“Coming Out”

Coming Out

Right before Christmas I spontaneously answered an appeal from an organization I’ve been a part of since 1991. They’ve changed their name in an effort to reposition the invisible malady we share. The idea was to spread the work about ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) by asking ten people to donate twelve dollars each to raise money for much needed research. I made an embarrassing selfie Vimeo video, showing myself in the state I’ve hidden from the world, my town, my friends for twenty-five years. I hate asking people for money, so I tried to downplay the donation aspect while encouraging my friends to “share” the message to help raise awareness of Chronic Fatigue and Fibromyalgia. I took in a deep breath, said a prayer, and clicked the “post” button on Facebook well after midnight, before I lost my nerve.

I have over a thousand “friends” on Facebook, some I’ve never met in person. Many of themfrequently “like” the inspirational quotes I post, photos of my precious granddaughter, humorous jokes, pretty pictures of the beach. The resulting response of silence to my linked video in my Facebook world was palpable, deafening really. What on earth had I done? Had I just “lost” a bunch of “friends?”

Ginny’s Solve ME/CFS 10/$12 Appeal for Hope from Ginny Fleming on Vimeo.

Slowly, a few responses trickled in, applauding my courage. One night I received a private message from a long lost friend, thanking me for my candor, explaining how my video had affected her family. Her son had been diagnosed with Chronic Fatigue Syndrome a couple of years prior, but things had been getting very tense in her household, as her husband just didn’t understand and he had been getting more and more frustrated with their son. She had showed my video to her son, who said my description was “spot on.” She had showed it to her husband and “something clicked” and he finally “got it.” The role of caretaker to those of us with ME/CFS is a lonely and weary one, too. I sighed, finding comfort that I had helped someone. The personal embarrassment was worth it, if I had only helped that one family.

I called my best friend in Tennessee and asked her opinion.

“It was pretty depressing,” she admitted with her familiar chuckle.

“I know, right? But that’s how I really am about 75% of the time.”

“Really? I would’ve guessed about 25%.”

“No, I just don’t answer the phone or talk about it every time I’m so down, even with you. You know me better than anyone and you really thought I felt this way only 25% of the time? Should I delete it?”

“No, but maybe you could do a follow-up video explaining more? And just shoot from the hip, no script, just telling it like you just told me.”

I took her advice and recorded a more upbeat video. I put on make-up and filmed it outside on my deck, sunshine and chirping birds in the background. I got a few more “likes.” I raised a little money. But another friend, one who had lived with similar health challenges for decades as well, told me she liked the first video better — that she felt like I had negated all the wonderful honesty I’d expressed in the first one when I posted the second one.

G’s follow up CFS video from Ginny Fleming on Vimeo.

So I did a third one, this time using YouTube. It was right before Christmas. I held my iPhone out and recorded another selfie with Christmas music in the background. This one was a mix of the two. I got a few more “likes,” more heartfelt donations, and several private messages thanking me for validating similar feelings, for expressing the day to day realities of living with CFS and Fibromyalgia in a way that reached family members who had not been very understanding until seeing my video.

After Christmas, my husband found a “scooter” on sale at a medical supply place and, after 25 years of hiding my pain, painting on a smile for the world, living a mostly housebound life, I took my first spin. I was a nine-year old with a new bicycle! You could not wipe the smile from my face! I felt only joy and exuberance as I felt the wind in my hair as I zipped down the street!

“I hope this doesn’t make you feel … disabled, handicapped.”

“Well, of course it does! But I’m so over it! I’m 55 and I am so over it!”

The first few times I drove my “Go Go,” I stayed on the same two streets I’d walked for years whenever I could get out of the house. But two weeks ago I branched out and took a “walk” (“a scoot”?) beyond the side street on which I’ve lived for fifteen years, but have only seen, I realized, from a car window. As I motored past Wake Forest Elementary, a nostalgic tear slipped out behind my Ray Bans. I recalled the many times I had joined first Caroline, then Hallie, for lunch in that noisy cafeteria. Light and noise and smells had assaulted my sensitive body and I’d smiled my way through the thirty minute experience before I drove home and crashed in the bed, resting up before time to pick them up in the carpool line at 3:20. The sounds of those little elementary school children, their energy, their boisterous joy, the innocent, promising twinkle in their eyes — I am so glad I got to experience them! I am so grateful that I braved the times I sucked it up and went to my daughers’ schools even when I didn’t feel up to it. I almost always paid a dear price later, but no one can take those memories away from me.

