Mariah’s Reemergence

Mariah and Dad, Christmas Day, 2007

First, to the more than 1,000 visitors to this blog in the last two days, and to the dozens of folks sending emails and calling to express condolence: thank you.

Mariah touched and inspired hundreds of people, and it seems clear she’ll continue to do so for a very long time. Her obituary was printed in today’s (Tuesday, 12/29) Washington Post Metro section on page B2. The print edition includes two beautiful photos of Mariah. You can also view it online here.

Here’s what we understand about memorial arrangements for her. These may be subject to change, so check back here for updates before making plans.

Mariah directed that her remains be donated to science (she is the gift that keeps on giving), so there will be no viewing or traditional funeral  with a casket.

Next Wednesday, January 6, there will be brief Moment of Remembrance at 0800 in the gymnasium at Walter Reed Army Medical Center. This event is open but intended primarily for the soldiers in Mariah’s brigade.

On Saturday, January 16, at 2:30 pm, a Quaker Memorial Meeting service will be conducted at Bethesda Friends Meeting in Bethesda, Maryland. The service will be in the fashion of Quakers, featuring about an hour of respectful silence punctuated by brief, spontaneous spoken messages that help us feel connected to Mariah and to one another. All are welcome, but seating is limited and available on a first-come basis. Check here for updates concerning child care, time changes, address, etc.

Finally, sometime after 6-12 months, there will likely be a service at Arlington National Cemetery where Mariah’s remains will be laid to rest in a military ceremony befitting an officer of the United States Army. Our hope is that she will be borne from the cemetery chapel to her resting place on a caisson drawn by the same beautiful horses she loved so much at Ft. Myer.

The family is determining where donations can be made in Mariah’s name. That information will be posted when it’s available. In the meantime, please send cards or correspondence only to:

Mary-O King (mother)
4425 Chestnut St.
Bethesda, MD 20814

Clay Steinwinter (brother)
1206 Cotanche St., Apt. #1
Greenville, NC 27858

Mark Steinwinter (father)
181 Cabot Street
Newton, MA 02458

Thank you once again for your prayers and expressions of sympathy. Every single kind word and thought helps us move into a new world illuminated even more brightly by Mariah’s shining spirit.

– Mark

Dear Friends,

My heart is breaking as I write to tell you that our beautiful Mariah passed from this earth on Christmas Eve.

Army Captain Kochavi struggled to overcome multiple physical disabilities that resulted from a brain stem stroke she suffered while trekking in the mountains of Peru on Father’s Day in June, 2008. Even more difficult than the physical impairments were an intractable depression and inexplicable inability to see and accept the amazing progress she made.

For several months after the stroke, she could not speak, eat, swallow, hold anything in her hand, or even sit up unaided. Eighteen months later she was able to do all those things, and much more. Recently, she was even walking with the assistance of a guide dog for balance.

Mariah was brave, strong, and stubborn. We cheered her on as she poured her heart into work that was frustrating, physically painful, and often without reward, and she did so in spite of an entrenched belief that she simply wasn’t getting better. I’m certain that Mariah would wish us to be brave, strong, and stubborn as we face tough times – like this one – in our own lives.

A final thought: Mariah was unique and as an artist she shaped the spaces, people and ideas around her into unexpected forms. Even in reemergence, she managed to surprise by reframing what that could mean. My expectation was not that she would recover precisely all she had lost, but that she would figure out how to transform the broken parts of her body, psyche, and dreams into a new Mariah, different and in many ways stronger than before. Mariah gave that an honest shot, but she finally chose to give it another meaning altogether. Instead of rehabbing one body for another, she chose to reinvent herself as an angel, as a pure spirit, eternally free of limits. Unconfined at last, Mariah now inhabits the warmest and most intimate places in our hearts.

Farewell, Bunny. God bless you. We love you to pieces.

– Mark

P.S. When we have information about a memorial service and where to send cards and flowers, I’ll post it here.

Perhaps these photos (click on the thumbnails to see a larger image) will help you recall Mariah’s amazing life and works. I hope you’ll find yourself in here, either in person or in spirit.

Recently, Mariah was a bridesmaid for her best friend, Suzanna, and her new husband Glen. Her brother Clay and I made the trip to DC to participate, too. Clay played music which you can hear on the first video.  Mariah had a cold the entire time, but she never slowed down. Here’s the evidence.

