- My First Album
- “They will take your soul if you let them so don’t you let them….”
The first album I purchased was a record, a 33, not that it would make sense to anyone in any generation other than mine. It was Carole King’s Tapestry and I remember sitting on the hard, steel beige cover of the radiator in my older sister’s room filled with full-fledged teenage angst. I sang along to “Will You Still Love Me Tomorrow” and “You’ve Got A Friend.”
I sang the verses of “You’ve Got A Friend” focusing on “people can be so cruel, they hurt you and desert you”….I had a good friend who moved away and she swore to keep in touch with me. It didn’t happen for many, many years and I was hurt. Deeply hurt. I sang that song, over and over again,while I peered out of the dirty window from the sixth floor apartment building to the dark, empty and cold pavement below.
- An Unlikely Delicacy
- Sweet and Salty: Don’t Judge Until You Have Tried It !
Pizza and grape jelly, so easy. I discovered it in college when the pizza was dry and I had packets of grape jelly. Instant combination! Salty and sweet at the same time, what more could you want? Also, scrambled eggs with American cheese and strawberry jam, cheddar cheese on toast with butter and honey. Yum. I can see my friends and family groaning but it’s true, I do eat these food items frequently. Once, just once, I ate a tuna fish with peanut butter and jelly sandwich. It was pretty good but I’m in no rush to eat it again.
- Previous Answer
On one of those freezing days we suffered through recently I forced myself to do a couple of errands even though with Fibromyalgia, the 50 mph winds and cold temperatures are not my friends. I was proud after I did my first errand but then I fell on a step, hard. I found myself sprawled and hurt in front of a store. I landed heavily on my left wrist and right knee. I had to wiggle my body closer so I could tap my nails on their door. A few times. I felt like Christina, in Andrew Wyeth’s famous painting, Christina’s World. Finally, two women came out looking at me like I was a drug addict, alcoholic, or homeless person that decided to crash there for a good time. The women opened the door a few inches. I said “I fell, I’m hurt, I can’t move, can you help me up ?”” I can still see their suspicious faces as if I had hit them up for some heroin. Finally, a man came running from the back of the store and moved the bitches, I mean women, aside. “What happened,” he cried “are you hurt? Let me help you.” I was so thankful to hear kind words I could have cried. He came over, pulled me up, then made me come in to the store to sit down and asked if I wanted some cold water. This man became my prince for the day.
Driving home was excruciatingly painful but I had no choice. When I arrived, I sat down on our faded, green living room couch, put my head down and stayed there, not moving. A few minutes later my husband came in, looked at my face and said “What’s wrong?” I said ‘I fell’ and then told him the story. My wrist was incredibly painful. Knowing my history with loose bones and plenty of breaks and sprains, my daughter drove me to the doctor’s office. She’s 16 and a half, has her junior license and she sailed through the streets remaining calm, kind and mature.
An x-ray was taken and I returned to his office for the results. I was thrilled that it was not broken or sprained but also incredulous because of the pain, I couldn’t move my hand. He asked me for a list of medications that I took and I said Synthroid and Savella. His eyebrows furrowed, his voice became louder and firmer and he asked “what do you take Savella for?” I answered “Fibromyalgia” and then I saw it. The flicker of suspicion in his eyes and the dismissive nod of his head. I then asked him what I should take for the excruciating pain and he snapped like the arrogant lizard he was and said “Motrin, that’s it.” He shut my file loudly and ushered me quickly out the door. Fibromyalgia is still, for some people, a mystery and a question mark. I hadn’t seen that flicker of hostility and disbelief in a long time; I will never see it from THIS ignorant doctor again.
- My Favorite Place to Drive
- “Take Me Home, Country Roads”
I would be driving on country roads, passing mooing cows and prancing chestnut horses. I would drive slowly past the dancing goats and the green grass vibrant with color and misty with dew. I would be in my (fantasy) yellow Volkswagon Beetle. I would have the windows down as the warm air breathed life into my hair and skin. Of course, my favorite music would be blasting. I would listen to old tunes, James Taylor, Simon and Garfunkel, Joni Mitchell and my new favorite, Josh Radin. My dog would be in the seat next to me and I would talk to her and she would be stretching her face into a broad smile. Two bottles of water would sit next to me for when we both got thirsty. The trees would be in bloom, it’s the height of Spring, daffodils have sprouted and so too exuberant tulips in red, pink, white and yellow. I would stop for a picnic because everything tastes better outdoors and I would lie in the grass, on my back and let the soothing sun kiss my face my face and body.
