“Mothers and their children are in a category all their own. There’s no bond so strong in the entire world. No love so instantaneous and forgiving.” Gail Tsukiyama, novelist
I love this piece written by my Holden Beach Writer’s Group friend, Joan Leotta!
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.
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.
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.
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.
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.
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.
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.
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.
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.