So…

The question dangles in space and remains unasked.

I could wait, but I don’t. It’s easier to provide an answer because most people are uncomfortable asking. There was a time I felt the same way.

Until I was 22, I never thought about epilepsy, other than when I noticed a girl in my church group wearing a medical alert bracelet. I asked her about it and she told me she had epilepsy. Then she said she didn’t want to talk about it and walked away.

I felt like a jerk for asking.

There was one other time. Before lunch, a work colleague screamed and fell to the floor, her limbs curling up tight and eyes staring without seeing. It was frightening. No one knew what was wrong or how to respond and someone said she had epilepsy.

When she came back to work, she wouldn’t look at or talk to anyone. It appeared that shame was somehow attached to this brain disorder—so I didn’t dare ask her the question.

Then I learned that this brain disorder has been part of my life forever. And I refuse to feel embarrassed or ashamed.

So…what’s it like to have a seizure?

The answer is complicated. There are more than 15 types of seizures, and I can only reflect on my own experience.  (The Epilepsy Foundation is an excellent resource if you want more specific information.)

When I was 22, my 1-year-old daughter was taking her afternoon nap. My husband was off work that day, so we took a momentary reprieve from parenting and sat on the sofa to watch some trashy daytime TV.

I awoke feeling hours or maybe days had passed, with a vague awareness of my surroundings. The sound of a muffled siren. The unstable sense that I was rocking back and forth. Something hot and plastic covered my mouth and nose, and I promptly attempted to pull off.

I felt worried eyes from a dark corner. Or maybe I saw them, it’s hard to say. My husband. He said something about having a seizure, that I was in an ambulance, but I didn’t believe him. My head hurt. I slept.

I awoke, this time to a bright light in a strange room where my dad sat in a corner. He had the same worried eyes. My head hurt. I slept.

I was told I had experienced a grand mal—now categorized as a “generalized tonic-clonic” seizure. I didn’t believe them, although my very sore, very swollen tongue that I had bitten during the process convinced me that the seizure had actually occurred. I was a bit of a tough sell.

When a seizure seems to come out of nowhere, often the assumption is that the cause is an acute condition. Like a brain tumor. I was blissfully unaware of this dire possibility while my brain was being scanned. Really, I was more focused on my incredible headache. The CT scan and MRI revealed nothing life-threatening, and my family could breathe.

Later that night, an EEG determined that the cause was epilepsy. Something I most likely have had since birth.

I had often experienced the feeling that one side of my body was detached from the other, like my arm and leg and half my face belonged to someone else. The sensation lasted ten seconds or so, and then went away. Most often, I felt that way as I was falling asleep. It didn’t scare me; I thought it was my body’s way of saying, “Good night.”

When I was in the emergency room, my dad asked me why I never told him or my mom about the seizures, or at least, the weird feelings I described.

There was no reason to say anything, because I assumed everyone felt that way when they were falling asleep. It took 22 years to learn that no, not everyone feels that way when they fall asleep. In fact, most people don’t.

Thirty years later, I still find it disconcerting that there is this black hole in my memory, a lost puzzle piece that will never be recovered. I don’t like that I didn’t know what happened to my body, how I affected the people around me, or anything after I sat on the sofa that one sleepy afternoon.

My family and I have been fortunate, because epilepsy hasn’t slowed me down that much. Still, I worry sometimes.

I worry when I change medication or can’t sleep. I worry when I gain or lose weight or go through hormonal changes (hello, menopause!) I worry when I am surrounded by blinking lights—including those intermittent flashes of sunlight that blast through the car windows as you drive. Those are common seizure triggers, and even this many years later, I fear waking up in the emergency room again.

Having epilepsy is constant reminder that I cannot always be in control, or do everything myself. It has taught me to ask for help when I need it. It has forced me to get enough sleep and pay attention to my health.

So, I wear a bracelet in case something happens. I talk about my condition with family and coworkers and anyone else who might be interested, so if a seizure occurs, they will understand what’s going on. I don’t want anyone to feel embarrassed or ashamed to ask me questions. I’m certainly not embarrassed or ashamed to answer them.

Searching for the perfect scarf to wear with my new fall coat, I found more than something warm to wrap around my neck.

Because I am particular about what I want, I could not find a scarf that I liked. When I liked one, it did not match the coat.

I decided to make one myself. Never mind that I didn't know how.

As good fortune would have it, a friend of mine crochets all the time. She escorted me to the store and I loaded up on yarn, shiny hooks and channeled her can-do attitude. It was slow going at first, as I worked rows and rows of looped fibers, dropping stitches here and there, then ripping everything out and starting over again.

I told myself to be patient, and I got the hang of it. In gentle rhythm, I counted loops and stiches: one-two-three-pull through, AND one-two-three…

The rhythm was not only that of my fingers pulling up yarn-it connects me to the rhythm of my mom's knitting needles as she creates beautiful sweaters, hats, blankets, purses and scarves-daunting projects when I compare them with the simple scarf I wanted to make.

