Success!

Big shot
Originally uploaded by jacquichris.

I am happy to report that Mom and I have successfully survived our first shot. The volume was large but the technique was worse, as challenging things go.

By the way, the story about the shots is that Mom is now receiving low moecular weight heparin shots so that the coumadin can be discontinued. But why start the shots if the coumadin was working?

Well, Mom needs to remain on medications to prevent thrombotic events until 5/16 (the 3 month anniversary of the DVT diagnosis). Coumadin works excellently to prevent blood clots from forming. It is cheap ($4), inexpensive (even including all the blood tests that run about $90 a visit), a pill, and very effective. It is not, however, rapidly reversible and is non-specific.

Mom needs to have surgery on her ear. This involves cutting things, which involves bleeding. As you can imagine, being on a non-specific blood thinner is considered suboptimal when one is about to have surgery.

Low molecular weight heparin, on the other hand, is quite specific and rapidly reversible. As such, it can be discontinued 12 hours prior to surgery and uptoward effects can be avoided. Blood testing is for the most part unnecessary and the risk of catastrophic bleeding is very low.

Now you wonder why coumadin, and not heparin, is most commonly used.

Well, low molecular weight heparin cannot be taken orally and remain effective. In addition, it is incredibly expensive (about $100 a day).

So Mom had to choose to between having the surgery after 5/16 or taking the shots for a week prior to and a week after the surgery. For a huge variety of reasons, Mom picked the shots. So a'shooting we will go...

Syringe dose

Syringe dose
Originally uploaded by jacquichris.

Just in case you were wondering what I meant by large volume, the plunger extends to my first joint.

Not that 0.6mL is a huge volume. Keeping in mind that there are 15 mL in a tablespoon, basically 5 in a teaspoon, it is a small volume. When you throw into the mix the spring-loaded action resisting the plunger, it is quite a distance to bridge.

The process is a bit like caulking a delicate window pane while simultaneously loading the caulk gun. The key is to inject without apology and then pull out without allowing any pressure release on the plunger, lest you suck bits of the patient up into the needle. Then, still keeping your eye on the needle, you straighten away from the belly of the Mom in front of you and apply further plunger pressure to engage the firing mechanism that shoots a protective casing down around the needle with disconcerting force. This part is vaguely reminiscent of skeet shooting- 'Pull!

You get the picture.

Bare naked lady

Having just returned with Mom from her first attendance at a rehearsal since the accident, it seems timely to provide another update.

The weekend was somewhat lazy. Mom and Roland enjoyed puttering around while I got out for an evening to see local bands. We rounded up together for a viewing of Ice Age, luxuriating in the beautiful imagery, the poignant expressions on the animals' faces, and the sweetness of the storyline.

Monday morning we started late, an eleven o'clock appointment with the orthopedist. We arrived on time in the new location in spite of several misadventures in navigation! Jeanene met us for the appointment, brave trooper that she is. The first hour and a half of waiting weren't bad. It was the transition into the second hour that was the killer. Happily, it was about this time that I discovered that we had access to WIFI in the lobby and sent off an email to Kel with an update on the situation. Zip zap, Kelly responded with her usual pluck and good humor and next thing you know we were enjoying a picnic in the lobby.

[Which brings up a number of relevant points about why we love Kelly so and why I depend on her the way I do. First off, I have never seen someone with so much on her plate who always manages to make it seem like she has all the time in the world for anyone who needs it. Secondly, nothing is ever a problem from Kelly's vantage point. In fact, one of the most common things I hear her say is 'Not a problem!' with a sing song emphasis on prob. She never burdens me with the logistics on her end or distracts me from the problem at hand. Oftentimes, keeping my focus on the ball is the only thing that keeps our tiny world spinning on its axis, something she knows like no one else. Third, Kelly has an unique ability to be cavalier to my Mom about their visits. This makes it easy and disinterested and 'not that big a deal' for Mom that Kelly stopped by at just the right moment to distract us from the waiting and the fear and the pain and the bureaucracy. Even though I know it is, even though Mom knows it is. And so, for those of you wondering why we always call Kelly, burden Kelly and don't utilize the love of the rest of you enough, these are a few of the reasons! Thanks to all of you and thanks for Kelly!!]

Babble aside, shortly after Kelly arrived, we were called back and Mom was whisked off to get her newest radiographs...

Of her pelvis?!?

A few tense moments were faced by Mom as she was told she had to have films of her broken pelvis, stopped to wonder if perhaps she had missed something and it was actually broken and then sent for me. Everything got sorted out but it was a suboptimal experience on top of a long wait. Props to Jeanene, by the way, who took matters into her own hands at this point in order to get Mom seen sooner and her wait shortened. Props also to Dr. Kregor for responding to Jeanene's prompting in the face of his own stress and backlog and making things happen.

Pleas- a delight as always- cut off Mom's cast before she enjoyed a lightning round of 'I promise to be good' with Dr. Kregor. Mom received a promotion! Instead of replacing her cast, he transitioned her to a walking cast that can be removed for physical therapy. After extensive wheedling and promises to thwack Mom on the head with a scrub brush should she break the rules, I convinced Dr. Kregor to allow removal of the cast for bathing. This of course makes for the first time since the accident that Mom can enter the shower truly naked and submerge all of her in the water. A big step forward although a hard sell currently as the new gear means more discomfort and more work.

Today Mom went to Stallworth, almost a rest for her these days, and I spent the morning working on my research presentations. We met up at Stallworth, caught lunch, ran some errands and went home to rest awhile. Tonight we headed in for a delightful rehearsal with the VCC. It was exciting for Mom to be there, for me to see her scribbling notes and itching to take back the reins. Mom getting back into her element, her life. Reminded me of the scene in The Replacements when Gene Hackman says to Keanu Reeves, 'Winners always want the ball.' Or the stick in this case.

