An Open Letter To The World Via The New York TImes

Dear World,

Manufacturers, Researchers, FDA, DNA, NPR, and ABC,

I am speaking on behalf of many people who think the same way I do. No, I do not have empirical evidence or research to back my claim but guess what? I don’t need it. Apparently all the studies that have been done in the past by your researches are, to be delicate, for shit.( Sorry, are not substantiated)

One day you tell us to drink milk, lots of milk so that are bones are strong and healthy. I’m sorry I believe I heard something about “drinking too much milk is bad for our bones?” What?  This type of stuff goes on and on and I for one am sick of it.

I already wrote an essay in my blog about anti-anxiety pills for anxious people are going to give us, most probably, Alzheimer’s disease. What a great idea to tell someone who is anxious to begin with, without alternative ideas. I have anxiety issues, I have no problem revealing that and when my psychiatrist told me, albeit rather nervously, about this new study, she gave me a handout of a copy of the study.

Maybe that would have been handled better if this had begun in the beginning of the session and discussed with alternatives. What happened after being told? Major anxiety. After processing this new information, if indeed it is true, I need to think of quality of life and choices. But, that is something we should have talked about BEFORE those five sheets of paper were handed to my sweaty palms.

I find it wrong that open communication is allowed OUT so very cavalierly and THEN retracted months or years later with the opposite findings. Basically, all this media is making us crazy. Would it be so wrong to ask all of you to “shut the blank up?”

Do we need to know every simple thing at every minute of every hour of every day? Some of you want to know, some of us don’t. Yes, I know freedom of speech but what about something in the middle? I don’t want to know everything, every minute in every detail. Plus, the media exploits serious events, I truly can’t handle it. That is why I choose NOT to watch the news at night because there is enough madness, violence, gore and blood in the world that I don’t want to be reminded of it before I TRY to go to sleep. Do you understand?

All I’m asking is for is for you to think and be considerate. Think before you speak? Do complete research before you announce news like its one of the Entertainment Shows on television. At least they are honest, their intent is to entertain.

What you are doing is tormenting people. Do this, no do that. So now, when we get anxious, we have to think twice before we take an anti-anxiety pill because for years it has been the solution to so many of our problems, now we live in fear, choosing quality of life vs. quantity of life. Please, just think about it.

Sincerely yours,

Looking For Dr. Lisa Sanders, Dr. House, The Mayo Clinic?

Dear Dr. Lisa Sanders, Dr. House, New York Times, The Mayo Clinic or any doctor, active or retired that wants to save a life and help a really nice, frustrated, sick woman.  If you are looking for just the money, trust me, you are not the doctor, if you are looking to make someone who is desperate, happier, even if there is no answer, you’re my person. My medical person.  (if you watch Gray’s Anatomy you would understand this, if not ask someone who does.)

I am desperately seeking a miracle, yes, a doctor or a team of doctors who will put all my different symptoms together (for the last eight years) and try, just try, to figure out the root cause. Believe, I have an idea but not the credentials. I don’t have the knowledge or the education, just an inner voice. That leaves me with nothing. If there is nothing that comes out of it, I UNDERSTAND but I will know, someone really tried.

I have an internist who gives me 7-8 minutes and two specialists who are absolutely amazing but they send me to different specialists and it is too much for me to handle and take in. You understand, right?

The Mayo Clinic in Rochester. (Photo credit: Wikipedia)

 

 

 

 

 

 

I know the Mayo Clinic would take me! I have about six doctors who would gratefully write a letter to get me inside the Mayo Clinic and off their backs. Do they have the equivalent of financial aid?  I probably would be the most interesting and mystifying patient they have seen in a long time. Trust me, I’m not bragging. Living in my body and brain is pure hell.

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I asked, okay, begged, two of my nicest specialists today, my cardiologist and my nephrologist if they could assign me to a medical student to take on my case, you know the way they charmingly do in Gray’s Anatomy. They both shook their head within a second and laughed. Sure, they would like to help but they can’t. Of course if I had A LOT of money (which I don’t at all) I could hire a private concierge doctor and maybe that would help me, yet break us financially and there’s no guarantee. Honestly, I never heard the word “concierge doctor” in my life. As for random medical students to assign them to my case alone, they laughed out loud. Gray’s Anatomy is truly a fictional fantasy. I want to be someone’s person. (Ask a friend.)

