We interrupt this chronic crisis to bring you: A Birthday

 

Today we celebrate 61 years of Scott. And in honor of that I, Jennifer, who have been silent for a bit over two months, am sneaking back onto this forum while he runs an errand to invite you to celebrate with me. Because this birthday finds him (us) in an unexpected place with an unclear plan, or at least more realistically aware that every birthday finds us in places that are complicated combinations of our choices and life, and we never can plan on the next one! So today please join me in a bit of joy. 

Today's birthday has been joyful, largely due to the presence of our second-born who by God's mercy was able to walk through every step of the first two weeks of this near-death blip with us, and also to come back over this Veteran's Day long weekend. He's been a stalwart and a gem. It's also a glorious Fall day in West Virginia, for a father-son bike ride and polar-plunge river dip, for sunny rocking on the front porch with guitar-accompanied singing truth, for making food and talking. But mostly, today is joyful because it provides a frame in which to gather thankfulness for Scott. It's not the first time he's been instrumental in saving my life but definitely the time that death has come closest. I am thankful for his presence, recognition of the situation, pushing for the helicopter extraction and then sticking by me in the complicated journey of care. He's been constant through those four days on the ventilator, five in the ICU, ten in the main hospital and another week in the rehab.  Then another seven weeks of plugging along at our farm taking me to umpteen appointments, managing both of our jobs at distance alone, shopping, cooking, and on an on. I am trying to be aware of just how drastically my fall has knocked into dozens of other people's lives and plans, but no one's as hard as Scott's. So On this birthday, I am thankful for the companion God has given me (41 years of friendship, 34 years of marriage), and specifically for his capacity to pivot on this unplanned sojourn as we wait to see what it means for our lives.

Our mantra of late has been the paradox of gratefulness and grief. I'm grateful to be alive and in recovery, yet also grieving for the loss of so much of life for now. In the same way on this birthday I'm grateful for Scott's wisdom, energy, faith, commitment, kindness, care for me, capacity to stay involved in our own struggle and those of our team and Area and friends . . . but also grieving that he has to be away from a life that we spent 28 years investing in, the human beings that fill his heart, the hands-on work that brings him satisfaction. Two birthdays ago we got Bwindi in Kampala; last year we went to a Safari Lodge for a lovely treat of a time together. This year we've been boosted for COVID at Walgreens and watched the Veteran's day parade, and are treasuring the weekend with our son and chatting with the rest of the family. We are  marveling that we can be here, even making his mom's traditional carrot cake (without Ruth 61 years ago none of this story would be possible!).

After today, back to PT and zoom calls and the slog of survival, back to hoping and praying and waiting. I'm aware that my brain is not to be fully trusted (going to have this read by someone before posting) and everything takes more energy than it should. But for today, I'm glad that I'm not in this crazy situation alone, that God gave Scott 61 years and counting, and hoping it is many more. He's done a great job of recruiting prayer for me, which is definitely my lifeline. Today pray for him, to also meet God in the mess, to be filled with faith, hope, and love as we recited in our wedding vows from 1 Cor 13, to accept the new normals with grace and find good in his next year of life. And to have a HAPPY BIRTHDAY!

Post Ophthalmology Visit Follow-up Report

Jennifer was evaluated by a Neuro-Ophthalmologist at WVU today, an eye doctor who has done sub-specialty training in the nerves of the eye. 

The doctor who evaluated her today was a little older than us (read: old) and said that he has seen "many" Cranial Nerve III injuries, but only two related to bicycle accidents. In general, he said that a traumatic CNIII injury involves "massive forces".  Most of his patients with a traumatic CNIII injury have been involved in motor vehicle accidents or similar high velocity events (he did mention one related to a baseball bat to the head). 

Overall, he expressed extreme gratitude for Jennifer's recovery and, I think, it's safe to say that most of his patients have not experienced the degree of recovery which she has at the 2 month mark. That said, he said it is now a waiting game. Like we have heard soooo many times now, the recovery time line is about 6 months. Where she lands functionally at the six month mark is probably where she will be permanently - though there may be slight incremental improvement up to the one year mark.

Jennifer is not wearing a patch much at all now. And the doctor encouraged her to continue leave the patch off - and use it only when she is experiencing eye fatigue which is causing more double vision. She has little double vision looking straight ahead at distance. It's only with downward and upward vision that she is experiencing some double vision. He said that at this point we can pretty much rule out any need for corrective (strabismus-like) surgery (Hallelujah!).  There is some slight possible that she could benefit from "prism glasses" (little wedges of glass in the eyeglasses that bend the light and bring two images into one)--but that would not be decided until the six month mark.

Her right pupil continues to be dilated more than the left and her lens doesn't "accommodate" as well on the right which makes reading slightly more difficult with that eye.  But at distance (with her glasses) she has 20/20 in her right (bad) eye--but than her left eye which is 20/25.

