For six years, I’ve lived about an hour and a half from Myrtle Beach, and still haven’t gone there just to inhale its beauty.
I’ve gone there once for an appointment and once for a comedy show (laughter is medicine, you know). But, the heat and travel are hard on me, because I have ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a misunderstood – and mysterious – illness that impacts every aspect and moment of my life. It affects the autonomic nervous system, immune system, the endocrine system (and others), so there are about thirty “overlap” syndromes that usually accompany it (including Fibromyalgia), making symptoms very unpredictable and debilitating: extreme muscle & joint pain, extreme fatigue, orthostatic intolerance, photosensitivity, loss of sleep & cognition, memory deficiency, chills/sweats, dizziness…on & on.
Many suspect the origin of ME/CFS is a virus, and there’s no cure (yet). Research has actually shown that it is “more disabling than MS, heart disease, virtually all types of cancer, patients undergoing chemotherapy or hemodyalisis.”1 One doctor/researcher, who studies and treats HIV and ME/CFS, said (in 2009), “…if I had to choose between the two illness, I would rather have HIV”2
I’ve tried to avoid discussing my illness (or minimize the situation by just referring to “health issues,” because I truly don’t want to be pitied and/or bring everyone down. So I’ve become a hypocrite instead.
When most people ask how I’m doing, I say “good” or “fine,” and try to move on. But, I’m never “fine.” Not physically. I’ve had this for about twenty-five years, and it’s a little like having neverending mono, that gets worse when you overdo it. It’s likely that some folks believe I can’t possibly be so sick, because I’m a master at pretending to be okay for short periods of time, but I (and my family) pay for that for days later…
But I do have my “good” days. And I’m finally behaving – strictly following my doctor’s advice and stopped railing against it. It means not just eating right with conventional & alternative therapies, but restricting steps and keeping my heart rate down, with low impact exercise like stretching/yoga and light housework. It’s counterintuitive to what most people would consider a path toward wellness, but it’s what I have to do. With ME/CFS, overexertion results in a sore throat, swollen glands, chills/sweats, and debilitating pain and fatigue for days to follow.
And I’ve had battles: I’ve spent so much time trying to prove my worth, trying to prove that I CAN do something, anything, that I’ve kept myself even sicker. I’ve asked God, “Do I not have enough faith to be healed?” I’ve fought so hard to not identify with my illness, that I wouldn’t allow myself to accept it.
It’s clearly through this weakness that God wants to be glorified. But every time God’s tried to reveal this truth to me, I’ve tried to redirect my service.
And it never fails…when we hand the reins over to Him – He helps us soar!
I believe God’s led me toward photography to supplement my writing. It’s giving me a much-needed creative outlet that doesn’t tax my ME/CFS-foggy brain, (or perhaps it’s helping to release it a little) and it gets me into God’s creation, where I can be filled with His glory, His healing, His very breath.
I joined a photography group at our church recently. We get to enjoy one another’s company and learn from each other as we take trips to noteworthy spots across this beautiful state (SC). (Oh, yes, and usually enjoy a great meal!) I haven’t explored South Carolina at all, so this is such a treat.
Since I’m trying to obey my doctor’s orders, however, I have to plan, plan, plan… It’s called “staying within the energy envelope.” I have to rest to conserve energy, but I often pay for it after the trip. I’ve recently concluded that it’s better for me to not commit to plans, because the nature of my illness is too unpredictable, and I’m far too likely to push through so as not to cancel (and appear a “flake”), thus crashing for days…The push/crash cycle is not good therapy.
For this trip to Huntington Beach State Park, we were supposed to meet for lunch first, then head out for photos. Because I wanted to get the early morning and the moonrise, my sweet husband decided he would head up Friday night with me, to make a date night of it. We thought it would be better to get a night’s rest than to slip a midday nap in the uncomfortable car on Saturday – I couldn’t have made it through a whole day. Oh, you lucky folks who own RVs!
I prayed Friday afternoon that God would bless our trip with safety and reveal His Glory!
Then, guess what happened?
We needed to rush our new kitten (showed up in the neighborhood a week earlier), Emma, to the vet.
