PAIN AND RELIEF

The day is crisp and clear and the rays of sun dance a peppy ballet over the soft white caps as they bob in and out of view atop the grand and glorious Hudson River. Meandering along the ragged shore I am consumed with conflicting thoughts and emotions. Colorado blue skies and Rocky Mountain Highs have nothing on the glorious Hudson Valley today. The beauty is breathtaking and a rare gift. The wonderful sunny day, the sparkling water, colorful sailboats and majestic Palisades framing this special place are indeed treasures. Walking alone with my thoughts, bundled up against the gentle breeze from the west, everyone and everything seems to be dancing to the same drummer. Life and beauty are in synch. Yet, I find myself sad and out of that rhythm. I need to force myself back into it.

My beloved husband has Parkinson’s, a progressive and degenerative disease with no cure. The previous slow advancement accelerates a little more rapidly with each passing month. As it continues to extract its toll, John goes deeper into his inner self to some kind of special place where no one can enter. He lives there most of the time now, by himself, and becomes less and less communicative. He's beginning to look like any one of the old men in nursing homes around the country, sitting in his chair and staring out the window as he drums his fingers to some strange melody that only he can hear. We can’t begin to imagine what he is looking at or thinking. I guess in a way it really isn’t our business after all. We can only hope he’s thinking happy thoughts and enjoying pleasant memories.

When he was first diagnosed with Parkinson's seven or so years ago, abnormal tremors and slow movements only minimally influenced him. We used to laugh together and refer to his “Tim Conway shuffle.” We’d tell him to stand up straight and pick up his feet. We’d walk along beside him and count off ” hep 2, 3, 4; left, right, left right,” and he’ d move right along. We knew Parkinson's was a progressive and degenerative disease but we were always hopeful. Over the past few years he's advanced from walking unaided albeit with shuffling feet, to a cane, to a walker, and finally to a wheel chair. Today he's unable to navigate on his own and is totally dependent on those of us who love him.

I know it's time for me to go back in time and relax and "smell the flowers". I need to laugh out loud at least once a day and get outside myself and see the world around me. Most important, I need to remember to give John a hug every day. I’m losing my perspective as John's disease progresses and I find myself more focused on what we have lost than what we have. This is not like me as I’ve always been an “Up” kind of person. My glass has always been ½ full instead of ½ empty! What is happening here?

These last few weeks and months, as things have deteriorated steadily, have been an epiphany of sorts for me. I m realizing the hardest thing for me to give up is the expectation that things will get better; that John would attempt to do more; that we would glide into a peaceful and content ending to a happy and fulfilled life. Lowering these expectations is hard and painful. Perhaps less painful if I am able to reprogram myself to expect little and take pleasure in the occasional hints of a smile or joy or some sort of momentary engagement. I can no longer expect him to respond or react to the things that used to please us both. His muddled brain seems to pick and choose only a very few things and only occasionally will it generate a response of any kind. When he does talk, the thoughts are disjointed and hard to understand. He'll ask if MY kids are coming over and when I tell him OUR kids are coming over, he'll smile and then his eyes fill with tears. That damned veil is pulled down again over the windows to his soul. He looks vacant and confused and a few tears may flow and slide down his cheek. All I can do is give him a hug and sit gently and silently with him until he dozes off to sleep. I know he has vanished back into his own private universe where no one is allowed to enter.

It's hard not being able to share thoughts and feelings with him but it becomes easier if I no longer expect that privilege. I’m grateful for whatever he's able to give me. I fought giving up the hope for many months but it's clear and present a little more each day and reality cannot be denied. Yesterday he asked me out of the blue.. "where are YOUR kids now?" "what are they doing these days." Only God and John know where he is at such moments!

Dying is a natural part of life but the slow deterioration of this damnable Parkinson's disease and other dementia causing illness is indeed like a long slow goodbye. The sun rises and sets and the seasons come and go. Like the leaves on trees, when we've had our time in the sun we fall to the ground. It's to be expected and is part of the natural process. It's painful for us who love them so much to lose the brilliance of their spirit a little each day. We endure the loss a little at a time when what we really want most, and feel so conflicted admitting to, is their peace and serenity. We want the pain and suffering to end and to help them get through this process of dying with peace and dignity. We’re tired and exhausted and worn down by witnessing their slow journey toward peace. We’re exhausted caring for them and the gut wrenching feeling of loss we must face every day creeps up little by little. It could destroy us if we allowed it. We need to give ourselves permission to go on by ourselves while we still attend to their needs. We cannot allow the pain of loss to become so intense as to consume us. We can miss them, grieve for them, and never, ever get over the loss or forget. Or we can begin to move forward and remember the unique and wonderful years we shared. The worst part is the lack of companionship and the silence of their imprisonment. We will forever miss that sharing of intimacy and closeness.

