The Aerial View

Fort Wayne, Indiana aerial photo by Steven Horney

Moving from a city of 8 million people to this big-little area of 300,000 where I live now was a huge undertaking in 2007. The occasion was marrying my Intended Beloved, Steve. The leap of faith required to do so was tremendous: almost everything in my life changed that year including those related to the death of my Mom in March. The process of grieving then leaping off into a new direction was downright painful at times. And now 15 years later can I still say that embracing Steve during the same year was one of the better decisions of my life. The Lord has blessed me so much by my beloved Stevers!

You could say that my story is like taking an aerial photo in a Piper Archer. The reality for me is that down on the ground, the highs and the lows are one dastardly beast to navigate at times. I lose a couple of days per week to a sickness that started in 2011, then rally, or rather scramble, to put my life in order on the rest of them. The stuff of life still needs to be done even when battling a serious illness. Steve does what he can to help me out, especially when I am in a crisis, but he can’t do everything. Nor would I want him to do so. A little more maybe, but not everything! We have learned the value of compartmentalization: setting aside the challenges of a given day when we need to focus on a more important task together. For example, when my care needs are significant, we cannot bemoan our latest disconnect or household repair even if it’s a painful or expensive one. Steve is the only one who can bring me a rescue remedy when I am frozen in a convulsive episode. He is gracious towards me at these times and for this I am exceedingly grateful.

Taking an aerial view of one’s life is helpful at times. Climb to 4,000 feet and sit away from the clouds, the storms of life while connected to the grandeur of the world in which we live. Dwell on the Lord’s goodness and His marvelous creation! Eventually we will land our plane back on earth but why rush things? The question becomes how to avoid crashing and burning or perhaps going crazy when the flight gets bumpy along the way. No worries! Whether climbing or descending into the various situations of our lives we must resist being bounced off-course by heated or cooled thermalic conversations, the cross-winds of life’s technical problems, static in our headset or bodily gear, and limited fuel energies. Not losing sight of the bigger picture is critical to managing these challenges. Not losing sight that the Lord our God is in charge of it all is critical to overcoming these challenges. He has a flight plan and will reveal it to us in due time for He IS the pilot in command!

It’s only with a longer view fixed on Jesus Christ that we will come to understand that what we may label as a detour is actually the best course after all. I need this reminder this evening. There was a nasty fire in the cockpit so-to-speak of our evening that was so bad, my co-pilot in life had to care for me like I was an invalid. I wept in between bites of food that were difficult to chew even cut in small pieces and fed to me with a spoon. I was that weak after yet another violent convulsive episode. The repairs and mold remediation going on in our home for the second time in 9 years somehow triggered the collapse. On one hand I grieved that this hell on earth was still with me, still with us. On the other hand, I was grateful that I had a choice of rescue remedies/treatment strategies plus a skilled caregiver who knew what to do to help me. These took many years, many “flight hours” to develop. Steve is an experienced and capable pilot. The episode lasted a couple of hours before I had the strength to safely get out of bed. By the grace of God I finally got to the bathroom. By my Lord’s power the nightmare ended.

I am now awake and alone well after midnight as I write this tonight with many questions and few answers. Evidently it is still not my time to recover from this serious illness nor to die from it either. I do have some more, new treatments that are promising; they are enough to pull me through the turbulence at times in my own aerial view. There is so much goodness beyond my bed of sickness that I do get to enjoy these days at least once per week. And ultimately I have the hope, the peace that comes from His promise of a glorious life beyond this one in eternity with my Lord and Savior, Jesus Christ. In fact, it has already begun . . .

Would you like to have this hope too Gentle Reader? Jesus Christ is more than the best pilot around. He is God! Entrust yourself to no other really. JJ

The full moon must goeth

If ever cycling was a thing in chronic illness then the one that goes with the emergence of a full moon is my worst. What a night from hell it was yesterday.

The new spritely Doberman mix youngster whacked me on the forehead when she jumped up suddenly. It felt like a head injury. Stars and stunned. Soon came the gutteral cries, gasps for air, and profuse drooling as I braced myself against the kitchen sink. I could think of nothing else but to hold on, try to breathe. Steve heard me and asked if I had a leg cramp. I could not speak for a very long time. I was seizing. It was terrifying.

About an hour later after much weeping, rebounding, being carried to the sectional, and 60 mg of Prednisone, my mind began to clear. No really it took 2 hours. I needed water and food and to go to the bathroom and serious help from Steve who sat nearby, trying to figure out what the hell was going on, what to do or not do. It was awful for him as well. We simply endured.

I am crying as I write this. I have spent this past day moving gently and taking a long time to do basic tasks. Very deliberately, very carefully, and certainly with much caution where Bella pup was involved. Did she know? Later last night she did lie beside me on the floor. Our other dogs never did that for more than a moment. Isabella has only been in our lives for 7 days. She’s a different kind of beast for sure. I wish I could say the same for myself. At this moment I feel like I am slipping away from my former sameness . . .

In the midst of the rebounding into more episodes when simply trying to adjust a blanket, I asked the Lord to take me home. Please take me home. I gave him my gardening, our marriage, this home. It just hurts so badly to be awake when hell breaks loose in your body and you have to watch it, helplessly. He said no. It’s not time yet. My mind went blank for all of the implications of living on until the next violent convulsive episode rips through my world. It’s complicated. It’s just so very hard.

So if the answer is no, not yet, keep going, that’s just what I will do. That’s just what I did today. He gave me the strength to take care of the dog, the laundry, some bills, cooking, computer stuff, and finding my way back to you Gentle Reader. How are you tonight? Today?

Perhaps some joy or even happiness will return to me at some point. Just for today all I can say is that I am blessed to be struggling with this mess in a situation where all of my basic needs are met well. In this place I will start the next cycle of the moon. And keep experimenting with ozone water. It did help me sleep better quite a few days and improve enough to get some tasks done that have been harder in the past to do.

Just keep going. Sometimes it’s enough. Isn’t she adorable? JJ

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