Crocheting unites me with memories of my grandmas, too. Each crocheted in her own unique way-one following perfect, particular patterns in well-matched, subdued colors, the other using a free-wheeling technique that featured bright colors like PURPLE! and PINK! that sometimes matched and other times, not so much. My grandmothers painstakingly created blankets for my sisters and me. Those same blankets-some from childhood-still keep us warm while we watch TV or read or sip coffee while sitting in a favorite chair. My mother-in-law also spent a lot of time with a hook and yarn. She no longer has the vision or dexterity to continue her craft, but the lovely afghan that she carefully matched to our furniture is a testament to the work of her hands.

As I work my scarf in the early evening, I find it comforting to revel in the memories, sensing each of the women I love reaching through time-giving just one more warm hug before saying goodnight. For these reasons, crocheting has become a bit of an obsession. I hope to teach my granddaughter and grandson to crochet someday.

Ours will be quite the legacy-four generations, linked together by loops of yarn and warm hearts.

Roto-Beam fan, circa 1940-1950, made in Chicago

Nothing says summer like the steady hum of a fan motor as it creates a breeze, even on the most breezeless of days.

I am sure I can thank (or, in my husband's case, blame) my parents for creating this association, most likely from my infancy. It seemed there was always the soothing presence of a Roto-Beam fan on top of the dresser in my room. We had several of these fans-which are the fans to which I compare all others even a half century later. My great-aunt and her husband owned the fan factory in Chicago. The factory closed in the late 1950s or early 1960s, but the leftover fans circulated around our family for decades. I even brought a floor model into my marriage. Over the years, that fan helped us survive our pre-air-conditioned summers, dried numerous rooms of paint and lulled me to sleep night after night.

I wish we still had it.

The fan had five black, Bakelite plastic blades that were smooth and cool to the touch--when the fan wasn't running, of course. The blades came together at a center point. For reasons I can't explain, my sisters and I liked to put one finger on the point when the fan was running. Yes, we occasionally went too far and bruised our fingers. We remained undeterred. It was worth risking life, limb and finger for the tactile thrill.  

Even more fun was talking or singing into the spinning fan. The blades chopped our voices as they chopped the air, creating a crazy vibrato and forcing the sound back toward our giggling selves. We sometimes tied streamers to the cage surrounding the blades to watch them flap in the breeze during our afternoon "naps."

I distinctly remember that fan being a lifesaver the summer I started a chickenpox epidemic in our neighborhood. I was 10 years old, itchy, hot, miserable and incredibly irritated that I couldn't be around anyone for two weeks. My mom parked the fan in front of my bed and its ever-steady hum helped me relax and stop scratching long enough to sleep.

I don't know what happened to the fan. It may have finally given up-although I doubt it. I found some working models on eBay, but am not yet willing to trade $200 for a fan that is far older than I am.

Other fans have come and gone. They moved the air with an adequate hum-but ultimately, none of them measure up.

Were Roto-Beams the best fans ever? In my mind, yes, but that's nostalgia talking. On the other hand, they seem to generate interest on fan collectors' websites. Who knew people collected fans? Would that make them fans of fans?

I know I am.

I've been scanning gardening books and catalogs since they arrived the day after New Year's, dreaming of colorful English gardens, bushels of sweet, ruby red tomatoes and brown bags loaded with renegade zucchini. Each time we were pummeled with ice and snow, I took refuge in my gardening memories.

It seemed that white stuff would never go away. Yet with the exception of a few stubborn specimens, the omnipresent snirt* piles in my neighborhood dissolved last week, giving way to sunshine and somewhat warmer temperatures.

My husband and I took advantage of the weekend's spring weather to begin work on our weather beaten yard. My perennial garden looked especially forlorn.

My perennials and I are the oldest of friends. We visit all summer and regretfully head our separate ways as the north wind signals autumn's return. The winter is long, cold and silent, and I can't wait to reunite with my garden. To see green rather than 50 shades of gray and watch buds open to reveal bright orange, yellow, purple and pink. To sit nearby and listen to the breeze rustle through the grasses and the bees' symphonic hum as they gather pollen. To carry the sweet scent of dianthus in my hair, and smell the warm earth in my clothes.

Donning purple work gloves, I commenced the spring reunion ritual. Cutting hollow lily stems that resembled abstract sculptures and pruning multiple tiers of tattered brown foliage- from tall grasses and overgrown catmint to nearly petrified remnants of black-eyed Susans, my knees and hindquarters alternately sank into the soft ground. Absorbed in clearing and piling the dead stuff, I nearly missed the treasures hidden below.

