Your Every Day Presence that Matters (A Lesson from Camp Greystone)


With coffee in hand, I perched on the end of our kitchen table to enjoy the view out our picture window this morning. Budding leaves colored the landscape with fresh, spring green now that the trees are waking from winter slumber. The beauty of spring calmed me in spite of the fact my mug held one less cup-of-Joe than it used to.

Three weeks ago, I awoke at midnight with severe abdominal pain. When it didn't let up for almost an hour, we headed to the ER. While cat scan results led to an ultrasound (last week) to further diagnose spots on my liver and spleen, the results did not explain the severe episode of pain.

I see a GI doctor tomorrow and have made several dietary changes (a little less coffee being one of them). Since neither my liver or spleen are enlarged, the chances of something extreme (like cancer) remain small. But between the unexpected pain and waiting for results to come in, I lost steam, went under, and stayed there a while.



I spent time with my parents this weekend since I accompanied their Palm Sunday church choir presentation. As we lingered over dinner Saturday evening, I said, "The reality is, for whatever reason, I haven't found normal Susan ever since the ER visit."

While I understand it on some level, I don't completely get why it's been so hard. Most likely, the pain will point back to mitochondrial disease related issues, which is no big surprise. But while it's typical and been a concern at times, facing intestinal issues on top of everything else is simply tiresome.

Just one-more-thing. And sometimes that one-more-thing tips the bucket over. And when the bucket spills and the mess is no longer contained, it's easy to withdraw, to curl up, and to watch crime TV: 



But I digress.

Safe in my comfort zone, I emailed a few friends, had lunch with another, and kept hearing the words I once forced on my oldest son: Presence Matters. I've shared this story before, but it's been a while, so indulge me if you will.

My boys and I spent two summers at Camp Greystone, a girl's camp in Tuxedo, NC. At night, we bunked in a tiny cabin on the outskirts of camp. During the day, I taught music classes while the boys attended activities of their choosing. Sam became the archery king one year and Nathan had the entire group of girls screaming when he sang and danced at the talent show. 

Sam and his numerous archery awards!

Nathan with his favorite stick and hat!
Not long after we arrived for our second year, however, Nathan started hibernating in our cabin. He loved to read and with a good book in hand, found it easy to withdraw from the crowd. Concerned, I lectured him one night, insisting that his presence mattered at camp; that everyone's presence mattered; that being a part of that camp community was an integral aspect of our summer.

When I arrived at dinner the next day, Nathan had quite the story to share. After lunch, he'd chosen not to return to our cabin, but rather to follow the visiting physician's family to cooking class. The mom was very pregnant while caring for her two year old son and two young daughters, ages 4 and 6. When the class ended, the mom decided to take her crew to the lake and Nathan tagged along. As they approached the water, muddied after days of rain, the two year old took off down the dock and eventually fell off the side and disappeared. 

While the panicked mom ran as fast as her pregnant body would allow, Nathan reached the place where the child fell in first. As he explained, "I saw something in the water and just reached my hand in and pulled." When he lifted it up, he realized he had a fist full of the toddler's hair.  

Where it all took place. Notice the very long dock.

After rescuing the child, Nathan was deemed a hero. The kind that is born from just being at the right place at the right time and going into action. My response? "See! Your presence matters!"

Fast forward eleven years and after accompanying the choir for two services this weekend, a dear woman stopped me before I left. She's known me since I was three. Her hand held my arm as she stated, "Thanks for being here. Your presence matters." 

It's been a long few weeks. And it's been easy to pull away. I'm guilty. But presence matters, yours and mine. There's a young man who is alive today because my son pressed in and resisted the urge to hide away. 

So I write. One more blog. One more story. To be part of His glory. Because His presence matters most. And His death and resurrection made a way for us to emerge from the depths and live life to the full. 

He left his grave clothes behind so we can do the same.

Happy Easter.


Nathan and the child he rescued.

photo credit: colorful coffee composition via photopin (license)
 photo credit: Boom Boom via photopin (license)
2

Chronic Fatigue and the Mad Hatter's World


The sky turned blue this weekend, offering a short respite from unending dismal grey. Since my mother's dog came to visit while my dad recovers from a hip replacement, Lily's big brown eyes beckoned me to sip coffee on my kitchen floor next to her. There we gazed out our picture window, soaking in the spring day, watching birds come and go. 

Only a week after enjoying a winter wonderland, spring played it's hand.  The annual seasonal tug of war has begun and will continue until winter finally caves way to spring. Thankfully, the cold never seems as daunting after the daffodils bloom. And the daffodils are blooming - even in my yard.




While Lily and I enjoyed the warmth of my porch a few times during the day, I never found high gear. I ate poorly, took a long nap, and felt slothful. Unable to put thoughts to words, I slogged through the day, wishing I could lose ten pound while eating leftover Chocolate Peanut Butter Pie and Tagalong Girl Scout Cookies.

If you've ever heard The Spoon Theory, then you know what happened. By weeks end, I was simply out of spoons, cognitively and physically. 

Imagine a week's worth of energy being allotted with spoons. Most people receive 20 or so at the beginning of the week. But those of us with metabolic disorders and chronic fatigue only receive about ten. We live with half the resources to manage the same life issues. 

When my spoons are used up, I tend to feel depressed. It's not that I'm really depressed. It's just that I'm so tired that even feeling happy takes energy I can't find. Or perhaps I'm just bummed that I must wait a few days to receive new spoons and feel like I'm living again.

So indulge me for a moment if you will. While I wait for a new energy outpouring, I feel like remembering what I've accomplished. Because even after getting dressed and heading to my car for church, I had to turn back and rest. Wobbly legs and nausea indicated a need for more sleep.

My husband turned 60 in mid-February and I hosted a small party to celebrate. We ate Moe's and told stories before pulling out the parachute and pinata. I purchased the latter in hopes that his grandchildren would never forget the evening.

Dinner with balloons, table clothes, and candles!

Sam and Courtney and Moe's!!

Don's oldest two son's. Kelly (L) and Donnie (R).

Katie, Elaine, and Keith!

Nikki (Don's daughter!) Penny, Don, and his peanut butter pie. Nikki made five pies for the occasion!

The Parachute!!

The Pinata!! (with Hazel!)

More Pinata fun!!

Posting the photos makes it real again. Good memories for long days.

The week after the party, I accompanied my oldest son's first choral concert. While the music challenged my fingers, I jumped at the chance to be paid to spend time in his classroom. 

We performed several great choral pieces but one stands out this weekend. Not only was it fun to play, it speaks to my mental state when fatigue weighs heavy and mental fog slows normal brain function. 

For when I'm in this state of mind, overwhelmed processors make it difficult to craft words (thus it's taken three days to complete this post!). And news and Facebook updates blur together, creating one overriding thought: 

"It's crazy down here; just one muddy blur of crazy!"


So I shall close by linking to the choral piece Alice, by Sarah Quilter. Some of you might relate. When I run out of spoons and fatigue wins, I feel I'm living in a Mad Hatters World, where everything's out of balance, dis-proportioned, and even a little mad!


“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” (John 16:33)


 photo credit: Mug project: 17 via photopin (license) photo credit: DSC_4040 via photopin (license)
5
Back to Top