Mariah’s Reemergence

Saturday afternoon Mariah and I drove together from Richmond to Washington to see a performance of the Vienna-based legendary Lipizzaner Stallions.  At the Patriot Center we met friends and family to enjoy watching these magnificent creatures.  (Non-horsey readers: the Lipizzaners are the famous “dancing” white stallions who perform highly skilled and specialized dressage, in a tradition dating back 400 years.)

This was truly a magical performance by the white stallions, whose “dance moves” are almost entirely natural to them, but they are trained to refinement and to the cues of their riders to selections of Baroque-era classical music.  The term “dressage” refers to the harmony between the rider and horse, much like the ancient myth of the dragon and dragon-rider. I personally voted that we go to a dragon-show today, but unfortunately someone already purchased horse-tickets. 🙂

An entire week has passed that I have been with Mariah and selfishly kept her stories to myself.  Here is the synopsis:

After a rocky Monday morning (hey, who doesn’t have rocky Monday’s except for degenerate musicians like me who sleep through them), Mariah had a consistent and diligent work week.  Extremely successful.  At her last physical therapy she took two laps around the indoor block downstairs and on lap #2 she all but walked by herself.  She has a tendency to lean to the left due to weakness in her right leg and foot, but with encouragement from her beloved physical therapist, Alan, she trusted her leg and walked the whole second time with minimal balancing assistance.  Watching her walk from behind her gait looked so natural I was moved to tears.

Last night we stuffed ourselves silly at Carrabbas Italian restaurant and then cruised the mall to pick up a book at Barnes and Noble that had been recommended by a therapist earlier in the day. A story of inspiration and unconditional love between a damaged baby barn owl and a young woman, “Wesley the Barn Owl” describes a relationship that lasts two decades and spans heartfelt emotions of trust, loyalty, and love that are usually assumed only between humans.  Mariah really loves this stuff.  Oh yeah, apparently if a barn owl ever drops a mouse in your mouth it means he loves you.  Do not be offended.

Speaking of owls, Mariah presented her “Owl” PowerPoint report for a second time to several therapists and me.  Her presentation skills were outstanding, and we all learned more about owls in fifteen minutes than we ever had before.  I did not know, for instance, that the Great Horned Owl has been known to carry off small cats and dogs from residential backyards.

We have also had lots of laughs, as usual.  Mariah and I learned together in recreational therapy game playing that “peladophobia” is the fear of bald people.  We spent the rest of the day fearing the team leaders with hair-loss issues.  Haha!  We know how to goof off, if nothing else.

Mariah and I will spend Thanksgiving at the Fisher house where I stay on the hospital grounds with several patients, family members and guests, and of course great grub, courtesy of the amazing “blue-star” moms.

If you haven’t already, please leave Mariah a Thanksgiving message, either on the website here where I will check and relay to her, or via snail-mail, or especially in your prayers and in your hearts.  We love to know and feel that you are thinking of us, and we wish all our friends and family out there a wonderful Thanksgiving holiday.

Love and Light,
Clay

Here are some highlights from Mariah’s week in Richmond.

Fuzzy Sox (McGuire VAMC, 11/10/08)

Monday started with a gift of beautiful blue fuzzy sox from her step sister, Molly. As you can see, she was delighted with the sox which matched her Cherry Garcia t-shirt.

The results from her neuro-psych (memory and reasoning) tests came back. Her worst results were “high average”; the best were off the charts. In memory, she scored in the 98th percentile of people her age who have NOT had a brain injury. One example: the doctor told her a brief story. Twenty minutes later, he asked her to tell him about the story which she proceeded to recite word for word. The doctor laughed and said he’s never had that happen.

Later in the day she gave a talk about owls using a PowerPoint presentation she and her brother Clay prepared. Her rendition of owl hoots was … well, a hoot. She spoke with great authority and without notes, and she handled the Q&A like a pro.

