“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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This Time

June 10, 2013
Prompt: 10 minutes: “this time”

This Time
This time I am braver. I haven’t even sent out an email yet, put it on Facebook, keeping the cancer private, more or less, for the past week. This time it feels so much more manageable — almost routine. I mean I know it’s surgery and I don’t like pain or recovery exercises, but this time I don’t have a fear of death — I truly believe it’s just a little left over from five years ago, a remnant. But we’re going to get it good this time, and hopefully I won’t have to deal with this again for a long time, if ever.

This time I’m taking it in stride. Getting my ducks in a row, practically speaking, but the emotional component either hasn’t hit me yet, or it’s really just not a big deal the second time around. I guess if the docs were more worried, maybe I would be, but …

Thoughts on Writing from author Elizabeth Berg

Thoughts on Writing from author Elizabeth Berg
For my writer friends – I LOVE this – a facebook post from one of my favorite authors of all time – Elizabeth Berg. Thanks, Elizabeth – I feel the same way about writing!
“Thanks so much to all of you who answered the question about what you’d want to know about writing. Many of the questions you had are directly addressed in the book I did about writing called ESCAPING INTO THE OPEN, available in bookstores and libraries. But just in general, I would say that the most important thing for me to keep in mind is that I write because I need to, and the most important (and lasting) satisfaction comes from getting something I feel onto the page in a way that helps me understand it better. I write to find out, is a way of saying it more succinctly. My best advice is to write because you love it, not because you want to sell it.
So many people ask questions about “process,” as though there’s a formula. There isn’t. One writes the way one falls in love, or decides what to have for breakfast. It’s changeable, intuitive, dependent on the state of the heart, mind and soul at the moment. For me, it works best to take a free fall into trust: my best writing always comes when I don’t plan it, when I don’t know what’s going to happen.
One of the reasons I’ve begun teaching workshops is that I recognize what a strong desire it is to write. In these instances, I serve as a catalyst to inspire women to bring what’s in there, out. I believe writers are born, not made. If it’s in you to be a writer, you can find a way to make it happen.”
                                                                         – Elizabeth Berg (Facebook post)
Happy writing!
       Ginny 🙂

It’s the night…

It’s the night before the PET scan that will reveal whether the 9.4 mm “lesion” on my brain is anything to worry about or not. Obviously I’m glad to have some answer as to why I’ve had such increasingly frequent and debilitating headaches, especially during the past 6 weeks, complete with nausea and pretty much housebound more days than not. I’m hoping for the benign tumor possibility. Or even the post-stroke inflammation/healing chance. Or maybe even a brain abscess? But my docs seem to be worried about metastasis from the breast cancer I had in 2008, almost 4 years ago. Or a new primary tumor. I think I’d prefer the new primary? It’s kinda confusing and surreal actually. I know I do not relish thinking about the PET scan showing multiple metastases in other parts of my body. So I’m not going there. Not yet. No, though it’s 3:30 am, I DO plan to go to sleep soon, asking my angels to guard over me and my loved ones through the next 24 hours. We should know more by then.

Interestingly, during the 48 hours after the MRI results were explained to me by my endocrinologist, then my oncologist, I shed a few tears (and a few expletives!), but after an hour, I became very calm actually. Peaceful even. Somehow, I just know it’s all going to be okay. However it turns out.

Just look at all the amazing gifts of the past two days:

* my husband has blossomed, no, catapulted! into an amazing, engaged helpmate, determined to overcome his own personal fears to stick right with his soulmate through whatever is ahead, regardless of the personal vulnerability and pain. I’ve been blessed with Michael’s adoration and devotion for over 12 years now. I thank God for sending him to me when I was so alone. This is just another opportunity to deepen our connection, share and cultivate even more love, add to our memories of a rich, supportive, warm, devoted marriage.

* Hallie and I have had several poignant, honest, loving and direct phone conversations, and she will be home for a bit this weekend. We’ll actually be celebrating her 23rd birthday (a week early) with all the family! And I DO mean CELEBRATING!  Celebrating LIFE and LOVE and FAMILY! Having Hallie “home” from her new home in Charlotte is a rare treat. And her little dog, Hershey, will join the party! Jen, Jay, Jonathan, Elijah, and new baby Olivia will come, and hopefully Betsy, Josko and Kristina, too.  All the family – yea!! Hallie says she may be able to work from the Raleigh office a week or two if I need her to come home to help out – so sweet! On Wednesday, Hallie sent Caroline and me one of her daily email Bible verses from an app on her iPhone. How happy I am to know my girls have each other for support, and that they rely on God and He/She is cultivating their maturing faith. 