Continuing, we turned the corner and then another corner, the Seminary campus on our right. Roosevelt, my little terrier mix, trotted right along with me, both of us learning how to navigate the moving vehicle and the leash, adjusting our speed from “hare” back down to “tortoise” when he galloped and fell behind; stopping abruptly when he found a bush he was determined to sniff, to lift his leg and make his mark while I untangled and readjusted the leash situation. Ideally, I needed him on my left, freeing my right hand to press the lever forward when we were ready to go; to release when we needed to stop suddenly.

“I don’t think this is an all-terrain vehicle, Roosevelt,” I said when we hit a rough parts of the sidewalk, ran over anything larger than a sweet gum ball, navigated turns. Cars sped past us as we made our way down Durham Road, the major 35 mph thoroughfare through our small town. I kept my head down for a few houses, but at some point I got the courage to look up, to smile and nod my head to people whose faces turned to look at me through car windows, rolled up in the chilly winter air.

Near the end of our mile-long scoot, I got my new scooter stuck on uneven pavement and had to exert great effort to help it get over the hump. Then we met with a rather large branch that had fallen on the sidewalk. Ignorantly, I tried to go over it instead of getting off and moving the debris. The plastic basket popped off and I stopped us abruptly. We’d almost rolled over it. We’d almost tipped over. I got off, figured out how to reattach the basket,  and moved the branch. We finally made it back to our street without seeing anyone I knew.

I took out my iPhone and recorded a little of our scoot-walk, capturing Roosevelt’s cute little run beside me. When I posted that on Facebook, I got over 70 “likes” and quite a few comments.

One friend asked to see a picture of the actual scooter. I retrieved the only one I had, the one taken by my husband the first day he had surprised me with the after Christmas gift. I was wearing no make up, no bra, my wild hair unruly around my ear warmer headband. It was not a flattering picture at all. But something inside me said, “What the hell? I’m 55. I already posted that depressing video. Who gives a rip?” So I commented back on that post and attached the awful photo, once again getting over myself and letting real life — my real life — show.

IMG_0653

Oh, the nights before Christmas!

My Santa Collection in the dining room

Sleeplessness is so much worse during the holidays for me. I just LOVE Christmas, and even though I’ve “downscaled” my expectations of myself in recent years, there’s always so much I WANT to do. Those visions of sugarplums dancing in my head make getting a good night’s sleep next to impossible!

So I was up until 2 am last night, gloriously playing Christmas CDs by Amy Grant, James Taylor, Michael McDonald, Luther Vandross, Kenny G, and decorating away while my husband slept. My helper, Lisa (awesome – thanks, girl!), had helped me get all the boxes from the awkward attic yesterday. That little elf did all the bending and stooping and retrieving of more than a dozen large plastic containers and random boxes and framed seasonal artwork from their place in the back left part of attic that can only be accessed by the creakiest of disappearing stairs on the planet. We’ve lived in this almost 50-year old house for twelve Christmases now, and why I don’t figure out a better place for the Christmas boxes I just don’t know. Maybe when they get put away this year, Lisa will help me figure out a different system! (yeah, that’s what I said last year, too!)

Anyway, we started about 2:30 pm unsnapping green, red, white, blue lids, the stuffy aroma of sleeping table linens, towels, dishes wrapped in old newspaper from bygone years, treasured breakable decorations wrapped in wrinkled, faded, soft, well-used tissue paper, stockings, stocking hooks, my Santa collection, the Advent wreath, my many Christmas and winter snow books – for kids and adults, sweet handmade items from the kids’ preschool and elementary school days, the well-loved red “toy box” with the Christmas puzzles and puppets, which our 8 year old twin grandsons now run to with exclamations of “I remember THIS!”, just as my own daughters did 15 years ago.  I bopped around singing and humming along with James, Amy, Luther as we finally uncovered all the fake greenery to begin what I consider to be the first order of Christmas decorating business.