Life is as consistent and eternal as the waves in the ocean, as the stars in the sky, and as the chang

Life is as consistent and eternal as the waves in the ocean, as the stars in the sky, and as the change of seasons. My hope for the future is to trust the power of positive thinking. I resolve to be courageous and to grow and improve each day. I will be grateful for being able to look back with a smile as I try new things. I will meet new people, ask lots of questions and keep myself mentally and physically well and healthy. I will acknowledge that I, and I alone, are responsible for my well-being. Only I can control how I feel. And because I want to feel challenged, respectful and happy, I will focus on the positive things in my life now and in the past. I will work every day to remind myself that my good fortune is in having had this wonderful man as my partner and soul mate for so many happy years.

And most important to remember is that together or apart, we are only but a small part of this magnificent universe. And an absolute must for me is a faith in a merciful God who will walk with us through this journey.

I find comfort in putting my thoughts and emotions on paper. I don’t often get the opportunity to share them with others. If any of this is helpful to another, I am grateful; if it's difficult for anyone, I am deeply sorry. It's been a bad couple of months and will probably not get a hell of a lot better any time soon. But I love this man with a passion and am grateful that I'm around to take care of him. I pray and believe it brings him comfort.

When John died a big part of me died along with him. He left his footprint on my heart and soul and I am terrified that I’ll forget the exquisite love affair we had for 55 marvelous years.

My beloved John died as he lived, peaceful and serene, surrounded by his loving family. We knew the end of his long struggle was near. His poor tortured body was beginning to shut down. He was tired and worn down by infection and weakness. He fought with great strength and courage until he had nothing left to give. He was finally ready to put his head back and say goodbye. And he did so with peace, dignity and acceptance - no twisting, no turning, no agitation, no anxiety.

He had been in and out of consciousness for several days. He knew we were all there with him as we talked gently and reminisced about the many good times we shared. I held his hand, gently stroked his head and shoulders, gave him ice chips to suck, and wiped his eyes and face with cool cloths. He would open his eyes, nod his head and smile at a special memory. It was about noontime on the day he died and someone mentioned there was soup in the kitchen if anyone wanted something to eat. He indicated that everyone should leave him and shooed them out with a weak hand gesture and a mumbled “Go – everyone.”

Then he reached out and pulled at my hand “No – not you – you stay,” he mumbled.

He pulled me close to him and I thought he wanted to tell me something. Instead he weakly guided me to him, chest-to-chest, heart to heart. He kissed me slowly and deeply as if we were new young lovers. His kiss was so loving, so sensual, so deep; so strong yet so gentle that it spread warmth and passion throughout my body. It literally took my breath away. He gently broke that connection, opened his eyes, and looked straight into the windows of my soul and kissed me again. We both knew we were saying our final goodbye. I gently stroked his face and he closed his eyes. I put my mouth next to his ear and said almost inaudibly

“Oh Johnny G, are you going to go and die on me?”

He nodded a careful slow and tender response.

I could only whisper softly …

“It’s O.K. love … I’ll be sad and will cry … but it’s O.K. … I’ll be O.K. You’ll be O.K. You can go my love … just let go … I know how tired you are … so very tired ... you’ve worked so long and hard for peace ... It’s O.K … I’ll cry … I’ll be sad … I’ll miss you every day for the rest of my life … but it’s O.K. … Go now … I’ll love you forever … now go and rest … you deserve it my sweet, sweet husband.”

He died that evening at 11:00 o’clock, very quietly and I think, untroubled.d. I do cry; I am sad; and I will always miss him.

He always said he wanted to be buried at sea and the kids and I determined we would honor his wishes. His body was cremated and we took his ashes to the ocean at Long Beach Island for one last visit to the sea he loved so much. Each of us carried a small container with a bit of his remains and stood together at the edge of the pounding surf. The never-ending waves washed over our feet and just as quickly returned to the sea again and again. It was a mystical, undisturbed moment to think private thoughts about this wonderful guy and the unwavering love connecting us to him. As we silently tossed his ashes into the pounding surf, we were filled with love and homage for this gentle warrior of a man.