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I’ve thought of the Mayo Clinic, Johns Hopkins and I need to do more research on that this week. At today’s nephrologist’s appointment he literally ( a 58-year-old) referred me to a pediatrician. Yes, it is not a typo. Supposedly, there a doctor who specializes in low blood pressure and syncope who sees children and on occasion, if begged, a woman of thirty, helps. My doctor is going to talk to him and plead with him to see me. P.S. he said no  but referred me to a pediatric neurologist,  (what?)

DO YOU SEE WHY I NEED HELP?

He also suggested a fat biopsy. A FAT BIOPSY? What on earth is that? I googled it and it really made no sense to me plus it’s always a bad idea when I research something, a very bad idea. He also recommended Hormone Replacement Therapy. My jaw dropped. He said what?

Yep, the dreaded  (my own personal view) of adding more medicine to my body?

I also have Eppiglottitis, and have had this three times already. Figure that one out. I have posted many articles about it, it’s deathly pain, its sword-like plunge  beneath your throat. Many readers have read this article and many ask me questions. I know there is a vaccine to prevent this for infants, I’ve asked several doctors about giving it to me. There answer is a confused look on their faces and they say “we can’t.” Why, I pursue, “because it’s for children.” Take a chance, do some research, you can’t even try?? Have you ever had that horrific pain? I also fall down from low blood pressure (we think) and randomly shake.

I have more symptoms but I don’t want to scare you away!

Does anyone have any connections? I’m realistic, not stupid. Please forward to anyone you may know at The New York Times or Dr. Lisa Sanders or The Mayo Clinic.

Please.

Thank you in advance.

 

 

 

 

Baby Boomers Stuck In Traffic

We’re a generation of being stuck, not really here nor are we there yet, we are right smack in the middle. In the middle of what, you might ask? Well, we are still a little unclear about that too but we know a big change is coming soon. A big, big change. Now, we are just about ready to handle it and we are patiently (okay, not so patiently) waiting for it to find us. It will, I’m sure. We’re looking outside and within.

Thankfully, unemployment has forced many people to plan for the next step in their lives  a little earlier than they wanted. The early push, through, made us go through the stages: the terrified, freaked out, tearful, frenzied stage and we have now started to calm down and have a game plan. We have some sense of what we want to do in the future, which in itself, is a huge step and stress reducing too. We have no choice.

English: Trees and sunset at the beach in Colington Harbour on Colington Island, North Carolina. (Photo credit: Wikipedia)

What to do, where to go? Aging Baby Boomers in a frenzy? Yep, I’m right there with you, I agree, “it’s time to figure out our path.” Let’s face it our children are now grown adults, very soon they will be college graduates, they don’t need us, in the same way, as they did before. I’m not sad about that anymore ( of course, I was) I’m proud of both adult children.

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It’s time to focus on my husband and me and to start again. Living in the same place for many, many years has been amazing, seeing my children grow from babies to adults has been the best present anyone could have given me. I both love and like these two very different people. They have their own lives and are accepting that their lives will change too, not necessarily by choice but out of necessity.

We can’t afford to stay in the same, expensive neighborhood, (paying for school taxes was FINE and (that were worth every penny  when they were still in school !!! )  but they graduated and they don’t go to school here anymore. It’s time to think about moving on. Where to go? We are not sure just yet but we both agree it’s time think about it. Where to go? The million dollar question. Any suggestions?  One state, maybe one country at a time.

Having worked through the age issue, the comfort issue, I am now looking forward to our next chapter. I know one important thing, for me, I need to live near water and we will rent a town house or condo, not buy, at least not for a year or two. That’s in my comfort zone and it’s my turn to have a say. A strong say.

Picture us anywhere, Florida, Maine, North Carolina, off the coast of Spain? We’re not sure where we are going but we know for sure we are thinking about being on our way.

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It won’t be easy, change is always bittersweet. But, overpaying for something you can’t afford just because of familiarity is certainly not the way to go. Change will present itself to us, I’m sure. Our eyes and hearts are open, we’re listening.

 

 

 

 

Baby Boomers: What Are We Now, Chopped Liver?

