6 Weeks

We were told by his adult children that he was supposed to die from an inoperable, aggressive brain tumor within six weeks, that was at least three months ago. I thought, for sure, he would die when he was told his wife had passed away but, again, he was so relieved, so grateful she was out of her pain that he actually felt and looked a bit better. Nobody could change or help his diagnosis, he had an inoperable brain tumor but his spirit was so relieved that the love of his life was free of pain and free of suffering, he felt just a little better. They knew his wife was going to die in one or two days and they were correct. You could see relief sketched on his face yet he was not allowed to go to her funeral, he was in hospice care.

Many years ago, when my father laid, by himself, in a hospital room, in another state I called at the exact time when a freshly minted unsettled female voice said:”something has just happened and that the doctors are working on him now.” I didn’t understand, I had no idea what she was talking about but I remember calling my mother. I never thought about it like this but I guess I was there at his death as well. We were together and I still left him that sacred message, so did my mom. “It was okay to go, it was okay, we would take care of each other…”

The cardiologist called me and I asked him if I should come? His voice was gentle, I remember that, and he said “Sweetie, you won’t make it in time, don’t come.” ” Do you promise?” I asked through wracking sobs? “Yes”, he promised. Moments later, my father was dead. I didn’t know until a few days ago my mom had made the same call and was told the same thing. She was ready to drive there alone, in the dark, even though she was terrified to drive.

He had crashed in the hospital while under observation with a fatal heart attack. He had suffered heart attacks before. I still see that digital clock in my mind, the one my dad had given me so many years ago, well, “sold” to me even after all these years. My own children were across the hall, mere babies. I see their sweet, innocent faces, me in my bed, a moment, frozen in time. It was 10:20 pm.

I thought I would never be able to feel happiness again but I did though it was different. I was different as well. Before and After Different. That’s how I now measured my life, in a lot of things.

There are always new phases in our lives, new beginnings, new endings, new chapters, the closures, doors slammed and opened. Right now we are in the middle of a chapter and can’t seem to go forward or back, we are stuck, like dead birds smashed against a windowpane.

Eventually, we will move on. It may take some more time but life does not have to be stagnant forever although sometimes it feels that way. Turn that attitude around and enjoy what you have instead of what you don’t know. Nestle in comfort for the time being. Luxuriate in proximity, memories, familiarity and family.

Change will come, whether you are ready for it or not, it will sneak in like a softly padded black cat stealthily coming in the darkened bedroom, with only green cat eyes following every step you take.

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Did I Say There Was HOPE For Fibromyalgia? WRONG.

Flower alone

Flower alone (Photo credit: @Doug88888)

9/13/13

Earth to me. Earth to me. Calling all hallucinogenic hopefuls down to reality please. Yes, I know, I was one of them. Me, optimistic, me. Funny, quirky, stupid, friggin  me. What the hell did I know? DId you believe me? I believed me. I really did until I woke up in reality which was just recently. I used to think of the world as a good place but that stopped a long, long time ago, probably with September 11th. That shook me up and the world still keeps shaking me up and not with good things. I know, I’m a late bloomer and gullible as all heck. There will always be two different “Me’s.” Before and after.

I’m jaded, Jaded and faded and disillusioned. Know what my mother’s advice was to me? “Lower your expectations, “I did. No rah-rah speech from her which is not exactly her style to begin with. My dad used to be Mr. Educational Talk when he was alive, think positive, be optimistic, you can do it if you THINK you can do it. He gave “pep” talks to anyone who would listen and yes he believed it and I tried to believe it too, tried to change. But, at the end of his life he was terribly sick and depressed and didn’t want to get out of bed or listen to his favorite Viennese waltzes that had delighted him all of his life. He was a shadow of himself, a shell of a man, it went so quickly and so slowly at the same time. It’s hard to remember when he was last really happy, I have a photo of his birthday, I treasure that photograph. The birthday candles were lit, he was beaming with joy, but it was many years before his death.

I’ve gone to the dark side. Plain and simple. Life is about love and love is about abandonment. Gone. Hello, I am here. I love you. I now will leave you. Good-bye. You are born alone and you die alone. You should pretty much plan to be alone a lot in your lifetime because no one loves you like your mother or father does, or your spouse/partner. You love your kids more than anything, they are your heart and soul, the true essence of your being but it is not reciprocal. It can’t be. Their children will be the lights of their eyes, you need to stand back and make room for the next generation. You may still be in the picture but not upfront, from now on you are in the background and that is where you will stay, forever.

