Wednesday, March 23, 2016

Through Darkness to Light

NOTE: This is the second blog post catalyzed by a weekend (March 18-20) at the Commonweal Retreat Center as part of a Bay Area Young Survivor retreat. There may be more.

Just over a week ago, I went indoor rock climbing with my husband, daughter and cousin. Earlier in the year I had articulated a 2016 goal of climbing a V1 - think REALLY easy but harder than a V0 - bouldering problem. My daughter took to rock climbing several years ago but turned competitive right around the time I was having surgeries to remove and rebuild my breasts. Her heart’s desire was to have the whole family share her enjoyment of climbing and, for the last couple of years, I have been physically unable to do so.

So I set a goal, as I am wont to do when I need a bit of motivation. The short version of the story (that I’ll maybe blog about one day) is that I not only successfully topped out on a V1, I managed to scare the heck out of myself on the wall a couple of times and really enjoy the process.

Anyway, I walked away from that day with my husband’s words in my head, “It was so fun to watch you scare the $hit out of yourself and then try it again.”

It was fun for me too and I made a quiet vow to remember that a certain type of fear is good. And acknowledging that fear and moving forward, is even more exciting.

So, back to the retreat.

On Friday morning, as we were introducing ourselves to each other, one of the staff members mentioned, “This weekend is the Equinox, a time where we move from darkness into light.” The statement became a theme for the weekend and when I awoke the next morning at 5am, I realized just how dark it could be at the edge of the Pacific Ocean.

I am typically up around 5am. I enjoy the quiet and I enjoy exercising in the dark. Since I was in new and unfamiliar surroundings, I assumed I would walk from Pacific House down the dirt road to the main road turn off. I knew it was scarcely a mile, if that but figured it would be more about getting out an exploring in the dark and less about actual exercise.

I awoke shortly after 5am, dressed in comfy clothes, topped with a warm jacket and a beanie. I quietly made my way down the creaky stairs, topped my travel mug with leftover, slightly warm coffee and headed out onto the front porch of Pacific House.

Then I promptly leaned back in the house and turned on the porch light.

The trumpet vines were in full smell bloom and the ocean waves were audible as I placed my journal on the edge of the stairs, I felt grateful to experience the sight, the scent and the sounds pre-dawn. I started down the driveway and stopped barely 50 feet from where I started.

“Damn. It’s DARK,” I thought as I walked back to the front porch. And then, as I considered sitting on the step, I remembered that I was here to stretch myself.

I set out again. On my second attempt, I distanced myself approximately 100 feet from the porch before I turned around again. I set my mug on the front steps and walked over to the shadow of a large tree where I began stretching in my wanna-be-a-yogi fashion. The ocean pounded the coast and I longed for the first indications of light so I could embark on my journey.

Whether impatience or bravery was the catalyst, I’ll likely never know but shortly before 6am, I picked up my coffee mug from the front porch and walked purposefully down the road. There was a bit of moonlight as I escaped the shadows of the enormous hedges and the dirt road appeared to glow a bit more than the poison oak infested greenery. But still it was dark. Very, very dark.

The evening before, the moon was big. In the morning it was gone.

I heard an owl and while the “Hoo, Hoo” startled me, I also found being alone and slightly on edge a bit invigorating in the context of my intentional adventure.

I pressed on and arrived at an open area with cars parked in neat rows. There was the sensation of openness which simultaneously felt less constricting and more exposed.

I continued on, feeling the ground beneath me, more attuned to the noises in the brush. A rustle and run. I imagined both bobcats and bunnies but pressed on.  More aware and less afraid. And still walking blindly toward a destination I had seen only once the day before in the daylight. My challenge. The destination was not my goal, ultimately it was the journey.

I knew poison oak lurked on the sides of the road. I heard more rustles and convinced myself they were friendly animals, more frightened of me than I of them. I walked quickly but consciously.
And then I arrived at the gate.

My destination - the flashless photo of the sign

I took a flashless photo when I arrived at the Commonweal sign, as a reminder of the adventure I’d articulated, embarked upon and completed. And then I turned around and walked back. A morning marine layer prevented much of the morning light so the return walk remained nearly as dark as the cautious trek out. But I’d walked that path before, I was less afraid, more confident.

The entire escapade took fewer than 30 minutes. I arrived back at the porch with some semblance of light, owls had stopped calling and the chirpy birds were awake.

And back again

Although I selected a destination as a goal, the journey was the real goal. And I had moved not simply from darkness into light but actively moved myself THROUGH the darkness, beyond the fear and into the light.

And I could do it again. 

Monday, March 21, 2016

Balance is a verb.

NOTE: The next several blog posts have all been catalyzed by a weekend (March 18-20) at the Commonweal Retreat Center as part of a Bay Area Young Survivor retreat.

Balance is a verb.

On day one of my Commonweal retreat, we were introduced to a bowl of beads and some hemp string. We were encouraged to create and immediately I chose to create my goal for the weekend: Finding Balance. I placed a silver charm in the center of the string. I placed a bead representing Chaos to the left and a bead representing Peace to the right. Both beads were green but Chaos was oval and swirled whereas Peace was round and clear. I knotted each bead so that no bead was touching another and so that both beads were equidistant from the silver charm.

The silver charm represented me.

Chaos is important to me because that is where I feel the most learning taking place. Chaos is where I feel the most emotional and spiritual growth.

But I cannot thrive in a constant state of Chaos and require moments of Peace to feel grounded. To just Be. Ideally I would like to find the balance between these distinctly different states. A weekend at the edge of the Pacific Ocean, nestled near forest canopy and always within earshot of the sounds of the crashing waves seemed like an appropriate place to get closer to finding balance.

I shared my necklace/totem with my fellow participants so they perhaps could help me in my quest – offering support but also ideas for discovering this elusive balance.