So...she has a follow-up appointment in 2 months (late January to assess her progress).  Until then we continue with her "Brain (MIND) diet" (read: Mediterranean diet), her independent physical therapy, lots of rest/sleep, general exercise--and prayer.

Thanks to all for prayers and all the generally encouraging messages she continues to receive.

Seeing

 

More progress this week...

- The biggest answer to prayer is that after nearly six weeks, Jennifer's diarrhea has finally resolved.  Sorry to lead off the prayer update with diarrhea, but that's the reality of the struggle.  Very thankful.

- On Friday, Jennifer had her Final Exam so-to-speak at the Physical Therapy unit in Bridgeport.  Her demonstrable improvement on so many different levels (improved gait, strength, balance, flexibility) qualified her for discharge from the formal PT program.  So, that means no more driving an hour to Bridgeport twice a week.  Yay.  She will continue to work hard here at home with her own independent program in order to multiply the gains she's made, but we won't have to travel or pay for more therapy.  A shout out to United Rehab Physical Therapy staff--they were great.  Expert professionals who could see things we couldn't see and then guide her with a regimen towards recovery.

- I mentioned an Eye appointment scheduled for this week...that was rescheduled to Nov 8.  On the eye, Jennifer said to me this week..."look at my pupil, I think it is getting smaller."  Indeed, it's true. And she's having less and less double vision with far vision--though with the slightest downward gaze, the double vision is apparent.  Jennifer also finished reading Perelandra (after reading Out of the Silent Planet) this week.  Some of this reading is done patched, some done unpatched.  But I cannot emphasize enough, how thankful we are that she is able to read. We don't take this lightly. This was not a given eight weeks ago. And we were talking about it yesterday--how reading is central to soooo much of life. So, again, pausing to give thanks.

- She is walking in the woods more and more. Walked about 3.5 miles yesterday. She has an app on her phone which helps her identify trees. It reminds me of the way the Physical Therapists watch Jennifer walk and then comment about which joint is weak or inflexible.  They "see" things of which we are unaware.  And now, as we walk in the woods, we are seeing with new eyes. We look up into a big meadow above our house every morning when we wake up and throughout the day. As we walked by one of the biggest trees this week at the top of the meadow, we noticed that it's a Shagbark Hickory (of course, we live on Hickory Flat Road). It's always been there, but we never "saw" it before. 

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Our Team in Bundibugyo continues to fragment for this season. The Forrests are en route to San Diego for a 5 month Home Assignment as they transition from being 2-year Short Termers to 5-year Long-termers.  Thankful they decided to commit to a longer term of service.  They will reconnect with supporters to share their vision for continuing service in Bundibugyo. Can't wait for their return!

The McClures are halfway through their 4-month Home Assignment and will return to Uganda in January just as Christ School re-opens.  We are working together with the school's Leadership Team to plan a budget for next year, plan for recruitment and selection of new students for the S1 and S5 classes, and participate in a national re-registration process undergoing for all private schools (I suspect they are trying to assess how many private schools have survived the long Covid shutdown).  Please keep praying for Christ School, too.

mid-week bonus

On 9/11, five days after Jennifer's accident, one of the former teachers of our kids in Bundibugyo (Michelle Lee) sent me a link to a song which she and her kids learned at a YoungLives camp last summer.  I wept while listening to this song over and over and over...

Take a couple of minutes and listen to this beautiful song HERE...

Jennifer has been playing this on the piano this week --which is a spine-tingling experience.

Who needs a walker?

We continue to thank God for Jennifer's progress.

This week:

1.  We moved back up to our bedroom upstairs.  Jennifer is navigating the stairs confidently-but does hold on to the railing going each way.

2. We moved out the upright piano we inherited from Jennifer's mother (dozens of keys had stopped working) and brought in a digital piano (with weighted, hammer-style key feel).  So, Jennifer is playing the piano again.  

3. Her diarrhea is slowly improving.  Not yet gone, but less than last week.

4. She is doing some reading without her eye patch.  With a lot of effort, she can bring the double vision into single focus. She spends a few hours a day without the patch, trying to get more minutes of conjugate (non-double) vision.  We head back to WVU Eye Center on Friday for her second (monthly) ophthalmology follow-up appointment.  Don't expect much in terms of treatment, just getting some more data on her curve of recovery.

5. She's routinely walking a couple of miles a day, sometimes on the gravel road and sometimes up through our woods.  Yesterday, I took all of the disability equipment (a wheelchair, a walker, and a tub bench) to GoodWill for donation --hopefully, someone else will find those things useful which we no longer need.

Just a shout out to the Africa Area Regional Supervisor and Team Leaders who have picked up every ball which we dropped in September.  Life marches on without us and it's fantastic to see people step into the gap without needing to be asked. I am slowly beginning to reconnect with our Africa-based Serge leaders, but every conversation I have with them reveals what capable leaders we have.

