Palliative Care

How quiet it is here. And the room is uncluttered.  The metal scaffolding that held fluid-filled plastic bags and various other paraphernalia are now missing. There are no tubes connected to ports that led into her small-framed body. No beeping, no clamor in the hallway. Instead, a meditative stillness.

Mary Jo lies there, seemingly in a peaceful slumber.

A colorful quilt lay on top of her, pulled up to just below her shoulders. Her hands lay atop the covers, freshly manicured.

Her thick, black Phillipino hair had recently been brushed. I tiptoe over to the bedside and detect a rhythmic movement, a slight swelling and releasing of her chest. Effortless, finally.

So this is palliative care. The sole mission is simply comfort.

I feel a spontaneous sigh of relief that surprises me a bit. Thank goodness.

This beautiful, special person deserves to rest now.

I scan the quilt and see that it has been made by her patients and co-workers at the private boarding school where she worked as the child psychiatrist. Their names and letting-go messages are hand stitched on the colorful patches of fabric. Candid expressions of love. They will surely miss her.

I reach for her hand and hold it in mine. Does she know I’m here? I begin talking anyway, softly, slowly. “Hi, dear friend. You look so beautiful, so peaceful. Same as always now that I think about it. You’ve always exuded that tranquility.” My voice is now of a normal pace.

“Oh, I know what you’re thinking. You didn’t always feel that inside. We both struggled with all of the bureaucratic infighting when we worked together at the practice. But in meetings with others, your face never revealed distress. You could maintain your calm voice, express yourself at an even pace. And they listened to you. Do you know how helpful that was to me? You are my role model for dealing with BS from administrators. What would Mary Jo do? I ask myself. And I try. I really do.”

I suddenly feel somewhat self-conscious. I have interrupted the quiet, betrayed the solemnity of the space, not for her benefit but for mine. I hold her hand for a few more minutes. I watch her breathing and I remain quiet.

Finally I whisper, “I will miss you Mary Jo. I love you. Peace be with you.”

I gently remove my hand and kiss her on the forehead.

My tears don’t come until I leave the room and see the Exit sign at the end of the hallway.

The Secret

“Centenary Methodist Church, that’s where they were married,” I told Tom. “Let’s start there.” My younger brother and I had exhausted our search through our parents’ house for their marriage certificate. The only son, he had taken responsibility for Mom in her final years. At 92, she was now in a nursing home near Tom in Orlando, lost to us in an impenetrable fog. And she was outliving her money.

Dad had been in the Navy during WWII, and it was only a recent thought motivated by desperation that Mom might be due some benefits. My brother was wading through the red tape of the VA. He had dutifully filled out numerous forms. The final requirement: proof of their marriage.

Tom reached the church and was waiting for the clerk to retrieve the certificate. I idly stared out the window of his apartment as an image of their wedding pictures came to mind. What an expanse of time had passed since that day. Married for what? Forty years at the time our dad died?

Just as Tom switched on the speakerphone we heard the clerk’s voice. “There’s no record of the marriage of Mildred Long and Eugene Wallace here,” we heard the woman say. We looked at each other. He had a slight frown but remained calm, as usual. I was throwing my arms upward as I mouthed an emphatic, “What?!” Tom turned away to avoid my oddly contorting face. He needed to focus. “Oh,” I heard him finally say to the woman. “Maybe we have the wrong year.”

“No, I’m sorry. Those names don’t come up in any year.”

We were stumped. “Well, thanks for looking,” my brother said.

Then she added, “Try calling Jefferson City. Ask for Records.”

“Thank you,” we said in unison, grateful to know we weren’t at a dead end.

I googled Jefferson City while Tom picked up the phone again. Government offices, Records: Titles, Deeds, Marriage! I read the number aloud and Tom dialed. Greeted by the standard answering message, he patiently pushed the designated numbers and eventually reached a live person. As he made his request, I began to jot down “Ask if they would be willing to FedEx it to us.” But before I could finish writing, Tom had hung up. “Not there,” he said. Again, we stared into space, then at each other, back into space again. “Let’s get lunch,” I said.

