Seated one table away was what we assumed to be a college student, along with his visiting parents.
We could overhear the low babble and occasional laughter of what sounded like an easy conversation.
“I hope we get that with our guys,” I commented. “I certainly never had it with my parents.” Indeed, neither of us had. I lost my mother at age 17 and was left with a father who was unable to sit still for any normal conversation; Paul’s parents lived several states away, and visits with them were rare.
Our two sons, who were in high school when we had that exchange, are now well into their twenties. And we have enjoyed numerous meals and lively conversations with them. For the most part, our adult sons seem to enjoy spending time with us.
So I was taken by surprise last summer when things went awry during a family vacation in Europe. The trip started out happily enough with a family wedding in Italy. But after we left for France, things started to go haywire.
Each of us was in the throes of a major transition. My husband and I were adjusting to his retirement the month before. Older Son joined us on the heels of completing an intense project—a concert tour with his trio that as “band mom” he had organized and led after a year of planning. And Younger Son was in limbo, awaiting final word on his Peace Corps assignment.
We were all making huge changes, and while we didn’t know it, our relationships with each other were changing too. There were squabbles and showdowns the likes of which we hadn’t experienced since the boys were teenagers. In fact, I felt as though the ride from Florence to Paris took place in a time machine, rather than on a train.
For one thing, our sons were no longer willing to sit back and let Dad lead the way. With three leaders and only one follower, it took us forever to get anywhere. Finally, our younger son grabbed my husband’s GPS and laid down the law. “I know what I’m doing, Dad. Let me lead.” And Older Son, who had been riding the Paris subways for a couple of weeks by this time, had his own ideas about which trains we should take.
And Dad wasn’t the only one being chastised. I was in for some critiquing too, and, unlike my husband, I let it get to me. I will always remember this trip as the one where I walked around Paris with a constant lump in my throat and tears in my eyes. My children didn’t need me—did they even like me?—and there was nothing I could do about it.
Except that there was. After a serious talk with one son and a loud argument with the other (I yelled), and some time apart, we did manage to come together and enjoy each other’s company. But I know I wasn’t the only one heading home with this equation in my head: family+vacation=oxymoron.
Then, Christmas rolled around, and something had changed again. One son suggested that we each cook a dish or two for the family dinner. Everyone liked the idea, and my husband and I were thrilled to share that responsibility.
The transformational moment arrived when the two young men came back from buying ingredients at the grocery store and neither of them handed us a receipt. Clearly, they were taking full ownership for their portion of the meal. Although we haven’t supported either of them financially for some time, in that moment something changed. I saw them more clearly as equals, and Paul and I were no longer just parents, but people too. The resulting feast was especially delicious.
I now know that, tough as that Paris trip was, it helped us all move forward. I realized (and I hope we all did) that the four of us have to keep talking and listening, and that sometimes the most difficult conversations are also the most rewarding.
I’ve also discovered that my relationship with my adult children will always require tweaking and even major adjustments. And though I advocate initiating difficult conversations, there are ways to handle them that don’t involve yelling—or even tears.
Next: Fostering healthy relationships with adult children: An expert weighs in.
(Photo: Gare du Nord train station, Paris.via www.stuckincustoms.com.)
Well, with us it is. My beautiful boy has autism, and being on vacation doesn’t mean you’re on vacation from autism. Not only the usual roadblocks stand in your way, like waiting, costs, and safety. But we are entering the “normal” world, leaving our safe cocoon. And who knows what will happen?
A few vacations ago, boy, did we ever find out what could happen.
It was only three years ago that we left for JFK airport. We’d flown before. Joey was fine, we knew the routine, and brought lots of toys for the plane, treats and books. A little extra clodine to calm him. And off we went.
That year, we got to the airport excited as ever. Nicholas, my typical boy, 12 at the time, was so thrilled he could barely handle it. We were going to Bush Gardens, in Tampa Florida.
We also had front-row tickets for a Yankees spring training game. We don’t go to the stadium often, and unfortunately most times we do, we can’t bring Joey. If he loses patience, it’s hard to leave when the seats cost so much. And to do that to my typical boy is not fair. But spring training would be perfect. We’d be right up close, which would give Joey a lot to look at. It’s more informal than a “real” game, and would cost less.
Our plans were made. We were going to the game and Busch Gardens—acting like a normal family.