I look back at the wistful essays I wrote in the past about this disease combination that I have. What strikes me now is the hope and innocence that I had back then. I thought if I could be on just the RIGHT medication, my life would go back to “normal.” I know now that normal is just a word and a dream. I’ve had these illnesses for over four years, with three different doctors and probably over 15 drugs in some combination or other.
I don’t know when I finally accepted emotionally that none of these drugs would make me feel so much better but it wasn’t that long ago. I’ve accepted that I have the limitations that I do: the muscle aches and pains, joint pain, constant leg pain (I don’t know WHAT that is from), the occasional bout with Irritable Bowel Syndrome, the fatigue, forgetfulness, weird sleep patterns and just about every other symptom that I could have at any given time. I’ve come to a point where even if I am not sure it is Fibro-related, I just assume it is.
Sometimes I need to clutch the banister going up and down the stairs, sometimes I don’t. There is NO pattern; it depends on the day, the hour, sometimes mere minutes. How can we be expected to remember all these changes that happen at any given time? I can’t remember what I had for dinner last night. I go into a room to find something and forget what I am looking for.
Somewhere along the line, I gave up and gave in to this mystery disease. There were times when I even questioned if I had the disease, although I know I do now. The stiffness in my back, and in my shoulders should have convinced me but I used to blame the brown overstuffed pillow. The feeling of helplessness is legendary yet the one good feeling is the support from other Fibromyalgia sufferers.
I am now on Savella, Plaquannel, and Tramadol but I am sure that it will change soon. Am I better than before? It’s hard to judge since this illness is so inconsistent. From one Rheumatologist appointment to the next things may feel different but on the pain scale, that I am beginning to despise, there’s never a lower number. I don’t want the “big guns” of medication again, I have been there, done that, and landed in the hospital overnight. With permanent Fibro-Fog I can’t remember how I felt eight weeks ago; it all gets jumbled up in my mind.. Better? No. Worse? Not really. Pain? Absolutely. Stamina? None. Forgetfulness? Always. Our short-term memory has been stolen from us.
It’s not that I have given up (maybe it is) but I’ve accepted that this illness is not going anywhere anytime soon and most probably there will never be a cure. The feminist in me thinks that if this was happening predominantly to men, there would be more research, more sympathy and certainly, more recognition and credibility.
I go on college tours with my daughter and son and I sit through the information sessions but when they go on the tour, I find a chair and sit alone for ninety minutes. I could barely get to the information session because we had to walk five blocks but going on the tour is absolutely impossible. Only people with Fibromyalgia know how this feels. Any other physical handicap gives you sympathy and an unspoken pass but this chronic disease is invisible. I feel bad, guilty, and think I am a disappointment to my children and my husband. This is real life and as much as I know I can’t help it, there is still part of me that is crying inside, alone.
- If I Could Read Minds
- When you say “hello” I know how you are feeling….
I would definitely read minds, but not to freak you out, I have a small amount of that ability already. I didn’t ask for it or train for it but I have always been super intuitive. I sense things, feel things, when others don’t. I have learned not to be scared of it, not to be proud of it but just to accept it and honor it. I have always been a very sensitive person (sometimes it’s a gift, other times it’s a curse) even when I was a child.
I’d want to know if people were true to themselves, are they lying even when they are complimenting me? Are they truly kind or do they just want recognition. Truth and honesty hold a lot of weight with me; maybe because I am a Libra; always a Libra no matter what that new horoscope alignment says.
There are times when a blink of an eye conveys a message to me, often I can feel and understand what is not said in a conversation. Sometimes, when I call people and they answer the phone with a simple “hello?” I will say “what’s the matter?” I’m not always right and since I am so sensitive I can read more into something that is there. But, I’m right WAY more than I am wrong. The only exception, I am not good with certain things when it comes to myself because my own anxieties or emotions overwhelm me and I am not objective. That’s when I need my sister or one of my two best friends to listen to me and separate the anxiety away from the reality.
