Mariah’s Reemergence

This week transcended description.

Concentrating in Physical Therapy (McGuire VAMC, 8/25/08)

Mariah’s voice reemerged, she coined the word “Mariahcle”, we toured Byrd Park in the rain from the wheelchair van, and her parents, brother, and medical team met with her for an hour as she explained what’s not working for her.

She’s having trouble sleeping, and she’s having nightmares. She longs to go home to her place with roommates Suzanna and Sean, and her dog Chai. Sometimes the people working with her, including me, hurt her, especially around a tender right shoulder and around the feeding tube in her tummy. And many of the people working with her, including me again <sigh>, often have unpleasant breath.

The unbridled euphoria of Tuesday inevitably gave way to some blues and discouragement during the rest of the week. But Mariah, with courage and lots of encouragement pushed through her funk to keep working her amazing body. Her sense of humor is still intact. On Friday morning when asked how she had slept, she pressed her palms together, laid her head against them, and deadpanned, “Like this.”

Here are scenes from a week to remember.

Workout On a New Machine – Arms and Legs in Synch
(McGuire VAMC, 8/25/08)

Back On the Lokomat
(McGuire VAMC, 8/29/08)

On a personal note, after witnessing the stunning miracle of her voice, I wandered in a daze toward the canteen for some java but unexpectedly headed for the chapel. There, sitting alone in a pew with my head on the back of the seat in front of me, I emptied by heart of despair and gratitude in great sobs. Since June 17, my mantra has been, “Please God, bless Mariah.” Hundreds of times I summoned the power of love to save her, but grieving was impossible while struggling for hope. Now with hope fulfilled, the dam burst. It was finally safe to feel the excruciating pain of my daughter’s horrible loss, because at long last I could thank God.

– Mark

A little before midnight last night, Mariah sat up bed and started talking. Not the whispered syllables I’ve been reporting, but real talking. In a loud, strong voice she said complete sentences like, “Where’s Robin [one of her nurses]? I want to go outside.” She apparently talked non-stop all night, and I can report that it’s still going on.

When Mariah was told we’re all witnesses to a real miracle, she said, “This is a real Mariah-cle”, making her first really awesome joke in over two months.

I’ll have more to say soon, but for now, here’s Mariah in her own voice when I saw her about 6:45 this morning:

– Mark

If you’ve been keeping up, you know that Mariah is enjoying considerable progress with her physical reemergence, but her spirit is in immense pain. So great is her emotional discomfort that she’s sometimes unable to participate in her therapy sessions, and her despair is such that the hospital staff is keeping a very close eye on her at all times, for which I am profoundly grateful.

I’m one of Mariah’s “non-medical attendants” (NMA) on weekdays, but I returned to Richmond on Saturday instead of Monday this week. As more of a visitor than the NMA yesterday and today, I’ve had an opportunity to get a different perspective on the situation.

For one thing, from what I’m reading, Mariah’s attention span may be shortened, and she’s more likely to respond positively to a changing variety of stimuli of short duration. Visitors get to do that. They pop in with an array of fresh ideas, words, smiles, and encouragement. Mariah rewards energy like that with frequent smiles and laughter – gifts for the guest. As a weekday NMA, such lavish compensation doesn’t come so easily.

For another, I’ve explored some of Richmond’s attractions with an eye toward future field trips with Mariah. Nearby Byrd Park holds promise. Scenic lakes, paddle boats, an amazing duck pond (see below), fitness trails, a rustic outdoor amphitheater, and much more await. I’ve been trained on use of the hospital’s wheelchair van, so when the docs give her the green light, we’ve got places to go and things to do!

In terms of progress, Mariah’s strength and fine motor skills have increased noticeably in the last week. Yesterday she spent 25 minutes exercising on the bicycle machine. She sits up with excellent posture and holds her head and shoulders straight. Her head movement is much smoother, especially side to side, and the seemingly-startled expression she sometimes wore is largely absent. She scratches her head and rubs her face with greater acuity. I haven’t heard much speech, but I think she may prefer silence.

All in all, I believe Mariah is healing well. I think our job is to keep her safe and to encourage her while she grapples with amazing challenges.

– Mark

Today was a very painful day.

I allowed myself to really feel some of Mariah’s suffering to the best of my ability and admit that a few times I almost questioned whether or not I was fit to handle the experience. Although Mariah has grown to be able to communicate somewhat verbally and has gained lots of strength and technical ability and dexterity, she has asked me several times to take away her pain.