They called our flight and Joey seemed fine. We showed our tickets and headed down the tunnel-walkway to the plane. All of a sudden, right at the plane doorway, Joey stopped. No no no, he said. We were shocked. Joey has three words and doesn’t use them often. Loudly, he said, no no no! He would not get on the plane. We tried to coax him with chips and soda. The captain even came out to offer his hat in bribery, but Joey would not budge. When we tried to push him and physically manipulate him to get him in the plane, my beautiful boy wet himself and started screaming. At that point we realized we couldn’t do this to him. We left the airport without going to Florida.
You could have heard our hearts beating in that car on the way home. We couldn’t speak. My son Nicholas was heartbroken, sad, and angry. My husband, the fixer, couldn’t fix this. And me, the mom, who was supposed to have all the answers, had nothing. In my head, all I could hear was, You have to make this work. Or else you will lose vacations to autism, too, and more important, so will Joey.
I got to work with our school district, and with their help and Joey’s home therapist, we tackled a new mission: to get Joey on a plane. And that we did. Everything from going to Westchester Airport (left) at least once a week to see and hear planes, to coloring planes, writing about planes, watching planes on the TV and computer, wearing headsets that made plane noises. Anything that could have to do with planes was done.
That was three years ago.
Just last month, we went to Florida again. Yes, on a plane. And as tears streamed down my face, I called Joey’s school class from our seats and told them, “We’re on the plane.” The yells and screams from that classroom were overwhelming. They acted as if I’d just told them they had won a million dollars.
Thank goodness for these people who worked so hard to help my boy. And Joey–he amazes me. He grows and learns and fights to be part of our world. And works so hard at it, while always staying happy. He can’t complain to anyone about his day or his shirt being too tight. He is silent. And I try so hard to understand him and know what he needs without him saying a word. But I know that I don’t always get it right. My heart is beyond breaking when I think of the loneliness he must endure, the silence.
In fact, he’s becoming a pro. He’s even mastered coming back to our lounge chair each and every time after leaving the swimming pool. That has always been a bit of an adventurous moment, because Joey used to think all the towels, seats, and food near the pool were his to take. This time, he came to us—every time. It was nothing short of miraculous. My back actually hit the lounge chair. I relaxed and bathed in glory of success. It was magic.
This vacation, we were somewhat, yes, “normal.” Joey even taught the bartender how to say ‘soda’ in sign language, and had him serving him soda on cue. How great is that? Next year, I might just have Joey teach him Mai Tai, for me.
I never thought it possible to achieve this quality of life. It was sheer bliss. And as we sit in the house on a cold New York afternoon, home from school because of yet another snow day, Joey and I look out the window. He turns to me and signs ”plane.” Yes, Joey, I’d like to go on a plane too, I smiled, and thanks to your bravery and hard work, with God’s love we will go again someday together. And in a small way, leave autism behind.
My great-grandmother’s garden lay on a narrow street in an immigrant neighborhood of north Boston. Large triple-decker houses filled the tightly packed lots, leaving only a thimble of earth for roses, petunias, and her fecund Rose of Sharon. From her wheelchair, Nana Durgin, my great-grandmother, ruled 21 Otis Street. With three sons in their 70s and a husband long buried, she still called the shots in everyone’s day. Behind her back, she was called the Queenie, but to her face she was obeyed.
Her temperament had been formed in the generation of “lace-curtain Irish,” when watching the neighbors’ business on the porches and street corners was a spectator sport. She grew up in an era of limited opportunity, when reputation and kin connections led to working-class jobs as housemaids, mechanics, and bank clerks. Propriety and authority ruled that world, and she passed on that mental landscape to her family. We all internalized that voice, and by my college years I had made it mine.
When I was a child, my family made the trek north from Philly to Boston about twice a year, somehow cramming eight kids and my parents into our gray Buick station wagon. Summer visits were my favorite, when we stopped to see Grampy and Nana on the way to our Maine vacation. After the squirmy, eight-hour drive over the Pocono Mountains near Stroudsburg, across the Tappan Zee Bridge in New York, and along the Massachusetts Turnpike, we would finally turn into the narrow side-street of their home. First I would spot the hedge of red roses shielding the breezeway from the sidewalk. Our grandfather would step off the porch, stooping to protect his bald head from scraping on the doorway.
