Walk No More

About a month ago, I found this photo of Stross as it laid on a table covered by layers of photos at his high school. One of his former teachers, who had a penchant for capturing candid moments, took it in 2006. The moment it captured happened about one year before the teacher would learn he would die from a progressive degenerative neurological disease and about one year from us learning that the sight of Stross walking would exist only as a memory – or as an image on photo paper such as this one.

In late 2007, when a doctor advised Mark and me that it was no longer wise for Stross to walk, I cried. The doctor had delivered the news gently, and while he rightly understood we would not be surprised, he was also rightly aware that its significance was profound for us. Stross would no longer walk.

There was no need to clarify what the doctor had just shared. In fact, we had held nearly this same conversation a few times before, but on those occasions it seemed that Stross, or his body rather, had been able to keep going. Well, maybe Mark and I had wanted his body to keep going, and because we liked seeing Stross walk, Stross willed his body to do it for us.

But on this day we understood – as the doctor hoped we would – that this sight we loved to see could not happen anymore. We could no longer ask Stross to do what his body could not withstand. He was at a point of diminishing returns. If we insisted he keep trying to walk, he would be using all his physical, mental and emotional resources to break his body down rather than build it up.

The methodical four-point gait Stross learned in physical therapy made his muscles and joints do things they had arrived ill prepared to do. But it had been wonderous. Muscles and tendons capable of firing signals took over for ones that could not; malformed joints imitated well-formed ones; and underdeveloped bones bore his weight with the aid of braces capable of bearing the load. We had pushed past practical. Now, walking for Stross, while still possible, was no longer safe.

Stross would not walk again.

On the day Stross was born, we had been told he would never walk. Despite that, he had found a way to pull himself through space in an upright position. He had accomplished it with the aid of bracing devices and ambulation supports: first with a parapodium to learn what it felt like to bear weight and then with hip-knee-ankle orthotics and a reverse walker. The walker followed behind a three-year-old Stross as he pulled it or leaned against it when he tired of moving.

Once Stross began school, the forearm crutches were a challenge posed by a daring physical therapist. He believed they would boost Stross’ self-image. Mark and I had never worried about Stross’ sense of self, as his continuously smiley demeanor never left. Yet, the crutches elevated our sense of what Stross could achieve. Plus, they buoyed our spirits. The sight of him placing his bright blue crutches in a four-point gait always brought smiles – not just to Mark and me, but to anyone who happened to cross his path. Stross was our determined Mini-Us. He stood as tall as possible with those crutches, rhythmically bobbing his head in resolute willpower with each step.

Until the day of the news.

We understood from that day forward that Stross’ only means of ambulation would be a wheelchair. The pain of passing that milestone had taken my breath away and, along with it, any words to explain why I was crying. Eventually, I got this out: “I’m sorry I missed it.”

I had missed seeing the last time Stross would walk a hallway, my last opportunity to watch his awkward but grace-filled gait. Witnessing it helped me believe that impossible things were possible, but that testimony would not occur again. I had missed it.

I cried. I grieved.

Stross smiled. He was thrilled. He wanted to celebrate. There would be no more coaxing muscles into movements that resembled walking. No more physical therapy sessions designed to keep him bearing his weight as much as possible. We had always known those things would end. We had simply not known when.

We had missed it.

Stross: “I can go fast and do wheelies.”

Doctor: “Will you miss using your crutches, Stross?”

Stross: “No, you can throw them away.” (a smile)

Thrown away. I had thrown away opportunities to cherish things I now grieved. Today I can only close my eyes and try to remember. This photo helps some.

I saw a link on my Facebook wall tonight for a story titled: “Parents’ Bucket List for Dying Baby Girl Goes Viral.” It let me know that somewhere in Houston, a mom and dad are creating and celebrating milestones like crazy because their infant daughter has an incurable genetic disorder that will limit her life to 18 months.

They aren’t throwing away opportunities. They would give anything to have the life that I still – sometimes – grieve.

The mom and dad are keeping a blog written in their daughter Avery’s voice. In it, she describes her first kiss, courtesy of a 19-month-old boy named Cooper. The fact Avery will never walk – not even with braces and a walker or crutches – is not lost on me. Her parents have and will miss so many things that have been mine.

Painful. Poignant. Now I remember. This is the stuff of life.