At a nearby sandwich shop we were able to get a bit of a reprieve from our perplexing task. We joked about the possibility that our parents were never actually married. Then we moved on to talk about world affairs, politics, and our respective careers. After lunch we drove by the nursing home and sat with Mom for a while.

She was sleeping, and we no longer tried to rouse her. She was in her final days, or hours. It was alarming how little she resembled my mother. So small. She had always been petite, but now her skin seemed draped over the bare bones. There was no more of the natural curl left in her hair. It had become thin and barely covered her skull. I took her hand, sang to her one of her favorite hymns, This is My Father’s World. Then Tom spoke to her with such gentleness. He as a good son. He’d been  patient with her long after my resilience wore out.

We alternated between talking to her directly, as if she had the mental capacity to understand us, and talking about her in the third person. Finally, I said, “We gotta get going, Mom. Sure wish you could tell us where your marriage certificate is.”

Once back at Tom’s apartment, he phoned the gentleman he had spoken with earlier at the VA to tell him we were not able to locate a marriage certificate. In spite of rumors of the impersonal bureaucracy of the VA, Tom had been fortunate enough to have happened on someone who was sincerely helpful. Now he was asking Tom if there was someone who had been present at the wedding who could validate their marriage. Simultaneously we thought through the short list of relatives in the photos. Only one was still alive. Aunt Dot.

We called our dear aunt, who still lived in St. Louis. After a brief catching up on Mom’s status, I asked her, “Aunt Dot, you were at Mom’s wedding, right?” Without even a slight pause she said, “Well, I was at her second wedding, when she married your dad.”

“What?!” I must have shouted. “Her second marriage? Mom was married before?”

“Well, yes Honey. I thought you knew that. The hockey player. You didn’t know?”

After a few moments of stunned silence, Tom and I laughed. We couldn’t wait to tell our other siblings. What a story! Keeping that secret all those years!

Then I was hit by a wave of sadness. Why did Mom feel she couldn’t share that? Was she ashamed, embarrassed? I wished I could go to her and tell her she didn’t need to be ashamed, that none of us would regard her differently.

But even if she could hear and understand me, I later thought, I should let it be. It was her secret and she wanted it that way. She chose to leave it in the past, and so will I.

The Scream

October brings a crispness to the air, like the apples we would bite into soon.  A hint of color is beginning to show on the trees, though an occasional one has already dispensed with its leaves. Not enough to rake up yet; just little clusters that swirl near the curb with the intermittent gusts of chilly wind.

I put on a jacket this morning to walk Bailey. She investigated the mysterious, moving leaves, then resumed sniffing in the grass. A bush that had worn delicate flowers in the summer was now draped in spider webs. Ah, yes. Autumn. The onset of a darker season. Shorter days, fewer birds, fewer boats. People would begin to bundle up, stay indoors more. I sensed a loss, familiar to me at this time of year. I longed for warmth, the sounds of people enjoying the outdoors, and daylight. We would soon lose that extra hour.

Due to my night blindness, I am considerably more handicapped in the winter months. I tend to avoid nighttime activities, just because I’m uneasy walking through a parking lot or down the sidewalk when the lighting is spotty. Uneasy?  Well, afraid.

Along with the night blindness, I’ve also incurred a gradually narrowing visual field. Normal retinae reflect a vast range of vision. We humans have binocular vision, each eye taking in a roughly circular area in the direction of the gaze, with the two fields overlapping in the center. The brain perceives this as a single image. Because I now have less than 20% of that normal visual field, I miss a lot in the periphery. Peripheral doesn’t mean only to the side; I don’t see above and below the center either. Picture a giant circle that shrinks down to 20% of it’s normal size. Less than 20%, in my case. Because I see through this “tunnel,” things seem to appear out of nowhere.

I’ve been known to step on small dogs, body slam children, run the grocery cart into displays, and totally miss people I’m passing on the street or at a party!  It’s embarrassing; particularly since I don’t appear to be blind. Indeed, I am not. Looking straight ahead, I see very well. People don’t know I’m looking through a tunnel.