I’d taken Emma for vaccinations the day before, and she’d been a little lethargic. I figured she’d perk up, though. But before we left, she walked across the room all wobbly-like. And she was warm when we picked her up. Uh-oh. So, off to the vet for fluids and anti-inflammatories. She was going to be fine. We left her (already acting better…the “wobbly” was soreness in legs) in the care of our cat-whisperer son, Chase, and headed off – late – to the beach.
We were supposed to get dinner first. Now we’d be lucky to catch the moonrise.
Although, I was determined to go to the beach near Huntington Beach State Park, maybe Surfside Beach. My sweet hubby patiently informed his directionally & temporally challenged wife that he was planning to just drive straight toward Myrtle Beach and grab the first parking spot available. Hmmm, we’re running that late?
Okay, Lord, I’ve put all of this in your hands. You’re steering the boat.
Well, the moon shots were a mess. I’ve taken some decent moon shots before, but I was in such a rush (we couldn’t find a spot for a few minutes), that I had the camera on the wrong settings for the first few minutes. And the moon had already risen way above the horizon… And by the time I’d figured out the settings were wrong, I couldn’t remember the correct settings. Did I mention a big symptom is the memory thing. Not just an “I forgot where I put my keys,” but legitimate, twice-tested, medically-documented memory issues. I may not remember your name five minutes after you tell me…but maybe tomorrow?
So, the moon started getting way up into the sky, and my dear, sweet hubby is playing Sherpa for me, so supportive of everything I do. Did I mention how great he is?
And I was tired and hurting. And extremely hungry. So, we packed it up.
My consolation was to be a nice seafood buffet. I love oysters and crab legs, but seldom get the treat. And, really, who goes to beach (especially when you rarely go), and doesn’t eat seafood?
Well, we do, apparently.
At 9pm, we headed to one of the best seafood buffets listed on the “interwebs,” and it was closed. Really!? So, we headed to the nearest, “second-best” listed and it, too, was closed. Seriously!? We were starving, and not willing to take the chance of another restaurant being closed, so we went to a popular steak restaurant next door.
The steak was excellent, so I’m not really complaining (just a little).
I asked, “But, Lord, you don’t want me to have seafood?”
He reminded me, “Who’s steering this ship?”
The early bird gets the worm.
We got back to the room so late we decided not to even try for sunrise, which woul’ve been rough for me on a “good” day. But we still managed to get to Huntington Beach State Park at about 8:30am, heading to the easiest spot for photos – a dock out over the marsh.
I noticed Jose before we even set foot on the walkway. He looked as much at home there as anything else, in his slouchy, hunter green tam hat, with a huge camoflauged lens sitting atop a tripod.
He began to ask me questions, with a slight Cuban accent – about my camera, my methods, etc. And so began my one-on-one lesson with an international photography professional (of 40 years). Looking back, I’m kicking myself for not asking more questions. (I always worry about bothering folks… Ugh.) Of course, he ended up teaching me the very things I’ve wanted to learn in the field! (e.g. He showed me how to read the histogram & watch for blow-outs – on my own camera.) I didn’t even have to ask.
The best part about meeting Jose was the man himself. He comes to Huntington beach every year, but this year, his wife’s aunt turned 110 years old, so they were celebrating the milestone birthday.
He asked us how we liked his hat, as he demonstrated its multi-functions – moving it back and forth on his head. He lost his favorite hat of ten years on a recent photography trip (I think to Argentina?). He’d hung it on a tree to dry and had forgotten it. So this was his new hat. I think it looks fabulous!
And he told us stories from his trips around the world, to Africa and Iceland… about searching for red pandas and polar bears. He described an up-close and personal encounter with a wild polar bear. He was told that the only reason he wasn’t eaten was because the bear must’ve just eaten. You can read all about Jose’s adventures on his blog
Then, Jose offered to hook my camera up to his lens — his 400mm f2.8, intimidating-looking lens..
At the end of the dock was a gorgeous great blue heron, hanging out in front of the reeds, in perfect view.