The rest of our arrival day was a frenzy of hugs from Grampy, kisses from Nana Durgin’s paper-thin lips, and joyful poking into all the nooks and crannies of that brown clapboard house. So many items came from a different time and held family stories, from the tall kitchen hutch with bins for flour to the coal chute in the basement and the black rotary phone in a special table in the doorway. After a barbecue in the backyard, lots of boring adult chatter, and a stroll through the neighborhood visiting other porches, we would settle upstairs, two or three to a bed, for the night. The ride in the Buick had transported us from our boring ranch-home suburbs to this exotic, theme-park neighborhood jammed with history and hustle.
The morning after we pulled in, I would often wake early and wander into the dining room, gazing at the unfamiliar china and the ornate statue of the Infant of Prague. Under a glass bell jar, a fine porcelain statue represented Mary, Queen of the Universe, standing tall, the world under her feet with snakes vanquished by her weight, a lovely blue mantle clothing her body, and a crown of stars capping her veiled head. On her right shoulder, she carried the infant Jesus, lightly and effortlessly. I would gaze at this statue, not sure what to make of the iconic figure, here in the house rather than in an alcove at church. Even though Nana Durgin could no longer stand, she still carried herself with the same pride of holding up her world of family and household.
As I turned behind me I could look into the kitchen to see my great-grandmother at her morning ritual. Each day, she started off with combing her thin gray hair 100 times—to keep the shine, she always said. Then she would pile the waist-length braids in a neat bun.
As soon as I breathed hard or trod on a noisy floorboard, she would turn around, eyes bright as a robin, and say “Here, come here, I need you to get me some potatoes from the pantry.” Up since dawn, she had already made scones, neatly cut in doughy circles with a drinking glass. All her life, she cooked breakfast for “the men,” who went off to work at the family coal heating business. So we’d eat a hearty breakfast: bacon, eggs and ketchup, with pepper as our only spice.
From where I stood, Nana seemed to take a special pleasure in ordering me to do chores–especially dishes, my least favorite task. Calling my sister and me into the narrow kitchen, she would handily wheel her chair over to the deep white farmer’s sink, filling it with sudsy water. Women in my family did not get manicures; dishes were washed in hot water with no gloves.
Somehow I would maneuver the tips of my fingers into the suds, pulling a cup or fork out of the scalding water and gingerly placing it in the dish drain. Usually my sister Karen was pressed into service as the designated dryer. Her job was to carefully buff each piece of china so it was bone-dry and sparkling.
Of course, Nana Durgin supervised us closely, making sure dishwashing in the family was held to her exacting standards. Many years later, when my mother finally got a Kenmore installed next to her sink, she would frequently say, “Thank God for dishwashers.” Thinking about how many meals it took to raise a family of ten, it was likely she washed and dried a stack of dishes higher than a cathedral.
I also learned years later that it wasn’t just me: each of us eight kids was given the special once-over by Nana. For the oldest boy, Danny, his “Yoo-hoo, come here” came with precise instructions on how to water the prized petunias in her kitchen window-boxes. The flow of the water, the direction of spray, the technique for curling the hose—all were fodder for her commands on the way things should be done. In later years, that same brother began a tradition of arriving early on Mother’s Day to give our mother a flat of petunias, just like the ones on Otis Street.
One might wonder, when we eight Helferty kids visited, how Nana Durgin kept control of such a large brood. But she had raised three sons, in addition to several nieces and nephews. Twenty years later, when I spent college summers at her house, the bossing continued apace. Instead of shining drinking glasses, her chore list grew with my stature. I’ll never forget the day she commanded that I hang the towels on the clothesline virtually the moment I walked in the door. Sulky as only a smart-ass sophomore can be, I pulled out the line and threw the towels over it, tossing them haphazardly in halves. I had almost finished the whole basket when I heard the familiar rapping of knuckles on the kitchen window.
“Yoo-hoo, come here, come here,” Nana shouted. Groaning, I went over to the kitchen steps, looking up at her wizened face through the screen, her lips tight and thin when work was to be done. Her eyes beamed at me and her sharp chin pointed at the line as she stated that I needed to use clothespins and rehang all the towels or they would not dry.