Tiny green leaves emerged from the soggy soil, looking for a bit of sunshine and warmth. Several crocuses joyfully lifted their lemon-colored faces to the sky, welcoming spring with open arms. I had forgotten how lovely the crocuses are, dotting the landscape with their cheery presence and paving the way for daffodils, tulips and other harbingers of spring.

Gardening is good for the soul. It reminds us that beautiful things come from humble beginnings and connects us to the earth and The Creator. Gardening pulls us out of ourselves as we gently tend to our floral (or vegetable!) friends through sunshine and shadow, rain and drought, winter and summer. Gardening grounds us in the present and gives us hope for the future.

*Snow + Dirt = Snirt

No one could have predicted it. Why would they? My daughter and son-in-law have two beautiful children. During her pregnancies – as well as before and after – Kate was a model of health, eating well, sleeping well and running every day, even within days of delivery. Her daughter and son were born healthy and active, too.

Nothing could have prepared any of us for her third pregnancy – a stillbirth. Even after a year, the loss lingers, wrapping itself around my motherly heart.

Nothing could have prepared me for the phone call I received that morning, just after Kate saw the obstetrician for what should have been a routine checkup. At first, I couldn’t understand her words through the sobs.

Silently, without warning, the baby’s heart has stopped beating. Her little son, our grandson, was dead.

What could I say to my broken-hearted daughter, knowing she would go through the birth process – but when there should be joy, there will only be sorrow?

What could I say to my son-in-law, Cody, a highly trained military officer who manages crises and fixes problems as a career – knowing he would stand helplessly at her side, trying to offer her comfort despite his own crushing loss?

I am so very, very sorry, was all I said. Do you want us to come and be with you? No, she said. Wait. She would be OK.

Kate asked about a baby I lost more than 25 years earlier. I was only eight or 10 weeks along, but in my mother’s heart, I believe the baby was a boy. I didn’t want to think of him forever as “the miscarriage” or “the baby I lost,” so I named him David. I suggested they might want to name their baby, too.

Later that night, the doctor induced labor. My husband and I barely slept, waiting to hear news that she came through all right. When I did sleep, I woke gasping with fear from distressing dreams of losing my daughter.

Nothing happened until late the next morning. Kate was fine, physically anyway. They named the baby Wyatt.

Neither Kate nor Cody really wanted to talk. Truthfully, I didn’t want to talk, either. In the haze of my nightmares, I connected to Kate’s pain. Yet nothing I said or did would make her feel better. I didn’t see any immediate resolution to my own emotional rollercoaster of anger, sadness and emptiness, either. 

I turned to what I know: research. I made some phone calls. I wondered what traditions and support systems were in place to help parents whose children are miscarried or stillborn. I learned that often, these parents in particular suffer from disenfranchised grief – their losses go unrecognized by faith or social customs. However, as medical and psychological specialists realize the profound impact this loss has on a family, this lack of recognition is changing in the Jewish community and in general society.

Ron Wolfson, PhD, Fingerhut Professor of Education at American Jewish University, discusses the Jewish response to stillbirth and neonatal death in a blog on Kveller, based on his book, A Time to Mourn, A Time to Comfort. He writes, “The family whose newborn dies should not be denied its community. It is also extremely important, especially for the father, to allow permission to do nothing else but mourn during the shiva period.

“Both parents will react different to the loss, (but) it is particularly important for the father to recognize his loss, for it is no less real than the mother’s. When the father is treated as a mourner, he is relieved of the burden of ‘being strong’ for his wife. He has a specific set of ritual tasks to do that encourage him to confront the magnitude of his loss in all its dimensions.”

Rituals are critical for helping us through the pain of loss and grief, to help us know we’re not alone in the darkness. Without a funeral or memorial service, my family just pushed through life without fully acknowledging what had happened, or how we each felt about it. I wanted to be strong for my daughter and son in law, to wrap my arms around them and “make it better.” This was new territory and I didn’t have a map, leaving many emotions unexpressed – unusual for me and for our family, too.

I started writing this blog – then left it unfinished. The words were inadequate. The timing wasn’t right. The wounds were too raw. My notes gathered dust in a file folder.

Last week, I felt sad for no particular reason. My husband was feeling inexplicably gloomy, too. I talked to my daughter, who was also feeling out of sorts – and then she realized it had been a year almost to the day of Wyatt’s death. Our brains may not have remembered, but our hearts knew.

I searched my files to find two shadowy images, the sole evidence of my third grandchild’s existence. I strained my eyes, looking for features that just aren’t visible in the ultrasound, made less than a week before he died. What color were his eyes? Did he look like his sister and brother? What would his talents have been? I believe in heaven, so I imagine him there and hope he and his uncle found each other through the miracle of a spiritual family connection.

Maybe it will be better next year. I marked Wyatt’s birthday – for lack of a better description – on my calendar, to honor his memory each year. More important, I want to let my daughter and son-in-law know that I remember, so they know that Grammy loved Wyatt as much as they did.