All of this renders me on edge. I don’t know when the next unexpected low branch will brush the top of my head; can’t anticipate a rock on the sidewalk, or the unevenness of cobblestones. I try to consciously scan my environment, and this takes a great deal of mental energy and vigilance. Basically, I’ve become a big scaredy cat.

Dave and I munched on left-overs for lunch while I mentally noted the need to shop for soup ingredients soon. We would be needing our soup for the coming days of cold weather. I was beginning to enter my hibernation mode.

I took a nap after lunch. I was a bit foggy on waking up and the house was perfectly still. Was Dave outside?  I rolled myself slowly out of bed, stood up to stretch, then padded into the living room with eyes half open. I looked toward the sliding glass doors, but was taken aback to find only darkness. It can’t be that late, I thought. No, of course not. It wasn’t dark in the bedroom. At this point I wasn’t frightened, just curious. How could this be? As I typically do to make my way in the dark I put my arm out in front, to sort of feel my way, avoid running into things. That’s when I screamed. Not five inches I front of me my hand encountered an obstacle. A person!

I think I was still screaming when Dave turned around to face me. “Oh, my God, Dave!  What the….!”  I was aware of my heart racing,  “Oh, my God!”

He was wearing a black t-shirt, and my tunnel vision could not see beyond the darkness.

“I was just standing here,” he said calmly but a bit defensively. He tires of my jumpiness. But he often just shows up unexpectedly in the room I am occupying. He should be used to my heightened startle response by now. I’ve told him he needs to wear a bell so that I can hear him coming. He’s shown no interest in that, and I haven’t pushed it.

Autumn is not my favorite season. Nor is winter. I try to practice the Buddhist principle of equanimity, accepting the entire spectrum; the warmth and the cold, the light and the darkness, the green, leafy trees and the barren ones. And I know (another tenet of Buddhism) it is impermanent.  Spring and summer will come again, along with daylight savings time.

The Guest House

This being human is a guest house.

Every morning a new arrival.

Welcome and entertain them all!
Even if they’re a crowd of sorrows,
who violently sweep your house
empty of its furniture,
still treat each guest honorably.
He may be clearing you out
for some new delight.

Be grateful for whoever comes,
because each has been sent
as a guide from beyond.

From “The Guesthouse,” by Rumi

“Let’s drive through town. We might see some of Jeff’s friends.” An inner pull on my heart as I hoped for a familiar face. But in the next second, a vague apprehension took hold.

We drove slowly and scanned the streets and sidewalks adjacent to the University of Virginia, an area the locals and students refer to as “The Corner.” The familiar red brick buildings designed by Thomas Jefferson had been there since 1819 when he first founded UVa. Expansive trees had likely been there as long. Herringbone brick walkways sparingly crisscrossed the multi-hued green grass. I could see the old hospital, no longer in use for that purpose, and recalled the neuro labs I had attended there twenty years ago. Brain cuttings. Slice, examine, slice examine. Sometimes we found a site of pathology, darkened tissue that aligned with the patient’s diagnosis. But other times the physical brain didn’t match up with the diagnosis. No evidence in the substantia nigra that one individual had Parkinson’s, the diagnosis given based on observable symptoms when he was alive. I wondered back then and I wondered as we drove past, did a resident or even an attending physician assign that label too hastily and look no further? And did the tremors worsen because of the patient’s belief in the doctor? The brain is tricky.

While the scenic university architecture made up the image on one side of the street, on the other side were familiar book stores, the bagel shop, a number of restaurants, and Mincer’s, where students and tourists can buy anything UVa branded. All were adorned with the blue and orange. Our son, who had not graduated from high school, and his “homies” hung out here because they were accepted by the students. Were treated with respect. Probably received a fair number of handouts, too. As my eyes wandered the crowd, looking for smokers, large backpacks, and cardboard signs, my throat closed and my jaw clamped shut. But no signs of J.B., Markus, or Lobo. I let out a huge sigh and placed both hands across my stomach.

Dave offered to pull over and park. “We could walk around some, see if we find anyone.”

“No, not now. We should go on to the house so we can get to Susan’s by five.”

