“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.

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Six Weeks

Six Weeks

In six weeks I’ll be a grandmother and I don’t really know what to think about that. Everyone says, “Congratulations! It’s so much fun being a grandmother! Bet you can’t wait to get your hands on that baby!”

I do love babies. I consider “the nurturing mother” my strongest archetype. Yet for some reason the expectation of this first biological grandchild has me feeling a bit unsettled, and I’m not sure why.

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The Mother’s Journal I kept when my daughters were in utero and growing up.

I love to hold newborns. I do so easily, naturally, swaying back and forth automatically. Whenever I stand up to hold a baby, cradling it in my arms, immediately my weight wants to shift side to side like a metronome. My eyes take in the little one, peering into those innocent eyes, or admiring the sleepily closed, rosy eyelids. I stop momentarily to lift the little bundle to my nose to breathe in that heavenly, sweet new baby smell they lose after a while, when they become bigger children.

And they do grow — so quickly. It seems like yesterday when I held my own babies in my arms, swaying, and sometimes I was just so tired that I longed for a night of uninterrupted sleep.

Sometimes, in the moment, it’s hard. You’re tired and she cries and you don’t know what she needs, what she wants, and she can’t tell you yet, and so you give her everything you’ve got, I mean everything you’ve got, and sometimes she settles down and you sigh with relief and resume the loving, natural, relaxed stance, but sometimes … sometimes it’s just not enough.Image

Like when she’s in middle school and you hate those catty girls she seems to care so much about, who say mean things to your precious one and you want to tell her it doesn’t matter, that in ten years you won’t care, if you even remember at all that they laughed at the new haircut you were so delighted with as you smiled at your reflection in the mirror that very morning before school.  Image

Like when she’s in high school and thinks she’s grown up and doesn’t need to be in by 11pm, no one else has to be in so early, I was only ten minutes late, you can’t ground me for that, oh yes I can, give me your car keys. Now. I hate you, well, I still love you, but we’ll talk about this later, go on to your room. Now.

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God, it’s hard to grow up. It’s hard, sometimes, to be a kid, a teen, a young adult, a parent, a mother, especially a “good” mother, whatever that is, and it changes with each child, with the times, and there are no rule books, there just aren’t. Maybe I’m scared it’ll be hard to be a grandmother, too.

Breathe. Sigh.

It always turns out all right. Perfectly, really, since there is no one “right” way, only choices, then more choices that add up to one’s life — infinite possibilities, and they’re all okay. Really, they’re all okay.

Perhaps it’s best I don’t know what to expect in six weeks. Sure I’ve heard, I’ve read, and mostly it sounds terrific. But will she love me as much as she loves her other grandparents? Will I have the energy to be present in my granddaughter’s life the way I want to be? Health challenges limited and defined so much of how I ended up mothering my own, but we lived under the same roof so at least I got to be with them, reading books in bed, inhaling the Johnson’s baby shampoo smell on their clean toddler heads. Will I have the physical energy to drive to see this new baby, to keep her overnight when her parents go out-of-town or need a break?

It blows my mind to see my little girl all grown up now, round with child, resting her arms on her belly, wondering if she might have “an outie” before her daughter sees the light of day. It amazes me to see her organized home, where decoratively painted and ribboned wooden 3, 6, 9 numerals hang on the rod in the nursery closet, already separating by sizes the matching outfits and dresses others have graciously given them or they’ve already bought from Baby Gap. It touches some part of my heart I cannot name, do not know, when I am shown the inside of the drawers of the dresser/changing table given to them by friends and now filled with freshly washed and folded onesies, teeny tiny socks, soft pima cotton swaddling blankets, hooded bath towels. Was I ever this organized? If so, it was definitely when I was awaiting the birth of my own firstborn, this now-almost-mother who is no longer “mine.” Ahh…maybe this is what threatens my peace in some way — a feeling that this milestone will somehow end a chapter of my own life, when really it should just open up a new one.

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Me with my firstborn.

Now, in my own home, I sway with anticipation, cradling my doggie (my dogs have always consoled me) and I wait, tentatively, for the birth to be behind us, for all to be healthy and well and on the other side of this momentous occasion. How strange to know this new little life will fill all our hearts with more love than we can imagine, stir feelings in me I’ve never known, complete some part of the circle of life I don’t even feel I’m missing. All I know is that my own grown up little girl better be all right. God, may she have a smooth labor and delivery, a healthy baby, and the strength and good health to enjoy the abundance of rewards that come with the blessing of motherhood. Keep her safe, God. Just keep my baby safe.

“Older”

Prompt: 40 minutes: “Older”
June 17, 2013

Older

Older is a loaded word, a plant growing out of its pot, roots bound together in a clump of experience seeking desperately fresh soil, nutrients, water — that life-giving, liquid oxygen.

Older is not for sissies. No, it takes a bit of bravery, or at least the show of “a stiff upper lip” as my dad would say. “Everything’s super,” he says, when I know he must have aches and pains, feelings of grief and loss somewhere down inside that aging body, now a size small.

Older is watching your parents age, Dad shrinking, Mom getting shorter, rounder. Older is watching myself get rounder, wrinklier, heavier, more tired, less patient inside but more patient in front of youth.

Mom and me at Holden Beach 2011

Mom and me at Holden Beach 2011

Older is the home around me — walls needing paint touch-ups, cobwebs stretching from chair legs to corners, not having moved for months, years.

Older is the dog lying contentedly beside me, an occasional sigh sounding full of resignation perhaps. Or maybe it is just sheer acceptance.