Remember that post I wrote on feeling blessedly numb and peaceful? Yes, that’s gone, it left as fast as it came. Had to do with children and my dead father and abandonment issues.  Just saying the word in my head brings tears to my eyes. Good old abandonment, am I the only nut job that has this umbrella issue? I would bet not. Life is scary sometimes, it’s the truth.

Many limitations from chronic illnesses: Fibromyalgia, Hashimoto Thyroiditis, I can not walk a straight line, my balance is worse than ever, my stamina is non-existent. I need to go into the city for an appointment to see my rheumatologist and I don’t have the strength to get there. Taking the train and a cab seems impossible, hiring a car service is ridiculously expensive and I can’t afford that. So, I keep postponing it which is the worst thing I can do.

I have to suck up my pride and ask my best friend for help, she’s already offered but I am not good at asking for things. I rather help than ask for help. So, today I have to promise myself that I will ask her for a ride to the city, pay for everything and appreciate that I have a friend I can ask albeit begrudgingly. I know I won’t get better, if anything I’m getting worse.

photo credit:@doug88888

written words copyrighted

PFAM- The Stress of Having a Chronic Illness- Fibromyalgia

Fibromyalgia Awareness

Fibromyalgia Awareness (Photo credit: Kindreds Page)

When you have Fibromyalgia stress is part of your life, it’s your face staring back at you next to the definition of “stress” in the dictionary. Wait. What? What were we talking about? I don’t remember, it couldn’t have been too important. It doesn’t matter. I had a good morning, the pain in my arms only woke me up twice during the night and it wasn’t bad at all getting out of bed if you don’t include the dizziness that happened when I tried to get up.  I actually was able to go out and do an errand, even two. My energy level was okay for an hour and a half to two hours! Then, the boat that is my life, sank like the Titanic. There were no survivors. That always happens. I should get used to it but I can’t. Maybe it’s Fibro Fog or pure denial but when I crash in the afternoon, every afternoon, I crumple like a rag doll and need to lie down. I can barely make it up the stairs on my own, the stair rail helps me up as I plod along slowly. It happens every single day. Maybe Fibro Fog and forgetting are better than acknowledging my sad, interrupted life.

My stomach aches, It’s probably IBS, or irritable bowel syndrome as we Fibro patients know, we get pain THERE too, it’s a classic symptom. Stress only makes it worse, where did it come from? We are not exactly sure, some say it’s from Fibromyalglia, some say it’s a gastrointerology disease, other say stress. No matter what, we can’t win.We can run to the bathroom with stabbing pain or basically not go at all. Pain all around. You can’t help it, there is nothing you can do but wait it out. Just an added bonus of Fibromyalgia, just one more question mark that will never be answered. It limits where we can go and when, which in itself is stressful. We have to plan or not plan at the last moment. Friends who understand call in the morning and ask “are we still on?” or “let’s see how you feel in the morning.” For every friend like that, there are two friends plus family members thinking or saying, “you should just exercise/eat gluten free/lose weight/gain weight/go holistic/ try acupuncture, get a massage etc. They are so strong in their feelings and I know it is out of love but I have stopped trying to defend myself and just let them talk as much as they want. Since it’s the 100th time, I don’t fight anymore, now I just pretend to listen.

This insidious illness has not only interrupted our lives, the lives we once had, but for me, divided it into two. Before Fibromyalgia and After. We mourn our old selves to a point, some people still hope for a cure, but I don’t. I need to focus on my new reality, the pills, the pain, the realization that I cannot do many things that I was able to do in the past. That sometimes I feel like half a mother, half a wife, that I have the energy of a cockroach, let me correct that, the energy of a nearly dead cockroach because those things can be feisty.

I am not feisty anymore but I once was. Those were the early days when I could describe myself, without hesitation, as HAPPY but also young. I remember saying that, though conjuring up the feeling now is so much harder. Luckily, when I had my children I did not have Fibromyalgia but they don’t remember all the running around, playing, swinging and rough housing on the floor we did because they were so young. That to me, is heart breaking. Ask them now, as young adults and I’m sure they will remember “Mommy is in bed, she doesn’t feel well” or “Mommy is sleeping.” Ask any mother who has Fibromyalgia if that’s not the tipping point for her. It was for me.You want to help your children until you become old. Fibromyalgia makes you old, makes you feel old and useless a good deal of the time. The stress of life continues and it waits for no one especially us. There’s not only physical pain with those of us with Fibro but emotional pain too. We are not who we used to be. Does anyone ever think of that?  We are half of who we were. People with Fibromyalgia don’t get a “do-over” we don’t even get a chance.