We had moved to Annapolis in the summer of 2015, after retiring the previous December. We were returning to Charlottesville primarily to check on our house, which hadn’t yet sold.

A few minutes later we arrived at Pantops Mountain. It was just minutes from the university and downtown Charlottesville, but the mountain setting created a country-like feel. The property on which our house stood had belonged to Thomas Jefferson, and he had derived the unusual name from two Greek words, pant and ops, “all seeing.” Indeed the views were far-reaching, with vivid sunsets in spring and summer that I always wanted to put on pause.

Once in the driveway my teeth clenched again. The memories here. My open hand reached for my heart. A vision emerged from our first winter in the house after moving from Florida. We were strikingly naïve about the invisible consequences of a snowfall.

“Remember when we thought we were being so clever, and shoveled the driveway at the end of the day?”

Dave remembered. Jeff had been working at a pizza place in town and got home around eleven at night. He started down the steep driveway, which was clear of snow, but now was coated with ice. No broken bones, but lots of bruises. He took it in stride. He was in a good place then, recently discharged from a lengthy hospital stay, long enough for the doctors to arrive at a combination of medications that helped him maintain some stability. For a while.

I took a deep breath as we got out of the car and walked up the steps to the front door. The interior held no furniture. No, only impressions and reconstructed memories. I welcomed some, took them in with a smile. But the protective barriers of tense muscles and shallow breathing warned me to banish others. Another deep breath.

“I’m going to replace some air filters, then pick up branches in the yard,” Dave said. Yes, let’s get to work.

I got the vacuum and dust rags and started in. The cobwebs had multiplied profusely. I swept them and the dead spiders away. A once-over with the Murphy’s Oil in the family room. Windex here and there. After an hour, the odor of cleansers had replaced the stale scent of a vacant house. We locked up and left for Susan’s. We would stay in their guest house.

Susan and Neil live on 50 some acres in Keswick, just outside of Charlottesville. They built an actual “tiny house” across the driveway from their larger but practical home, partly for their son and his fiancé to stay in when they visit. Also, dedicated conservationists, they wanted to demonstrate that they could build a low-carbon, environmentally efficient, solar-paneled home. The 350 square-foot structure is minimalist in its footprint, but the interior is all comfort and beauty. Plumped pillows, tassels on lamps, carefully chosen paintings and mirrors. This was Susan’s doing. She had even hand-stenciled a rug.

With Susan’s warm greeting I felt tears spill onto my cheeks. Her arms encompassed me, held me. She and Neil guided us to the tiny house and we put our luggage inside. Dave and Neil stood outside talking about building materials and Susan and I walked into the kitchen in the main house. I settled into my favorite cushioned chair in the corner and allowed the houseplants to show off their new spring tendrils. Even the familiar antique angel sculpture hanging in the window seemed to be welcoming me.

I had always savored my time with Susan. She had patiently taught me how to make jewelry, even string pearls. She delighted in the birds just outside the window beside me, the foxes that roamed their property, and everything she could grow in the ground. I absorbed her enthusiasm for planting, composting, and generally giving life to new beginnings.

Conversation flowed easily. We talked about her son’s upcoming wedding, former colleagues in a psychology practice where we had both worked, her jewelry making.

“What do you think?” Several pearl bracelets were draped across her graceful fingers. “These are for the bridesmaids.”

“They’re lovely. Isn’t Kate fortunate to have you as her wedding planner/mother-in-law!”

“Tell me about Annapolis.” She was walking toward the stove to make us some tea.

Did I say anything? About Annapolis, or anything else? I only know that at some point within the next few seconds I lost my mind. Literally. Well, no. Not literally. But I lost track of my mind. I was not in contact with reality. It wasn’t as though the earth shook, or thunder crashed. I wasn’t afraid. I was puzzled.

“Where am I? I don’t know where I am,” I said to Susan. We’ve been friends for over twenty years, but I didn’t recognize her in that moment. I was just putting the question out into the air.

“You’re in Charlottesville,” said the air. I sensed someone sitting down beside me. “You and Dave came to take care of some things with the house. We’re in my kitchen. You’ve been here many times.” A glass of cold, what? lemonade, perhaps was extended to me, but then set on the counter.