She is struggling to accept her helplessness and her dependency and mostly she has spoken to me of being extremely sad. Today she said, “Please wake me up”. When I asked her what part of her was asleep she responded, “All of me”. It is as if she is in a nightmare or desperately hoping that she is.

I would ask that everyone pray extra heavy upon reading this blog for Mariah to gain some acceptance. Pray for acceptance and willingness for Mariah, if that is God’s will. I sure hope it’s His will, for I believe strongly she could use both.

I am happy to report that there is laughter and smiles amidst this misery. They occur a bit less frequently these days, but it helps remind me that miracles are alive all around us every day. Some days we just have to search harder…

Love and Light,
Clay

[Post from Clay, Mariah’s brother who is staying with her this week.]

Today was a significant improvement from a very difficult and depressed Monday for Mariah. I arrived at her bedside Monday afternoon and discovered Mariah had refused all her therapies while struggling to deal with some of her lowest moods. She managed to fight back and get up for her last therapy session with J.T. She succeeded in completing the entire session, which allowed me to see some fantastic improvement in her physical condition and abilities over the past two weeks.

I was thrilled to hear Mariah put some vocals into her communication, and to hear her express her feelings without necessarily needing so much prompting or guessing from us. Over the evening and into the morning Mariah had some more rough spells as she continued to undergo excruciating low moods, medicine changes, and restless sleep.

However, Tuesday she managed to participate in all her therapies, and she even topped off the evening by sticking her right forefinger clear through my piece of spice cake and then laughed as I informed her that she owes me a piece of cake.

Through the pains of depression and discouragement, Mariah is keeping a level head, using all forms of communication at her disposal, and expressing her moods to staff and family. I am curious as to many of Mariah’s thoughts during this phase of her recovery.

We spent a lot of time outdoors the last 30 hours and when asked each time “Do you want words or silence?”, she said out loud “silence”. We sat together and experienced the sunshine, the shade, and finally the grass. On our last outdoor journey she convinced me to help her out of the wheelchair so we could actually lay in the grass together. She grasped the grass in her hands and then rolled on to her side and we listened to my friend Grant Haze’s music, sharing my MP3 player headphones for a couple of songs before going back upstairs for K.T.

These days are rich, fascinating, terrifying, and completely out of our control. Sometimes I sit and just feel helpless with Mariah for a few minutes. This usually stills me. Sometimes I cry, sometimes I am awkward, sometimes I feel just fine. I don’t know. It is what it is. I’m just happy to be here. It is kind of a strange and often uncomfortable joy to be able to experience just a little of Mariah’s suffering with her.

Keep praying for her courage, her hope, and her health.

Thank you, Clay

The easy stuff – healing one’s brain – is well underway. Mariah’s a professional in physical development, and she’s orchestrating her reemergence as only a brilliant and determined expert can.

The hard stuff – healing one’s psyche and spirit – isn’t as straightforward. There’s no machine, exercise, or protocol that picks up the pieces of a shattered youthful dream and restores them to wholeness and vitality.

Mariah is a deeply private woman accustomed to exercising considerable power over her self. Not only was she suddenly betrayed by her amazing body, robbed of speech, mobility, and strength, and confronted by a multitude of initially life-threatening and ultimately life-altering neurological and muscular insults. But she was also thrust into a spotlight that I imagine she despises.

Mariah’s caregivers and well-wishers are certainly motivated by love, and she needs every one of us on her side. Nevertheless, being invaded by needles, tubes, and chemicals, by concern, sympathy and interest, and certainly by fear and perhaps by doubts as well, Mariah is on utterly unfamiliar ground. In spite of her gifts and achievements, she is unskilled at being exposed, vulnerable, and dependent on others. (I imagine she puts up with this blog because it serves people she cares about.)

In eight weeks she has progressed from a state of partial paralysis to an early version of sitting, eating, talking, rolling around in the bed and pulling the covers up and pushing them off again. And from a state of cheerful compliance to occasionally curling up and covering her head, keeping her eyes shut for hours at a time, and refusing to participate in therapy. Mariah’s reemergence is gathering steam.

We had a good cry this week, reading Jill Bolte Taylor’s incredible My Stroke of Insight and feeling sorry first for the author, then for each other, and finally for ourselves.

Please, please, please keep holding Mariah in the light of your love. It means everything.

– Mark

We never believed the silence would be forever. And Mariah’s deep-throated and robust whispers are rewarding our faith. Talking, as we know it, is still a ways off. But where just days ago she couldn’t make a sound when trying, Mariah’s now offering one and two-word responses to questions and cues, and her words are perfectly understandable over 90% of the time. It’s a struggle for her, and each syllable is hard-won. But it’s no less a victory for her spirit.