NaBlaPoMo Day 3 Free Write

Sandy_JH_mdpNY-11

Sandy_JH_mdpNY-11 (Photo credit: mdpNY)

How Have You Been Personally Affected By Storm Sandy?

I want to stay in my safe haven, in my little house with my rust colored dog by my side. I appreciate dearly that my husband is able to work from home these past few weeks, I feel safer just being here. I could go out, I suppose, but I am limited to where I can go with street closures and fallen trees and wires in the streets.  I realize I just don’t want to go anywhere.  Not yet. I’ve seen enough on the television 24/7 to know the scenes by heart. I just can’t believe this has happened to my city. It’s difficult to believe that to fill up my car means that I need to search for gas for hours.

While I don’t live directly in the city now, I was born and raised in Kew Gardens, Queens. After college I had my first job in NYC at Paramount Pictures, working with my best friend, eating lunch in Central Park and living just over the bridge, in Brooklyn Heights, years before it became popular. I saw movie stars all the time and in my early twenties, I was so excited just to see them. I practically had a hotline with my mother to tell her who I had just seen in the elevator: Diana Ross, Robert Redford, Dustin Hoffman in our Reception Area being asked if he wanted coffee at least nine times by various assistants (he was not happy) and a young and beautiful John Travolta on the executive floor. It was an exciting and exhilarating time, free movie screenings and many perks.

Now, I appreciate other things. The comfort of my husband’s hand holding mine. My puppy’s peaceful breathing as she lays her head on my lap. Halloween photos from our two happy children in college. Yes, I’m older but more peaceful than before. Storm Sandy was something we may have expected from weather reports but could not actually believe.  A natural disaster, an out of world experience. I know I will venture out again when things are more settled, trains running, power restored. Right now, I am happy to stay here with my dog and my husband but when I am ready, I will explore again, I will reinvent the new New York.  Slowly, with different expectations.

Should We Take A Moment To Mourn Together?

Mourner. Could be Isis mourning Osiris

Mourner. Could be Isis mourning Osiris (Photo credit: Wikipedia)

Dear Invisible Illness Sufferers:

I’m conflicted. I want to say that we have lost a part of ourselves, a physical and emotional part, do you think it is a good idea to get together in real or computer time to say good-bye to the people we once were? Have we done it ourselves? Or do we just accept and let it go? There is the before Fibromyalgia or Diabetes or CFS, Virus, Autoimmune OR fill in the blank disease________ and after. Think about it, it would be an acknowledgment of our former selves, our loss and our lives now. We mourn people we loved; I am not the same person I was before my father died, I view my life “before he died” and “after.” Maybe we should have a ceremony together for the people we became after our loss, as simple as being silent for a minute at a designated time?

I guess this begs the question: do we ever really accept it 100 percent? We make do, we understand but it’s a way of life that we have lost, forever. I don’t believe that it will ever get better in my lifetime or that there will be a cure. That’s just my opinion. A wonderful approach is given in a book by  Toni Bernhard called “How To Be Sick” which is a Buddhist inspired way of living with your illness. It will teach you things, no other book will teach you.

It has taken me years to truly accept Fibromyalgia, chronic pain and an autoimmune disease called Hashimoto’s Thyroiditis, my activities are now severely limited. Part of my energy used to be used defending myself to people who thought I was out of my mind or a pill popping junkie. Sigh. I can reassure you I am neither of those. Realistically, who would WANT to be like us? Does it sound glamorous to have no energy and to be in pain constantly? It’s not like we take magic pills to make us feel great, there are no pills that take away the pain. In fact, we don’t even remember what pain-free feels like. Of course there’s Fibro Fog but that’s a whole other blog post.

After the imaginary designated time where we mourn our former selves, we give our thanks,  grateful for the life we DO have, for the cyber friends that are in the same situation that UNDERSTAND and for the body that still exists and for the many blessings we hold in our hearts.

Tell me what you think, I’d love to hear from you.