Here’s a gallery of the event:

The next day Mariah and I made a day trip to Bethany Beach, Delaware, where we often summered when she and brother were kids. The day was cold, windy and wet, and Mariah was still under the weather, but she wanted to see the ocean so off we went.

At the Beach (Bethany Beach, DE, 5/09)

The drive seemed longer and the town smaller than I remembered. We took a quick peek at the old haunts, clucking our tongues at all the changes, then grabbed burgers and fries at Five Guys (one of the positive changes). Thus fortified, we plunged back into the blowing, chilly rain and made our way to the beach.

The nasty weather had driven all but the hardiest of souls from town, so we were pretty much by ourselves on the boardwalk at the top of the dune. I held an umbrella and read from All Things Wise and Wonderful while Mariah listened and laughed from under her hood. The charming and touching stories told by an English country veterinarian prevailed against the backdrop of the pounding surf and blowing wind, and we were warmed.

After a few chapters, we marched back into town. We bought some sweets at the Candy Kitchen and found some tasty gelato in a quiet cafe that would be a chaos of vacationers in just a few days. Then we  clambered back into her old Subaru Outback and pointed the bow toward Washington, DC.

– Mark

Family and friends,

      I know it has been far too long since the last blog post.  Please accept my humble apologies for not posting since mid-March.  Mariah and I have been keeping busy as usual with the therapies and extracurricular activities.  We have spent the last two Thursdays horseback riding with the therapeutic program offered at nearby Fort Meyer at the Caisson Platoon.  Mariah beamed from atop the white horse “Clyde” last Thursday.  Her grin was actually so wide she could have swallowed Clyde whole had she been hungry enough!  The last week we have had the extreme pleasure of sharing our usual Stephanie Plum novel reading outside in this awesome Spring weather.  Thank God for it, I forget how difficult the winter is on the blues.  It is good timing for spring’s arrival, as I will be heading back to North Carolina in just a few short weeks, and Mariah is anticipating the change-of-care with apprehension and some fear.  Having some sunshine about will hopefully help her pull through the transition.

    The usual continues at the hospital.  Mariah and her physical team are digging at pain management issues to address walking difficulties that concern her knees.  She is going through some more MRI’s and Xrays, and is continuing her Occupational therapy with a current seven-week workbook to help her gain some handwriting abilities.  Recently Mariah and her case manager visited a residential reintegration program in Pennsylvania as a next-step option.  We gave it a thumbs-down due to the isolation that seemed to come with the small number of clients and the location of the program.  Our next step is under way as the Army searches for a battle-buddy for Mariah.  This would be another female soldier rehabilitating here at Walter Reed who can buddy up and assist Mariah; basically a partner system involving assistance, mutuality, and soldier comraderie.  Please send your prayers for this possibility!  

    I would like to give a huge “thank you”  to all our friends and family who continue to pray, to call, to send fan mail and care packages to Mariah, to visit us at the Mologne House, to the old faces who have shown up recently, to the nurses and docs back at McGuire Veterans Hospital who have sent their love and encouragement, and to the beautiful individuals who have shown up to help relieve me in the difficult recent weeks, and very importantly to those people who are stepping forward to companion and help as I take a big step back end of this month.  Thank You!

Love and Light,

Clay

Mariah and Clay (DC, 1/09)

After virtually living with Mariah in Washington and Richmond for most of six months, I’m finding it kind of tough to return to “normal” life. Back in Boston I rely on Clay’s nearly daily updates to keep me informed and aware of what’s going on in his sister’s – and his – life in Washington. (God bless you, Clay. You can’t know how much comfort I take in knowing your sister is in your caring and competent hands.)

She returned to Walter Reed in DC on December 11,  and since then I spent a week with her in December and again in January. Then just four days in February, and later this week another four days.

Cutting back has been a challenge. My concern for Mariah and now Clay as well sometimes blossoms into full-blown anxiety, especially when reports are dark with troubles. As hard as it was to sit by her side and watch her struggle, it’s harder to be hundreds of miles away and dogged by doubt and uncertainty for both of my brave, beautiful children.

I pray that Mariah will take heart in the old skills she has regained and the new ones she’s developing, and embrace her life with the commitment and determination that are the hallmarks her amazing story.

In the meantime, more often than not life goes on with plenty of humor and wonder and joy.

Here are the reminders of some of those from January.