We watched quietly as bits of his ashes were gently swooped up and carried out to sea by the ocean breeze. We had nothing left to do.

My comfort now? Perhaps death is not a sad ending —- it just might be a joyous new beginning.

HOW SOMETHING SMALL CAN CHANGE A LIFE

Graduation loomed ominously over the last few months of life at the Convent boarding school.    I had no idea where I was going or what I was going to do.  My mother's sister and her husband offered me a place to stay until I could get settled and make some plans for my future.  They picked me up on graduation day not because they particularly wanted me with them, but because no one quite knew what to do with me. They elected not to actually attend the grandiose graduation ceremony but to arrive later that day to collect my belongings and me. Their absence sent a pretty strong message and was a precursor of things to come. 

The Commencement ceremony was held in the very ornate Gothic chapel resplendent with pomp and circumstance. At one point, each graduate, dressed in a white, flowing, floor length gown was presented with a white rose by her mother to signify coming into womanhood. If one's mother wasn't available, we "borrowed" a relative or friend to fill in. This was a particularly emotional and poignant time for graduates and guests. It was yet another lonely time for me. I was only a few years older than the twelve year old child who walked through those doors just four short years before, but surely not yet a woman. The difference between then and now, however, was that while I was still frightened and unsure of my future, the challenges ahead would be faced alone without the loving presence of those wonderful nuns. My roommate's mom tried to fill the gap sweetly and sincerely as she kissed me and handed me my rose. It was gentle and sincere but it didn't quite fill the void. 

Nice, well-bred young women had few choices in those days. One lived at home with mom and dad, went to college, or married some nice young man. Since there was no mom or dad, Latin almost did me in grade wise, there was no money for college, nor were there any young men (nice or otherwise) waiting to carry me off, Ann and Roger won me. I was to "enrich their lives" and they were to afford me a safe transition to independence. They were interior decorators, in their 60's, with no children and driven by their careers. Their house lacked any warmth or excitement for a young girl. It was pristine, perfectly appointed, very polished and not the least bit inviting or welcoming. I didn't know them and they didn't know me. I had no clue what to expect, nor did they. It very quickly became clear I was not it. I was a royal glitch 
in their heretofore staid and orderly lives. I knew no one my own age, was anxious to get on with my life, and certainly not interested in hanging out with these two stodgy old people. It was a real challenge for all of us and not one that I met very graciously or successfully, I'm afraid. My short 2-month stay was a disaster. I was miserable and made them quite miserable as well. The best I can claim is a quiet politeness and reserve and an overwhelming desire to move on. I stayed a few months, attended a 6-week intensive secretarial school and then did the unthinkable for a young woman of those times. rented a furnished room in a small town called Pleasantville (can you believe that name for a town?)   I took a job as a secretary at an advertising agency in New York City and commuted to my one room in a private house in the suburbs. The next few years of my life were neither happy nor unhappy - they just were. I trudged along on my journey toward independence and while I didn't die of sadness, I continued not to live. 

Reflecting on the day I moved into my furnished room on my own, I realized it was my 18th birthday.   I remember thinking that I had not celebrated a birthday in all those years since my mother died. That thought didn't particularly surprise me or even make me sad. My musings  consisted of "hmmm, what a good day to be doing this. It's like giving a birthday present to myself." I was certain there was no one who knew or cared that it was my birthday. And, in fact, whether or not I had been born didn't seem to matter to an awful lot of people. I was sort of "hanging out" and not really making much difference in the whole life scene. There was no emotion in thinking about it. It simply wasn't important to me or anyone else at that time. Since there was no one around to celebrate a birthday, I had no choice but to ignore it and I learned to handle it by pretending it didn't matter. It was a strange epiphany of sorts and qualified as a Peter Pan, never-never-land thought, the kind that prompts a shrug of the shoulders and an "Oh well, so be it" reaction. 

I'm just Irish Catholic enough to believe in a guardian angel assigned to each of us during troubled times. The poor guy assigned to me had her work cut out for her. I was in limbo, a misfit, wandering aimlessly through each day. I went to work, ate, and slept with no goal other than to put down roots and find a home apart from Kenwood. Without a clue and certainly no clear plan for accomplishing this, I was running in place and not getting anywhere. Not until, that is, I literally bumped into my wonderful John, husband to be, at a party given by a friend from work. That invisible angel must have been sick and tired of my aimless meandering and decided she'd had enough. I was not yet 20 years old but I swear she literally shoved me into his arms. 