I’d been disappointed (okay, a little pouty) after our last photo outing to Swan Lake because some of the “able-bodied folks,” who got to actually walk around the place, got fabulous shots of a great blue heron. I, on the other hand, had to plant my butt down on my fold-up stool in the spots closest to the parking lot. I great blue heron is one of my favorite birds and I’ve been dying to get a shot of it…
I must concede, however, that I got some great shots of the birds at Swan Lake precisely BECAUSE I had to plant myself down in one place for a while and study the area. So, I’m now incredibly thankful for that.
And, now, as I put further trust in my Lord, I find that He had something even more special in store.
Because, on this exceptional day, He not only had this statuesque great blue heron prepared for me to capture in a photo, but He had prepared a mentor and the use of his most equisite equipment already trained right on the heron! (When I found out more details about the lens – after using it – my hands shook…good thing I didn’t know how much it cost before I used it – I would’ve knocked it over, for sure.)
Jose did discuss, with Andy, some compromises for a better lens for me in the future. I’ve been a little frustrated with the quality of the kit lenses that came with my camera. I didn’t realize I’d notice so much. But I don’t see a quality new one anytime soon, (since I don’t imagine anyone’s going to rush to make a donation to a GoFundMe page for a new lens for me – teehee), so dear family: Please send gifts cards for B&H Photo. [insert big smiley face]
Although I offered to take my camera back after a few moments, off of Jose’s lens, he told me to take my time. So, in addition to the great blue heron, I got a quick shot of what I think might be a tri-colored heron, which was also hanging out near the reeds, before handing the lens back over. But what a gift, indeed!
Thank you, Jesus!
Before we left, I was hoping to get a shot of the great blue heron flying off. It didn’t move…for a long time. Finally, Andy told me, for the second time, that I needed to put my sunscreen on – “Right now!” – because the sun was coming out strong. (I can’t really be in the sun, because it stings my skin, I burn quickly, it makes me sick, I have a flare-up… Wah, wah, wah. You get the picture.)
So, I started putting the sunscreen on, and there goes the heron.
Whoops. I should’ve put the sunscreen on the first time Andy told me to do it.
I managed to get some good shots of flying herons later anyway, with my own lens…
Andy and I were planning to return with the group after meeting them for lunch.
We asked Jose where else we could get good shots of the birds.
He said, “Africa.”
He also said “Florida is good; if you cant get good bird photos in Florida, then you might as well give it up.”
Then he said the best time to get shots was at low tide from the causeway (right in front of us), mostly in the early morning, because the birds would all go feed (perhaps even the storks in the trees). Obviously, the afternoon light (low tide was at 2:15pm on Saturday we were there) wasn’t ideal, but I still got some interesting shots.
We said our good-byes after taking a few more shots, and went to rest and cool off in the car until lunch.
I immediately looked up some of Jose’s work. It’s a-m-a-z-i-n-g. I felt even more honored to have been tutored by him in the field after seeing his quality photos. Again, if you don’t have time to check out his blog, just take a look at some of his work on his smugmug site
I also awaited intructions about where we should meet our crew for lunch. I was sure they’d send us the address to a seafood restaurant. After all, we were at the beach – at Murrells Inlet, the “Seafood Capital of SC” (It said so on the sign). Right?
We went to a burger joint.
So, I asked, “Lord, why don’t think I should have any seafood this weekend? I’d settle for a piece of salmon right now. I just don’t understand…?”
I must say though, I had an excellent, and filling, black & blue burger (cajun seasoning with a blue cheese spread) with sweet potato fries. Yum.
We, as a group, returned to the park to enjoy the offerings of the causeway, where the birds were also eating, hunting for little silver, splashing fish.
INTERESTING FACT #1: The alligators dig holes/burrows in the mud for basking in the sun to keep warm. But the holes left behind will fill with water during low tide or drought, which helps other species to feed, drink, or breed. The alligators are vital to a healthy ecosystem.
INTERESTING FACT #2 : The birds hang behind the alligators for protection. They get protection for their nesting offspring, while the alligators get to munch on the fallen young from an overcrowded nest. It’s not entirely pretty, but it’s necessary, and mutually beneficial.
After a little while of watching the birds feed, through the lens of the camera, I was able to anticipate the very moment when the bird was going to strike. Wha pure exhilaration – to see, up-close, a bird’s eyes zero in on a fish and watch it’s body quicken in preparation, and to know when to take a continuous shot.