English: The New York Times building in New York, NY across from the Port Authority. (Photo credit: Wikipedia)LickIt must, because apparently The New York Times no longer wants the Boomer section anymore. Yep, they are kicking us boomers straight to the curb. that’s the reason that The New York Times has kicked Baby Boomers to the curb. Why? They won’t say and believe me their fans have asked.

Like a swift unexpected kick in the ass, readers of The New York Times (loyal readers I might add) found out that they were removing the Booming column that delighted us all. Really? Yes, true fact. No explanation other than “blah blah blah.” It would be in here or there maybe on Tuesdays but without Michael Winerip who we have all grown to like and respect. I liked this dude, he was real and approachable.

What the hell are you thinking? I guess we are not important anymore, make way for Generation Whatever.  I was born in 1956 to the best of my knowledge I’m a Baby Boomer. Please remember this, we haven’t dropped dead just yet. You needed us back then (hint: Woodstock) and now you have cut out a large part of your readership. We are still consumers and you have let us down.

Eliminating or phasing out the Booming section is disappointing, I could relate to Michael Winerip’s essays and now we’re getting shoved aside, as if we don’t feel old enough. The New York Times, with whom we’ve been faithful to, is giving us the heave-ho. It feels like yet another slap in the face to those of us in The Sandwich Generation.

Everyone wonders what the reason was that they decided to take that section out. But, of course we don’t expect them to tell us the reason. That is way too old-fashioned. Manners? Nah, that was in the fifties. Back where if you didn’t get a job the boss called you on the telephone and told you why, when things were simpler, more honest, and we didn’t have a hundred choices of everything from paint chips to lipstick to television channels to drugs.

Let’s face it, it’s not the best of times for many of us. The economy stinks (I’m trying to be professional here) unemployment is really high, we’re caught between taking care of our aging parents, ourselves and our grown up children.We are still known as The Sandwich Generation, remember that? It’s been the Winter from hell and it isn’t over yet and while the Booming Section didn’t change our world it added a little fun.

Don’t flatter yourself New York Times. You’ve become replaceable as apparently we have too. We stayed with you through all your changes, now it’s our turn to say good-bye.

http://youtu.be/EGHRrEvpuk4

Boomers: 1946~1953 to 1964

This would make baby boomers, in the year 2010, somewhere in the ballpark of 46-64 years old.

Gen X: 1965 to 1976~1982

– See more at: http://theechoboom.com/2010/09/dateage-range-of-baby-boomers-generation-x-and-generation-y/#sthash.MrX7nqmo.dpuf

Boomers: 1946~1953 to 1964

This would make baby boomers, in the year 2010, somewhere in the ballpark of 46-64 years old.

Gen X: 1965 to 1976~1982

– See more at: http://theechoboom.com/2010/09/dateage-range-of-baby-boomers-generation-x-and-generation-y/#sthash.MrX7nqmo.dpuf

Free Write: Kellie Elmore (Resolve)

Description unavailable (Photo credit: wakingphotolife:)

I stared into her eyes of lead. I would continue to stare until she blinked. She had been abusing me verbally for years. I would take it no longer;  she was the one who was mentally unstable not I. As a child and teen I spent hours sobbing from her nastiness, the cruel streak that ran up and down her ruthless spine. I refused to call my mother “mom” I could barely call her by her first name, Joyce. It was a little better when our dad was alive but not by much; she hid it from him but we knew better.

People who met her thought she was charming and well-mannered. Peals of laughter wafted from her enraptured audience, that sat around her at the tennis club. Her friends would hang on to every word.  I’m sure to the public she appeared charismatic. She introduced me to her friends without name, as if I were her maid. Maybe my extra twenty pounds didn’t fit her expectations of perfection or beauty. I had always felt ugly and ashamed of my body. As a child, I hated to shop with her, although she forced me to, never once thinking about why I didn’t want to go, not bothering to question me about it. Instead, she left magazines open on the oak, wood table in the kitchen with the New York Times open to the black and white pages of “Sleep-Away Camp For Overweight Girls.” Subtlety was not her strong suit.