Tonight I rest uneasy in my skin, unready for tomorrow. Tomorrow we start the shots. Granted, Mom is a great patient with never a complaint, and it is the best right course for her. That doesn't, however, mean that I can find a way to look forward to sticking her twice a day every day for at least two weeks. This isn't like insulin, it is a reasonably large volume of fluid. Ugh. But we are both putting on our game faces and hanging tough.

Monday Mom is slated to get her IVC filter out by the interventional radiologists. Then Wednesday next (the 4th), Mom has the surgery to correct the disarticulation of her hearing bones (incus and malleus). Hopefully, God willing, that will be the end of the doing of things... We'll see.

With regard to the shots, I will let you know how it works out.

With love from our humdrum frontlines,

jax

Tea

Tea
Originally uploaded by jacquichris.

Although I took these pictures right after we got here from LA, I hadn't gotten around to posting them.

This is the box from a spectacular jasmine tea that I picked up at Hop Louie in LA. It was one dollar for 20 bags. An amazing bargain. Light delicate fragrant aroma and flavor. The flavor of complete and pure relaxation.

Apparently, it is also quite challenging to make as the box comes with the shown detailed instructions for brewing.

Bag

Bag
Originally uploaded by jacquichris.

In case there was any question, jasmine tea makes an ideal gift... it says so right on the bag.

And this is fun why?

In my previous post I promised you the skinny on hydrocodone withdrawal.

Where to start? Hmm...

First off, Mom started the Lortab when she was discharged from Stallworth. Before that, she received meds in hospital but probably kept herself undertreated for pain. Since we have been more adequately treating the pain, Mom has been more active and has had fewer bouts of severe depression.

That said, what it hasn't done is to make Mom high, excessively jolly or led to any particularly smashing visions.

The withdrawal symptoms for narcotic derivatives include severe agitation, paranoia, 'scratchy' skin, unstable melancholy and inability to sleep.

'Where exactly is she going with this?' I hear you thinking.

People abuse these drugs. Some are even Class 3 narcotics, meaning they have been abused a lot. So again, I ask, this is fun why?

Withdrawal symptoms take one to two weeks to dissipate. One to two weeks of thready tearful agitation and insomnia.

Undertreating short-term pain, besides the obvious quality of life issues, decreases wound healing and leads to higher levels of chronic pain.

The crux of the dilemma is that Mom doesn't want to develop addiction or repeat the withdrawal experience but she is battling pain she cannot control with over the counter medications.

Currently we are trying to walk the fine line between controlling the pain through judicious use of a less strong narcotic (Tylenol 4s) and avoiding addiction. Probably a fruitless battle as we still have a surgical procedure and an actual surgery to go. In addition, Mom is starting rehab on the ankle this week which will bring pains of its own.

What a long stupid road we travel. How lucky we are to have all of you on this road with us.

Serenade

After her lovely appearance at the concert, Mom and I were busy busy busy with doctor visits on Wednesday. Also Wednesday we decided Mom was ready to drop down from the Lortab to a less hard core painkiller. The upshot of the first was that we were taxed and Mom was an emotional mess during the day. The upshot of the second is that Mom was up all night with the jitters and itchy skin. (More on hydrocodone withdrawal later.)

Thursday was much better and Mom attended the transition meeting of the VUCC officers. She received a wonderful surprise at the meeting when she was serenaded by the Men's chorus. It was delightful!

[More soon but wanted to share the serenade right off.]

For the longest time

Serenade
Originally uploaded by jacquichris.

Oh, oh, oh
For the longest time
Oh, oh, oh
For the longest time

If you said goodbye to me tonight
There would still be music left to write
What else could I do
I'm so inspired by you
That hasn't happened for the longest time

Once I thought my innocence was gone
Now I know that happiness goes on
That's where you found me
When you put your arms around me
I haven't been there for the longest time

Oh, oh, oh
For the longest time
Oh, oh, oh
For the longest time

Serenadee
Originally uploaded by jacquichris.

I'm that voice you're hearing in the hall
And the greatest miracle of all
Is how I need you
And how you needed me too
That hasn't happened for the longest time

Maybe this won't last very long
But you feel so right
And I could be wrong
Maybe I've been hoping too hard
But I've gone this far
And it's more than I hoped for

Who knows how much further we'll go on
Maybe I'll be sorry when you're gone
I'll take my chances
I forgot how nice romance is
I haven't been there for the longest time

Solo
Originally uploaded by jacquichris.

I had second thoughts at the start
I said to myself
Hold on to your heart
Now I know the woman that you are
You're wonderful so far
And it's more than I hoped for

I don't care what consequence it brings
I have been a fool for lesser things
I want you so bad
I think you ought to know that
I intend to hold you for the longest time

For the longest time
Oh Oh Oh
For the longest time
Oh Oh Oh
For the longest time
(Fade out)

Thank You

Greetings!

MANY thanks for a fabulous evening of music! EVERY CHOIR sounded wonderful and it was such a treat to see each and every one of you! I can't improve on Jacqui's writing, but I must tell you that it was the best possible medicine for a recovering choir director and I'm so grateful! I treasured every note of the concert - thank you!!!

Your beautiful voices, kind words and encouragements have given us more strength than you can ever know. Thank you for being so
faithful and for giving choir your best efforts - it shows!!!

I don't know if you know this but I've known many of those girls in the Blair Children's Chorus for as many as 10 years - from the young age of 8 to the beautiful maturity you saw and heard. Nicole Naumann - in from Boston to sing with BCC - joined the choir when she was 8 - back in 1988 - how wonderful it is to hear that beautiful mature voice. A thousand thank yous to Hazel Somerville and Lauryn Moody for stepping in and leading these girls so beautifully.