She’s a force of nature

 Yes, of course, we all know that Jennifer is a force of nature, but today I speak of Julia Myhre.

Julia flew out from Salt Lake City where she is studying for an MBA at the University of Utah to spend her week-long October break with us.  It’s the first time we have ever had the privilege of spending such an extended period with her alone.  What a delight.

The Aylestock family treasures a long tradition of making apple butter in the fall—a sweet thickened sort of apple sauce cooked down from raw apples in a massive copper kettle over the course of an entire day.  Having been grafted into this Aylestock tradition over 40 years ago (long before our marriage), my experience would say that this requires the labors of at least two or three whole families who contribute to the huge task of peeling, coring, slicing and dicing bushels (usually five bushels—like 150 pounds) of several varieties of apples to garner the final 11.5 gallons of apple butter which are jarred and divided up amongst the families.  

Julia fears no task and gathered a group of friends to make apple butter last year.   Undaunted by the prospect of her final result being compared to that of the memory of years gone by, she moved ahead strengthened by Voltaire’s maxim: Perfection is the enemy of good.  Her 2020 batch was declared a success by the matriarch of the clan and has been enjoyed throughout 2021.

When Julia finally locked in on visiting this week, we began to strategize for making apple butter, but colliding calendars prohibited any possible collaboration of families.  Again undaunted, Julia assured me that “Yes, we can!”  She managed to persuade her former housemate from the Greensboro Fellows Program, Bethany, to join up for the project.  And so she began to plan—a new apple peeler arrived in the mail.  We downsized our project and bought two bushels (Golden Delicous and Winesap) from Crazy Harry in Elkins.  Julia and Jennifer peeled and processed all the apples last Sunday.  Monday became Apple Butter Day.

Roughly five hours were spent stirring the apples in the copper kettle over the crackling fire with the seven foot long wooden paddle.  The final process of measuring the thick brown paste into boiled mason jars—Jennifer and I completely missed it because of a Neurosurgery follow-up appointment in Morgantown.  That appointment was as close to perfunctory as we could have hoped.  Jennifer did get to glimpse some images of her brain scans which she had not previously seen, but mostly the young neurosurgeon wanted to talk about her six week neurosurgical rotation at Mbarara University in Uganda.  We left with lots of reassurance that Jennifer is on an excellent trajectory in recovery—but also a reminder that her recovery may take up to a year.

We returned to find 36 jars of apple butter (the final tally totaled 4.5 gallons).  And Julia and Bethany added their own touch with a hints of ginger and nutmeg added to their batch—time will tell how the clan will judge that.

But beyond apple butter, every time I turned around Julia was baking sourdough, scones, or cookies.  She washed, she cleaned, she scrubbed.  She did a beautiful puzzle with Jennifer and Bethany (check out https://www.libertypuzzles.com/about —thanks to Bill & Sheila Marty!). And lots of walking and talking…

Jennifer continues to make progress.  The walker has been relegated to the garage.  She still holds on to a hand or arm of someone when outside walking but inside she moves around completely independently. She has grown more steady and more confident.  She attends Physical Therapy twice a week in Bridgeport.  Her therapists there are wonderful.  They astutely observe her weaknesses and then hone in with lots of creative exercises to strengthen and stabilize her.  They had her hopping over the rungs of a rope ladder laid on the ground this week.  She pedaled a mile on the stationery bike in 8 minutes. She bends, balances, lifts, steps…

With regard to her eye, she is now spending a couple of hours twice a day unpatched.  While before, she could hold her conjugate gaze for a few seconds, now it is for several minutes.  So there are longer and longer periods for which she has “single vision.”  She managed to read a few pages with binocular vision this week.  That is major progress.  

One final prayer request.  Jennifer has had persistent diarrhea since her discharge from rehab.  That’ s nearly three weeks.  She’s had a complete battery of stool tests which have all been negative.  It seems to be resolving — but very slowly.  She still has loose stools at least once or twice a day (down from 5-6x).  It’s draining.  We are hoping that this completely resolves this week.  The next step would be a gastroenterologist— which we’re hoping to avoid.

More progress

 To my surprise, I see that it has been 5 days since I last posted any progress report.  It’s hard because the day-to-day progress is so subtle. At the end of the day, I think to myself, “Nothing much to report today.” Just that same old rhythm of Jennifer doing her little self-guided physical therapy on the floor with her yoga mat and her iPhone with the little videos she’s been instructed to imitate. Not surprisingly, she’s super serious about it.  Anything to get better. And while she’s never been a napped, now she regularly lays down in the mid-afternoon, partly because she’s exhausted by the slightest routine and partly because she has been convinced that it is part of the healing process.