She fully admitted that if she was in her twenties now she would have lived a different life. She would NOT have had children, she would have had a successful career,  she would have lived in NYC and would have been an executive. She would have gone to the theater, eaten dinner out in small Parisian cafes, lit by candlelight, attend the ballet. She wasn’t the “motherly type” we all knew that. We think Dad even knew that but he humored her. Her nurturing skills did not exist, there was no evidence of her common sense skills either. She blurted out words and sentences, never thinking about how the other person would feel, never knowing the hurt feelings she could cause because she only thought about herself. “She didn’t mean to do it” she would say as her defense; she would vow that she would resolve that problem by trying to change. We rolled our eyes; this was her standard line; we all knew that it would never last. She might try for a day or two but then she would turn it around and become nasty, trying to make us feel bad for her lonely life. My little brother, Brian, took it the hardest. All I wanted to do was protect him, to take him out of this house and run away.  I just needed a few more years to earn money and then I would take him with me and we would disappear. She could have the life she wanted then, we didn’t care. We just wanted to get away from her poison. We still hadn’t gotten over the loss of our father due to a massive heart attack many years ago.

Joyce was a troubled woman, an even more troubled child. Her own parents had been killed in an automobile accident when she was seven. She had been adopted quickly by a family who adored her yet she never got over her own anger. She never trusted another soul, because they could leave her too. As a mother she knew her children would leave her when they grew up, so why get attached to them? This was not the life she wanted anyway.

Discovering New Books

Image via Wikipedia

Dear Borders, I Miss You.

Once upon a time, in my perfect world, there was a bookstore named Borders in the next big town over. Unfortunately, my life took a huge dive when they closed, my social life as well. Borders was such a great place to meet up with friends, you could both look for books and have coffee downstairs and talk. I would go there at least twice a week if not more. Since they closed, I have certainly have saved money and I use the library much more often, I miss having a place to look at new books.

There used to be a small independent bookstore in my town but that closed too, a devastating loss to the community. I think it’s a horrible situation, are the only bookstores on-line now? That seems sad to me.

I get ideas on-line from looking at Amazon.com, from magazines that review books, from the NY Times Book Review or from a glance at a book cover I find riveting. I ask friends what they are reading or do research on new fiction and non-fiction books. I love the library system and I appreciate them, now more than ever, but I do miss Borders, in every possible way. I thought of it as my home away from home, with their big comfy chairs and everyone talking books. I would start random conversations with strangers perusing books, it was its own community. Sigh, it’s a new world; not one that I particularly like.

*I Was An Airline Brat

Image via Wikipedia

There was a very good article in “The New York Times”

Whatever Happened to First Class?

By JESSE McKINLEY

Published: February 10, 2012

that I really liked and I wanted to share my own memories since I started flying when I was nine months old and stopped abruptly when my free airline tickets, from my dad, who worked for TWA, stopped at my ripe, young age of twenty-one. Or at least not yet twenty-two.

Flying was my dad’s dream, and no, he was not a pilot even though in his heart he thought he was. He worked in offices and volunteered extra shifts if there was an accident and flew to St. Louis to buy fresh milk for my older sister when there was a milk strike in NY. He loved everything about flying and traveling with our mother and when we were children we came along, almost always. A visit to Grandma’s house for us was to fly to Vienna, Austria or Tel-Aviv, Israel. I thought nothing of it as a child, it’s what we did; my older sister and I did have to get dressed up in a matching sweater and skirt sets, identical (except for color and size.) We were not allowed to wear pants, God forbid jeans. We had to dress up formally before each flight, our dad’s rule because we were flying “subject to space” which meant we would try for a flight but since we were “non-revs” (non-revenue passengers) we never knew when we would be able to get  on a particular flight, looking good wasn’t optional in our house. We had no choice. In fact, back then, everyone dressed up for a flight, there were no jeans or sweat pants….they didn’t exist.

If the flight was fully booked our dad would make the shape of a hanger with his hands and shake his head dejectedly. We knew that meant “a cliff-hanger” fully booked, not a great chance of getting on but we would go anyway. There were times we were already seated and buckled in and the door closed when in dreadful embarrassment they called our names over the intercom and we had to unbuckle, get up, gather our bags and belongings and march or rather limp off the plane if paying passengers had arrived. Mortifying.

We may have complained about getting up at four in the morning to go to Phoenix, AZ. but once we were on the flight, our vacation had started. Flying was part of the vacation not like now where it is something to live through with great dread and anticipation. Was there a difference in first-class and economy? Sure, but either was fine. We always went economy (and we could stretch across 3-4 seats back then) until one day I think we begged our dad to try first class, it was a matter of twelve or eight dollars per person. It was hard to go back to economy after that.