* Caroline’s text message to Hallie and me the same morning after the MRI news was a photo taken from her car on her way to swim at 6:45 am Wednesday – a huge, beautiful RAINBOW!!! The 3 of us group text messaged about how awesome is our God!!! Monday night, before the MRI, when we knew nothing was amiss except I’d been feeling lousy for awhile, Caroline and I had gotten together for dinner, planned months before, at a new restaurant for me, Relish. (Timing is everything – the next day is when I got the news of the lesion.) We enjoyed the carefree kind of mother/daughter time that we empty nesters live for! We celebrated her new job, back with The Link Group, laughed, caught up, laughed some more (both my daughters are quite funny and crack me up quite often!!)  We stuffed ourselves and then completed the excursion with our traditional stop for frozen yogurt (love some cake batter fro yo), as much to extend our time together… until we closed down the place at 10 pm! She’s taking next Tuesday to spend the day with me during her week off between jobs – originally planned for watching movies and hanging with me since I’ve not felt like doing much. Perhaps she’ll be driving me to medical appointments, but, whatever, we’ll be together! And she tells me she can be available for whatever I need. Two of her friends have even offered to bring us a meal! (Michael says we’ll take that, even if we get good news and there are no treatments to deal with! Thanks, Carrie and Chelsea.) Caroline and Cameron’s church, All Saints UMC, is praying with us – thanks Molly, Greg, Mendy, Leon, Laura, and all the rest! It’s so reassuring to know my daughter has such a strong and generous support group. That’s one of the more interesting realizations a parent experiences as their children go out into the world on their own – that they are no longer the center of their child’s universe. Praise God for leading them to healthy, supportive friends and churches! I can see into the future and KNOW they’ll be taken care of, regardless of what unfolds in the months or years to come – this is THEIR experience, too – not just mine.

* My mother and father are definitely worried, but they are being so supportive – keeping positive for me, keeping their anxiety to themselves. They want to be here with me. There will be plenty of time. As a parent myself, I feel their pain. God, be with them at this time. I need to be here for my children, my husband, myself. I thank God that my parents are healthy enough to drive to me when I do make those calls. Their love has sustained me for more than 52 years now. Halleluia!

Then, of course there are my closest friends and family members:Molly, Carolyn, HarDarshan, “the bridge girls”: Connie, Robin, Carolee and Susan. Connie is “my longest thing”, as I call her – the person closest to me and still in my day to day life, even though we’re miles apart, for the longest time – since we were freshmen ADPi pledges in college. We’ve talked several times a week for the past 25 years, after reconnecting 34 years ago now. We listen to one another with complete unconditional love, asking the hard questions, the important questions, holding the mirror for each to see our lives more clearly. Thank you, Connie, for ALWAYS being there. How wonderful to alternate and share the roles of supporter and supported like a fluid, easy, graceful dance.

Wednesday I talked to the scheduler and requested a late morning Friday PET scan. (I had another appointment Thursday, and Michael is off on Fridays, and he definitely wanted to be with me.  And I DON’T do mornings well.) They called me Thursday to say there was only one available appointment Friday – it just happened to be at 11:45 am!  PERFECT!  AND Dr. Graham (oncologist) wants me to bring the CD-ROMs with me and he will work us in tomorrow afternoon to go over the results! So no agonizing over the “maybe this, maybe that” over the weekend!

Wednesday night, Michael and I had our workshop with Fran Wellgood, where we study the application of metaphysics in our lives. What an awesome group to be with at this time! The love and support and my calm and radiance (their words) blessed the entire group and just swirled good, loving energy around and around the room the whole evening! We definitely left feeling uplifted and empowered to face our own unknowns, our own fears, with faith and assurance in the Creator! Thanks to Fran and the Wednesday night group.

* I’ve been working for the past 6 months on my high school reunion to be in Little Rock, Arkansas the end of June. I’ve been on Facebook a lot and have reconnected with many old friends. I’ve enjoyed frequent communication with the planning committee members, who have become quite good friends even though I didn’t know them well in school.  I recently got added to Kenneth Mont’s “Inner Soul Room” prayer warrior Facebook Group. Over Easter I found myself drawn to reading all the scripture and prayers written by such strong Christians of faith. I have found my strength for the 21+ years of living with Chronic Fatigue Syndrome/Fibromyalgia through personal yoga and mediation times, reading spiritually uplifting books, meditating, praying, but without the health to attend morning worship services, have missed the community of faith. Who knew that Facebook would elevate my spirit so – would provide constant posts from many of the 2000 members so that anytime I need a shot of Jesus, I just click and read! Or listen. Tonight someone posted Avalon’s song about praying, with a montage of children, adults, brothers and sisters in Christ praying. I “shared” that on my wall. So I can find it and play THAT whenever I want! Thank you, God, for Kenneth Monts, music, and this amazing group of prayer warriors. 

* Facebook in general has, in 48 hours, linked my friends and family to spreading the word of my/our situaton to their friends for support. The outpouring of love and calls and texts and emails has been amazing already! And this “lesion” could be NOTHING!  ESPECIALLY with all these prayers uplifting me!  I’ll bet it’s being zapped before I go in the tunnel – or whatever a PET scan does! Thanks for technology, emails and Facebook.

So, I must get to bed. But I just want to say, on this evening before I get results, that I am grateful to you all and feel totally loved and supported. And I KNOW that whatever I will face, I will be blessed and led to make choices that are prefect for ME, and that the results will also be perfect for ALL. I am staying in the present and acknowledging all the gifts life is presenting me in EACH AND EVERY JOYOUS MOMENT! I hope to nap during the PET scan. And if I can’t sleep, I’ll certainly be breathing in love and breathing out fear, singing and chanting mantras of worship inside my perfect brain! Thanks be to God!