My First Experience with Death

Heaven

Grief Lasts A Lifetime

When I was very young my best friend Claudine and I sat on the floor of my bedroom and played with my two turtles. Apparently I injured the turtle ACCIDENTALLY. I didn’t know it at the time because my father played doctor and I remember the turtle’s frail neck had been wrapped with white bandages. He smelled like the red, antiseptic medicine that my mom used on my skinned knees. I don’t remember being particularly upset over the sudden demise of the turtle but I do remember that my dad, who of course knew it was dead, pretended to nurse him back to health, for me.
That same loving man, my father, died ten years ago. He died New Year’s Eve 2001 an hour before my parents’ wedding anniversary on January 1st. I remember that horrible night in excruciating detail, I was sitting on my bed and the phone rang and it was my mother. “It’s over, it’s done” she said and I sobbed for what seemed forever and grieved for a very long time. I still miss my dad, I will always miss him. Sometimes I do get messages or signs from him and I believe in that. How do you recover from someone’s death? You don’t. Not ever. There will be a new world for you and it will be divided into before the death and after. You are now a member of a new club for adult children who have lost a parent and it’s not a club you ever wanted to join. You have no choice. Intense pain and grief get less frequent with time but there will always be moments, at least for me, when the pain feels fresh and raw. I was in Targets six weeks ago and I automatically turned into the Father’s Day card section. I remember I stood still and openly gasped. I had to hold on to my cart to steady myself. Only then did I stop and remember I had no one to send it to. I didn’t have a dad who was alive anymore in the physical world. Tears filled my eyes and I left the store quickly; my eyes were so blurry it was hard to see.

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I Didn’t Need To Know Mrs. Brady Had Crabs

The Brady Bunch opening grid, season one

Image via Wikipedia

Really? Does everything in the media need to be mentioned and discussed? Couldn’t I have continued picturing Florence Henderson as the sweet mom on The Brady Bunch without her releasing this IMPORTANT info that she actually got crabs from sleeping with some political dude? I know she has a book to sell but does she really think that image is going to make me EVER go out and buy the book? I have no interest in it anyway but now I wouldn’t read if it was free. Even then, I wouldn’t read it because I don’t want to know and I don’t care and because I think it’s so distasteful, I wouldn’t read it out of spite.  Gross factor: Very High. Advertising technique? Epic Fail.

I want to remember Florence Henderson just like the picture to your right. The sweet, simple, home-maker making sure that all her children and hubby were happy, healthy and safe and NOT picture someone scratching their private parts. I could gag. I may gag. Easily. Hopefully.

It’s bad enough when you see those photos that TMZ puts on (and believe me I am not complaining) about “Where are they now” or “Before and After” because the shock value is fabulous but can’t we draw a line somewhere, anywhere like “crabs.” Yo Flo, major image disaster. I don’t even think I could watch reruns now even if I wanted to.

At least leave Alice alone. We all loved Alice and I don’t want to hear a word about her. I don’t want to see articles written about her or photos that she doesn’t approve of. Mrs. Brady, you have ruined your reputation for generations of people. Please, Alice, don’t do the same thing. We love you. Keep Alice clean.

Being A Mom With A Chronic Illness (ChronicBabe carnival)

Mother and Baby

Image by Praziquantel via Flickr

My goal in life, since I was five years old, was to become a mom.  I thought getting pregnant would be natural and beautiful but it seemed we needed a little help. After two and a half years of painful shots, medication and an every day visit to the infertility clinic  for blood work and ultra-sounds I finally was pregnant. I collapsed to my knees behind the closed-door in my stuffy office and kissed the dirty gray carpet in gratitude. I cried with happiness, one hand already covering my tiny belly.

My son was born and we called him Buddha baby, he never cried, he was always happy, a smiling, compassionate and outgoing kid.  He was my miracle baby, my first born. I went to every baseball game for my son, sitting in the bleachers in the rain, and sneaking away to the car to warm myself up.

My daughter came, naturally, twenty-one months after her brother was born, screaming on top of her lungs as she entered the world. I remember going into her room and lifting this red-faced baby girl to my shoulders, she would take a deep breath and her whole body relaxed into my neck.  I was her only source of comfort when she was a baby. I was there for every ballet lesson and dance recital, holding a bouquet of daisies, her favorite flower, in my arms like I was nestling a newborn baby‘s head.

I did everything for my kids and I loved doing it. This was the career I decided on and I wanted nothing more. I stayed home with them even when they got older because I knew they needed me during the tough middle school years. They would never admit it but they were happy to see me when they got home. Working moms called me “old-fashioned” but I didn’t care.

When I was 50, I went through menopause and my body fell apart. I was diagnosed first with Hashimoto’s Thyroiditis, an auto- immune disease. When Synthroid, did not help me at all, I warily shuffled from one doctor to another, every bone and muscle and joint in my body screaming with agony.  My internist had given up on me, she stormed out of the room while I was laying there on the exam table crying in pain.  After visits to many different doctors I was finally diagnosed with Fibromyalgia. I felt like I had the flu, every single day and night, with no fever, my personal definition of Fibromyalgia.