First class had luscious, huge seats, especially for young adults, a printed menu with delicacies to choose from. I’m drooling just remembering them. Beef Wellington?Steak? Salmon? Really, really good, gourmet food. I remember one of the desserts, it was the ice-cream sundae cart approaching me. I saw mountains of vanilla ice cream come headed towards me. Near it was a huge silver bowl filled with whipped cream, hot fudge sauce, sprinkles and many other condiments. “Make your own sundae” in the best of times was good, but while flying through clouds? Heavenly.

I’d like to add to Mr. McKinley’s post that my ideal flight was boarding the TWA 747 that had a winding staircase to the lounge upstairs with comfortable soft and wide chairs and private window seats. I remember reading a book up there and feeling like hot, um, bananas!  That same trip, before landing, they served a snack before landing; it was the biggest, hero sandwich, I had ever seen, filled with possibly every kind of meat and cheese that existed. The enormity still bogs my mind. There were drinks or soda, snacks. How could flying NOT be part of the vacation, it was the greatest in relaxation; no one could reach you and why would anyone want to stay in touch on vacation? If you had told people back then that it would be a posdibilityin the future,they would have called security at the very least.

I don’t know when it started but slowly the airline industry disintegrated. There was no more food (gasp) you had to pay separately for everything, even bags and suitcases. People didn’t treat you like royalty anymore. After 9/11 the whole world changed and it will never be the same again. Some people refused to fly after that forever. I wasn’t thrilled with the aspect of flying but I flew many times. It became a horribly, long, painful process. I am personally grateful for the TSA agents that check and recheck but it is hard work for them. Nobody seems to appreciate what they are doing all day long or at night. Not fun for us either but still…

I will probably fly again at some point but it isn’t something that I look forward to doing. The point of relaxation does not begin at the airport but probably a day after you have reached your destination. Is it worth it? I’ve always thought it was but as time goes on I think more about it. I was so very lucky to see so many countries when I was a kid, I know I didn’t appreciate it then. It will never be the same and that is one dreadful loss. I’m glad my dad is no longer on this earth to witness travel the way it is now, he would be horrified, as those of us who remember “the good old days” are.

* a few sentences were used in the comment section for the NYT on Mr. McKinley’s wonderful article.

The Sweet Scent Of A Perfect Peach

Image via Wikipedia

In my imagination I think we would be friends if only we lived closer together. I would give her, and only her, the true secret ingredient to my super moist banana chip/raisin bread. Her mouth would smile widely and crumbs would spill happily from her mouth as she ate it with delight; her big doe eyes would nod in agreement. I can’t compete with her cooking of course, she was born baking and cooking but there is no competition between friends. We laugh together at my lack of cooking skills and she constantly admonishes me and tells me she will force me to learn. Knowing her, I have a feeling, she will make me follow through.

On the side of her house I imagine her large garden where she picks her own deep, red  tomatoes from the vine and takes a big bite of one warmed by the sun. She has sunflowers, big tall, brown, vibrant orange and yellow, about fifty of them, near the rows of green peas and lettuce and carrots hiding in the moist soil. Next to them, sweet butter corn  grows tall and stretches to the sun like a morning yoga pose. Wildflowers grow nearby, purple, yellow, pink, white and the blue of a delicate robin’s egg. There are so many vibrant and intense colors in her garden, it’s like staring at a painting by Matisse.

I’ve never had the actual opportunity to meet an idol, someone I’ve cherished since I was a teenager, but I came close, by association, a few weeks ago. I spoke with her warm and friendly assistant and it was such a pleasure. Melissa, her assistant, told me something I will always remember. “She liked your writing and wants you in HER group.”  That lifted my spirits for days. While I could not go to the current workshop she was holding I hope one day to meet her and attend a different workshop.

I read her first book about one hundred times; a book that still sits on my living room shelf now,  forty years later. I share my house with my husband, a son who is soon off to college for the first time, a daughter who will now be a senior in high school and a nine-year old adopted shelter dog named Callie who is sleeping on top of my feet. That first book has been carted from my parents’ apartment to college to every city I have lived in.  We grew up together, she and I, for a forty-year time period, she just didn’t know me.