I’m also learning to more quickly go back and forth between still photos and action photos. Helpful.
Is it strange that I think this wood stork photo would make an interesting birth announcement card, even though it’s a very odd-looking bird?
Above is the wood stork, below is a white ibis.
My dear, sweet, doting hubby went back for the car and picked me up at the shelter in the middle of the causeway. Have I mentioned how much I love him?
The following are some of my favorite shots of the day:
There was another couple in the shelter taking photos, together; they shared equipment. I’m trying to coax Andy into taking up photography with me. He takes great photos on his iPhone. And this was the first getaway (even date night) we’ve had in a long time, and we had a blast. As a bonus, we could share the same wish list. [grin]
[End SIDEBAR #2]
I was in pain and worn out by the time we hit Atalaya, which is the historic, Moorish-style, winter home of 20th-century sculptor, Anna Hyatt Huntington. So, I took a good, long look at the outside – it’s gorgeous. Then, a friend said it was pretty much just a lot more of the same on the inside. Hmmm… two bucks seems pretty steep to walk through “more of the same.” Right? [big, toothy grin] You have to smile about it, right?
We closed our day with group photos in the oversized adirondack chair in front of the gift shop (not on my camera). A sweet little lizard, not even two inches long, insisted on joining us. I was mesmerized by him. It doesn’t take much to amuse me.
As with any activity, I am paying dearly for it, but as you can see, it was so worth it! It was a glorious night/day, with fabulous folks! And we only suffered one injury, to our photography group’s leader — during the group photo. Note to anyone who doesn’t have a remote shutter release: get one, if you can’t run 5 yards in 3 seconds.
On Sunday morning, God revealed a few things to me.
I’ve been lost about the direction of my blog. I knew I was supposed to write about my spiritual, journey (of growth, healing & walking in the Spirit), but I wasn’t ready to talk about my illness, because I’ve been afraid of sounding like a whiner who just wants to gain sympathy or pity.
And you’ve heard of Picasso’s “blue period,” where his art reflected a deep depression that lasted for several years? Well, I’ve feared that if I opened the flood gates to write about my chronic illness, that it’s all I’d ever be able to write about…that my “blue period” would never end. Because this illness is just that – chronic. I wanted to first prove that there’s more to me than this illness.
But I can’t write authentically unless and until I write about this part of myself that has helped to shape me, and continues to play a huge part in my everyday life – my story. Like Paul’s thorn, when I accept my weakness as part of my story, then God can use it to reveal His glory.
For too long, my illness has just been some big, bad bully to be endured. But, what if my “alligator” can PROVIDE and PROTECT, in God’s plan? And, I just haven’t been able to see that, because all I can do is fixate on its teeth?
It may not be pretty, but it is part of my own ecosystem.
When I realized that it was time to come clean about my illness, for now through more of a “photo journey,” my first instinct was to start yet another blog – with a fresh start, a new name (it would be the third one). But “walking a lighted path” still defines my journey and my goal, as well as the transformative process. He pulled me out of darkness long ago into the light, and is continuing to light my path. And, as if that weren’t enough, I went to church to hear our worship leader pray for the Lord to “light our path.” And the name and topic of Sunday’s FABULOUS sermon by Dan Lian, describing the character of God? It was called, “I AM the Light of The World.”
This last “Sunday morning revelation” gets a little personal, but it’s an excellent illustratration of God’s love and provision for every little thing, for each one of us: I had asked Him to protect us and provide for us on our trip… Sunday morning, I woke up to [ahem] a “visitor” that should make a monthly appearance, but no longer does (perimenopause – what joy)… When it does, I’m often anemic and very fatigued – on top of everything else – and it normally knocks me down. To best replinish iron, I usually crave, and consume…you guessed it – red meat (a big steak or a burger). So, I’ve not been nearly as symptomatic as usual in that regard.
God sees the WHOLE picture, even when we’re whining about seafood.
I’m learning, step by step, to trust and see that God brings hope and healing to and through even the “blue period.”
1 (Hooper and Marshall)
2 (Dr. Nancy Klimas)