“Why am I in Charlottesville?”

“I’m going to get Dave. You stay right here.”

And then there he was, sitting beside me. Was he talking to me? Did a minute pass, or was it five? Maybe ten? Then I heard him talking to our daughter on the phone. He listened then relayed her directions. “Smile, “ he said to me. “Can you smile?” I complied. “Raise both arms over your head.” I did it in a sort of robotic way. I didn’t question, or even wonder why he wanted me to follow these commands.

He handed me the phone. “It’s Staci,” he said tenderly, a gentle albeit concerned smile on his face.

“Hi, Mom. Do you know who this is?”

“Of course. Staci.”

“Yeah, it’s Staci. How are you feeling, Mom? “ Soft compassion in her voice.

I think I said, “Okay.”

“And where are you?”


“Yes, You’re at Susan’s house, right?”

I paused. Then, “Yes.”

I think there were some other questions in here that I don’t recall.

Then my daughter cautiously ventured, “Mom, do you remember going to Denver a couple weeks ago?”

“I’ve never been to Denver.” I said. I was sure of that. But of course I had flown my granddaughter back and forth from Denver before she was old enough to fly alone. Again, this memory was concealed behind the black-out curtain in my mind.

“Yes, Mom. You and I flew to Denver a couple of weeks ago.”

“No, I didn’t go.” I don’t remember puzzling over why she might be saying things that were not true. So vague it all was. Yet I believe I felt an opening here. An anxiety, my skin tingly, my hands shaking. A tiny crack in my shell gradually widened. I wrapped my arms around myself, cradled my frightened self as if I could soften what was to come.

“Mom, we went to visit Jeff. We were there with him in the hospital.”

“NO,” I yelled. Raw fear rendered me light-headed. I had the urge to get up and run, but I knew my legs wouldn’t support me.

Then I saw him. I remembered being there with my son. I saw him lying there unconscious, the IVs, the oxygen, all of it came and hit me in the heart.

I was sobbing. “I remember,” I told Staci. “I remember. Oh, God. My Jeffrey died.”

“Yes, Mom. I’m so sorry. Jeff died. You were right there with him. You were wonderful.”

*          *          *

Impressive. What the mind can do. That tricky brain. It surprised me to find that I was susceptible to this mental deception. It’s not uncommon, I’ve learned. Brought on by severe stress, there is a temporary loss of function in the area of the brain that provides us with a sense of self, perspective taking, and integration of somatosensory information. In my case this dysfunction gave me a brief reprieve from my painful, traumatic memory. Then of course I was slammed with remembering, knowing all over again the reality. I lost my son. Perhaps I needed this to wake me up to real grieving.

“Welcome and entertain them all! Even if they’re a crowd of sorrows.”

Slowly, I opened the door.

Dear Jenna

Dear Jenna,

No one else could have provided the support I needed this past year. You, too, struggled with a mentally ill son. You knew Jeffrey, and of our ongoing challenges. And I’d known Alan since he was a boy. We were both shocked when he lapsed into his first major depressive episode at eighteen. Friends before we bonded over a shared helplessness as mothers of brain-disordered sons, we offered compassion to each other that we were often unable to give ourselves. “It’s not your fault,” I told you when you imagined that you had committed some indelible parenting error. “It’s not your fault,” you said to me a month later or so, as I experienced my own horrific wave of self-blame. And so it went.

How long could anyone endure watching a son in such pain? We talked about the impossibility of “letting go.” What did that even mean? Yet you, Jenna, boldly came to see that you could not prevent your son from killing himself. You released him from the obligation to stay alive for you. If he were in that much pain, you would let him go.

But I wasn’t that generous. I didn’t release you. I needed you when Jeffrey died. You were my strength, my reason, my mirror that said “We can get through this.” I leaned on you, and you helped me stay upright time after time. And didn’t I do the same for you?

Why didn’t you call me? You didn’t let me know how much you were suffering, didn’t give me a chance to wrap you up in compassion and pull you up. You walked into that river and drifted downstream without even saying good-bye.