My life changed after that. I became the mom “before” I was sick and the mom “after.” I felt that I was no longer the mom you could always count on. I prefaced everything by saying “If I feel okay that day,” and “I’ll call you the morning of…”  Luckily my children were fourteen and twelve but it was now Dad who got up, made breakfast and lunches and dinner. Me? I was asleep, always asleep and in pain.

I felt lost and sad for years, not being able, physically, to be the mom I once was. Now, I am dropped off at an entrance to anywhere we go  like the handicapped patient I am. I sit alone, on a chair, when all the other parents and children go on a campus tour to see the entire campus. I cannot walk that far. I don’t want to be an embarrassment to my children or a burden for my husband.  I want the kids to remember the mom I was before I was sick but I know they don’t. They probably just remember me as I am today. I am not the mom I was before my illness even though my heart remains unchanged. I am the mom that they have now and because of that I have tremendous guilt and a lot of residual, emotional pain.

Simple Truths

Mind sets: we all draw a line in  our minds, a dividing point, a moral measure, for a variety of  issues: religion, romance, love, food, friends, work, relationships. The list goes on and on and how we stand on something can change like a puff of wind to a dandelion. We all have our own truths. We make our own rules, adjust accordingly and somehow, someway, sometimes because we have no choice, we find our way back. It isn’t always easy.

I met a woman at a party a week ago, Kate,  and her face is still sketched in my mind. Taut, tanned skin, blond, perfectly highlighted hair, her body upright and rigid, wearing a swimsuit with a long flowered wrap tied at her waist.  We were talking about graduations and I said that I will definitely cry when my son and daughter graduate. She said “I never would cry, never at a happy event, as long as I have all my loved ones around me.” Her comment took me by surprise. Her face was hard, still and emotionless; the words emphatic and cold. She swept her hand towards her extended family including her children, her sisters and her elderly parents.  It was as if she was wearing an emotional shield, made of armour, but tiny, invisible cracks were beginning to form.

I felt bad for her, for the innocence that one day will be lost. It’s as if there was a vulnerable and frightened five-year old girl inside her, covered up with layers and layers of an impenetrable facade. It won’t stay like this forever, I thought.  Her family will not always be in this perfect order. I felt sad because I know what it feels like when someone you love dearly, dies. Nothing is ever the same, it’s before and it’s after and nothing in-between. Your world changes forever at that moment, frozen in time.

I nodded my head in agreement with her bold statements but mostly, I wanted to somehow keep her safe, or prepare her though I knew I couldn’t.  I knew she was appreciating everything she had now but was in no way prepared for the future. I am NOT saying that you can ever be prepared but I knew, in my heart, that this particular woman, will become undone, so unable to cope. I hope I am wrong but I had that strange eery inner sense that I get sometimes, that 6th sense. I’m usually right. Let’s face it, we don’t know how WE will react when an unknown situation is strewn our way.

I have been that little girl, in some ways I still am.  I was the girl who grew up worried and anxious and afraid. I’m not entirely sure why, part nature, part nurture perhaps. Can you ever be prepared for a life that can change in a second’s time? Do we worry about everything because something is bound to happen? Why can’t I imagine the good, the great popping up like beautiful purple and yellow, blue and red wildflowers instead of focusing on the bad?

I try so hard, and have failed so many times, not to worry about the future. “Don’t meet problems half-way” an old, lesbian, Irish ex-nun friend once told me. She was absolutely right but sometimes my mind wanders, drifts to the “what if’s.”  I have to remind myself, like I am doing now, that we have no control over ourselves or our future.

Who would have predicted a massive oil spill in the one element, water, that I have always loved so dearly. My fantasy was to live near the beach somewhere, next to the turbulent, gentle, overpowering ocean with its moody green waters and it’s whipped foam topping, crashing relentlessly against the giant rocks. The dream seems gone now, because of the BP gas spill that threatens our waters and our animals, innocent animals.

Not worrying is a lesson I need to learn and relearn and I must be failing because it happens over and over again. Why can’t I learn it, I wonder?  Maybe it is just the way I am?  Maybe I was never reassured enough as a child? I have faith too and even with that, I sit up nights, anxious, with my head playing mind games, rolling tape like the old-fashioned movie cameras, reel to reel, over and over and over again.