What a poignant essay. I love the straightforward approach, so matter of fact, so true, so full. Lovely.
by Ani Tascian
My dad had just finished what would be the first of three full rounds of treatments for Stage IV lung cancer. It was July 9, 2009 and this was his surprise birthday party. I pinned the rose boutonniere, carefully ordered two nights before, on his lapel. The multi-zippered jacket he was wearing was more Euro-looking than I was used to on him, most likely my mom’s purchase. “I’ve lost weight,” he said, rubbing his ribs with both hands and smiling, trying to make a joke but falling short. I smiled back and kissed him on both cheeks, “Happy Birthday, Baba.”
My younger sister Stephanie wasn’t speaking to me. “What is wrong with you? Why aren’t you helping? Aren’t you ashamed of yourself? Your father has cancer and you can’t help throw him a party? I don’t care if you have three-year old. We’re all busy.” My sister…
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I am most happy to share the words of my son-in-law, The Reverend Cameron Merrill, as we Christians begin our Holy Week. May this week speak to your heart, renew your hope, and fill you with God’s never ending love. Amen.
March 29, 2015
Text: Mark 14.1-15.47
Even if you aren’t a regular at church, you can tell that everything is all mixed up today.
We gathered outside.
Somebody handed us a bulletin and a palm branch and told us to get in line.
We all processed in, together, instead of just the pastors, the acolytes, and the normal procession.
Even now, the sermon seems to be coming before the scripture reading.
This is not a normal Sunday.
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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?”
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.
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.
Welcome to my blog, where you can expect to find posts on a variety of subjects, though most of my writing tends to be a bit pensive, thoughtful, reflective, kinda like me. However, I do enjoy a good laugh and might break out into some humor if you’re lucky.
I consider motherhood my greatest joy and may write about my daughters, now grown, and my grandchildren. I have endured almost 25 years of a debilitating chronic illness and writing has been a cathartic process for me throughout the years. Any posts addressing such topics are, hopefully, an inspiration instead of a downer. Optimism is also my nature, despite many bouts with depression.
I love the beach and spend as much time as I can at our little beach home, Wake and Sea, at Holden Beach, NC. It is here that I get my batteries charged and my best writing done. My primary residence, however, is in Wake Forest, NC, where I’ve lived since 1988. I love this town. The quaint locale, like Mayberry when I raised my girls, has grown right before my very eyes. We used to have to drive to Raleigh for a modern grocery store, down “the bumpy road,” past horse farms to get there. Now Wake Forest sports shopping centers, drug stores, a Wal-Mart even; gas stations, multiple schools, a revitalized downtown, and so much more. Mostly, this is all good. Yet I love to reflect on simpler times, even if memories embellish a nostalgia more storybook than factual. I mean, why not? That’s just one of the reasons I love being a writer.
Prompt writings are a particularly fun for me. These are timed writings where you cannot stop the pen from moving, the thoughts from flowing, morphing into surprises until the ding of the timer sounds. A true mix of fact and fiction, the words that find themselves on my pages often, usually, surprise even me. Take these with a grain of salt. I do!
Thanks for following. Comments or questions are always welcome.
October 26, 2014
Nana’s 79th Birthday
I had an insight this morning: Mom “reaching out” from her 79-year old vantage point, longing to share, impart, connect with the subsequent generations of her family. We roll our eyes, take in some things, but hurriedly, slightly irritated at the incessantness of it all. Some stories some of us have heard a hundred times and we glance at our cell phones or a book from the coffee table as we pass the time at her townhouse. But today I stretch out on the couch, mouth closed, eyes shut, listening as she yearns to impart the old stories to her grown grandchildren. Do they remember? Have they already heard? Are they simply on overload after having looked, obligingly, at the many scrapbooks she got out earlier? It doesn’t matter to Nana, who insists on telling it so the grandson-in-law will also know, the son-in-law, before it’s too late. Before she forgets. Before she is relegated to perfunctory visits without substance. Before she fades into … oblivion, or is no more.
Tears come to me now, sitting right behind my eyelids as I pen these thoughts. One day I will miss this vibrant, opinionated, spunky, wise woman. I have been so blessed to be her daughter. I am so blessed to watch her age with vim and vigor. To hear that she walked the waterfront, did her yoga, went to art class, history class, book club, choir, the Democratic community meeting in her small town. She runs circles around me, and has for a while now.
We take her out for a birthday dinner celebration at an upscale restaurant on the water and she orders a filet mignon, as do I. My husband orders a nice bottle of Pinot Grigio and she chuckles, remarking how she happy she is to be content with her little single serving bottles of Sutter Home, one per night. But she quickly balances that with appreciation for this “good wine.” She is a master at social graces.
