Saturday, April 29, 2017

What's Next?

It's been 6 months of illness, 3 months since the final, definitive diagnosis. Inflammatory bowel disease~ ulcerative colitis/proctitis. A whole foods chef's worst nightmare and an ultimate cruel irony.

I made my first loaf of 100% whole wheat bread in 1969. While it was as hard and heavy as a brick, it was a start of my love affair with whole 'natural' foods and cooking. I subscribed to Organic Gardening Magazine and dug up behind the garage of my childhood home to grow vegetables. My father had a fit, but my mother was very supportive, and our garden flourished long after I left home with my father taking it over.
Wherever I lived I grew vegetables and herbs, even if they were just in pots on the patio. I was a frequenter of farmer's markets and taught myself how to make everything from scratch. In those years before the internet, I amassed a collection of over 300 cookbook.
Earning my living as a chef was a natural outgrowth of those years. I love to cook and bake, love to entertain friends and family, love my business of private cooking for wonderful clients. This, for the past 50 years has been my life; it is not just what I do, it is who I am.

Now I am faced with a chronic incurable disease that I have yet to get a handle on, which leaves me with  significant pain, general malaise, fatigue and, no appetite. Every day I wake up and hope that I will feel better. I can not yet retire, I must work, and yet I get  little pleasure from it anymore. I am under the care of a gastroenterologist who assures me that people can go into remission with this disease, but I have yet to achieve that goal: although the worst of the symptoms have resolved I am still left feeling miserable. The medication is ridiculously expensive, they have supplied me with 6 months of samples to start, but past that I do not know how I will pay for them.

Then there is the 'low-residue diet' to which I must adhere. It is the polar opposite of the way I have been eating since I was 10. No whole grains, nuts, or seeds, no raw vegetables, no cooked cruciforous vegetables ,broccoli, cauliflower, cabbage, brussels sprouts, cooked fruit only, no berries,  all my favorites....think wonder bread, white rice, veggies cooked to death, white potatoes, white pasta, nothing spicy or highly seasoned, no hard cheese....let's just say all of the foods I love to cook and eat are off the list. Even if I reach remission, I have to be very careful of what I do eat to stave off a 'flare-up'. The disease can flare even while in total compliance with diet and medication. Stress may be a factor, or not. Diet may be a factor, or not. There are no absolutes here, other than once you are diagnosed with this misery, you have it forever. No one knows what causes it or how to cure it.

Coming to an accommodation with this disease has proven more than I can handle although I am trying, hard. There is a grieving process that must be allowed, a lot of anger and feelings that my body has betrayed me in the worst way, and also the nagging question of haven't I had to deal with enough in my life? How do I support myself when all I want to do is lie down? How do the bills get paid? Will I ever feel better? Questions no one can answer. Time is my ally and my enemy. Maybe given enough, I will get better, but meanwhile it passes ever so painfully slow.


Saturday, March 11, 2017

Farewell dear friend

He was larger than life. With a quick smile, a hearty laugh, and a beer in his hand he'd greet me with a bear hug, and a big kiss, smelling of cigarettes, and engine oil : a man's man, with a soft hearted boyish charm. I loved him, that big man and his even bigger heart.

Always willing to pop your car on his lift , work on your truck ,do a favor for a friend, he was generous with his time and his tools. With his John Deere tractors, his new/old bulldozer, and other amazing finds, he shared his boundless enthusiasm for tinkering and fixing.  It was never long before he was pushing huge piles of dirt around with the joy of a child in his sparkling eyes.

A rough, gruff man, big and scrufty, one did not have to dig too deep to find the kind hearted soul just beneath the surface, the man who loved his Sugar with all of his being, to the moon and back, just as she loved him.

His heart was just too big for this little world and he left us with a large hole in ours. I can only hope that there are giant piles of soil and a shiny new backhoe in heaven, because that's where he is,  his big , beautiful grin lighting up the sky.

I will miss you, my friend, until we meet again.

Saturday, January 28, 2017

Shooting Stars

The day after I turned 18, I left home forever. To this day, the fragrance of honeysuckle and salty air brings me back to that summer.

We had been on the road for hours,when the  old woman in the front seat next to me directed me to pull into a narrow lane cut into the dunes. The bottom of the station wagon scraped on the hump of the lane; we were loaded down with a summer's worth of supplies, so much so that I hadn't had a rear view for the 10 hours I had been driving. I had no idea of where we were until I opened my door and stepped out of the car. Then I heard it- the crash of the surf pounding the shore of the beach across the dunes no more than 50 yards away. The air was damp and salty and heavy with the fragrance of the honeysuckles that grew 4 feet thick on the trellis that was the entryway to the house. I looked up and saw more stars in the sky than I had ever seen over my suburban NJ home; the sky was ablaze with them!  A meteor shot across the sky at that moment and I made I a wish that I would never have to leave this place. Across the dunes  I saw the sweep of the lighthouse beam, both a warning and a welcome for those out to sea. My thought was that I had found my paradise.