There’s no doubt in my mind, from her first magazine article in the New York Times that she would grow up to be an amazingly talented, gifted writer. True to herself and her family and friends. She grew as a writer and as a person, I wonder if people expected her to stay nineteen and if that was hard for her? We all change and grow, make mistakes, learn; stagnant is boring.

I think she would be warm and funny, intense about her work and friendly, she probably just baked apple muffins with a crumb topping and served it with sun tea. There’s a colorful tiled table that holds chocolate chip and oatmeal raisin cookies that she whipped up in a spare hour;  sharp, white cheddar cheese and crispy pita chips would be nearby. Family and friends are always invited to her kitchen; there are always people and animals nearby.

I imagine sitting on a large white patio, rocking slowly on our rocking chairs and exchanging whispered secrets and watching the red sunset fall slowly into the water to form three lines of color, orange, dark green, ultimately black. I remember when my family and I used to go to Cape Cod, when our kids were much younger, at every sunset we would sit on the sand, other people around us, and we would wait for the sun to set. When it did, everyone clapped. That is my idea of heaven, living near the ocean, watching the sunset with strangers sharing stories, listening to Reggae music provided for free. Sitting still in front of nature as if we were in a theater waiting for the curtain to rise.

At night, in my imagination, we would creep down the stairs and meet in the kitchen unplanned. We would burst into giggles when we found out we were there for the very same thing.  I always snack after I am supposed to be asleep and I eyed a bowl of ripe peaches on a small, round table that she had recently repainted in pink-rose paint. That first bite of that juicy peach would make me happy, so happy I  can’t even describe it. This peach, this wonderful gift from nature was just perfect. It was ripe, juicy, sweet and had a silken texture. The juice rolled down my chin and I groaned with every bite of happiness. It was the sweet scent of a perfect peach with my new friend, laughing into the dark night.

Dedicated to Joyce Maynard and Melissa

The Map To Nowhere Fast

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I have a weird feeling of unrest and stress, slimy blue- green and flourescent orange winding its way around my brain is how I picture it, how I feel it. No soothing colors of white and yellow and beige. Fake colors, unnatural.  I frown more than I smile and as hard as I am trying to focus on the positive it’s not easy. There is so much going on in my life that it’s hard to focus. I don’t think it’s just me though, I think it’s a lot of people.  It’s a feeling, not a good one, somewhere between the roads of anxious and depressed, stopping at weary.

There are natural disasters all over the world and I am sure we all feel, not only heartbroken for other people, but scared. There is too much sinewy stuff whirling around and no happy place to settle. What happened to my “happy place” images? Why am I only seeing the rain battering the purple flowers instead of the blooming of the flowers alone.

There is tension inside my house, we are in “the sandwich generation” that I used to read about. It isn’t fun, it’s scary. The “baby boomers” who have restless teenagers and aging parents who are alone or ill or depressed. I am that “baby boomer” now except I have the added affliction of my own “chronic pain.” Fibromyalgia and Hashimoto’s Thyroiditis do not do me any favors, I walk along slowly, painfully, I stumble through different medications and expectations. Very low expectations.

I also have narrow-angled glaucoma which is a dangerous disease or as one unfriendly opthalmologist put it “you could go blind in an instant.” Quite a bedside manner, don’t you think? Needless to say, I stopped going to him. It’s funny that I barely write about this condition, maybe it’s pure, frigid fear. Maybe there is only so much pain I can handle. My brain and eyes get hammered, with laser shocks, every few months by a doctor that I once believed was very good. I don’t think so anymore. “In twenty years of practicing, I’ve never had a patient whose eyes kept closing up like yours do.”  Every time I go to the city he lasers my eyes again, because the hole he drilled into me has closed. He does this procedure either in his office or in the hospital with no pain relief; imagine barbed wire going through your eyes and brain, quickly, twenty or thirty times in a row. The eye drop he casually puts in gives me incredibly painful headaches (migraines?) I do know that the pain I feel is barbaric, no pain medications, no anesthesia, no break. Over and over again; fast and furious.

The gray, dreary day does not help me since I feel overwrought and unfocused. I am dealing with both chronic pain, (Fibromyalgia, Hashimoto’s Thyroiditis) and new back pain that feels like my back bent and broke itself during sleep like a twisted pretzel you find in any mall. I am trying to accept my life for what it is, both bad and good, often simultaneously. Change is in the air like a dog-sniffing a new scent, it’s just hard to predict when and where things will happen.