I was captivated last week by a blog post about photographer Mark Nixon's book, "Much Loved," which features photos and stories about well-worn and still treasured stuffed animals - many of them Teddy bears.

Later, at home, I went immediately to one of my bins-of-treasures stacked against the basement wall and pulled out my dear friend, Abraham.

He was my Christmas gift when I was 17. I asked my mom for a bear that year - perhaps it was a way to embody the spirit of my childhood, from which I was rapidly departing. I remember opening the package and squealing with delight at my bear's furry, slightly protruding belly and sweet, soulful eyes. I named him Abraham. It suited him.

A few weeks later, he was at my side when I was in the hospital for a thyroid condition. I parked him on the pillow next to me during the day and snuggled him close at night. I had better things to do than sit in a hospital bed for two weeks. Things like hanging out with my friends, editing the school paper and celebrating the final semester of my senior year of high school.   

The thing is, if the two of us hadn't been in the hospital - Abraham never would have introduced me to the Charming Young Guy who eventually became my husband.

One night, the Charming Young Guy - a nursing assistant - came into my room to check my blood pressure and temperature. He spotted my brown friend peering from beneath the starchy white sheet that covered us both. 

"What's your bear's name?" he asked.

I told him. 

"Well, why isn't his name Ted?"

"It didn't suit him," I said. "He's just an Abraham." 

 "My name is Tedd," Charming Young Guy laughed.

Fortunately for me, Charming Young Guy had a sense of humor. And, after we were married, Abraham kept watch from a pillow perch on our bed all day, and - painful as it is to admit - slept on the floor at night. He eventually went to live on a shelf, and then in a bin with some of the bear siblings who came to live with us over the years. It's a challenge to leave any of these beloved bears out in the open - their lives would be endangered by the whirling dervishes (our dogs) whose instincts cause them to shred every stuffed animal they meet.

I wonder - do you keep some beloved vestiges of childhood stashed away? Whether you had a bear, a bun-bun, a blankie or doll, what stories come to mind? As evidenced by the Nixon's book, it doesn't seem to matter how old you are. The memories of that special object can bring comfort to your heart. 

Who knew?

Teddy bears have Jewish roots!

Teddy bears are the stuff of American folklore - but did you know the first one was created by Brooklyn shopkeepers Rose and Morris Michtom? According to an article by Gilbert King in Smithsonian Magazine online (Dec. 21, 2012), Jewish couple heard about a hunting trip during which President Theodore Roosevelt refused to shoot a bear that was tied up, stating that it would be unsportsmanlike to do so. Rose, a seamstress, stitched a bear from velvet, which Morris placed in the shop window with a sign that said, "Teddy's bear." Many people asked to purchase the bear; the Michtoms, thinking they needed permission to use the name, sent a bear to the White House with their request. Roosevelt gave permission - and the Michtoms eventually formed the Ideal Novelty and Toy Company.

This gray Monday morning has faded into a grayer early afternoon. There is much to say, but the words drift into view and then disappear before I can discern their shapes or meanings. Loss is like that. Perhaps that's the reason for tears - they fill the void when words fail.

My friend, Bonnie, died a couple of days ago. Cancer was the culprit. It took the life of this feisty woman and left those who knew her shaking their heads in sorrow and their fists in exasperation - though we would not wish for her suffering to continue, either.

Bonnie and I worked together for a little more than six years - I as a newspaper editor and she, a graphic designer. She intimidated me the first time we met as she barked orders and loudly expressed dissatisfaction when copy and photos were late, or weren't formatted correctly. I can hear her vociferous voice punctuating a vibrant vocabulary, her words most often flung like bullets toward the computer that thwarted her efforts, especially on deadline.

Over time, as we worked together, I learned her outwardly peevish attitude was hiding a gentle heart. She was proof that you should never trust a first impression. I don't remember what broke the ice. It might have been my asking about her daughter, whom she adored. Maybe it a long conversation about the benefits of living with a cat - or rather, being allowed to live with a cat.

It might have been when we bonded over Sudoku - me as the student and she as the teacher. She played Sudoku and did a crossword puzzle (the hard kind!) every day. "It's supposed to be good for your brain," she told me. Her puzzle skills were far beyond mine. I was honestly impressed, and told her so.

Bonnie had a great laugh and a smile that spread across her whole face. Her heart beat passionately on the edge of her sleeve. There was rarely any doubt as to how she felt at a given moment. She worked hard, expecting other people to put forth the same amount effort. Her determination fueled my own.

I think we carry little bits of every person we touch. They may have left this world, but their memories bless and comfort us, sometimes even guiding our paths. I am thankful for Bonnie's memory. We tested our teamwork and developed mutual respect for each other. My favorite memories, though, will forever be her gravelly giggle and fiery spirit.