is that time. My brother’s witness to me that I finally got to see in his passing from this life is a proverbial fork in the road for where I want my life to go from here. I got this perspective from you Mike. Thank you. You have finished well, the task of ministering to your older sister whether you knew or not that you were doing so.

Thank you my dear brother in Christ. On Friday you told me that you knew that one day you would be healed. That prayer was answered just one day later! I rejoice that you are now leaping like a deer on high places as you dwell with our majestic Savior in the heavenly realms. See you one day when the Lord calls me home too. Until then,

Heyyyyy Mikey! I love you. JJ