“Stand Alone”

Prompt: 5 minutes “Stand Alone”

“Stand Alone”

Stand alone. On your own two feet. See what you can do without any others to stop you, to help you, to harm you, to interfere, to suggest other ways. What does your heart say? What is your heart saying to you? IMG_6132

Stand alone. You already do stand alone. But alone with a living God burning brightly inside your very heart chakra, comforting you, guiding you, suggesting ideas that will catapult you to the Highest Version of Yourself that you can imagine. We just don’t often take the time to listen to that part of ourselves. Yes, I believe the Holy Spirit is a part of each of us, so intertwined with every fiber of our being that we can never not be holy. If we listen.

Stand alone. I used to stand alone and mope inside about being alone. Why doesn’t anyone really understand me? I need them to understand me! I cried tears and sobbed guttural wails as I wrestled with the challenges of growing up, maturing, moving from an insecure teenager to an insecure adult, an insecure wife, mother, neighbor, church member, volunteer, over-achiever. Until it all came crashing down on me in the form of what would morph from one day of a swollen throat, fever, body aches worse than the flu, fatigue that slammed me flat to the surface of my water bed and wouldn’t let me go, into the woman I am now. Twenty-five years I’ve lived inside my body alone, alone in houses full of people who cannot understand this bizarre chronic illness. But now I stand alone – secure in Who I Am.

Sat nam.

“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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Anne Lamotte on Robin:

Anne Lamott’s words always speak to me, and so I will share her words from today:

Anne LamotteAnne Lamott
This will not be well written or contain any answers or be very charming. I won’t be able to proof read it It is about times like today when the abyss is visible and we cannot buy cute area rugs at IKEA to truck out the abyss. Our brother Robin fell into it yesterday. We are all staring at the abyss today.

I called my Jesuit friend the day after the shootings in Newtown, stunned, flat, fixated, scared to death: “Is there any meaning in the deaths of twenty 5 and 6 year old children?”

Tom said, “Not yet.”

And there is no meaning in Robin’s death, except as it sheds light on our common humanity, as his life did. But I’ve learned that there can be meaning without things making sense.

Here is what is true: a third of the people you adore and admire in the world and in your families have severe mental illness and/or addiction. I sure do. I have both. And you still love me. You help hold me up. I try to help hold you up. Half of the people I love most have both; and so do most of the artists who have changed and redeemed me, given me life. Most of us are still here, healing slowly and imperfectly. Some days are way too long.

And I hate that, I want to say. I would much prefer that God have a magic wand, and not just a raggedy love army of helpers. Mr. Roger’s mother told him when he was a boy, and a tragedy was unfolding that seemed to defy meaning, “Look to the helpers.” That is the secret of life, for Robin’s family, for you and me.

I knew that those children at Sandy Hook were caught in God’s loving maternal arms at the second each crossed over, and the teachers were, too. I believe the shooter was too, another child of God with severe mental illness, because God loves, period. But this is controversial.

I know Robin was caught too, in both the arms of God, and of his mother, Laurie.

I knew them both when I was coming up, in Tiburon. He lived three blocks away on Paradise drive. His family had money; ours didn’t. But we were in the same boat–scared, shy, with terrible self esteem and grandiosity. If you have a genetic predisposition towards mental problems and addiction, as Robin and I did, life here feels like you were just left off here one day, with no instruction manual, and no idea of what you were supposed to do; how to fit in; how to find a day’s relief from the anxiety, how to keep your beloved alive; how to stay one step ahead of abyss.

We all thought after Newtown that gun control legislation would be passed, but no–not one new law. We think in the aftermath of Robin’s death that there will be consciousness raising about mental health, but I doubt it. The shock and awe will pass, like it did after Phillip Seymour Hoffman’s death. Unless…unless we take action. But what? I don’t have a clue. Well, here’s Glenn Close’s astonishing organization to raise awareness and diminish the stigma of mental illness, where you can give OR receive help: http://www.bringchange2mind.org. Go there, OK?

In Newtown, as in all barbarity and suffering, in Robin’s death, on Mount Sinjar, in the Ebola towns, the streets of India’s ghettos, and our own, we see Christ crucified. I don’t mean that in a nice, Christian-y way. I mean that in the most ultimate human and existential way. The temptation is to say, as cute little believers sometimes do, Oh it will all make sense someday. The thing is, it may not. We still sit with scared, dying people; we get the thirsty drinks of water.

This was at theologian Fred Buechner blog today: “It is absolutely crucial, therefore, to keep in constant touch with what is going on in your own life’s story and to pay close attention to what is going on in the stories of others’ lives. If God is present anywhere, it is in those stories that God is present. If God is not present in those stories, then they are scarcely worth telling.”

Live stories worth telling! Stop hitting the snooze button. Try not to squander your life on meaningless, multi-tasking bullshit. I would shake you and me but Robin is shaking us now.

Get help. I did. Be a resurrection story, in the wild non-denominational sense. I am.

If you need to stop drinking or drugging, I can tell you this: you will be surrounded by arms of love like you have never, not once, imagined. This help will be available twenty/seven. Can you imagine that in this dark scary screwed up world, that I can promise you this? That we will never be closed, if you need us?

Gravity yanks us down, even a man as stunning in every way as Robin. We need a lot of help getting back up. And even with our battered banged up tool boxes and aching backs, we can help others get up, even when for them to do so seems impossible or at least beyond imagining. Or if it can’t be done, we can sit with them on the ground, in the abyss, in solidarity. You know how I always say that laughter is carbonated holiness? Well, Robin was the
ultimate proof of that, and bubbles are spirit made visible.

Depression

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Depression

Depression is a lonely business. It sits behind one’s steady eyes, shaking your faith in yourself, your place in this world, your desire to stay in it. Sometimes it all just seems too much. And when you’ve felt like this more times than you can count, and you’re on the downhill slope of life anyway, and you’re so tired, just so tired of keeping on keeping on, you just might reach for something, anything really. Whatever calls your name while you look for a speck of light in the dark inky world of despair you can’t see as temporary anymore. This time I reach for expensive, brand name Prozac. It keeps me here. This time.

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Blessed by the Life and Legacy of Dr. Maya Angelou

IMG_4730I just finished watching the two-hour Memorial Service for the esteemed Dr. Maya Angelou held at Wake Forest University, thanks to our Time Warner Cable local TV station, Channel 14. I was recording it, planning to go up to the local Wake Forest (the town, not the university) Farmer’s Market, but I could not tear myself away from the screen. I was simply too moved to move.

 

 

IMG_4726 - Version 2 Cicely Tyson, Bill Clinton, Oprah, Michelle Obama, and others delivered eloquent tributes; singers praised the Lord and moved us to tears; her generous family spoke of sharing their beloved mother, aunt, cousin, grandmother, great-grandmother with the world. Wow. I have nothing to add. Thank you, thank you, thank you, Dr. Maya Angelou, for touching so very many lives. Thanks to her family for sharing this fine lady with the rest of us. Thank you, God, for loaning us the gift of Dr. Maya Angelou for 86 years, and for welcoming her home. May she rest in peace.IMG_4736IMG_4734IMG_4753

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