Occupational Therapy (DC, 1/09)

Physical Therapy (DC, 1/09)

– Mark

Oh yeah, it is basketball finals season.  I am so excited.  I love the Red Sox.  I don’t know anything about sports.  Just not that interested.  …Until this past weekend.  Mariah and I just came back from Gettysburg, PA, where we spent two full days skiing with a group of wounded warrior soldiers from here at Walter Reed.  Mariah spent Friday  morning skiing in a sit-down adaptive seat with an instructor attached and helping from behind.  I grabbed some beginner lessons and proceeded to eat snow drift down the side of a mountain.  We had a blast.  In the afternoon we went snow tubing together.  That was a sight-to-see, I am sure.  We went attached down the slope; Clay in front feet-first, Mariah in the middle feet-in-Clay’s ears, and instructor in back, laughing at both of us.  Our third time down, we picked up so much speed that the people “stopping” at the bottom couldn’t catch us and we sailed on through and about broke through the protective mesh fence at the far end of the course.  (That was the part where I crossed myself and thought, “I can see it now: ‘Yeah, Mariah and I had a great time.  Huh?  Where is she? Oh, I might’ve accidentally sent my sister off the side of the mountain in a rubber donut. Totally not my fault, though, the army should’ve kept a closer watch on her.’ ”   I have a whole bag full of outrageous excuses for why nothing is ever my fault.  I am a little brother, and we all carry one of those bags around.

The weekend was truly a gift.  If anyone reading this post happens to have a friend or family member or know someone who needs assistance for athletic sports, if you are in the area (Liberty Mountain Resort), check out “brasski.org” first.  These guys (and gals!) have a phenomenal program for disabled people with visual, developmental, cognitive, and mobility impairments and provide great care and professionalism to getting people on the slopes and engaging in snow sports that they may have never thought possible.  Sorry for the advertisement, but this was a real memorable event and the folks who provided it are amazing.  

I was headed for a fairly tough intermediate level run this morning after hopping off the top of the lift when Manny and Mike (two of our one-legged skiers) hollered at me to turn left with them down the black diamond course that ran alongside.  I hollered out, “thanks but all three of us will have one leg by the time i fall down to the bottom of that run!”  They laughed and sped off.  Oh yeah, Mariah passed me on that blue-level course, and my instructors had just told me they didn’t believe I was a first-time skier considering my speed and ability to parallel and control, so I think Mariah could’ve been clocked at about 130 mph.  Is anyone surprised?  …Didn’t think so.     😉

It is 7:45 pm now, and Mariah and I just came back from the AFIP building where she works hours in gross pathology and histopathology Mondays, Wednesdays, and Fridays.  However, we were actually in the medical museum section of the building this evening for a social with various members of Pathology and infectious disease labs from locations all over (including local, regional, and out of country).  The function was extremely casual, which means Mariah and I felt perfectly comfortable casually eating about two plates full of those little turkey and ham rolls and then I tested how long we could keep them down while perusing the exhibits which consisted of amputated legs in jars and plaster remakes of facial reconstruction processes from post-war eras!  Most of the people at the gathering we did not recognize, although those who know Mariah from various phases of her professional life approached to say hello and conversate (yep, it’s a real word when it’s on this blog!).  Thank you to those who are there and who reach out as Mariah reemerges in the social realm.  It is certainly not the most comfortable realm for either of us, but being present with Mariah when she does things like sit up in bed and tell me which sweater and earrings she wants to wear to go to a social event is, I believe, to observe the mark of true emergence.  Therapy is one thing, and Mariah continues to kick butt growing in strength and physical capabilities, but to see the efforts in social connection and reemergence is probably one of, if not the most difficult action to take in this process.  Our days are filled with the usual:  lots of therapy, keeping each other laughing with readers digest jokes read off the computer during breakfast in our room in the mornings, comedy central stand-up TV, and gym time in the evenings.  Keep thinking positive for us and sending your prayers.  Not all our days are super productive, and some we both just struggle through at the bare-minimum, but over-all we continue to move forward.  Thank you for your love!

Clay

Clay, your post was heart-wrenching and beautiful. Thank you for your courage to be honest and open.

I witnessed and shared your deepening pain in the days just before the planned audition. If my comments about the importance of the event made it even harder for you, I’m sorry.

Fear and discouragement were my constant companions in Peru, DC, and Richmond, and it was often really, really hard to find, hold, and share hope in the face of it.  Thank you for giving so much to your sister. Holding another’s life force in your hands even for a moment is an awesome responsibility.

The good news is that growth and positive changes keep happening through this ordeal. For me, our relationship is the strongest and most authentic it’s ever been. And we, along with Mariah, are learning more about life, love, and the power of the divine spirit within ourselves than many folks even imagine in a lifetime.