Despite my having survived the rigors of freshman physics and chemistry at MIT, there would be no persuading her that it was a hot sunny Back Bay afternoon, or that thermodynamics ensured enough evaporation to dry the towels. Instead I shut my mouth, stomped on out to the back yard and put a handful of clothespins in my mouth. I rehung all the towels. There are some immovable forces in life, and it seems mountains and Irish matriarchs had about the same weight.
Most of the time, her call of “Come here, come here” meant a chore needed to be done. But sometimes she would gaze at me with her proud hawklike eyes. Reaching past her low-slung breasts deep into a cavernous apron pocket, she would pull out a bright quarter. Nana Durgin would lay it flat on the kitchen table, pushing it towards me with her arthritic swollen knuckles, saying “Take it, take it,” as she rapped the table. Then she would shoo me away, cooing “Go now, go now.”
I don’t remember what I did with those special quarters—maybe bought ice cream from the Mr. Softee Truck or tucked them in a change purse for buying a second-hand book. But in my blue-collar, big-family childhood, there were few extravagances like a secret gift, not for a holiday and all my own. It made 25 cents into a king’s ransom.
Now, thirty years later, I sit enjoying the cool evening breeze and smelling my petunias, on the porch of a Philly house built for and by immigrant workers. The flower-scent reminds me that secret moment with my great-grandmother — nearly as precious as all the others.
I find myself today in a foreign land, a threatening land, a land of anxiety and of disorientation, a place where I must relinquish control, a place I will call “Surrenderstan.” It is not in an exotic location. You can get there by touching the handle of a grocery cart, by sitting next to the wrong person on the subway, by going to the theater or to a ballgame. I got here via the flu, to whose control I was forced to submit, kicking and screaming all the way.
Two weeks ago, at a precise moment on a Saturday afternoon, I got walloped by a two-by-four of exhaustion so sudden and so absolute that it tipped me over onto the bed, clothes on, Uggs dangling over the side. Too weak to kick them off, I stayed in that uncomfortable position for many minutes because I simply could not move.
I soon crossed the border into this land of dependency, of loss of control: Should I ask for help? I never need help. My husband was down at the end of the hall in his study. I could have easily called to him for help. Help me? Not so easy for me to ask. I’m the helper, not the helpee. What do you mean I can’t manage everything?
Resistant still, I toughed it out and pulled off the boots, scurrying under the two blankets that usually keep us warm. I was shivering. This is ridiculous. I should be able to get out of bed and go to the linen closet for another blanket, but I can’t. Finally, I called to Michael. He was surprised to find me so transformed. Fifteen minutes ago, I had been at my desk. He wanted to help. I asked for a throw and the quilted coverlet we use as a bedspread. I was now under four layers and trembling even so.
Although he knew perfectly well where they were, I started telling him where the Advil and Tylenol were, as I called for another sweatshirt and a glass of water. I told him where to find the thermometer (center bathroom drawers, third drawer down, in a plastic holder near the lip balm and Airborne). Wrestling with my internal Control/Surrender toggle switch was a very, very hard fight.
As miserable and weak as I was, I did not want to give in to the flu or to give up my sense that I could do it all myself. I needed desperately to shut up and sleep; yet, in a haze of chattering teeth and quivering limbs, I gave more orders — nicely, but still orders — to pull out the phone cord and to turn off the lamp. He would tell me later he was already feeling marginalized by all my directions, but was also grateful because he had not been sure what to do. Maybe it was because he had a control freak for a wife.
The next morning, even though I was feeling lousy (but without fever or congestion), we made it onto an early flight to Sarasota, Fla., a trip we had long planned in celebration of Michael’s birthday. I reasoned that were I to get sicker, I could just as easily convalesce in a beautiful hotel room overlooking the water, in a bed with Frette linens.
More in my thoughts, though, was that I did not want to disappoint him. He was so looking forward to going back to the Gulf Coast he loves so much and to playing golf in the sun. Before I got sick, I was happily picturing writing, reading, sunshine and exercise. Feeling the way I did, why didn’t I refuse to go? I found I could not say I needed to stay home, ruining the trip, and in a more subtle sense, conceding helplessness.
I spent four days in the hotel room: fever spiking, achy, throwing up, depleted and miserable. I could not walk to the bathroom on my own; I needed help lifting a glass of water to my lips. I needed soup and extra blankets and tissues. Michael took it all on in a loving way, but I could not accept the care graciously. I was angry and ashamed for needing it.