It was a 3-day Labor Day weekend and friends were looking forward to one last long weekend of fun and sun before the lazy summer was over. One of my co-workers had a summer cottage at a county park and there was a end of summer celebration planned at the clubhouse. A few of us from the office went and by the time we arrived, the party was in full swing;.  There was  lots of laughing, good music, plenty of beer, lively dancing and many very tanned, muscled and gorgeous single guys looking for a good time. 

I discovered at that party that life can indeed turn on a dime - or spilled beer! Mine turned on an explosion of spilled beer, loss of dignity, embarrassment and a very strong desire to go into a fetal position, put my thumb in my mouth and hide. 

The partying had been going on since early afternoon and the clubhouse floor was awash with spilled beer, making it a slippery gangplank challenging anyone to walk it. It was an accident waiting to happen and I stepped right up to meet the challenge. Gingerly walking across this sea of foam, dodging the dancing crowd, my feet went out from under me and I slid - not so gracefully - along the slosh and landed right at the feet of a stranger. The unexpected rap into the back of his legs caused him to fall back over me, spilling yet more beer all over both of us.  He looked over at me as we lay side by side in the mess, smiled, and said, "Wanna' dance?" That was the beginning. 

After we picked ourselves up and tried to wipe the beer from our clothes, we started to laugh. Without missing a beat, he put his arms around me and moved me onto the dance floor to the applause of all in the room. He was funny, a great dancer and very attentive and we were immediately attracted to one another. I think it's called "good chemistry." We spent every bit of time we could find together over that long weekend and throughout the next year. Notwithstanding the fact that I was desperate for love and acceptance and probably would have married the first kind and gentle man who would hug me, I truly liked this unexpected and extremely nice man. The more time we spent together, the more comfortable we became and the more we enjoyed each other. Additionally, while it's a hell of a reason to get married, raging hormones were screaming and would not be denied. Pre-marital sex was simply not an option. I may have had trouble learning Latin and conjugating verbs, but the lessons of purity, virginity and no pre-marital sex were crystal clear. I was overwhelmed with love for this sweet, caring and thoroughly good man and we married six months later. 

And wonder of wonder, I was completely and totally happy. Eight babies and thirteen years later, I was obsessed, consumed, overwhelmed with diapers, colds, runny noses, laundry, homework and the many challenges of being a young (very young) housewife and mother. I loved what I was doing and knew instinctively that I had found my way. My life was my home, my husband and my children. I knew in my heart "Whoa - this is a lot of kids ... slow down ... take a breath" - in those days blind obedience to "the Church" was the way of life for good Catholic women. God would provide and there was no need for forbidden birth control. This had been deeply ingrained as a matter of faith and conscience.  Consistent with being a good girl and always trying to please others, I brushed aside my doubts and forged ahead. 

Thankfully, there is no more uplifting thrill and sensation than to be greeted by a smiling baby early in the morning, bouncing at the side of his crib, calling for you with excitement and joy, ready to begin his new adventure. Walking into the room and iis one of life’s greatest plelasures.  It's as if a shade has been pulled up on every window to let sunshine stream in .  The room changes from a silent, hushed gray to a dancing, brilliant yellow. The world comes alive as you open that door. It's reanimated as the coffee begins to percolate. And fill the air with its sweet aroma. The dog sleeping at the foot of the child's bed stretches and yawns and begins to thump his tail on the floor in greeting. You can hear the birds chirping outside the window edd your whole body and mind overflow with love and joy. Babies are pure and unencumbered happiness. They adore you just because you are - no questions asked. They care not if you're tall or short, fat or skinny, black or white. They fill you with all the warmth and love you could ever need. When I walked into my babies' rooms each morning and saw the pure, unadulterated delight in their huge smiles, my heart and soul were filled with peace. They would reach out to me and squeal with sheer joy just because I was me and they loved me. They healed every wound, removed every scar, filled every hole and untangled all the cobwebs in my brain. Their purity and innocence melted the hardest heart, mended the most broken and replaced all despair with hope. There can be no greater gift. 

John and I never had enough money and never enough time. We often had to look through the couch cushions to find nickels and dimes to pay the milkman. But God, how we loved those kids! Ours was a happy, close, chaotic and fun family. 