I love you, Clay. Blessings on you, Son.

– Dad

Well I sincerely hope we haven’t lost anyone in the gap since the last post.

To be quite honest, I hit a slump the past two weeks on a personal level.  The good news about that is that I have managed not to drop the ball with my care-taking duties; I only nearly dropped the ball on taking care of me.   I planned on going to North Carolina last week to audition for music school possibly for next fall and I struggled to manage with my expectations not being met.

Admittedly, I have no idea how to find balance in my current life and work with Mariah, but we are both somehow still here and growing stronger, I discover.  I try to focus on Mariah’s recovery when blogging (d’uh! this is not claysreemergence.com!), but I guess that just for the present, we are in it together.

A few nights ago, I lay awake reading some poetry and Mariah tossed in her bed.  I asked her if she knew why I was here taking care of her.  She responded, “no…”   I told her that it was deeper than familial obligation or “doing the right thing.”

The poem was about hope.  It was defined as “the hardest love we carry”.  I told her that I believe I am here to help her carry that burden.  The heavy stuff is always lighter when we share the weight.

My sister is often lost in the desperation of her circumstances and I do know personally that that can be a blessing in disguise; a place from which we can receive hope.  For some of us, it is the only place from which we can become willing to receive the kind of hope we never previously thought existed.

Anyway, forgive my babbles and ramblings.  My point is that on the flip side of that “gift of desperation” is the terror of believing we are alone in our desperation.  I lost sight of my hope the past two weeks and also encountered my first feelings of questioning whether or not I want to be here doing this job.

After just six weeks on this job, I felt really ashamed and embarrassed for feeling like giving up.  But pride aside, I just need to let you all know that I am scared a lot. I don’t  know how I am getting it done, but I am taking great care of Mariah and would you all please keep praying for both of us, because that is where I draw my strength.

For those of you who have had enough of “what’s on Clay’s mind”, Dad visited last week and took some great pics and videos and will have those posted in the coming days, so I am gonna sit back and let him cover me this go-around and let you all see for yourselves Mariah’s progress and reemerging strength.

Love and Light,

Clay

    Greetings blog-fans.  This has been an active week in Mariah’s re-emergence process.  Whereas therapy-packed days previously led Mariah back to her bed to spend hours sleeping or otherwise staying off of her feet and off her butt, she has hit the gym off-campus every day this week in the evening after a full day of physical, occupational, and speech therapy’s.  Her workout includes a minimum of thirty minutes cycling followed by weight-resistance training and therapy-related exercise.  Not to mention she has attended several other appointments as well, such as dental work, opthomolgy exams, and doctor visits.  Actually Mariah’s attendance to appointments is apparently singularly unique, I found out yesterday morning.  After a late Thursday night, I dragged myself out of bed at 7 am to feed Mariah and myself this week’s breakfast usual of oatmeal and fresh fruit, and then off to our first appearance at morning formation with the rest of Mariah’s Able Troop to which she was recently assigned while here at Walter Reed.  A stern Major addressed the Able Troop and apparently reiterated the importance of each soldier’s attendance to his or her appointments because, and I quote, “Once again, the Able Troop is leading in no-shows”  This of course registered in my own delinquent mind as hmmm…next time you miss formation and the sergeant calls you, just gently turn his attention back to the rest of the troops who are probably playing Nintendo Wii in their rooms instead of going to physical therapy…(ahh it feels good to be on the right side of the mean average!)

The most exciting piece of news from this week is that Mariah is now putting in afternoon hours at the AFIP (Armed Forces Institute of Pathology) about two hundred yards up from the Mologne House on campus.  This is pretty much a dream job for Mariah, and after her first two afternoons doing gross pathology work she has come out beaming and totally psyched for the next visit.  I can’t give a detailed account because I haven’t asked her a lot of questions about it, but she is thrilled and seems very much newly inspired.  It shows, both in her smile, and in her dedication.   She is really putting in that “one extra” in her sessions, and rather than wait for me to come up with activities in free time, she is tossing out suggestions.  This morning she reminded me, “Hey let’s go to that Pompeii exhibit at the National Gallery of Art”  (I was of course surfing the net, at the time).   So we went to the museums today, took in the Italian masterpieces and perused the exhibits at the Native American museum and finished off the day back at Mologne watching, “Thank You for Smoking” on our movie screen.  We are doing great and hope that YOU are as well.

Love and Light, 
Clay and “Bunny”