Liz and Whitney: Acquainted with sorrow, familiar with grief

I hold respect for Elizabeth Taylor and an affinity for Whitney Houston that have little to do with celebrity but a lot to do with tenacity.

While driving to an out-of-town meeting days after Taylor’s death, iconic images of the violet-eyed legend passed through my memory as the car radio began playing the haunting a capella opening to I Will Always Love You. The lyrics accentuated the sultry earlier voice of Houston, focusing my thoughts on the striking and sensuous early life of Taylor, whose death I had yet to process.



One represented a voice no longer able to be heard even though the one who gave it life still lives. The other personified an iconic face that lived on even after the one to whom the face belonged no longer resembled its visage.

Unparalleled talented. Incomparable beauty. Inimitable lives.

Legends – one living and one no-longer-alive.

I regard both women as more than a metaphor for what was but cannot be again.

They are examples of life continuing beyond tragedy whether the deep heartache came circumstantially or was self-inflicted.

For Taylor the heartaches were borne from life-altering injury, addiction, divorce, widowhood, debilitating illness and personal despair.

For Houston the heartaches are tied to addiction, divorce, illness and personal demons that haunt a complicated future.

I find both women inspirational and relate to both on a level I don’t fully comprehend. My best attempts to understand lead me to my own past, yet I can list nothing comparable to what these women have accomplished, wrestled with or conquered – unless I get to count struggling with grief over a life that felt promising once upon a time but no longer seems recognizable some days.

It is a but-of-course sort of grief that says, “Your life was beautiful back then, but you weren’t fully aware of how beautiful it was, were you?”

But it doesn’t matter, I guess, for who truly does realize life as they live it? Thorton Wilder offered that poets and saints perhaps do – at least some. But I would venture that survivors surpass even poets and saints, for survivors have a perspective that reaches from depths to heights. Surely that makes the milestones in between noteworthy whether measured in moments, minutes or minutiae. Surely survivors realize life more fully as they live it.

Survivors.

They understand that living means embracing a new way of being – a new standard for beautiful. And the beauty of survival is breathtaking. The tenacity of time, astonishing.

If I get to claim any similarity to Elizabeth Taylor or Whitney Houston, perhaps it lies in an understanding that life continues to be wonderful despite it all – whatever “all” might be. Life insists on moving past what I recognized as my life’s previous dreams, toward new dreams that are capable of carrying me toward something more.

Elizabeth Taylor kept making life something more. She showed what it meant to champion the beauty of others who were fighting to survive through her establishment of AMFAR, the American Foundation for AIDS Research. Whitney Houston keeps putting herself out there, giving something more. She continues to influence beauty in others: Beyonce’, Mary J. Blige, Rihanna, Brandy, Alicia Keys, Jennifer Hudson and Lady Gaga. Each has shared they look to her as inspiration for what’s possible.

Perhaps I am on the verge of discovering my something more. My what’s possible.

As Taylor once said: "I don't entirely approve of some of the things I have done, or am, or have been. But I'm me. God knows, I'm me."

She was tenacious, authentic and genuine. And she never stopped fully being who she was. The same is true for Houston. She never pretends to be anything more or less than who she is. That is enough.

I take comfort in that. I admire that.

Remembering Elizabeth Taylor and listening to Whitney Houston that day helped me celebrate what had been – what I knew as my personal past. In doing so I was reminded to cherish what continues to be. But I also know I need to keep finding my way forward. To tenaciously determine what is possible, because life keeps marching on.

Being familiar with sorrow and acquainted with grief puts me in good company.

Grief lingers, but it is love that lives on.

To that I say: Sing it, sister.



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Anxiety: Why Fight It?

My day. Do I dare describe it for you? Do I let you in on what most would hold as a personal secret?

Yes. I am Joy. It’s what I do.

I’ll need to begin by describing my morning. It took me a while to recognize the phenomena and call it what it was, but here’s what happened this morning: I found myself fighting anxiety that threatened to present itself as a full-blown panic attack. I had not had a panic attack in so long – probably 10 years – that it took me most of the morning to call on those emotional memory muscles and shift into coping mode.