It was a great gift to hear the VU Concert Choir under the fine direction of Brian Warford and beautifully accompanied by Robbie Jones. This choir's season is over, yet they came - during a really busy time right before finals! Thank you - it was wonderful!!

A thousand thank yous to the First Presbyterian Church Choir and their outstanding director, Raphael Bundage. Their gift of song was beautiful and I treasured every note as I treasure all those friendships from my time at First Presbyterian. Bless you!

All the solos were gorgeous and the Community Chorus closed the concert with beauty and grace. Seeing and hearing these fine singers was another true blessing. Each piece was delivered with meaning, beauty and grace and touched my heart. Thanks to David Childs for adding this choir's labors to an already full plate of responsibilities - what a dear and kind friend he is, and what a fabulous musician!!

My recovery continues - Hallelujah - but it takes patience and I
beg your indulgence. A couple little surgeries to go and
exercising patience while the brain heals...it will be OK though
and I WILL be BACK making music soon! What a miracle and what a gift! Thank you all!!!

THANKS to Kelly and Bill Christie for organizing this wonderful concert and bringing it to life. I couldn't ask for better, more loving friends and VCC couldn't ask for more devoted leadership!!!

Do remember - always keep singing!!!! Music has amazing power.

Much love, Pam

Humble honor

Having returned from the benefit concert, I sit here struggling to put into words what the concert meant for us, for me. There are simply not words enough to share all that is in my heart, but I will try to bring a little of the night to those who could not attend.

The Cathedral of the Incarnation is a stunning Catholic cathedral with a gargantuan sanctuary and welcoming archways. The floor is tiled in a mixture of matte and glossy tiles that knits with the mahogany pews to knit a feeling of polished timelessness. The ceiling vaults to uncalculated heights with delicate murals floating between the buttresses.

Not that that is necessarily what the Cathedral of the Incarnation looks like.

Odds are reasonable that some of the details are incorrect given the many many things my senses were drinking in at the time. But it is probably close enough.

The program was simple and beautiful. A photo of Mom smiles out from the inside page with the following:
"It is a joy, an honor, and a real privilege for me to celebrate the music with you tonight. I am honored by the many gifts of all these singers and deeply appreciative of their services and vast talent. I hope it gives you as much joy and delight as it gives me. For thirty years, it has been my privilege to make music with children, young people and adults. Thanks to the prayers of many, the care of family and friends, and the skill of many doctors in two states. I trust I'll be back making music with everyone soon! Thank you very much for this wonderful music!"
-Pam

The front pew had been reserved so the distance for Mom to walk from the back door would be small. [She did not wish to use the wheelchair if avoidable.] When we arrived at the pew, we were greeted by a lovely display of flowers for Mom from well-wishers.

The concert was opened with remarks from Mark Wait, Dean of the Blair School of Music and Mom's boss. Did we mention that Mark was up for two Grammy's this year? His comments were wonderful and candid and, honestly, I remember very little of them. I was frankly still overwhelmed to realize we were really at Mom's benefit. We. As in all of us. Me, Rol and Mom. All intact, at least as intact as we ever are.

As those of you in the Nashville area will know, Kenneth Schermerhorn died yesterday. He was the conductor of the Nashville Symphony, a wonderful man by all accounts, and a fixture in my youth (we had a Kenneth in the box-like a Jack in the box but different). Mark did an excellent job of honoring Kenneth's passing while still celebrating the miracle that is Mom's life and recovery.

The Blair Children's Chorus then took stage and performed three pieces including a lovely rendition of Gloria Tibi (Bernstein) with Nicole Naumann in from Boston to sing the solo and a spirited rendition of Cantate Domino.

All I could find myself thinking was 'What a precious gift life is, how grateful I am to You for this gift of my mother back.'

The first interlude was Nocturne for Harp and Organ (world premiere!), by Parker Ramsay. It was poignant and sweet, especially given that the author is 14 years old.

After the interlude, the Vanderbilt University Concert Choir performed four pieces. The first of these was Sing Unto God (Handel) which really resonated with me. During their last piece, Be Thou a Smooth Way (Johnson), I suddenly felt... different. Looking back I found myself thinking, 'This was the moment that You showed me the darkness was past.' It was like coming out of a narrow tunnel after driving so long in the dark.

The next interlude was a stunning solo, The Call (Vaughan Williams), performed by Michael Rickelton. Heartfelt, direct, textured.

Raphael Bundage led the First Pressbyterian Church Sanctuary Choir in two pieces by Robert Shaw. They were just lovely. It was like old, old times to see Nicole and her parents, the Kirbys, the Swansons and everyone else.

The final interlude was Giunse alfin il momento... Deh vieni, nontardar (Mozart) performed by Angie Antkowiak. Her voice was as lovely as her posts have been kind.

The Vanderbilt Community Chorus performed the last segment of the program. By this point Mom was so excited and moved, she couldn't stop wiggling in her seat. She turned to us over and again saying, 'I love these people! I just love these people! They didn't even have to sing. They could have just stood up.'

But they did sing. They opened with My Spirit Sang All Day (Finzi). A joyous and topical offering.

David Childs yielded the baton to John Sevier for a truly spiritual offering of The Snow (Elgar) performed by the women of the VCC. This was followed by Shenandoah (Chilcott). As many in the choir could attest, I found tears trailing down my cheeks. The last time I heard Roland sing Shenandoah, love bubbling over, Mom was still in L.A. in the coma and on the ventilator with recovery so far off as to be unpicturable though always in the imagination. But now Mom sat beside me, so glowing and true, as the music washed over us.