Tuesday was Veterans Day and a holiday at the hospital, so we spent the morning at Brown’s Island park on the James River in Richmond, and the afternoon in the funky Carytown district. We ate great Thai food, and Mariah got ginger ice cream at Bev’s and a manicure and pedicure at Fusion. With fingers and toes sporting OPI Italian Love Affair, she’s been the envy of the ladies.

Thursday evening Colonel Atcheson took us to dinner at Buzz and Ned’s, a premier barbecue joint in Richmond, with perhaps the best pulled pork barbecue sandwich on the entire east coast. (That should start a lengthy debate.)

On Friday Mariah, Monique (speech), Irene (recreation) and I headed back into the city for sushi and more ice cream.

Late in the week the team decided to postpone Mariah’s discharge until December 10 to give her time to further develop some hygiene and mobility skills she’ll need to live outside the hospital.

“Mamma Mia!” was, in Mariah’s words, “A great movie.” See it on a large screen if you can. It’s set on a gorgeous island in Greece and is stunningly beautiful.

Here’s beauty of another kind.

Washing Up (McGuire VAMC, 11/5/08)

Stepping Up (McGuire VAMC, 11/5/08)

Beware the Med Robot (McGuire VAMC, 11/5/08)

– mark

As President-elect Obama says, “It’s time for change.” The team at McGuire has begun planning for Mariah’s discharge, perhaps as soon as early December. Nothing’s definite yet, but among the possibilities are a move back to the DC area, and maybe a switch from inpatient to outpatient rehab. We hope a step toward returning to work may be possible, too. But who knows?

Mariah is excited about the prospect of returning to her beloved Chai. She longs to see her friends, family, and colleagues again as a routine part of her day. And she’s understandably frightened about what life away from the McGuire cocoon may be like. She’s come so far, and her long-term prospects are very good, but the next steps are unclear, and she’s uncertain about her readiness to take them. Reemergence is extremely painful.

Nuking a Snack (McGuire VAMC, 11/5/08)

In the meantime, Mariah continues to improve on so many fronts. She’s able to hold a fork or spoon more or less correctly and get food from a plate to her mouth. She can open toothpaste, squeeze some onto a toothbrush, brush her teeth and rinse her mouth. She can dress and undress herself, except for shoes, socks, and clasps. She can walk on a treadmill for over two minutes, supporting her own weight. She can transfer herself between her wheelchair and the bed. She’s able to print letters on paper, and she can operate a computer keyboard with one finger. She propelled herself to the canteen downstairs, picked out a container of mac and cheese, and took it back upstairs to the kitchen where she microwaved it and stirred the “cheese” into the noodles. (She wouldn’t agree to eat it, however. Smart girl.)

She does all of this, and much more. But none of it consistently “well”, much less perfectly, which seems to still be her standard for acceptability. As a result, Mariah has to endure a lot of frustration and disappointment.

Since her return from Walter Reed several weeks ago, she’s been opening up a bit emotionally. She’s been able to talk about her situation, to express her feelings, and to cry more easily which I believe has contributed to a more positive outlook on her part. This week, however, as she girds herself for the impending transition she’s withdrawing into her stoic and somewhat stubborn persona. I pray this won’t send her back into the dark place from which she so recently emerged. Unfortunately, her psychologist is also being promoted out of the ward, so Mariah’s experiencing some pretty acute anxiety around all the flux. (This is NOT a complaint about the system; it’s as good here as it gets. It’s just unfortunate timing.)

Believing the best antidote for cares and worry is a good musical, we’re going to the historic Byrd Theater tonight to watch the film version of “Mama, Mia!” The cost? $1.99 each, plus popcorn. No wonder she doesn’t want to leave Richmond. 🙂

– Mark

Mariah kicked off her morning bright eyed and bushy bottomed waiting expectantly for LTC Atchison who promised yesterday to be back in the early am after a couple of visits this week.  (Thank you, sir. Your presence this week was a real gift and a true help keeping Mariah’s spirits up!)