My panic attacks present as a feeling of insatiable restlessness, then a near breathlessness that only lessens if I keep moving. Because constant movement is impossible, I attempt to stop – sit, stand, something – to prevent myself from getting lightheaded; but then, no longer moving, I start to feel achiness throughout my body. Trapped, restless energy, I guess – an uncomfortable feeling makes me want to keep moving again. Sometime during this heightened state of flight, my sensibilities kick in, and I recognize my anxiety. That’s what finally happened this morning.

Had I let my attack mature, I would have been bent over trying to catch my breath and crying large, tension-releasing tears. As it was, I found release in brief, tiny tears – tears of disappointment and a sense of failure. I hate anxiety. It means I’m not acknowledging something, and I take pride in my self-awareness.

It also means I’m not coping as well as I thought, and I take pride in how I navigate (or seem to) the uncommon demands of our family’s existence too. Today’s near anxiety attack must mean I’m not coping well. Obviously. Therefore, the next part of today was spent attempting to answer this question: What is bothering me?

I regard my anxiety as instructive. Therefore, I cannot keep moving forward until I know the answer, so imagine my helpless frustration at not knowing.

Back in my previous panic attack era, my main causes of anxiety were obvious: Stross, insurance, money. My panic attack seasons were also obvious: the first of the year (when insurance deductibles begin) and just before the start of school (when I had to prepare for another year of issues related to Stross’ special education needs).

I learned to cope by remembering to breathe, intentionally exercising and allowing myself to grieve things I believed I had lost. And I gave myself permission to do all of the above as often as necessary.

But none of my traditional causes seem to be the culprit right now, and my coping techniques are – evidently – not working. Therefore, I spent a great deal of this afternoon and evening musing about my life, wondering what to make of the sensation I have about being trapped in a paper bag that I want to punch through from the inside.

As I learned 10 years ago, this isn’t the kind of anxiety that can be prayed away, for casting of cares is not possible. My cares live within my home, personified in human beings that I love deeply. As a decade ago, the best I can hope for - should I attempt to cast cares - is to let go of control to the point of not caring. But how can I do that with loved ones?

Music provided a bit of insight this afternoon when I put on some GLEE to help me with my breathing. As Lea Michelle began singing “What I Did for Love,” I closed my eyes and got lost in the lyrics. With tears spilling from closed eyelids, I attempted to kiss today goodbye and point myself toward some type of tomorrow. I just wish I knew which direction to point or, as with that annoying paper bag, which direction to punch my way out.

I’m confident I’ll figure it out. The suffering will become perseverance, and persevering will further shape my character. My character knows the nature of hope. I’ve been there. I’ve done that. I know that hope does not disappoint.

I am not hopeless. Just caught inside a metaphorical paper bag. I will eventually punch my way out. In the meantime, I’ll breathe, exercise, grieve things I feel I’ve lost … and, now, I think I'll add listening to wonderful music. That worked today. So maybe I’ll wake up tomorrow with a more specific idea of what’s bothering me.

Maybe.

Regarding Car Conversations

Car conversations. I'd been thinking about this topic for about a day when my friend Tammy Mortenson Sharp called just to touch base. Everytime we talk (and we really should find the time to do it more), we share memories, thoughts and feelings on a wide variety of topics. The conversations alway include updates on our children, bathed in an awareness that we have both become acquainted with rare brands of grief: hers for a child lost too early to cancer; mine for dreams that fall outside the reality of what my life is now.

Last night Tammy shared a conversation that she and her husband had with their daughter Kelly one day while riding in the car. They were coming home from the doctor's appointment where they had learned that Kelly's cancer had returned. Tammy said Kelly intuitively knew she'd not survive her cancer, and the conversation quickly turned to all the things she'd never get to experience: a real boyfriend, marriage, children, sex.

I shared what I'd been thinking about car conversations with Tammy, knowing that she'd connect with the layers of emotion present in those sacred car rides - the kind that carry you from oblivious to knowing.

You travel to medical tests and then return to face the new reality the tests revealed. Or, you ride in silence, wrestling with loud, private thoughts that won't let you revisit old ways. Or, you sit passively, welcoming God's active involvement in life - if only.

I offer this to you - to all who've known the complexity of car conversation with divine implications. Here I briefly reflect on a few car conversation memories of my own with a promise to share those still too raw to describe.

Warning: Sorry about the audio on this one. I wasn't aware of how much the car windshield would magnify the sound. Be ready to adjust your volume.



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