The VCC closed with a charming and playful rendition of 'S Wonderful (Gershwin, arr. Blackwell) after which Mom stood up and made a few comments to a standing ovation. The recital closed with singing of a favorite hymn When in our music God is glorified (Stanford).

We were lucky enough to enjoy meeting old and new friends at the reception thereafter. And so closed a glorious evening of song and fellowship.

Overall, the recital felt like a baptism with all of us washed in the music, love and the glory of God and then emerging strengthened by His/Her love to start this 'new' life with Mom.

It continues to be an honor to know each of you. Thank you all for your continued love and support, for continuing on this exploration with us. I hope I have been able to share a little of the magic of our night with you and I leave you with the closing hymn-

jacqui

--------------------
When in our music God is glorified

When in our music God is glorified,
And adoration leaves no room for pride,
It is as though the whole creation cried:
Alleluia!

How often, making music, we have found
A new dimension in the world of sound,
As worship moved us to a more profound
Alleluia!

So has the church in liturgy and song,
In faith and love, through centuries of wrong,
Borne witness to the truth in every tongue:
Alleluia!

Let every instrument be tuned for praise!
Let all rejoice who have a voice to raise!
And may God give us faith to sing always:
Alleluia! Amen.

Puttin' on my top hat

Concert
Originally uploaded by jacquichris.

Mom with Kel

Mom with Kel
Originally uploaded by jacquichris.

Hard to say who had worse nerves...

Zazen

Tree
Originally uploaded by jacquichris.

From my journal:

In the last class with Rodney Yee, he read a passage from Suzuki Roshi about practicing zazen (Zen meditation).

To whit:
'You do not practice zazen. This is wrong idea. The foot practices zazen, the breath practices zazen, the heart practices zazen, the mountain practices zazen. The water practices zazen by flowing, the bridge practices zazen by staying still. Each of these practices zazen in its own way. To say you practice zazen is arrogant. Each part practices zazen in its own way. So that all things (and parts) are practicing zazen independently.'

This attention to the parts and their independence, to parts and their interdependence, to other parts of the world and their interrelation, was a needed reminder for me...

... [and so sometimes] perhaps it is not a matter of doing something different but doing the same thing differently. Such an important truth for all aspects of life but so often I find external pacing affecting me, codifying a fluid experience. Which returns me back to, 'The legs do zazen, the arms do zazen, the mind does zazen.' Remembering how prideful it is to think I do zazen. Such a simple lesson but one I must relearn with each breath for to accept it and live life this way is to live in accord with uncertainty. To discard the illusion of control and accept that I, as part of my parts, am only one molecule of water in the river. If I flow not with the river, I become separate from it, from the experience, from the world, and thus I deny myself the completeness and wisdom of the world.

You do not look forward to or seek out pain when going on a long hike, holding a yoga pose or participating in a relationship. But pain is sometimes an inevitable part of the journey as your legs are pushed, your shoulders remain engaged down the back, or the relationship changes. It does not mean you do these things for pain or enjoy pain but the pain is sometimes a necessary part of taking the trip or participating fully in the experience.

------------------------------
The following are parts of the talk Suzuki Roshi gave:

'Each part of your body should practice zazen independently or separately; your toe should practice zazen independently, your mudra should practice zazen independently; your spine and your mouth should practice zazen independently. You should feel each part of your body doing zazen separately. Each part of your body should participate completely in zazen...

Don't move your legs for your own convenience. Your legs are practicing their own zazen independently and are completely involved in their own pain. They are doing zazen through pain. You should allow them to practice their own zazen. If you think you are practicing zazen, you are involved in some selfish, egotistical idea...

Water is practicing zazen with movement, yet the water is still while flowing because flowing is its stillness, or its nature. The bridge is doing zazen without moving...

Let the water flow, as that is the water's' practice. Let the bridge stay and sit there, because that is the actual practice of the bridge. The bridge is practicing zazen; painful legs are practicing zazen; imperturbable zazen is practicing zazen. This is our practice.'

The heart is a lonely huntress

Heart
Originally uploaded by jacquichris.

Poor Glenn.

After 5+ years of chasing the birds, squirrels and rabbits, Glenn accidentally caught one. He caught it and killed it and felt bad.

Really.

I swear.

He brought the little rabbit to the door, dropped it and fairly curled his toes together in anxiety about 'what he had done.' He broke his toy, seemed to recognize it was a life not a toy, and didn't know what to do to fix it.

It was sad but we got through. We collected the poor dead bunny into the trash and removed the happy ribbon from his neck. Then we sat down to spaghetti for dinner.

With love from the house of insanity,

jacqui

Coiffed

Mom
Originally uploaded by jacquichris.

Mom and her 'new do.' This photo was taken after her har appointment on Friday. A little tardy in the posting but well worth the wait.

Lack of substance

A momentous thing has happened.

After a few days of outpatient therapy and medical errands, Mom and I went over to Mickey's yesterday to visit and do some chores for her.

Now, to the untrained observer, this sounds like mundane, boring, normal living. But to the savvy insider who perhaps knew a little of our personal rituals, this is mundane, boring, normal living! For the first time since the accident, Mom and I have slid a little ways back into old if altered routines.

Tuesday after therapy we headed back to the Eye Institute to pick out glasses. After a grueling 20 minutes of trying every frame thrown her way, Mom settled on fabulous frames in a plucky red color with a bit of kitsch in the arms. Kelly and I were both envious of Mom's alacrity in making the just right choice.

Mom had been worked hard at outpatient therapy Tuesday and Wednesday as the current patient list is thin. On Wednesday she was informed that her progress continues to outstrip expectation and they wish to take her to half-days starting next week! Also, Mom has a new nickname, The Encourager, as a reflection of her continued tendency to put aside her own frustration and difficulties to help keep the other patients going.