One day, because I was going stir-crazy and the weather was mild, we went for a drive. Out in the soft and soothing air, I began to cry. I started apologizing for making this so difficult for him, for making him take care of me, how sorry I was for spoiling his birthday celebration. He said, no, it was fine.
Had he known I would be this sick, he would have insisted we stay home. He felt terrible that I was sitting in the room all day. We were performing the marital minuet familiar to many of us blessed to be in a long and functional relationship. I know you get this, friends.
Several mornings Michael played golf. I was glad he did: The air in our room was stiller in his absence, and I did not have to deal with his needs around my needs. I could be as sick as I was without having to emit reassuring smiles and little gestures to show we were still connected. He did as much for me: tender forehead kisses, ginger ale, fluffing pillows, saying how much he cared. Why could I not accept this care without feeling guilty?
The night we decided to call 911 because I was shivering uncontrollably, rattling the teacup of hot water and lemon I tried to drink. My articulate husband stammered and fumbled on the phone so much that I felt the need to prompt him — information about my symptoms, where to find my insurance card and license, that I would need my glasses and a pair of sneakers to wear home.
All the while, I was frightened and in tears. I now realize he must have been frightened, too. Still, I could not give up the control. Waiting for the paramedics to arrive at our hotel room, hearing the siren outside, I was filled with shame and cried again, embarrassed to be the cause of such a to-do.
When the EMTs came, they were reassuringly confident and efficient: the kind of authority to which I was able to surrender, at least temporarily. They concluded that what was making me so sick was almost certainly the flu. Drink, drink, drink and I would get better. They said they could take me to the hospital, but nothing about my symptoms indicated that it was necessary. Moreover. I would probably catch something worse there. That calmed me.
By the next morning, I was not much better. Maybe just a bit. Not really. Michael was out on the golf course. I was glad to be able to sit up in bed and doze and read a little. He had made an afternoon appointment for me at a local doctor’s office, at my own doctor’s request. We just wanted to make sure I could not benefit from an antibiotic.
The office was a Gulf Coast affair, yellow stucco and palm trees outside, all casual bamboo chairs and floral prints inside. The doctor was a Don Imus clone in a Tommy Bahamas shirt and khaki shorts. He examined me, reviewed my symptoms and finished by recommending a quick-read CBC and urine test.
I started arguing with him. Why the blood test? Didn’t my symptoms reveal what I had? Why the urine test? I know what a UTI feels like and I did not have one. He looked at both of us and walked out of the room. “You think about it,” he said.
I told Michael I was willing to take the blood test but would decline the urine sample. After a while, the doctor came back in and asked, “What do you do for a living?” I told him and he said, “Look, if I hired you, I would not second-guess you. I am a physician and this is what I am recommending. Don’t second-guess me. It’s a cheap test and all you have to do is pee in a cup.” Tears stung my eyes. I was even trying to control him. I took both tests and the results indicated a viral infection, the flu, even though I had taken both flu shots earlier this winter.
I am starting to feel better, but the recovery is taking much longer than it used to. I had to hand over our grandson’s stroller to his mother when I could not push it up a slight incline on a recent city walk. I have been napping nearly every afternoon. I look wrung out. Exercise is still out of the question.
My trip to Surrenderstan has been instructive, as most travel is. The lesson here has been a chance to look at why the loss of control has been so difficult. In my essay here about Yom Kippur, I said that one of my aspirations for this year was to relinquish control, to let the universe bathe me in its kindness and release me. Based on how I have handled myself with this flu, I see I have a long way to go.
The weekends have been filled with chart reviews that I have done periodically but have now chosen to do with each annual visit. After all, after 25 years of time with a patient, it is helpful to review anew the past and the story of our time together. This kind of work requires quiet time and often becomes diagnostic as the patient’s memory in the present may no longer be in sync with the story told at that first visit years ago. Initial patient interviews and evaluations lasting two or three hours cannot be integrated in the space of that first consultation. It’s customary that I spend an hour on the weekend for two separate weekends with each chart of a new patient, putting the pieces together of a one thousand piece puzzle that has only a blurred picture on the puzzle box to guide me.
I have clues from each woman’s life stage, clues from the narrative of her life, clues from her symptoms, clues from her physical exam and clues from her goals and choices. But the strange work I do diagnostically begins in the quiet hour when I am alone with her story, and work to understand how she became who she is at this time.