She smiles and marvels at the growth of her first great-grandchild, being spoon-fed pureed organic butternut squash in the high chair. The eight month old picks up puffs, pincer style, finding her mouth and squealing with delight. Mom grins and squinches up her nose. “Isn’t she just precious? I can’t get over … “
Happy 79th birthday, Mom. I love you completely. I treasure your stories, your depth, your life. I treasure our connection, your undying support of me and mine, the loving intentions behind your actions, the enthusiastic, lively woman you are and have always been. I’ve walked in your shadow, and I’ve soared while you’ve lifted me up. There is no bond quite like that of a mother and her daughter. Because I’ve been so well-loved, I am able to feel a depth of love for my own that has often made me weep with poignancy, allowed me to coach them through their trials with available attention, to bite my tongue and let them grow on their own when that is called for. Because you have loved so well, you will never really end, Mom. You will live on in the lives of your progeny, even if we forget some of your stories, even if we don’t get to hear them all, even if we don’t get the chance to understand the whole complexity of the life that made you you.
Today we celebrate the loving matriarch of our family as she enters her eightieth year of life. I bow in honor. I smile, tears lurking right behind my eyes as I imagine what it must feel like to be turning 79, what it will feel like when I am unable to punch in your phone number and have a nice long chat. If you have fears, claustrophobic gasps from time to time, please know I kind of understand. Know you are not alone. You can share these feelings with me, or let them pass without remark if acknowledging them is too unsettling. Just know I know. As best I can at 54.
Thank you, Dani, for this post – a reminder of where we were a year ago – meeting favorite author, Elizabeth Berg. What a pivotal weekend! xoxo
On August 16, 2013, I kissed my husband curbside and anxiously entered the lobby of the Hyatt Regency Chicago. I was wearing my favorite jeans, a polka-dot blouse and my black pumps, the ones with the large leather bow near the toe. But the space felt wrong, like the cafeteria on the first day of school: a virtual minefield of social suicide and no map to guide.
I looked around, knowing full well I would find no familiar faces, but hoping I could spot aspiring writers, that perhaps our hearts would seem familiar to one another. And after a few trips up and down the stairs, I spotted them. Comrades in pen. Soldiers of prose.
We were all nervous. Sizing up the space and each other, then scanning the large area for a face we’d seen only briefly, if at all: that of Ms. Elizabeth Berg.
I had met Elizabeth…
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Anne Lamott’s words always speak to me, and so I will share her words from today:
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 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.
Tuesday, July 22, 2014, 11:11 am
Prompt: “Interior Vision” 20 minutes
Interior vision happens when we stop the madness of the world to dwell with what’s inside our very cells, our breath, behind our eyes where luscious sunsets melt their beauty, trickling rose and orange down into our very souls, at the cellular level we cannot see, cannot fathom, yet feel all the same.
Interior vision. With interior vision there are no blind spots, only more and more mirages that manifest into truths you feel with your very heart, way down deep. You think, “Aha! Truth!” But as soon as you think it, “it” dissipates into a thousand glass shards, reflecting light that bounces all over the place, like too many kids on a trampoline at one time. Truth ricochets from one side of your head to the other and you smile as you reach for it yet again, it was so profound, you almost had it, almost had it!
Damn. You lost it, but it felt so good. You felt so good for a second or two. One with the Divine, only lasting as long as the flutter of a soft breeze in the kelly green leaves of the mighty oak, planted solidly in the earthy ground, roots running long and deep, locked into the core of mother earth. And so you ground yourself again, resuming the long, slow, deep breathing, inhaling love, exhaling fear; inhaling peace, exhaling fear; emptying your mind of worldly thoughts of tasks that beckon you away from connecting with this interior vision. What’s that about? Why so elusive?
Ahhh. Breathe again. More deeply. Even more deeply. Light the incense to help you find it again. Hold that crystal quartz, the malachite, the rhodocrosite maybe? Inhale the Nag Champa fragrance and close your eyes and make a path, a space for interior vision to come forth, to blossom. Inhale “sat,” exhale “nam.” “Truth is my identity.” Breathe in time with the soft instrumental yoga music in the background, a clear sapphire pool of answers as you dare to stick one toe in. Not ready? Inhale deeply, exhale even more, with a full sigh if you have it in you. Empty out, empty out the garbage of your sticky life, your busy mind. Let the soft low beats of the tabla, the plucks of the harp, the lilting bass clarinet sing you once again into that quiet place where interior vision can emerge. Where truth rises up, a single image loaded with paragraphs of inarticulatable messages from spirit.
I am the smiling dolphin rising from the sea, nodding genuine loving-kindness and approval to the thirsty me on the shore. It is good. We are one. We are all One. Mere drops of the same healing ocean. There is hope. At least for this moment in my interior vision.