The Dancer Inside

As a three-year-old, I went along when my sister, Susie, four years older, had dance lessons at Madame Cassane’s studio in St. Louis. Mother and I watched as Susie held onto the barre, and followed the teacher’s stern commands spoken roughly in a heavy, French accent. Susie pink leotard and tights, and soft, pink ballet slippers, and her long auburn braids were pinned on top of her head. I watched her check herself in the mirror and smile obligingly when she got a nod of approval from Madame Cassane.

Susie hated Madame Cassane. The worst part came at the end of the class, she said. The girls were to patter around the perimeter of the studio, stop one at a time to curtsy to the piano accompanist, then again at the doorway, where stood their instructor, and say, “Good-bye, Madame Cassane.” Later in the car on the way home Susie would complain and mock herself and the others in a sing-songy voice, “Good-bye, Madame Cassane.”

Mother said I would take dance lessons when I was older.

We moved from one end of St. Louis to the other when I turned six, placing us a considerable distance away from Madame Cassane’s Studio. Susie had quit dance lessons long ago by then, having convinced our mother that she would not progress under the tutelage of that “mean witch.” She had no interest in pursuing dance lessons.

There was never again a mention of my enrollment in a dance class.

Looking back I realize I would not have looked as adorable as Susie did in leotard and tights, not to mention a tutu. In fact, you know those hippos in Fantasia, dancing around in giant tutus, the ruffles of which covered the vast circumference of their midsection? Sort of like that. Mom may have wanted to avoid the embarrassment of sitting there with the other mothers whose daughters were more ballerina-like.

Mother always insisted that I was not fat. A bit plump, she would say. But as we were growing up Susie was much more honest. She liked to call me Fatty Patty then laugh hysterically. Our parents told her that was off-limits, but she found ways to sneak it in. She even bought me a monogrammed pen once, under the guise of generosity. It said “Patty,” on it. I had never been called Patty except by her, and I grew to abhor the name. It’s okay for other people, but if someone mistakenly calls me that (it is a common nickname for Patricia), in the inner depths of me I hear “Fatty Patty.”

When the tune “Blueberry Hill” was popular on the radio, Susie began calling me “Domino.” Mother told her to cut it out. “Why?! What’s wrong with Domino? It’s a game!”

Two more sisters came after me, then finally a brother. The whole family was toward the lean side. Dad was 6’ 2” and thin. Mother was a whole foot shorter and petite in stature. All of my siblings were lean and fit. I was the only one lacking the wing-like shoulder blades, visible ribs, and bony knees.

I wasn’t inactive. I jumped rope, ran, played softball, tag, and kick-the-can along with the other neighborhood kids. I was the pogo stick champion, able to maintain jumping longer than anyone else. But you wouldn’t find me on the jungle gym on the school playground. Swinging on monkey bars was not my thing. I was mortified when we had rope climbing in gym class. While other children zipped up the rope and back down, I could barely hold on to the rope, much less pull myself upwards.

“Tricia can’t climb the apple tree,” I overheard my grandmother chuckling one day as she told Mom. It was true. Susie and my younger sisters were able to grab the higher branches and pull their lean bodies up with ease.

The agony of clothes shopping as a Chubbette continued through my grade school years. I still have vague, unpleasant flashbacks every September when I see “Back to School” ads. I recall being with Mother in the dressing room as she tried to fit me into the plaid, pleated skirts she found so stylish.

And then, in the period of time bridging 6th and 7th grades, I stumbled upon the motivation to lose weight. We moved to Florida, where my classmates lived in shorts and swim suits much of the time. And girls wore not one-piece suits, but two-piece, or even bikinis. Every weekend held a beach party, and there were no cartoon-like hippos lying on the sand or surfing. Also, this was the age of intense scrutiny, both from others and myself. While I was unhappy with my weight previously, adolescence put a new, more glaring spotlight on it. And then, perhaps hormonal changes didn’t hurt. In any case, I slimmed down. I could have looked the part of a ballerina.

Both of my younger sisters took ballet and tap lessons in Cocoa Beach. Years later I asked Mother, why did I never have dance lessons?

“I never knew you wanted to,” she said.