I joined Mariah for the second morning in a row for her O.T. down the hall, where she is working on a watercolor stained glass picture of a motorcycle picturesquely poised beneath Mount Rushmore.  Yesterday she managed just a few strokes, and today she knocked off about one fifth of the picture with more fluid paint strokes than I would have guessed just a few months ago.  (When I told her that one of my last O.T. projects at my hospitalization at John’s Hopkins over two years ago was the same water color stained glass, she reminded me of the picture that I painted because I gave it to her when I came home.  I said, “I don’t remember my picture.  She said, “It was a cardinal, Clay.”  What a great sister.)

Mariah and I have been working on a small research project that she will present later to her speech therapist.  It is on PowerPoint, and the topic is “Owls” – anatomy, feathers, vision, and sense of smell.  We threw in a comedy fact for sense of smell: “Great Horned Owls enjoy wallowing in the perfume of skunks. They have been observed rubbing themselves in the skunks carcasses and their behavior has been described as appearing that the owl was enjoying the experience”.  Ha ha! The funny part is that owls don’t have much sense of smell, but they do smell like skunk!

She finished the PowerPoint today and ran it for me at the computer.  Most of the slides are pictures and anatomy designs, and Mariah (very adept) filled in all the gaps of info and research so I felt like I was in an esteemed lecture hall for 15 minutes.  She is brilliant.  I also came away knowing how to design a PowerPoint presentation (Oh, did I mention I didn’t know how until Mariah taught me in two thirty minute research sessions?)  Bam!  The Steinwinter-Kochavi team strikes again.  Now we are BOTH smart!

Before lunch, Mariah finally accepted a shot in her damaged right shoulder that has been offered for quite some time to relieve her constant pain. Before the shot (which is administered up under the bone) Mariah teared up in fear.  We held hands while the doc did his work, and I reminded her of a funny scene in “Back to the Future” where Michael Fox sends his dad in to a shake shop to hit on his mom.  The dad scribbles down some dictated poetry but upon reciting them he confuses the word “destiny” for “density” and strikes out. Mariah took the shot bravely and admitted it wasn’t as bad as she worried.

Mariah also earned a proud achievement today in her security measures.  For the last couple of months, Mariah has been on 24-hour watch by the nurses, for safety measures.  This afternoon the head nurse pulled me aside and said they are ready to give Mariah some space and privacy back…she has earned it with her hard work and steady progress the past several weeks.  We enjoyed the freedom with a couple hours nurse-free in her room, watching T.V. and napping, and then headed outside, all bundled up, with just the two of us enjoying the crisp wintry air.

When I left Mariah this evening she was all smiles and conversation. She was in the leisure room chatting away with one of the soldiers playing virtual golf on the Wii game, and was even dolled up with eye shadow and lipstick, courtesy of her nurse pals! She looked and felt great.

I was proud to accompany Mariah through her day.  She achieved, she succeeded, she persisted, she enjoyed, she commanded, she amazed.

Love and Light,

Clay

Well, this was my first weekend hanging out with Mariah and passing the empty Saturday and Sunday hours together.

Mariah and I both had a fairly peaceful week.  I don’t join Mariah for her therapy sessions, so I can’t really pass on any updates other than that she is showing up, suiting up, and working hard.  Mostly I join her for meal times and sit occasionally in her room while I do my studying.  The week has been met with little resistance, regular work during therapy hours, and lots of time spent sound asleep, as her brain continues to mend and reprogram itself in the subconscious state.

We shared some funny movies over the weekend, such as the old classic “Caddyshack” [Dad’s note; 1980 is “old”?], and laughter has been a part of Mariah’s regular daily diet.  She’s doing great work as she practices taking walking steps. She’ll be working on swallowing thin liquids during the week, which is the last stubborn obstacle between her and fully-regained eating and drinking capabilities.