I bundled Grandma out of the car and into the knotty pine paneled house.  I went back to the over-packed car and managed to find sheets and a blanket for her bed, which I duly made up. She was exhausted and only too happy to climb beneath the covers, whispering that we would unpack the car tomorrow. I gave her a kiss, having already developed a fondness for this sweet little woman with whom I would be spending my summer.  I turned out her light and quietly slipped out the front door, breathing in the thick honeysuckle'd air. I skipped down the lane, across the street and climbed the dune keeping me from the beach. As I topped the rise the sound of the surf grew loud again. I stopped and stood as still as a tree and saw a beach like none I had ever seen before. It was wide and flat at the foot of the dune; the stars were so bright that I could see clearly: the waves as they washed ashore, their foamy white edges as distinct as if it were day. Overcome by the beauty and wildness of this place I ran down the dune, falling and jumping back up and laughing , filled with gleeful wonder. I ran in circles like a small child, with my arms outstretched behind me, chortling, and whooping with pure unadulterated joy. This was a feeling that I had never in my life experienced: pure joy, and a feeling that was to stay with me for the next 3 months.

When I finally exhausted myself with my wild capering in the sand, I set off walking. This was an odd thing for me too do as I had always been afraid of the dark, and never went outside alone. I felt no fear, only exhilaration. I walked at the edge of the surf, realizing only then that I had at some point lost my shoes and socks. I scuffed my feet in the surf as I walked. I looked down at my feet and saw the glitter and glow of phosphorescent algae in the surf, a magical sight. I threw my head back and laughed again at my marvelous luck. I broke into a run unable to contain my exuberance, spinning and jumping, until I fell back into the sand  and looked straight up into the star-filled sky. 3 of them shot across my view in 3 different directions, but I made only one wish, the same as before, never to have to leave this magical place, having fallen head over heels in love with Coast Guard Beach on Cape Cod.

The next morning, I woke up to see the sunrise over the ocean. I climbed out of my sandy sheets, and after making a cup of tea, walked down the lane following my path from just a few hours before. The view from the top of the dune was breathtaking. To the left were towering cliffs  topped with grey weathered cottages that overlooked the water.  Directly across the sun was peeking up over the the end of the world in a blaze of red  and yellow. To the right was a huge expanse of beach and high dunes and behind those dunes  a sea of green, a salt marsh. I ran down to the edge of the water and dipped my feet in the cold surf. There was not another soul in either direction. I drank it all in until my eyes overflowed with happy tears. So this is what dying and going to heaven feels like.

I  fell in love many times that summer. I was very young and felt such things very intensely. My heart would soar then crash and I'd be crushed, only to get up and try again. It was like learning to surf, something did with one of  the boys I had met. But they were on vacation, and I was living there, and a two week holiday is a short time to form a relationship, much less really fall in love. I remember those romantic interludes so clearly. I felt so powerful, so full of life, so alive I was unconquerable. I have never had that feeling again.

I would get up every morning and take my tea to the edge of the sea and watch the sun rise. Back at the cottage I'd go about my daily chores which were minimal: make Grandma's breakfast, a fried baloney sandwich-ugh- but that's what she wanted, I'd sweep up the sand, wash up the dishes , make our beds, then set Grandma up in a lounge chair, wrapped in a light blanket, facing the beach, I put up her umbrella, brought her a glass of tea and was finished. Free until lunchtime. To the beach I'd go! Mornings were for me. Walking north, I'd escape the small beehive of tourists and find a quiet spot to read and swim and skim stones on the calm days. I'd walk for an hour or two then head back to the cottage to make Grandma lunch. Usually she wanted grilled cheese, or a tuna and tomato sandwich on white toast; her tastes were bland and simple, even though I was an accomplished cook I had little to do. After lunch, I'd help her to bed and she would nap the afternoon away. I'd clean up and hit the beach, this time scanning the beach for boys, or rather, the boy. I felt I had my pick since it was my beach. Sometimes I'd walk south, beyond the protected area and find a party happening at the point, where trucks could be driven onto the shore. There would be music and beer and friendly people, but never the same group twice. But never was I lonely.

Every 18 year old girl, especially those who'd  had a sad childhood such as mine , should have a summer like that summer. I have never since felt the way I did those 3 months, really a very short time span now that I look back from 40 years later. Yes, I was wild and reckless and free. But I was happy, truly happy, I felt pretty, I was confident, and there was nothing I could not do, for the first time I could ever remember. I thought that my future was so bright and that there was everything to look forward to. I lived in a happy bubble, a refuge from the angst and confusion of adolescence.

I did not realize that life had a different agenda for me, a very different agenda. But I was very lucky, and to this day, I bless that luck and I hold those 3 months close in my heart like the lighthouse, a beacon of hope that I will find that place again one day.



On the road

The vultures soar, ragged, jagged elegance,
robed in black, filled with grace,
awaiting unhappy circumstance.
Meanwhile, standing at the verge,
wanting to cross the open space
the doe leaps out to take the chance,
and here is where their lives will merge.
On the roadside, amongst the Queen Anne's Lace
A silent shape, yet still, life~giving sustenance.