Most of Mom's therapy is currently aimed at getting her back to work. When Mom wrote out her job responsibilities for the occupational therapist, she was told in no uncertain terms that she is going to have to make some changes for the work transition to succeed, including improved delegation skills. As she will not be able to climb the stairs at the MRH for quite some time (probably Julyish), we are also working on determining which work items can be performed in the Blair office and which will need to be moved home.

After therapy on Wednesday, Mom and I decided to stop by for a visit with Mickey. At that point, we discovered there were two steps, back to back, to get into Mickey's apartment. Mom took it in stride and did an excellent job manuvering herself and the walker both up and down them with me just there as a net, per se. Cheers for Mom!

By the time we returned home, we were both completely knackered. Happily for us, Roland brought home more spectacular food from the Piano Department faculty. The food is truly a blessing as it allows time in the evening to rest and get prepared for tomorrow. Thanks again to all the amazing cooks caring for us!

This weekend is going to be rather exciting, for me at least. Mom and Roland read that yogi Rodney Yee will be in town and signed me up for a 3 day series of classes. It is a spiritual and physical break I desperately needed and was incredibly thoughtful of them. This also means that Rol and Mom will be pretty much on their own for most of the weekend- a spiritual and physical break that I am sure they need! :-)

Next week we start back Monday with doctor visits, not that many though, and hope to join you all for the concert Tuesday.

Well, that is about it from here as life inkles a little closer to normal.

With love-

jax

Slippy slippy days

The road to hell is paved with good intentions. Or the road to adequate blogging in this case.

I have been sitting here trying to remember why I didn't post on Saturday.

We got up early enough Saturday and drank coffee for a bit. Then Roland was off to all-day auditions. Mom and I headed out shortly thereafter. We went to the gym. It was a bit of a challenge getting Mom and all the gear inside but things were fairly smooth sailing from there. The PT at Stallworth said that Mom could safely try riding an exercise bike without breaking the 'no weight-bearing' rule as long as we were careful. So we got Mom settled in on the bike and I went to change. Mom rode a solid 40 minutes- granted the bike was off instead of on level 12- but it was 40 minutes nonetheless! (Treadmill warm-up, abs, legs, and 20 minutes bike for me.)

Then home for Home Ec 101. Mom started on banana nut bread while I ran to the store. (Don't worry. We have loads of rules for our small separations.) I got back and Mom was completely tapped out and taking a rest on the sofa. We finished up the bread and moved on to oatmeal raisin cookies. Woo hoo! Exhausting but yummy.

Mom commented repeatedly on how striking it was. The draining difficulty of just lifting the oil, finding the vanilla, dragging the sugar from the cupboard. The profound exhaustion of just assembling batter.

Aching to watch for anyone. Truly heartwrenching when said person is such a dynamo as Mom.

Then rest for Mom and chores for me. That pretty much took care of Saturday. Sunday was fairly equivalent except that I got out a few hours for a pleasant evening with new friends. Joy. Getting out is critical to maintaining balance and perspective yet also so hard at the end of a long draining day.

shew.

As Mom would say.

Today, anticipating a long long day, we headed out a little late. First stop, have Mom's blood drawn. Lunch to follow then on to the neuroophthalmologist. Mom wound tight but coils on the low-down. She, of course, knew there was something wrong with her eyes, but didn't want anything sinister to be found. As she cannot recall the accident, she has a subconsious fear of it recurring without warning. So she is always waiting, for the other shoe to drop.

The appointment started promisingly enough with little wait in the first waiting area before heading back with our forms. Little waiting in the second waiting area and then in for history taking and examination by the primary technician who started with the pirate type tests...

Can you see me now?

Pirate
Originally uploaded by jacquichris.

After reading the little number lines with one eye covered, Mom was instructed to reread the lines with both eyes covered and seeing the the lines through tiny little holes in one eye patch.

Oy!

It seemed to help, though, to have the little pinpoints to look through.

Rte 96

Rte 96
Originally uploaded by jacquichris.

Ha ha! The color blind charts are guaranteed to recur throughout life. Over and over again...

Mom aced it. Of course.

Ick! Its a bug!

Bug
Originally uploaded by jacquichris.

This was a test evaluating Mom's ability to see in 3D. She was handed a slate after donning the glasses. The above was her exact statement.

After seeing the bug, she flipped over the slate and had to pick the 3D item on each line. She did OK.

After this, there was a lot of waiting (over 1 1/2 hours) for the doctor to come in. He held Mom's head at different angles and had her look at an 'O'. Sometimes, she saw one, sometimes two, sometimes one but quite blurry.

Then held a prism to one eye with her head in the same position and the doubles went away.

Unfortunately, the doctor's bedside manner left something to be desired and Mom's anxiety got away from her.

Honestly, his manner was so offputting and stilted, I started to get anxious and I knew better...

E

E
Originally uploaded by jacquichris.

For those who have seen the Incredibles, the reference to E is apparent.

Well, after all that, the long and the short of it is that Mom needs glasses. With prisms.

How very retro and Pink Floyd of her.

The actual diagnosis is skew deviation.

Skew deviation is defined as "a vertical ocular misalignment of prenuclear origin." This is hypothesized to result from "damage to tonic otolith-ocular pathways is generally compatible with both the known anatomy of otolith pathways and the clinical presentation of skew."

The jist of it is that the two sides of Mom's brain are not currently in agreement. Over time, the two sides of her brain will start seeing eye to eye again, forgive the pun. As that happens, Mom will need smaller and smaller prisms and the lenses in the glasses will be changed out.