So, it’s Saturday, and now it seems so normal that she moves freely without her walker.  When we go out of the house for a walk in the woods or on the gravel road, I hold her hand, but the walker is feeling quite neglected.  

The most exciting thing, however, is the incremental improvement in her right eye function.  In the morning (when her body and brain is most rested), she can intensely concentrate and focus on a distant object and consciously bring the two images of her double vision together into one image.  And as I watch her do this, her two eyes appear to be in normal conjugate gaze (aligned with one another).  When she first realized she could consciously do this, she could only accomplish it for a couple of seconds.  She would concentrate intensely (like Milly Bobby Brown does on Stranger Things when she wants to throw a car across the street) — and then almost collapse because of the effort. Now she can hold the images together for longer periods and is practicing doing this throughout the day.  She must always return to the eye patch (her pirate look) because the double vision is otherwise constant.  Her eyelid is less droopy and the pupil might be slightly less dilated than at the beginning—though this seems less dramatic to me.

The implications of this are HUGE!  If she continues on this trajectory, she has a real hope of leaving the double vision behind and avoiding corrective eye surgery—both for aligning the eyes and propping up the lid.  Here is a picture of her this morning (she is not going to be super happy about me posting this)—but it seems only fair to give this feedback to all of you who have prayed for her healing and will be so encouraged to see the evidence of it happening.

We continue to listen to Kate Bowler’s book No Cure for Being Human.  In our chapter today, she struggles with the possibility that her cancer might be in remission as a result of the immunotherapy.  But it is a strange place. She has been living in a fearful and hyper-vigilant state, wondering if she might die this year. It’s felt like that for us as well. In those early days, I wondered what would Jennifer be able to do in the coming months and years—walk, bathe, type, read, bike, swim?  All things that we took for granted in our “before the accident” life.  But now with these improvements, can we dare hope for a full recovery? For a normal life? Kate Bowler asks her psychotherapist, “Is there a reasonable time for me to stop being afraid?”  I don’t think we are there yet.

Kate Bowler’s academic niche in the Duke Divinity School is the Prosperity Gospel.  She doesn’t believe in it—she studies it.  It’s primarily an American phenomenon and she comes at if from a Canadian perspective.  Jennifer remarked today, that Bowler is a really a modern day Job.  She got colon cancer at age 35 and like Job’s friends, many want to assign some explanation of why she got this cancer — and like the prosperity gospel enthusiasts—how she can be rid of it and make the best of it.  At least she can go out ticking off a profligate Bucket List (of this she says… “The problem with aspirational lists, of course, is that they often skip the point entirely.  Instead of helping us grapple with our finitude, they have approximated infinity”). 

She struggles (and I think we all do) in light of the painful reality of not knowing the future and our outcome—and what that means for how we should then live? How do we live under the burden of not seeing our future? We wait. We walk. We pray. 

A long hike

Jennifer and I are listening to Kate Bowler read her newly released book (on Audible), No Cure for Being Human.  It’s her story of being diagnosed with Stage 4 colon cancer (metastatic — spread to her liver, etc) at age 35.  She’s a poetic, poignant writer — with a sense of humor (and we love her because she teaches in the Divinity School at Duke). We’re only 3 chapters in, but the pain of her diagnosis, the acute detail of the indignities, and the real and potential losses counted— all reverberate with familiarity around this little farmhouse in West Virginia. 

In Chapter 3 she talks about her time with a psychologist…

he tells me that he learned a secret from hikers of the Appalachian Trail. People who dare to attempt the whole trail face down more than six months of lugging their belongings over more than two thousand miles of daunting terrain. Because eager beginners start their trek carrying heavy packs brimming with tarps and tents, cooking utensils and flasks and granola bars, that first stop on this long journey is the most important one. The hiker is already starting to flag, but they have only just begun. They have reached a moment of decision, the moment to ask, “What can I set down?” The extra cooking pot. The fleece hoodie. “This will be a hard journey,” he says. “Is there anything you can set down?”

This challenge whirls around us.  What things do we need to set down?  How long will this journey of healing take?  Two thousand miles?  It feels like that today.  Jennifer and I had an animated discussion this evening (some fly on the wall might have called it an argument). What should we say to those who we supervise?  Do we set out some hypothetical timeline, imperfect though it may be? Or do we just ask for grace, live one day at a time and admit that we have no idea? The fact of the matter is the human penchant for control leads us to self-deception. We don’t order our steps.  But that realization may not come to light until our plans are turned upside down and emptied out on the pavement in tiny little pieces.  So tempting to try to put those little pieces back together.  

Kate Bowler again…

“It’s easy to imagine letting go when we forget that choices are luxuries, allowing us to maintain our illusion of control. But until those choices are plucked from our hands—someone dies, someone leaves, something breaks—we are only playing at surrender…

Ah, Surrender.  Set it down.  Still thinking—the pot or the hoodie…