Acceptance. That’s what older requires. Acceptance — of life, people, days gone by, limitations. Really? Or am I just too sleepy this morning to be more upbeat? Maybe older is needing more leisure time to wake up, or maybe it’s having so much leisure time that I don’t “wake up” until the day is well on its way.photo-22

Older is sighing when I don’t feel like making the effort to open my eyes, get out of bed, put the pen down, and go on with my day.

Older is knowing you have surgery in less than four days to remove cancer from your body. Older is looking around the house at the accumulation of a lifetime and just not knowing where to begin to sort it all out. I don’t want those I’ll leave behind to have to do it, yet I’m not ready to burn it, shred it, dispose of it just yet — I might live many more years and wish I could find those notes I took when I was in my 30’s, trying to sort through life. I might want to get inside that young woman’s mind again sometime. Words can take me there.

For now, I think I’ll just close my eyes and rest a bit.

Leaving Roosevelt

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It’s utterly amazing how quickly a new pet can worm his way into your heart. We adopted a rescued terrier mix the first time we saw him, a mere two weeks before we were to head out-of-town on a business trip for six days and five nights. Having looked forward to celebrating our 13th wedding anniversary by staying an extra night at an upgraded suite at the Wild Dunes Resort in Isle of Palms, SC, Michael and I suddenly found ourselves questioning this extra night. Really? A dog we barely knew was tempting us to change our plans??

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A phone call answered the question about taking him with us: no, our accommodations were not “pet-friendly.” Remembering how casually I had answered that question to vacationers inquiring about our own beach house back in the summer rental days, I felt a rush of compassion and a wee bit of guilt. Remembering Michael’s knee jerk responses to our daughters’ inquiries about bringing their own canine family members with them to our house or the beach house, I winced to myself, compassion oozing out of me like Bavarian cream from a warm doughnut.IMG_1706

Thankfully, one of my best friends offered to consider keeping him at her house if our Roosevelt got along with her Lucy. We had no idea how this new 13 pound, shy little 2-year old boy would behave, but I crossed my fingers. Roosevelt rode shot-gun as we drove the mere 2 miles to Robin’s house. IMG_1683I fastened the leash on his collar and baby talked “Come on, buddy,” as I enthusiastically introduced him to this new yard, new house, new human, new dog, so soon after he was just getting used to us as his new owners.

Once inside, the dogs sniffed each other’s privates, checked each other out, Lucy making sure Roosevelt knew this was her territory. Until we turned our backs and Roosevelt hiked on the kitchen island, marking his spot. “Oh Robin, I’m so sorry! He’s never done that at our house!”

But Saint Robin, clearly ready and in control of the situation, proceeded to firmly but patiently reprimand him while spraying and cleaning the “piddle.” A former groomer, breeder and dog handler, Robin knows her stuff. And I was more than willing to pay her price to take care of our new precious baby if she would have him.

Long story short, we went to the dental conference; Robin kept Roosevelt, and texted pictures of Rosie with Cousin Lucy lying side by side on the sheet-covered couch.2013-03-15_22.34.21

She assured me he would still be happy to see us, but I sure was glad to get daily reports on his antics and behavior, especially the part about “he still goes to the front door and sniffs for you!” I remembered feeling the same unsettled way when, 25 years ago, we had left Caroline with Paw Paw and Gran for the first weekend apart from our six month old baby. Seriously? Well, yeah, pretty darn close!

“Forever”

Another off the cuff prompt writing: 35 minutes: “Forever” GO!

Forever

Forever is a long, long time. Decisions, choices, paths taken in an instant can affect – DO  affect – your life forever. And I mean, FOREVER!

“Mate selection,” as someone called it recently. Now there’s a choice that affects one’s life tremendously. The little souls brought forth in human body as a result – unique experiments on this earth plane, as all of us are.

Forever can feel oppressive, like “when will this ever end?” Forever can feel boring, like how much longer until something different – better or worse – comes along? Forever can feel awesome, like “I could do this forever!

Forever is a promise we make, but do not always keep. For it is impossible to know with certainty how we will feel when “forever” gets here. We can try. We can try and promise forever, until death do us part, but you really don’t know for sure how that will turn out, do you? Not by the statistics of divorce in this country today. Not by the tabloids featuring broken marriages for all the public to see as they wait in line at the Food Lion, purchasing salad-in-a-bag with an expiration date in just 6 days – that’s the freshest she could find. The almond milk will last almost a month. The can of Lesueur tiny green peas over a year. But nothing in that store will last forever. Well, maybe the Saran Wrap, plastic things that won’t decompose – nope, not even in a landfill while even her unborn grandchildren walk this earth.

Grandchildren. Children. Family.

Now there’s something that lasts forever. Forever, as in tracing one’s roots back as far as geneology records can be deciphered, exposed, uncovered. And as far ahead as we can possibly imagine – which really only goes for a few generations for me, but could go on forever, if we don’t destroy this planet first.

Forever. Forever is the love I have for my children. No divorcing there. No matter what they do or say, or don’t do or don’t say, I cannot imagine that my love for them would ever end. Ever. Memories of happy faces in swings, singing “fingin’, fingin’, fingin” in a sing-song voice, as birds and butterflies complete the wooded backyard scene, the devoted family dog on duty, walking, sniffing around, plopping down in the sun with one eye open – Spatts, the Sentry, guarding his people, always. Forever, really, if you believe  that sort of thing, which I do. In my mind’s eye, I see Spatts, Bailey, Tip all happily running around together in a heaven of freedom, looking down on us all – Hallie, Caroline, me – sending protective, loving energy to us, without our even realizing. Waiting for us patiently, as they always did on earth. For when it’s time for our bodies to transition and our souls to join the Great Forever, they’ll be there to greet us. I do believe some things are forever.