Upshots

After the 3 1/2 hour neuroophthalmology appointment, Mom moved on to her next appointment with a psychologist who specializes in brain injury. No break, no rest. Somewhere along the way Mom recognized an important thing- she doesn't want to know about the accident. She doesn't want to know what happened, how much 'less dead' she looks, any of it. It wakes the sleeping fear that this might not be 'over,' that the accident may occur again. And, correspondingly, Mom cannot not be exposed to conversations she doesn't want to be involved in if she doesn't speak UP for herself! So don't be offended if you see a new edgier Mom as she tries out new boundaries!

With love from the house of empowerment-

jax

Oh happy, happy day!

My, we have had a busy week!

The last time I posted, we had just finished out a grueling day of doctoring. Since then, it has continued in a whirlwind of change.

Wednesday was almost a vacation as Mom just had day therapy and no doctor appointments or blood draws. At the end of therapy we were informed that Mom is being downgraded? promoted? to three days of therapy per week! This is sooner than they anticipated and a reflection of her continued spectacuclar progress. In addition, Ann stated that Mom was so good about doing her exercises and improving her stamina on her own that they no longer felt they could justify charging for it! So day therapy will no longer include PT, but Mom can still use the equipment and mats during her free time.

Because the balance appointment was expected to be lengthy, Mom was next scheduled for day therapy on Tuesday! Thursday morning wasn't super great as Mom couldn't have a pain pill before her appointment. The rain poured and poured on the trip in for the balance appointment; thankfully the entrance was sheltered from the elements. As you can see in the following pictures, no stone was left unturned at the doctors!

Becoming borg

Becoming borg
Originally uploaded by jacquichris.

Here they apply a large number of electrodes to Mom's face through which they will track her eye movements in the coming tests.

Borg

Borg
Originally uploaded by jacquichris.

Don't know about you, but this kind of reminded me of Patrick Steward after he was captured by the borgs in Star Trek.

Lights

Lights
Originally uploaded by jacquichris.

While Mom kept her eyes trained on manic dots, the computer tracked her eye movements versus the dots' positions on this screen. If you employ your Superman vision, you may be able to make out the tracings on the screen.

You are getting sleepy...

Lights2
Originally uploaded by jacquichris.

Here Mom sits, watching lights zip around on the strip while holding her head still. I tried to play along from behind her but the dots blurred and I just got crabby.

Thwack

Thwack
Originally uploaded by jacquichris.

As Mom has pressure equalization tubes in her ears, she narrowly escaped having water trickled in her ears. Without doing the Chinese water torture test, they cannot say for sure that she does not havve a compensated vestibular issue.

To make up for this disappointment, they instead performed a test where the doctor whacked Mom repeated on the head with a mallet (100 times very quickly) while she kept her head partially elevated but in a supine position. They claimed that they would measure inner ear function via electrodes on her neck muscles but I'm not sure I'm buyin' it...

Vortex

Vortex
Originally uploaded by jacquichris.

Here the doctor hooks up Mom's electrodes while she sits in a swiveling chair. Once hooked up, the doctor leaves, the doors are closed, and Mom is plunged into darkness. The chair then takes off, swishing back and forth- 'just a little bit faster now.' Sometimes she also had to keep her eyes trained on a light emanating from the bulb visible in the foreground.

Vortex

Vortex
Originally uploaded by jacquichris.

Here the doctor hooks up Mom's electrodes while she sits in a swiveling chair. Once hooked up, the doctor leaves, the doors are closed, and Mom is plunged into darkness. The chair then takes off, swishing back and forth- 'just a little bit faster now.' Sometimes she also had to keep her eyes trained on a light emanating from the bulb visible in the foreground.

Vortex on the flip side

Vortex2
Originally uploaded by jacquichris.

In this photo we see what is going on outside the vortex. The operator sits, chatting with Mom through a mic and watches her eye movements on the left screen while we can dimly see her on the screen on the right.

Mom tolerated a good fifteen minutes of this test without 'caving under the pressure.' The main doctor came back in asked for 30 seconds more testing and Mom agreed- as long as it was just 30 seconds!

Not sick yet

Not sick yet
Originally uploaded by jacquichris.

Having survived the last 30 seconds of testing, Mom could boast of an intact vestibular system and a remarkably strong stomach!

We of course we to lunch to celebrate and had a delightfully yummy meal at Nick and Rudy's. Mom got to take her painkillers and we chatted and supped quite well.

Birthday joy

Home we went to rest on Thursday. Mom was greeted by a festival of birthday cards in the mailbox and a delightful present. Being a particularly lucky girl, I was also the recipient of a special gift. I will post pictures of them post-haste.

After a roller coaster ride of an afternoon as we thought Mom's surgery might be drastically pushed up to this Friday and then was not, we settled it for a little rest.

Today has passed smoothly for the most part- as birthdays should- with a morning massage for Mom and a surprise luncheon with the Christies and Grandma. Now we are home and after enjoying opening more of your thoughtful cards, Mom is taking a well-earned rest. As you are now caught up on current events, I intend to follow suit! Tomorrow I will try to sign in and inform you of our plans for next week.

With love-

jax

Piano

Piano
Originally uploaded by jacquichris.

A delightful treat for Mom from my dear, dear friend Nancy in Estes Park. Nancy made this and the one to follow by hand for us.

How very lucky we are to have such thoughtful friends!

Mom is entranced of course.

Cat with fish

Cat
Originally uploaded by jacquichris.

When clasped, the kitty has the fish in its paws. You may (not) be able to see the kitty's free-hanging tail as well. It is a lovely piece that I have worn almost continuously since it arrived.

Thank you so much Nancy. Your continued thoughtfulness and love buoys and humbles me, staving off homesickness. I cannot wait to hug both you and Dave again!

jackie chris

An ode to Family and Friends

Greetings to all and love!