Why have I hung on to the idea that I was deprived of dance lessons? I’ve harbored resentment over this for many years. “All of my sisters took dance,” I would say, mostly to myself but also to friends willing to listen. Did I long to dance? Did I actually have a strong yearning to be a ballerina? Surely if I had I would have pursued it. If I had told my mother I wanted to take dance lessons she would have enrolled me. In fact, she probably would have been delighted.

Perhaps what I wanted was to feel pretty. To wear a leotard and tights, ballet slippers. And yes, tutus! Beautifully sequined dance costumes like those worn by my sisters in their dance recitals. They all had a shiny satin bodice and a flouncy nylon netting skirt. To play the part of the snow queen or a sugar plum fairy in the Nutcracker. I think I wanted to be a princess. Or princess-like. I wanted to try on my dance costume and see my parents’ eyes light up! “How pretty you look!” is what I craved.

So, yes. What I think I longed for was not to take dance lessons. I longed to be seen as a beautiful little girl! To be seen that way by my parents, my grandparents and siblings. And to see myself that way. What I mourn is the confidence; the self-image that I felt was unavailable to me. I wanted to look in the mirror and see a girl who could be a dancer if she wanted to be.

Will Someone Please Turn on the Lights? Part II

If you have Retinitis Pigmentosa you’ll understand this. Yesterday evening as we were getting ready for bed I asked my husband, “Where’s Bailey?” I scanned the room. Our Cavalier Spaniel is always right there with us at bedtime.

I looked right at my husband, already in bed. “Where is Bailey?” I repeated. He smiled, knowingly. “She’s right here.” And she was. She actually was right on the bed beside my husband, maybe three feet away from me.

It’s funny. With my limited visual field I make efforts to scan in a methodical manner, but still I miss huge areas. In the moment I truly think I have covered the entire space.

I blame my brain. The brain is expecting normal visual fields, and if that were the case I would have seen my sweet Bailey. It unwittingly fills in the gaps, but not accurately. After all, the brain is receiving only a small percentage (less than 20% in my case) of a normal viewing area. In this case, it filled in the entire space with the rest of the bedspread, minus the dog.

Sometimes the brain fills in something else entirely. When I was still working as a therapist, I would spend most of the hour looking directly at the client speaking to me. Suddenly I would be surprised to notice a bookshelf or draperies, seemingly out of the corner of my eye. Seemingly, since I really cannot see anything out of the corner of my eye. I had to glance in that direction just to confirm that there was no such thing on that wall. My brain had put it there.

Two Loved Children

“You need to claim the events in your life to make yourself yours. When you truly possess all you have been and done, which may take some time, you are fierce with reality.” Florida Scott-Maxwell

In my exhuberance I was confident I could handle what had been described as the most difficult and most important job, that of raising a child. A daughter, a newborn baby girl lay in my arms. My pregnancy had been marked by severe complications, yet we both made it. I now stared at her perfect, pink face with its tiny bow mouth. I had no doubt about my ability to parent. I knew that because she was so intensely loved, she would grow and develop in predictable ways. And she did.

Five years later we adopted a baby boy. Again, my capacity to love was surely sufficient. Yet this child did not respond in predictable ways to our abundant nurturing. He puzzled us. He was labeled a slow learner, did not talk until age 3. More labels when he started school. Then destructive behaviors, stealing. Acting out his frustrations they said. But we could do this. We channeled him into successes. He was beautiful and wonderful and loving. And defiant. We could not control this child. But we loved him.

He died last April of a drug overdose. Some close friends in an effort to console me said things like, “You couldn’t have done any more than you did.” Or, “You were such good parents.” Then, to shore up their claim, they would point to our daughter.

But what I know is that neither one of my children is a testament to my parenting, or to the amount of love and nurturance they received. To think that I controlled either of them is an illusion. Perhaps I had more opportunities to make mistakes with my son. Did I do everything I could? I’ll always be plagued with that question. What I must claim is that I raised two children. I loved them both.