She has now achieved all of her first month’s official therapy team’s goals, and done so with two days to spare.

Unofficially, when she arrived at McGuire on 7/15, I prayed – begged is more accurate – for the reemergence of the “Big Three” for independence: walking, talking, and eating. It didn’t occur to me to include sitting up, getting rid of the catheter and all the IVs, relaxing her hands from a claw-like clench, and controlling an electric wheelchair. Of all these, walking is still her biggest challenge. But of all the others, and more, she has journeyed far from the awful darkness. I’ve never been so proud of Mariah.

Here are some new workout pics and videos. (Click to enlarge.)

– Mark

While Mariah and her dad were horsing around making lots of good, throaty laughing noise yesterday (see below for shocking details), she appeared to mouth some words. She nodded when asked if she were trying to tell me something, so I leaned in closer to get a better look. Imagine my surprise when she clearly whispered “I love you.” “I love you, too,” I replied. “Those are the sweetest sounds I’ve heard in a long time.”

(In fact in that moment I recalled her birth when she wouldn’t make a sound or draw a breath for two or three terrifyingly long minutes, turning blue instead. When at last a cry burst forth, I promised to never ever be impatient with the sound of her voice.)

Later that evening after I departed for the weekend and her mom arrived, I called to see how Mariah was doing. Excited, her mom reported that Mariah was talking, and that the nurses were flabbergasted because she was telling everyone she loved them.

Interesting condition that allows one to say only “I love you.” But later that night while watching a DVD about ballet, Mariah said in a relatively full voice, “Go get the girl.”

Now we shall see what we shall see. 🙂

Regarding the aforementioned ruckus, it happened like this. Mariah was in the gym working on the arm movement machine, trying to set a new endurance record of 15 minutes. Four minutes from the finish line, she dropped her hands in her lap and refused to continue. I offered her a shiny new dime if she’d finish. Grinning, she remained adamant. No dice. JT upped the ante to a quarter. Still no luck. Another therapist reached into her desk and pulled out… a Twinkie! Mariah immediately grabbed the handles and started whirling them around.

I told her the Twinkie would get us both in big trouble with Marsha, the speech therapist overseeing development of her swallow. Mariah agreed, so after we returned to the polytrauma unit, we decided to sit as far from the nurses’ station as possible to avoid detection.

At one end of the corridor is a big window that looks out over a courtyard featuring – what else at a VA hospital – a huge American flag. We pretended to be enjoying the view, but we secretly made ready for Mariah to tear into the contraband. (Click to enlarge.)

In the end Mariah had the last laugh. She didn’t want the Twinkie at all! She had just been playing around with all of us.

What a joker.

– Mark

Mariah tried her hand at an electric wheelchair this morning. Here her physical and occupational therapists make a minor adjustment to the chair before she took it out for a spin. (Click to enlarge.)

Tweaking the Power Wheelchair (McGuire VAMC, 8/7/08)

Once Mariah took over, there was no stopping her.

Can her NASCAR debut be far behind?

It made me kind of sad to watch her driving off into the sunset in her shiny new yellow convertible.

Did you notice the cameo of JT in that video? He’s her kinesiology therapist. At the end of the day, Mariah sat perfectly erect and unaided for over four minutes with him. Before banging out a few sets of sit ups.

Greeting a Therapy Dog (McGuire VAMC, 8/7/08)

After lunch, her work with the talking touchscreen computer was interrupted for a visit with Penny, a Golden Doodle therapy dog. (Click to enlarge.) Returning to the difficult work of pointing and touching small icons on the touchscreen, Mariah spelled “dog” and “Clay”. It took several minutes, and she paused to regroup more than once, but she wouldn’t give up. At the very end she was enormously frustrated by her inability to guide her hands to the “y” in “Clay”. Her entire body tensed, and we thought she might finally quit. Suddenly, she lunged forward and touched the screen with her nose, completing the word and exploding with laughter.

She is still absolutely un-freaking-believably amazing.

– Mark

Here’s Mariah making a U-turn between the parallel bars on Wednesday. Alan is helping. (Click to enlarge.)

Making a U-Turn (McGuire, 8/6/08)

Here’s a video of Mariah walking with the Lokomat. The machine is providing about 50% of the support of her weight and guidance of her movement. She’s doing the rest.

Here she is working her arms for over 13 minutes with resistance. Mariah’s doing all the work.

– Mark