I am honored and awed each day to read and hear your beautiful posts! I wish I could tell you how much they mean to me and tell you how much your words encourage and help me. My recovery is slow, but it seems to be steady and your help really helps me keep going. I have more energy and stamina almost every day, and I look forward to the time I can be with you all once again.

As I begin to feel better, I am overwhelmed with gratitude - for life, for love, for the gift of family and friends, and I must take this opportunity to say a big thank you to my dearest Jacqui. She has given up so much to be here and she does more for me than anyone can imagine. She goes with me to every doctor's appointment. She knows EVERYTHING about my case, and keeps these 12 or more doctors straight on exactly what has happened, what the concerns are, etc. Somehow she carries around the walker, my bag/purse, her giant briefcase full of medical papers, etc., and pushes my wheelchair and gets me where I need to go. She calms me down and soothes my aches. She is handy as well. At home, She has rigged up a first class shower seat that allows me to actually get clean! She makes sure that all is neat and handicap accessible so I can get around a bit and she constantly encourages me. I could not manage without her and I treasure every moment we spend together.

Roland has been a prince - he even makes a 6 am daily pilgrimage to get me food at McDonalds - for some reason I am ravenous each morning! His love nourishes me and sustains me and I am so lucky and grateful to him for all he is, for all he does and for the kindness he shares.

Thank you again for all your support and for helping support Jacqui and Roland as well. It is appreciated more than you can ever know. God bless you! Pam

Two for Tuesday

Hanging out, with my kitties, waiting for the plumber. Yes, I could just figure out how to fix the faucet, but I already fixed the icemaker and the guest room. I'm trying to pace myself.

Yesterday was a long day. A long long day. Not that we got home late. It was just a taxing morning.

First appointment of the day was with Dr. Labadie, the ear specialist. (As you will recall, Dr. Russell didn't do ears or windows, only sinuses.) The appointment was added on at 8 am, and we waited for an opportunity to be sneaked in between cases. The resident we saw first was quite nice and Mom enjoyed a little visit with Anton as well. Dr. Labadie and the residents reviewed the CT findings and felt there was definitely room for repair but they were somewhat concerned about throwing off Mom's balance given her intermittent dizziness and vertigo. So we have tentatively scheduled surgery for May 5th, contingent upon the results of balance testing set for tomorrow. Once those tests are in, Dre. Labadie will review them and discuss the procedure with us. In the interim, he provided Mom with an expensive little gizmo that converts sound into vibrations that then are received by the brain via bone conduction without involving the hearing apparatus in the ear. This definitely normalizes sound quite a bit but requires good contact with the skull and so causes headache with prolonged wearing from the pressure of the headband and gizmo.

This bundle of good news took 2 1/2 hours and then we hurtled pell-mell through the hallways and over bridges to Mom's next appointment in MCE, making a mere 30 seconds late. Ha! Ari Luyendyk has nothing on me.

Happily, Dr. Dendy's office is spectacularly organized and we had little wait before seeing the doctor. We rvdid have a bit of a stressful scare trying to get Mom on the exam table (will heed my better judgment and refuse next time) but overall survived unscathed. Dr. Dendy was a total delight and is enrolling Mom in the coumadin clinic to facilitate management of her anticoagulation. These are pharmacists that solely manage coumadin and are a treat to talk to as well. I thought about asking if they would consider taking on animal cases as I hate regulating coumadin but am waiting until I know them a little better.

Then off for lunch- we went to the Tin Angel, Mom's favorite. Again we were humbled by the kindness of strangers as the valet waited till we were inside before parking the care, the hostess helped us to the mathroom so we wouldn't overlook the slippy spots and the waiter summoned the valet when we were about ready so that Mom didn't have to do any waiting. Lunch itself was spectacular and we look forward to returning there in the near future.

Then back to Stallworth for a couple hours therapy. A hard sell for Mom given our exhaustion but lightened by the arrival of a spectacular flower arrangement from the VUCC. Perfect timing as Mom has been seriously questioning whether they will want her back given how well their last concert went. Finally home home home to crash in exhaustion.

Joined by Grandma for chatting and a delicious meal courtesy of our fabulous neighbors. I honestly don't know how we would get through if we also had to fend for ourselves in the kitchen. We would certainly never make progress putting meat back on Mom, who weighed in at 102lb with cast yesterday! Just in case we don't say it enough, the food has been a true Godsend. Another thing for which we are profoundly grateful.

I will try to get a picture of Mom with the hearing thing to put up. [For the backpackers, it kind of looks like she is wearing a Petzl headlamp with the bulbs behind her left ear.] Off to do more chores.

With love,

jackie chris

Concert
Originally uploaded by jacquichris.

For the LOVE of Music

MARK YOUR CALENDARS! The date is set for our concert honoring Pam.

Tuesday, April 19, 8:00 PM, Cathedral of the Incarnation
2015 West End Ave., Nashville, TN

Please invite your friends and colleagues! It will be a splendid evening and we want to “fill the house” (or church as it were). Posters are available and are being distributed around campus and surrounding establishments.

For the Love of Music
Featuring
The Vanderbilt Community Chorus
David Childs

Vanderbilt University Concert Choir
Brian Warford

The Blair Children’s Chorus
Hazel Somerville
Coni Ely

First Presbyterian Nashville Sanctuary Choir
Raphael Bundage

We will have cards available in the concert program to share a personal greeting with Pam and family. Also, remember that a fund has been set up to assist the Schneller family. If interested, please make checks payable to: the Pam Schneller Medical Fund and mail to Bank of America, 2121 Blakemore Ave., Nashville, TN 37212.

Hoping to see everyone there. It will be a splendid evening of joy and music!

Love,
Kelly

Doctor down, doctor down!