Mariah’s speech has become increasingly clear and concise, and her mobility in general has a mark of grace that was not present just a few short weeks ago. [Dad’s note: During the prior last two weeks, Mariah would transfer between the bed and wheelchair by lightly resting her fingers palm down on mine and using that gentle contact as support while she arose from a sitting position and stood erect for a few moments.]

Please do keep the prayers coming, and along with those, please think of (or visit) Mariah over the holiday seasons.  We love cards, fuzzy socks for the winter, whole live turkeys in the mail (haha!), and so on… , and if anyone wants to send some pirate paraphanelia for Halloween, Mariah and I both need some essentials so we can be a pirates on Friday!  A soft, loose eye patch and a plastic hook would be great…  Oh yeah, and if someone sends that live turkey we can put it on her shoulder on Friday and then eat it next holiday!  (ewww….)

Mariah’s mailing address at the hospital is:

Richmond VA Medical Center
Attention: Mariah Kochavi (2B)
1201 Broad Rock Blvd.
Richmond, VA 23249

I’ll be back in touch soon.

– Clay Steinwinter

Since Mariah was hospitalized in Lima, Peru, on June 17, she has endured a hydra of tubes; tubes for ventilation, feeding through the nose and another into the stomach, oxygen, a catheter, and several IVs up and down her arms and hands. One by one they were removed, affording increments of independence and convenience. Today, the last tube was finally removed – the feeding tube inserted through her belly and into her stomach. (If you’re not squeamish, click here for a “before” picture.)

At 11:30 am on Thursday, in the space of five seconds, a doctor’s mighty tug completed Mariah’s liberation from outward signs of medical mechanical dependence. Her eyes were wide as saucers, and a gasp of relief broke from her.

She’d had nothing to eat or drink since dinner on Wednesday. By Thursday evening she could drink clear liquids, but still no solid food until Friday morning. It’s ironic that the removal of a long-unused feeding tube would necessitate a 36-hour fast. In any event, we’ll indulge in an all-you-can breakfast of eggs, pancakes, biscuits, bacon, and sausages at the canteen tomorrow.

While she rested in bed in the afternoon, I told her she could relax for the rest of the day. She said, “I don’t want to relax. I want to run.” “On the treadmill?” I asked. “No,” she replied, “I want to run with [her dog] Chai.” Some people chomp down on freedom.

– Mark

Arm Wrestling With Major Alves (McGuire VAMC, 10/13/08)

Mariah used the long holiday weekend to great advantage. She listened to a couple hundred pages of her books, entertained veterinarian colleagues who came to visit (left and below), washed her Subaru Outback and had the oil changed, ate pizza in Richmond’s funky Carytown neighborhood, and thoroughly enjoyed a beautiful manicure and pedicure – remember Equadorable Coral – complete with a vibrating massage chair that tossed her around like Linda Blair in the Exorcist.

No Hard Feelings (McGuire VAMC, 10/13/08)

We had a wistful moment while driving to the Jiffy Lube. Symphonic music was playing on the radio, and Mariah started crying. I asked what was wrong but couldn’t understand her one-word answer through her tears. I asked her to repeat it for me, but I still couldn’t make it out. Growing alarmed, I pulled off the road and turned to face her as she said, “Ballet.” (Mariah danced ballet for several years as a teenager.)

“Is it too painful; do you want it to stop?” I asked. “No,” she sobbed. “I want to hear it.” So we continued into the service bay and sat in the car. Mariah sat next to me crying quietly as the symphony filled the cabin and I answered a young woman’s questions about oil viscosity and tire air pressure. Oddly, this didn’t seem odd to any of us. In fact, it was refreshing to be immersed in great beauty, and I felt honored to be a witness to Mariah’s tender grief.

Low-Tech Reader (McGuire VAMC, 10/13/08)

With the return of the therapists on Tuesday, it was back to work. Mariah’s vision therapist, Cindy, offered several devices to help her manage printed material. Last week, Mariah had successfully read a page from one of her new large-print books of humor, but we were stumped when it came to holding the book in a reading posiiton and turning the page. This morning, Cindy gave her a simple device to try, and after some experimenting and modifications, it worked! So Mariah can now entertain herself by reading.