I wish with all my heart that I could do it all over again. I'd be much more relaxed, I'd smile more and frown less. I would read more books and I'd read them slowly and enjoy that special quiet time with each child. I'd listen more carefully when they tried to tell me something. I'd be gentler and less rushed as I brushed their hair. I'd sing along with them as they brushed their teeth and not be in such a hurry to get them into bed. I'd move more slowly and take more time to enjoy each moment. I'd let them read the sides of the cereal boxes as they ate their breakfast and prepared for their days. I might even allow them to keep the milk bottle on the table. Their opinions, though they were only little people, would be respected and honored. I'd spend more time playing games and less time cleaning and would be much more spontaneous and willing to break away from schedules.   I could never love them more but I would tell them more often until they came to know how special and unique each one of them was. 

I was a liberated woman long before it was fashionable to be so and John always did more than his fair share of housework, shopping, tending to kids, etc. He can still polish the chrome in a bathroom better than I can. On those occasions when he sensed I was overwhelmed, he'd pack all eight kids into the back of the station wagon (usually with the mutt dog right along with them) and take them to the park or grocery shopping or just out for a ride to give me some time alone. He was a sensitive and caring man who instinctively knew when it was time for me to have a break. The two of us were a terrific team and we happily rode the roller coaster of life. The family was a powerful force of ten and those were exhilarating years for all of us. 

As adults, all kids are blessed with good health, good partners, adorable kids and they remain good friends and enjoy each other’s company. They often sit around the dining room table and reminisce about those days with lots of laughter and good humor. One of the most endearing compliments they give their father speaks volumes about this sweet and gentle man and his wonderful personality and disposition. They talk about how they loved to see him come through the door at the end of his day because "Dad was home and now the fun could begin." What a tribute to a very special man. 

But just as that sun comes up each day and the moon comes out each night;   just as each tide comes in bringing us treasures from the sea only to take them away again with the next tide, so too did those special and wonderful years move away. And as often and as forcefully as I tell myself it's absolutely the way it should be.

I mourn the loss of those precious times but will never forget the lessons taught.

There is a time to laugh

And a time to cry

And there is a time to accept

And a time to deny

There is a time to be strong

And a time to be weak

And there is a time to listen

And a time to speak

GOD HELP US ALL

GOD HELP US ALL 

Is it wisdom, frustration, or simple acceptance and common sense?  My God given drive  and need to make this world a better place has been imbedded in my soul for as long as I can remember.  It’s always just been there.  Nothing I’ve searched for our wrestled with.  It’s as much a part of me and as natural  as taking a breath.  I can’t see it, describe it well, smell it or fully understand it.  It’s just ever present.  It doesn’t surprise me nor does it intimidate me.  It’s flow is as natural as the flow of a country stream skipping downhill and sliding over glistening bedrocks.   It’s strength is as powerful as the pounding surf and its presence as warm and bright as the morning sun.

So why after 80 plus years of living have I lost my mission?  There must be more I can do,  Notwithstanding physical limitations wrought by advanced age I no longer feel the drive.  I’ve lost my hope and my faith.  It’s been taken away by living and I can no longer capture it.  I no longer shrink when I see the horrors and tragedies of nature and human kind.  They have become so common place that I no longer feel them.  They’ve managed to creep so far under my skin that I’ve become almost immune to them.  The horror of man to man and nature to man no longer shocking.  Nor do I have any better understanding of the why’s and wherefore’s of their existence.  Ruwanda, the Sudan, Haiti, Malawi, 125th Street and the South Bronx, Hurricane Sandy, Katrina and Seaside Heights?  Where was He in Sandy Hook?  And so many more horrors near and far that we never see or hear about.  Why were not His loving arms there to embrace the young Indian girl who was stoned to death before crowds of cheering people because she chose to love a man of her choice. And those sweet innocents in Newtown had no place to hide … no safe haven … no soothing arms to hold their shaking bodies.

I seem to have lost my energy and my resolve.  I’m pleading with and begging my God to awaken my heart and soul once again.  I’m confident that He hears me but am not hearing his answers.   I’m trying to believe He’s speaking to me through friends and families but I’m either not listening or He’s speaking too softly for me to hear.

I’m trying to believe  that calmness is one way to show and be patient with my faith in God.  I’m trying but that  doesn’t seem to be working.