                                                         




                                                          pf 1/28/17

Wednesday, January 25, 2017

Compost

If you had asked me 2 years ago where my friend would be, I would have said 'why, right beside me, as always and forever', being unable to foresee that there would ever be a time we'd fall apart. We have been friends for 20 years, we have laughed, cried, traveled, celebrated, sat in hospital waiting rooms with/for each other. We have been there, each for the other, for more momentous life events than can be remembered, all as beloved sisters by choice.

 We got annoyed at times, got over it quickly. There was no doubt in my mind that this friend, this dear sister by choice, my heart's companion of middle age would never leave my side. But therein lies the hubris of being human. We, being imperfect, place our faith in imperfect vessels, never imagining they will leak or spill. When they do and we find ourselves alone and bewildered wondering if this empty place will ever heal over, we wonder what it was that caused this valued friendship to founder. 

I am wondering that right now. The last time I saw my friend, I told her that I missed her after months had passed: phone calls never returned, messages never answered. She answered, "I'm always here". A more inadequate response than I could understand. I said at the time that I felt to blame, I made a joke about my Italian/Catholic guilt, my feeling that everything is my fault, and she brusquely brushed me off. We were exchanging Christmas gifts, months after Christmas. We drank tea together, hugged goodbye, and I have not heard from nor seen her since.

 I am at a loss, feeling like I have suffered a loss, a piece of my heart broken away and flowing down a river where I can not follow. I know my friend has many interests and lives a fairly privileged life albeit not without her own trials and tribulations. Our paths have separated perhaps because I am not in a position to absorb the expense of having many interests where an expenditure is necessary. I must work full time and will be and have been for a very long time. My profession is physically demanding and time-consuming and while it is fairly profitable there is not much room for luxury or time off. Or maybe it is as simple as interests diverging and commonality disappearing. We have both of us watched as our families have expanded and taken up more of our time: but still, I say. We were always able to squeeze in a chat or lunch or dinner out. No longer.

I am truly saddened by this state of affairs, by what I have come to consider the loss of this friend. I ask myself constantly what I could have done to keep this from happening, did I do wrong somehow unknowingly? At the same time, a voice in my head tells me that this is how life  is, that people come and go from our company, that there is an ebb and flow to certain friendships. But then I come back to the deep memories and intimate knowledge and feeling we shared and I shake my head: no. This was not a casual acquaintance and our lives did not take drastic turns in opposite directions. This feels like a faded flower stem snipped by a sharp pair of shears and cast into the compost. Perhaps with time, as with good compost, something will grow back. I will hold on to this hope; as life moves inexorably forward, so must I, while trying not to look back.

Monday, October 31, 2016

Just a sign

I have written this letter in my head a couple of hundred times, while walking, while driving, while sitting, napping, working... I have not been able to put my finger on the reason for my  almost constant anxiety, my fear that something awful is going to happen, has happened, will happen. I find terrible moments from my past popping up to plague me, things I thought I was over and done with...and then I read a word that explained it all. Retraumatization. That's what I have been experiencing,that's what has been happening in my head, that 's what has caused my stomach to flip with fear and cause me to catch my breath as my heart rate rises.Re-traumatized. That's what I am.
That's why I feel the hands reaching around behind me to grab my breasts, the frightening and painful clutch of my crotch by a stranger in a crowd, the yellow glow of parking lights on the worst night of my life.

When I drive around what I felt was a peaceful neighbor hood, I see signs that I have been living in a bubble, with a misguided belief that my neighbors are people who would be appalled if they knew about the things that have happened to me, that they would condemn and vilify the criminals who have assaulted me, first as a young girl of 13 years, then at 17, and finally the year I turned 18. Still a child.
 But I see the signs now and I feel that my kindly neighbors would blame me, or make excuses for the perpetrator of these horrible acts. They would defend or excuse the actions.They would say " Oh that was so long ago, people change, he didn't mean it/do it,she's making it up".
 I see those signs and I feel again the  gut wrenching horror of being raped and knowing that I
can not tell anyone,that some how it was my fault;that the bakery owner who grabbed the breasts of a thirteen year old  felt that he had the right to assault her;that the stranger in the crowd thought it was funny  and fun to grab a girl by her genitals. I see those signs and I feel that those people would condone such actions, are condoning those actions.
Retraumatized many times a day while driving around making my deliveries. When I read the word, and the article that explained this phenomenon and realized that I was not alone, that there are many of us feeling the same way, reliving our nightmares, I was relieved. And saddened. Because of the signs I see every day that show me that people don't care about girls like me. That they believe in the monster whose name is on those signs.
Trump.
.

Sunday, May 8, 2016

Tiktok

I wonder sometimes how long it will take
To get used to your absence.
To not feel so alone in the world.
So unprotected.
Each year I think maybe this is the one.
Maybe this year I won't cry.
Maybe I am finally grown up enough
to accept the unacceptable.
I don't think I will ever be that grown up.
Ever.