Senator Daniel Akaka (D-HI), chairman of the standing committee on Veterans’ Affairs, toured the hospital today. He and his entourage stumbled across me on the sofa in the leisure room where I have wired Internet connectivity. Surrounded with files, I had just finished a Skype conference call with my Boston staff when the polytrauma unit director and resident miracle maestro, Dr. Shane McNamee, asked if I was available.  “My pleasure,” I said, hopping up and shaking the Senator’s hand. He asked how I was doing, and I praised the VA for its support of wounded warriors’ families. He was delighted to hear a happy story, I suspect, and promised to do even more. With a wry smile, Dr. McNamee told Senator Akaka that he had asked Mariah earlier if she wanted to meet him, but that she elected to hide instead. Akaka laughed, and I said that she had declined to meet the Secretary of the Navy, too, so he shouldn’t take it personally.

Mariah finished the day with a treasure hunt organized for some of the patients by her speech and recreational therapists. When she returned, I asked where she had gone, and she said, “We had to locate the price of several items in the mall downstairs.” “How did you do?” I asked. She grinned and said, “I was the first to get them all right.”

What a surprise. 🙂

– Mark

Mariah greeted me with a big smile when I returned to her bedside yesterday. She said she wasn’t doing “so good”. I chattered for a moment, asking questions, and she said, “I missed you, Dad. Would you please stop talking so I can sleep?” Obliging, I read Allan Johnson’s excellent, “Privilege, Power and Difference” while she snoozed.

Then it was time for the daily Mariacle.

Sue, her physical therapist, arrived and suggested some outdoor perambulation, given that it was such a gorgeous Southern autumn day. To my surprise and delight, Mariah readily agreed. Sue moved the wheelchair close to the bed, and Mariah sat up. She reached out to grasp the arm of the chair, and lifted herself from the bed and into the chair in one graceful motion! “Wow,” I thought, “I’ve never seen that before! A week can make a big difference during reemergence.”

But wait. There’s more.

Mariah used her feet to propel her chair from the 2nd floor ward through the hospital and to the edge of the grassy lawn outside. Sue and I extended a supporting hand to each of hers, and she slowly stood from the chair. Nodding her readiness and holding our hands lightly, she walked carefully and deliberately about 35 yards in the grass and up a slight incline. Then she stopped and asked if she could turn around and return to the chair. Sue agreed, but said, “Let’s just try something first.” Then she simply let go of Mariah. Without hesitating, Mariah released her grip on us, and I followed suit. And there Mariah stood amazed, proud and tall, in the warm sun and cool breeze, as she surveyed the world from her full height. “You didn’t know you could do that, did you?” Sue asked. Mariah whispered, “No.” And, gazing into some distant place, the (triumphant?) tears flowed.

To avoid resting on laurels, we returned to the clinic for more workouts. There was no photo record of the outdoor success, but here’s Mariah in the clinic immediately afterward.

Standing Unaided (McGuire VAMC, 10/6/08)

Mariah Boogies with Sue

Done with Physical Therapy

Upward and onward. – Mark

Folks, I’ve been in Boston this week, which is why there haven’t been posts on this blog. I’m returning to Richmond on Monday and will get the journal engine cranking again soon.

Some have been asking for Mariah’s mailing address. It is:

Richmond VA Medical Center
Attention: Mariah Kochavi (2B)
1201 Broad Rock Blvd.
Richmond, VA 23249

It’s hard to know exactly what Mariah’s most pressing internal need is, but I’m guessing that she could really use hope. So if you pray, meditate, or are inclined to commune with a spiritual presence in our lives, please ask that Mariah find her way to a place where she can allow herself to hope.

Blessings on you and Mariah.

– Mark