I write the story in narrative form in each patient’s chart and it is the writing that distills my thoughts. The next weekend I have the chart with me again, with additional clues from diagnostic tests. For each woman, the original narrative and this new information generally give me the insight I need to create a plan that will work uniquely for her — to allow her to obtain better health and understand the importance of self care.
Medical team building requires that each patient must be the equal partner in her goals for good health care. I have known patients who prefer to just fax their body parts in to the office and have a bit looked over and a blessing made or a treatment prescribed. But, sadly, this does not fit in the work that is done in a medical relationship with me.
But this doctor lost her way this summer. I forgot balance. Before I knew it, this summer of intense work was almost over and I had been the worst of role models for my patients. Healing after all, does not come just from listening to the patient, examining the body, performing the diagnostic tests and putting the puzzle together. Healing in its best form, involves being a decent role model for the patient. Since I preach moderation in eating and drinking and prescribe fitness in body and mind, and promote mindfulness and living fully in the moment and finding balance in work and life, then I have not been the role model I could have been this summer. I had run out of fuel and did not know that I was running on fumes until this morning.
I was invited to stay on Nantucket with my dear friend who has known me the longest and has been the most important mentor in my life. Caught up in the need to catch up more and more, I felt initially that I could not take time away. The husband, however, was sick-sick-sick of our taking no time off. Although he has always respected my need to do my work in the way that I have always needed to do it, he insisted that we take time to recover–to reconnect and reconsider how the current way of working and living might not be working as well as it could. Chooses his words very carefully, the husband does.
He avoids the judgmental, but is a force for moral choices like common sense and having a life outside the world of medicine. “Do your work the way you must since only you know what must be done, but it is important to clear your mind and refresh your body and spirit so that you can continue to be the kind of doctor you are, but also find time for friends and joy.” I often tease the husband that over the years of our marriage he fancies that he is a doctor. Well, he was my doctor and guide as I trusted him enough to stop and take time for a holiday.
Yesterday we drove to Hyannis and took the fast ferry to Nantucket: So much better than flying. The husband and I love road trips and this was an easy drive with no bad directions from our guide with the sweet voice. I had decompressed significantly by the time we were on the fast ferry to Nantucket. I flirted with a charming two year old boy who will, I expect, never be the same after that experience. The husband and I went to the top deck as we always do on this trip to watch those immense motors kick in for the hydroplane effect. The day was glorious with sun and wind and ocean all around.
Mary met us at the wharf and laughed as always at my over-packing. I don’t like to make decisions about what to leave behind; I believe in packing for three seasons with everything but a ball gown no matter where I travel. “You never know,” is one of my many mottoes.
We were to stay in the familiar guest house designed to give everyone privacy and comfort. This is a place that I have visited over the last 30 years and love being here. My office at 90th St and Madison is the unchanging place of my life. Relationships and places have been less permanent, so it is a balm for my battered spirit to be at home with Mary and John again.
Last night was filled with unpacking and dinner out in a favorite restaurant with wonderful Nantucket brewed beer and steak tartar, walking as one does here to and from dinner. It was a perfect night. I never feel more connected than I do with Mary, who knows me the way only a friend who has watched another with love and guidance for 40 years can. We felt the same way about the rolls (too cold and hard, send them back) and the noise in this now too-successful restaurant. But the food was wonderful and the gradually ebbing away of work demands was working on the restoration of my health.
I woke this morning to absolute stillness and birdsong. I woke when I woke, not when the alarm clock of daily demands grabs me by the throat and thrashes me awake. I started my morning routine, and then realized that I did not need to find my blessings as I have to do each day in order to get out and get on with it. I am here in a sacred place of memory, healing and hope. I realized that like so many others in these difficult and uncertain times, I had lost my way.
I had taken on the national fear of the new world order of failure and chaos and had responded with my always certain survivor skills. Work harder, work longer, do everything right and just get through one day to the next to do it again. This is how a survivor lives, after all.
This morning I have had a coffee, quietly, with my favorite breakfast foods thoughtfully left here in the house for guests by the woman who understands so well how to make others comfortable. I can see that the world is not falling apart, it is just in transition. The doctor is in and her patient is herself. Healing has begun.