First Day of School

Clutched in my hand was a handkerchief tied in a knot around my lunch money, a quarter and a dime. My father walked into the school with me. Did he hold my hand? I don’t remember. I was frightened I know. Most children had their mothers with them. My mother was home with my younger sisters, ages 3 years and 1 month.

The school was a red brick building, two stories tall. My first-grade classroom was in the basement. My father led me down the stairs and scanned the numbered classrooms. Miss Conover stood at the door, smiling at the children as we walked in. I recall her hair being a reddish blond color and in a page boy. My father said goodbye to me and left.

Trying to put myself back in that time I conjure up the smell of the lined paper we used to learn to write. There were rows of heavy lines and a dotted line in between. Lower case letters generally only went to the dotted line. Our pencils were large, easy for small, uncoordinated fingers to manipulate, I suppose. I picture wooden desks, with a seat attached. The desk surface was on hinges and we stored our school supplies inside. On top of the desk was an inkwell. We never used the inkwells. Must have been used in earlier years.

I remember feeling a great deal of apprehension about going to the cafeteria on that first day and handing my money to who? Would I know? Would I know how to get my food? Maybe I was nervous about what might be served and whether I would like it. Would I be forced to eat something I didn’t like?

While I don’t remember how paying for the lunch was resolved, I do remember that one thing on my tray was a small light green plastic bowl with canned peaches in it. I didn’t know what it was and was afraid to try it. Miss Conover came over and asked why I hadn’t eaten them. I did try a bite and I think I liked it.

And that is absolutely all I can recollect about my first day of school.

I know that Miss Conover embarrassed me one day. She was annoyed that I had miscopied something from the board.  She raised her voice in anger and scolded me in front of the class.

At some point during that year, or perhaps the summer after my first-grade year, Miss Conover got married. She no longer taught at our school. My mother heard that she married a millionaire. She came back for a visit one day and wore a full-length fur coat. I didn’t run up to greet her and stroke her coat like some of the other children did. Instead, I became invisible in the back of the room. That wouldn’t be the first time I hid myself in school.

Writing from the Inside Out; How to get it out!

I am a member of Words on Water, a writing group here in the Chesapeake Bay area. It has been an invaluable resource for me. Led by Gwen Mayes (who calls herself a recovering attorney), we often start with a prompt for a free write. Sometimes the writing just flows from me. But on occasion, I am stumped! I am suddenly wordless and can’t seem to find my brain.

One such evening we had all received a different prompt. Mine was “How do you practice self-discipline?” I felt a wave of shame wash over my brain and I went I into wordless mode. I am one of the most undisciplined people I know!  How could I write about this? I sat immobilized while my colleagues put their pens to paper and dove right in.

Then I remembered that often it’s helpful to engage is some motoric task. Even doodling can engage the brain’s right hemisphere and put the left into neutral. Laura Oliver talks about this at length in her marvelous book, The Story Within:  New Insights and Inspiration for Writers. I needed to quiet that left hemisphere with its chatter about my embarrassing lack of discipline, and access some creative spark.

I began by writing one word, circling it until I thought of another, then circling another, and so on.


Here is the free-write that emerged:

Have I ever been disciplined? Never!  I have habits that I perform daily. I brush my teeth twice a day at roughly the same time. I shower every day. Those are well-rehearsed behaviors. They don’t require effort. But perhaps they did at one time?

What have I tried to do in a disciplined fashion? Practice Spanish, learn piano, the ukulele, paint, and write. I dabble in all, but disciplined? No. And my lack of improvement shows that.

But wait! I have a Ph.D. I wrote a thesis and a dissertation. Gosh, that was hard work. I kept at it. That was discipline, right? Or did I persevere to avoid the negative consequences of not finishing?  I couldn’t bear having invested so much and not complete my degree. And I really needed the job I had been offered, contingent upon graduating. It was obligatory.

I walk my dog every day, usually several times a day. That’s an obligation, too. One can’t not walk the dog. And I email my graduate school friend, Holly, almost every day. She is counting on seeing it every morning. An expectation.

So I think it’s accountability that keeps me “disciplined.” If I know someone else expects me to write, paint, practice, exercise, put the leash on and go outdoors, then I’m good to go. On my own, I’m out of control!