This morning yielded a new milestone as Mom eliminated a doctor from the active doctor list. This is the first time that one doctor has not been replaced by another. Instead, at our appointment with Dr. Tulipan, the neurosurgeon who replaced doctors Davidson, Farin and the mystery faculty surgeon (all from L.A.), Mom was informed that she was no longer interesting from a neurosurgical point of view. Okay, really he said that Mom's hematomas had healed although her brain remained a little deflated on one side on CT. Given her [reasonably] boring CT and continued improvement, there was nothing he could find to cut and he could foresee no reason that would change.

Granted, this is all completely expected and what I said he would say, but it is the sort of thing that one, eg. Mom, isn't going to believe until it happens. Afterwards, we went for a late breakfast as I have revived a family policy from my youth that every doctor's visit is followed by food. Currently Mom is working hard in day therapy, leaving me a spot of time for exercise, car refueling, and blogging before picking her up. Having challenged my heart not to crawl out my mouth while I struggled at the gym, I now can virtuously enjoy a vanilla soda and a chat with you, my friends.

May you frolic in the heartening spring rays and tomorrow bring a similarly positive update. Cheers-

j.c.r.w.

Blurry days

One of the interesting things about transitioning to outpatient therapy is the way the days blur together. Individually, the days are intermittently tedious and overwhelming as we scurry from home to therapy to home. During the day I flutter about looking for mystery items the therapists want (calendars etc.), working to fit in gym time and trying to do a little work via telecommuting. Things are still in the early stage where I find myself missing coffee [breakfast] and having lunch at 3:30pm.

After her first quite inauspicious day at Stallworth, things lightened up a bit. That is not to say that life was all skittles and beer for any of us. Wednesday was almost as hard as Tuesday as Mom continued to forge through a barrage of testing. As should be apparent on reflection, the only way to truly assess a person's limitations is to place tasks in front of her that she cannot complete. This allows identification of deficits and formulation of a plan of attack. Unfortunately, it also allows total decimation of a person's morale and self-confidence, especially when that person starts prone to self-criticism and doubt. This means that, since Wednesday afternoon, a huge percentage of our family's time has been spent building back up the pluck that the therapy sessions tore down.

Thursday was particularly interesting as Mom pushed through to the last ten minutes before dissolving into an emotional puddle at an unexpected last exercise. It is something we have all experienced- single-minded determination to 'hang tough' crumbling in the final moments after a small hurdle unexpectedly pops up.

sigh.

Having this happen on Thursday is particularly poignant as Mom has been excused from Friday therapy. Friday is group excursion day. As I have been sneaking Mom out of Stallworth on outings of our own since she was able to sit in the wheelchair for more than ten minutes at a time, she is not considered particularly dis-integrated from society. She is also notably less affected than the other day therapy patients.

Friday we have for outings of our own. This past Friday, the morning was comprised of visits to CT and lab services for imaging and blood work respectively. It was outside CT where God provided his most recent blessing when a dear family friend (Mark Naumann) was placed in Mom's path as I waded through the bureaucracy. Mark suspended his own plans to sit and keep Mom company while I struggled with the orders and doctors. As waiting terrifies Mom, Mark's presence and experience in the imaging department helped allay her concerns and buy me time.

After surviving the doctors, we retreated to Fido to break the fast over java with Kelly. From there to the Greenhills mall for shopping and walking. The improvement in Mom's stamina from the previous week's trip to Lowes was truly astounding.

The rest of the weekend has mainly passed in a sunbeam-drugged blur. I did enjoy a delightful evening out with Shawn Mc and company. Four hours of just being me, not a doctor or a caretaker. Blissful and rejuvenating. My cheeks still ache from all the smiling and laughter.

Shawn made an interesting comment worth repeating: With Mom's release from the hospital, it is hard at times to remember that this does not mean she is back to her old self. I have found this to be especially challenging for Mom to remember. Your continued cards and posts are invaluable in shoring up sagging spirits and self-worth. Thank you all, again and again, for not 'forgetting' Mom now that she is home. Without you, none of us could get through this.

I must sign off now as this coming week is already riddled with doctor appointments and blood draws. We meet with the neurosurgeon for a follow-up tomorrow and with both the ENT specialist and internist Tuesday regarding her ear and coumadin management respectively. I am trying to keep Friday unblemished as it is Mom's birthday. A massage is on the books- her first since the accident- but we have kept the day open otherwise.

With love-

jax

Ponderings

Violet
Originally uploaded by jacquichris.

It is easy, when one has been gone a decade and change, to forget how lovely Tennessee is in the spring. The blooming trees and flowers provide a riotous visual feast.

But it is the violets that have always stolen my heart and breath- that special combination of understatement, beauty and pluck instills a quiet wonder in the beholder.

Violets
Originally uploaded by jacquichris.

As can be seen here, our yard provides an abundance of wonder.

Just knowing the violets wait in the dark brings a certain peace to the night. They carpet the lawn, inpervious to the threats of the lawnmower and rabbits.

Mud pink
Originally uploaded by jacquichris.

The combination of the violets and the muddy pinkness of the night merge into a surreal backdrop against which I see my life.

Suddenly it seems too strange a world to be my world. I find myself wondering if this is in fact a nightmare of epic lengths, if perhaps I will wake to find my life as it was before. If this is so, will I remember all the good lessons, still know all the amazing people and feats they can accomplish? If not, which is worse-waking from the dream or not?

A twinge shoots up my leg from the shard of broken glass skulking in my toe-disrupting my thoughts and warding off the secret sorrow of what might have [not] been.

I suspect we all have moments like these. Moments we feel but rarely record. Today, somehow, between the clay-colored night and the lawn of fine English ladies, it seemed a moment worth noting.

Please pardon my musings.

Jacqui