I read an article in the NY Times today about a young couple with a young daughter. Each parent has cancer. That, is a problem I say to myself, not the dreary workings of an often too-emotional, anxious and pain- filled mind. I am so sorry Nathan and Elisa. You and your baby have my prayers because perspective is the greatest gift of all. I will speak no more.

A Dream Is A Wish That Your Heart Makes

Image by Bob.Fornal via Flickr

I speak with a raspy whisper a voice unknown to me when I was younger. Starting in high school I became the adolescent lioness that practiced roaring with my brown braided hair that ran down my back in lanky curls. I learned to lick my ferocious lips with pleasure getting into funny escapades with my best friend Paula. I spoke with great assurance to teachers and professors whose titles meant nothing to me. My body language stated that I was their equal because I too was involved and able to keep up a conversation; I read the book review from the New York Times.  Of the many poems I penned one was selected as the winner to  recite in person to the poet, Rod McKuen. I mattered back then and I turned heads as I wore my black leotard that clung to my body like a kiss, my worn denim jeans that hugged my body with a warm embrace and my brown clogs that clicked and clacked happily down the hallways. I had a voice back then, a sweet, cajoling, flirtatious, strong voice that I no longer have. I had a lot of dreams when I was younger but in the past four years, saddled like a working mule, with Fibromyalgia, Hashimoto’s Thyroiditis and Chronic Pain I seem to have lost them.

I used to dream that I would publish a book and it would be a best-seller. I saw myself on Oprah, chatting it up, I could practically hear her whisper into my ear: “you go, girl!”  Oprah and I would be friends, and I too would get all the presents that the audience gets, including: the trip to Austrailia, a brand new car wrapped in a giant red bow and one present each of ALL her favorite things, retroactively, of course.

I used to sing out loud, off-key and high-pitched, but that didn’t stop me from believing that Simon and Garfunkel or John Denver would welcome me up on stage to sing with them. I could see the white stretch limo parked outside my apartment building to pick me up. All our neighbors and friends would be hanging out of their apartment windows to see me. After that, I was so sure that I would be the first mega millions lottery winner that I worried about security and who would handle my new financial windfall. Could I deal with all this money? Four years ago with my diagnosis of Fibromyalgia and Hashimoto’s Thyroiditis, things changed. With the focus on my pain I lost all of my dreams and tried to learn how to cope.  The dreams died like fragile moths hitting a glass door, violently and forever.

I always dreamed I would get married and when I was 30 I did. I married my best friend and we’ve been married for 22 years. A year after our wedding we started trying to have children with no luck. My dream back then was to get pregnant and have a child, more than any of the previous dreams wrapped up together. Finally, after two and a half years of painful injections and grueling testing at an infertility hospital I got pregnant and that was one dream that did come true. I loved being pregnant and I glowed with delight, all the more because I had experienced such pain and anguish with the infertility process. When my son was one I got pregnant with my daughter and having a boy and a girl made all my dreams come true.

While I daydream about traveling to Holland to see the cheery tulips bloom or a trip to Spain’s countryside I know those dreams come with a huge price tag now: pain, special accommodations, and sacrifice. I am not the young traveler I used to be, I worry about traveling and all my limitations. I’ve accepted the aches and pains and sore muscles and swollen joints of Fibromyalgia and Hashimoto’s Thyroiditis. I live with the chronic pain and the cloudy haze that encompasses my brain.  I can’t entertain the thought of a possible cure because I couldn’t stand to live in my body, hoping. I would not be able to cope with life as I know it today; my skin crawls stealthily out of my body just imagining it. I need to protect myself  and my friends from that faraway fantasy. If I could protect those I love from heartbreaking devastation and pain I would. My new reality is giving up on a lot of dreams that I used to have; like my size 10 pants, that no longer fit me. My new dream is trying to appreciate the good things I do have now: my family, my dog, my dear friends.  If I could I would spin a protective web, thick like golden honey that would protect my family from pain and heartbreak. Living in the here and now, appreciating every moment that we do have is my everlasting, unwavering and constant dream. I had to redefine my dreams as I had to redefine my life, my life as a chronic pain patient.