- Previous Answer
I woke up this morning, not to the shrill blaring of my radio alarm clock, or to a shaken shoulder but when my eyes opened and turned to the window. It’s been a long few days and today I have nothing planned. I did a mental body check of all my ailments: Fibromyalgia aches and pains were present, my right leg still hurt but was manageable. My knee still throbbed from my recent fall on the icy pavement but my mood was good. I had ten hours of sleep and while the sun was not shining it could have been. There was no snow in the forecast, reason enough to celebrate.
I started driving to the supermarket, because food, comfort and love equals nurturing for me. I didn’t really need much except an idea of what to cook for tonight’s dinner and a destination. It’s been a long time since I’ve been in the grocery store and new items celebrated my return. Marshmallow yellow chick peeps out the day after Valentine’s Day? Okay. A discounted box of chocolate covered cherries? I love those and I am not proud. Sugar cookies to make for my children and various treats for my dog, Callie’s, upcoming birthday in March. (shh! it’s a surprise party.)
I felt a little guilty because the simple, routine, “mom” things that I was able to do today, I did with less grief. As many of you know, my friend Dawn died on Friday night and after the wake and the funeral and some time, today I woke up void of a dark, painful shadow. Then I remembered Dawn’s family, her father and mother, her husband, her siblings and her three children not able to escape the haunting grief. I felt guilty for being relieved and it pains me to write this. I have been in their place before when my father died so I know, I truly KNOW what they are going through and how much it hurts and for how long. I grieve for my friend, the twinkling green-eyed Dawn, but not the same way her children, her husband and relatives are grieving. Not even close. I feel bad that I have the luxury of distraction.
Strolling through the market I decided what I would be making for dinner, ravioli with a thick marinara sauce that I add a small can of tomato paste to, a store-bought fresh pizza, mozzarella and tomato salad with basil with drizzled olive oil and a multigrain loaf of Italian bread, still warm to the touch from the bakery. It’s rare that my family eats at the same time these days but I feel happy with them just being home, together for a little while. Next year, with my son in college, it will all be very different.
That is why today, a simple trip to the supermarket and a walk through Target with a Starbucks gift card felt special. I bought a skinny vanilla latte with a shot of espresso to manage my afternoon weariness. The simple touching of my dog’s fur, and playing with her outside in the snow felt like a gift. An ordinary day at the supermarket felt, to me, like a five-day vacation to the Bahamas. It’s true that you don’t appreciate normalcy when you have been overwhelmed with an abnormal amount of grief and sorrow or horrible pain from any disease. A simple day that ends with a hot bath, sleepy eyes and a half-smile, is indeed, a miracle.
I am slowly, very slowly and intensely taking off pink nail polish from my finger nails as if it was the most important task in the world. I feel like a surgeon scrubbing in to make him/herself totally antiseptic. It feels like that to me but I don’t know why exactly. I don’t know the codes or rules for going to a wake but I know, for myself, I have to wipe away every sign of sunshine from my hands because that feels right. My hands look plain, wrinkled, weather-beaten and bare. I’ve stripped off every clue to color because my friend Dawn is dead and the world feels color-less and grim.
I didn’t know what to expect at the wake; I had only been to one wake before in my life and that was thirty-five years ago. We arrived before the official hours and already the room was packed. I saw her husband, John first, and I hugged him, then their oldest daughter who hugged me as if to comfort me. Her middle son sat tall and straight next to his friends and did not move, his eyes riveted to his mom’s casket. The youngest child was the most heartbreaking of all, he belonged to no one in that room. He was in his own world, going to the casket, returning to his seat, going to the casket and returning to his seat, his eyes on no one, alone in his private world. He sat neither with family or friends, he was in his own fragile bubble, looking younger than his years.
I thought in death, Dawn would look more like herself than she did in the last stages of her life. I somehow expected to feel comforted that I would see my friend as I had remembered her. I went slowly up to the coffin although I was terrified; I knew it was something I had to do. But, inside my head, like an unrestrained child, inside my head I was screaming with disbelief and anger “this is not OUR Dawn” I thought, “THIS IS NOT OUR DAWN.” In the coffin lay a woman I didn’t know, an old woman, with too much makeup. They had prayer cards with a picture of Dawn at her finest: natural, loving, with one of her great big smiles and that is what many people said they wanted to remember her by. Even though I felt the same way, the images for the next three nights when I tried to sleep were of Dawn in the open casket, someone I didn’t know, a stranger.
There were flower arrangements everywhere. A huge arrangement made from roses, dark, crimson roses that formed into a heart; it must have stood six feet tall. There were many other flowers, yellow, white, pink, every color you can imagine and as tall as one can dream.