And then I was told something that changed everything.

“Balance is a verb. Not a static noun.”

I was standing outside the main building at Commonweal, about to enter the library for a movement activity. I heard the words. I felt the words. I consumed the words. I internalized the words.

Balance is a DOING, not a state of being. Balance is a DOING, not something to find.

Instantly I felt whole and decidedly unbroken. Instantly I felt whole and not lost. Instantly I knew that the act of being emotionally and spiritually imbalanced at times was not a failure but a natural process.

Just as our physical centers of gravity change rapidly with growth, our emotional and spiritual centers of gravity shift with life’s challenges and gifts. And whether I am swaying with those moments like a tree sways through a storm or whether I’m head and body forward surfing through life’s adventures, I am balancing.

Balance is an activity not a destination. Because balance is a verb, not a static noun.

Saturday, March 12, 2016

PART II: Teen Sugar Highs

And BOOM. There it is. Definitive diagnosis of Fructose Malabsorption (formerly referred to as Dietary Fructose Intolerance or DFI).

Ri had his 44g dose of fructose at 9:07am and we were sent out into the waiting room to spend the next thirty minutes while the sugary substance worked its way through his system. When the doc returned with the ‘blower’ Ri was surprised to see 0ppm as the result.

“That’s weird,” he said a bit mystified. “I can definitely feel the bubbles.”

We were reminded that, if his body produced methane in response to the fructose as opposed to hydrogen, this test would unfortunately provide false negative results.

And so we went back to waiting. At 10:08am, Ri said, “She’s late. I was supposed to have tested again already.”  Unbeknownst to me, he’d put an alarm on his watch and was following the testing protocol to the letter. As I approached the check-in desk to ask about the timing, a sick toddler began to scream and an infant let loose in sympathy.

“Excuse me, we need to check for hydrogen and we’re a little overdue,“ I said to the admin. “But, I can see you’ve got a lot going on.”

“Hmm. That’s unusual, she’s usually very punctual,” she replied without making eye contact. “I’m sure she’ll be out soon.”

“Perhaps you could call her?” I suggested knowing immediately that we were triaged to the back of the proverbial bus.

Ten minutes later, our breath kit arrived with apologies for the tardiness.

As Ri physically prepared to blow into the machine, I mentally prepared for another hour and 45 minutes of futile waiting and bad magazine reading.

He evacuated his lungs and then continued to watch the monitor. “Wow,” was all he said.

I quickly craned my neck to see what he was seeing: 48, 49, 50, 51… A test of 20ppm would have indicated a diagnosis of fructose malabsorption. In classic Ri form, he was chasing those bonus points.

The breathalyzer stopped at 55.

At that exact moment my emotions were a combination of dread and relief. The “Oh $hit” and “At least now we know.”

Ri was nonplussed and not one bit surprised. “I knew it was that Mom because when you stopped buying apples, everything got better.” And, hungry after his fast, he didn't miss a 13-year old boy beat, “Is Pho Ga low fructose? Can we go to lunch now?”

At some level my emotions are still a combination of dread for THIS diagnosis and relief for A diagnosis. Ultimately, at least now we know and, as the 80s icon GI Joe always reminded us, “Knowing is half the battle.”

Monday, March 7, 2016

Teen Sugar Highs + Hydrogen Breaths

Sitting in the waiting room of pediatric gastroenterology, the double stroller next to me contains two young children, both with hacking, productive coughs. My son has just ingested 44 grams fructose and we’ll be here for the next three hours or until he “breathes a 20” on the handheld hydrogen breath test, whichever comes first.

Our pediatric GI relationships began shortly after his birth when he was diagnosed with gastroesophageal reflux disease, or GERD, and began losing weight at the wee age of four months. Major surgery was recommended and we deferred hoping to find a less invasive solution. Oddly enough, we found chiropractic care. Physical adjustment, combined with Prevacid, kept his ruminations below 30x day and took him off the short list for a fundoplication. He began to thrive.

Reflux has never vanished from our lives but everything has been manageable, until recently. At 13, my son is 5’6”. He stands a full 2 ½ inches over me, yet cannot seem to break the plane on 100 pounds. And a couple of months ago, he started losing weight.

As a mother, I have extensive on the job training and a high comfort level with acute illness, first aid, sugar-induced hyperactivity, night terrors, friend problems and homework frustration. Another “failure to thrive” diagnosis, however, prompts only dread.

At the most basic level, I just want to fix things. I have gut issues, food allergies and intolerances and I know just how frustrating it can be to have persistent tummy troubles. The teenage years are fraught with so many other speed bumps, concern about what you can and cannot digest effectively enough to maintain your body weight shouldn’t have to be part of the process.

So, after a two-week elimination diet, a course of probiotics and a trial of high fiber supplementation, Dr. A has suggested we run a hydrogen breath test. We are testing for a fructose malabsorption problem. So after swallowing the equivalent of a bag of Skittles dissolved in water, we’ll hang out in the waiting room for a couple of hours. Every thirty minutes, the medical assistant will bring the breath test to us and Ri will blow into it. His baseline parts per million of fructose was zero so a positive test is a reading of 20ppm at any time.

Unfortunately this test only measures hydrogen production and approximately 35% of the population actually produces methane rather than hydrogen with a malabsorption issue. In other words, we could leave here with no answers.

And then there is the perspective of the past few weeks and past few years: things could always be worse. This particular issue is disconcerting, frustrating and a definite annoyance but Ri is bright, happy and generally healthy. 

So, after a 12 hour fast, and a couple of hours hanging out with sick, and vocally unhappy children, at least our next steps are clear - he has already chosen his post-sugar high lunch spot.  

NOTE: This post approved for public consumption by the 13-year old.