Two years ago I’d bought 4 bundles of nice new dark greenery on sale after Christmas but never found them last year, so we’d just used the ancient, shedding strands, having a heck of a time trying to figure out which ones were long enough to go where, my labeling system of previous years having been abandoned somewhere along the way. This year, we found the lost, new strands!  So we had more selection and could actually retire some for either my youngest daughter, who now has her own apartment, or to donate. Lisa and I unwound and fluffed greenery and nailed nails in their historical holes above the molding of the big picture window in the dining room, the rounded archways of the foyer, over the French doors in the living room, over the pantry doors and the side kitchen window, draped over the mantles of the two fireplaces, and along selected pieces of furniture and mirrors downstairs, and, of course, wound around the newell posts and up the rails of the staircase. Hanging greenery always makes me feel festive and it is the thing I hesitate to take down at the end of the season each year. Being indoors so much, I LOVE bringing the feeling of the outdoors inside with greenery, flowers, anything from nature. Going downstairs to get my coffee in the morning seeing the staircase draped with greenery just makes me smile! This weekend Michael will help with the tree, which will be visible as I descend the stairs, just beyond the archway in the living room, and my ultimate festive vision will be complete! My “happy place” for December!

the angel Nana painted for me years ago

still need "fluffing," but it's up there!

Meanwhile, long after Lisa had left and Michael had gone to bed, I found myself still wanting to stay up, cherishing the memories of Christmases past, still singing with James and Amy, my legs begging for rest, but my heart unable to leave undiscovered trinkets. I read inscriptions in the special, beautiful books given to the kids through the years. I even read some of the books. I untangled the strands of the hanging nativity given to me by a college dorm mate, and hung it in its traditional place between the kitchen and the den. I made a box of things I was ready to let go of for my girls to go through this year and claim for their own. I glued the baby Jesus back in place in his manger in my corn husk nativity set – the one I’d bought with my own money from a Neiman Marcus catalogue when I was a teenager in Little Rock. I’m considering handing this one down if it would mean something to one of my girls.

I stayed up until I’d been through every box except the ones holding the Christmas tree ornaments, knowing that will be another wistful evening’s activity. And then I slept. A few hours. Awaking before the alarm went off. Excited to continue the holiday preparations! CHRISTMASTIME IS HERE!

The 12 Days of Christmas at the Beach

I just came in from a couple of hours on the beach, this gorgeous but a bit chilly, sunny December day. On my walk, I found 4 sand dollars and I thought that was cool since it is December the 4th (or is that tomorrow?!) I also witnessed a family staging and taking photos for their annual Christmas card. They had brought an upholstered wingback chair over the dunes, scattered shiny ball ornaments around in the sand, and took turns wearing a Santa hat and snapping photos. Their dog just wanted to play fetch and absolutely loved dashing into the cold waves retrieving, then running back to the thrower, dropping the stick, then shaking off, water droplets flying everywhere. I had brought my pen and paper and what came out was the following song lyrics for a beach version of “The 12 Days of Christmas” – enjoy!  All together now …

A Charlie Brown Christmas Tree on Holden Beach, compliments of Irene and a local decorator!

On the first day of Christmas my true love gave to me…

a conch shell from the beach.

On the second day of Christmas my true love gave to me…

two olive shells, and a conch shell from the beach.

On the third day of Christmas my true love gave to me…

3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the fourth day of Christmas my true love gave to me…

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the fifth day of Christmas my true love gave to me…

5 sandy kids.

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the sixth day of Christmas my true love gave to me…

6 waves a crashing, 5 sandy kids.

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the seventh day of Christmas my true love gave to me…

7 boats a shrimping, 6 waves a crashing, 5 sandy kids.

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the eighth day of Christmas my true love gave to me…

8 fish a swimming, 7 boats a shrimping, 6 waves a crashing, 5 sandy kids

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the ninth day of Christmas my true love gave to me…

9 sticks of driftwood, 8 fish a swimming, 7 boats a shrimping, 6 waves a crashing, 5 sandy kids

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the tenth day of Christmas my true love gave to me…

10 dolphin jumping, 9 sticks of driftwood, 8 fish a swimming, 7 boats a shrimping, 6 waves a crashing, 5 sandy kids.

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the eleventh day of Christmas my true love gave to me…

11 shells a clinking, 10 dolphin jumping, 9 sticks of driftwood, 8 fish a swimming, 7 boats a shrimping, 6 waves a crashing, 5 sandy kids.

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.

On the twelfth day of Christmas my true love gave to me..

12 sea gulls flapping, 11 shells a clinking, 10 dolphin jumping, 9 sticks of driftwood, 8 fish a swimming, 7 boats a shrimping, 6 waves a crashing, 5 sandy kids.

4 whole sand dollars, 3 crawling crabs, 2 olive shells, and a conch shell from the beach.