Her husband John, then came over and put his arm around me to show me something. “I hope you don’t mind” he said but we used your letter to Dawn as our prayer.” In front of me, I saw a piece of paper with the words I had written FOR Dawn, many months before she died. It was called “Praying For Dawn” and somehow after writing it, I thought I would take a chance to drop it off at their house. It was meant for Dawn and her family, and yet here at the wake hundreds of people clutched the piece of paper that I had written.
Her family members wanted to meet me, they said they had all read it many times, I had no idea. I do remember that after I dropped it off I got a voice message in the back of my answering machine from Dawn, thanking me and telling me she loved it. I could barely make out her words but I never erased that message. I gave my condolences to Dawn’s mom and she said “Oh, do you like that prayer, one of her friends wrote that!!!” Somehow through my trembling lips and tears I managed to say that ‘I was that friend.’ I swear her eyes lit up and she thanked me and told me how often the family loved reading it. She asked ME if she could introduce me to Dawn’s father who had wanted to meet the friend that had written that poem. After the introduction, he hugged me, and then took my face in his hands and said “God Bless You” “Thank you for writing that about Dawn, you captured her the way she really was. ” He told me he had wanted to meet the person who wrote it and knew I was a neighbor but didn’t want to walk into the wrong house and be embarrassed.” I told him where I lived and told him that he and his wife were welcome to visit me at any time.
The emotional intensity for me was overwhelming. I was honored that they used my piece of writing at the same time I was in total emotional shock. People were complimenting me on something that I forgot about since I have written many pieces about Dawn in my blog. I looked at many of my earlier blog posts and I practically have a whole book about Dawn.
My husband practically had to drag me out of the door since we needed to get our daughter to her afternoon class. I saw an old dear friend that I hadn’t seen in a long time and we wrapped our arms around each other crying. “I feel so lost” she said, “I just feel lost.” We all felt that way, I think. Lost without a piece of sunshine in our lives, deprived forever more of this gift of a person who brought enjoyment to everyone she met. Dawn was our fighter, never giving up yet she still lost the fight to this horrendous disease. Dawn was our light, she was our strength, there was no one she didn’t like…..well, with the exception of a little dog in the neighborhood….We all laughed remembering that and it felt good.
Two days later I arrived at the church forty-five minutes before the service and again, there were many people inside. The church was beautiful, I had never been there before. The stained glass windows shone from the morning sun, the polished wood seemed inviting and homey. There were many new flowers, everywhere. So many people from our little community were there, every religion was represented, people from all parts of Dawn’s life were there to show their respect: sports teams, education, friends, family, neighbors, some of the neighborhood kids, friends and their parents for all three children and the middle school Principal. Our community sometimes gets a really bad reputation but when something happens to one of our own, we come together as one. Our little town becomes so protective and so loving of one of its own; it’s happened before. Many years ago when a young boy had cancer, the town rallied together as well.
Both Dawn’s daughter and husband spoke at the funeral. Her daughter is a young woman with the most grace and poise I have ever seen. This young woman will be famous one day, I guarantee it. Everyone was either wiping their eyes or just letting the tears stream down their faces like leaks out of a rusty, old faucet. After the service the pallbearers brought the coffin out to the hearse. I saw a random pink flower on the ground that escaped and as much as I wanted to pick it up and touch it I couldn’t. It didn’t seem like the thing to do, it belonged to Dawn.
One thing I did not know was the tradition of the hearse and all the cars attending the cemetery making a final good-bye to the house where Dawn lived with her family. We drove around the loop as well and all I could think of was Dawn’s enormous Christmas wreath that she was always so proud of, hanging still around the front door. It seemed to me so heart-wrenching to do that, to watch her family ride in the car passing their house where their mother would never again live. Maybe it’s for closure too, I can only guess.
After that, we all went to our individual homes, sighing, looking at the ground, crying, solemn and gloomy and still, feeling that we were in a different world, a new reality. I don’t know how long it takes before the death of someone really hits you and takes its toll but I do know that it does take a while. After the company, the distractions, the food and the flowers, the only thing that matters is that there will be an empty chair at their kitchen table that no one can ever replace. And, at all her children’s’ games, their mom will not be there to encourage them and support them. Whatever condition Dawn was in, good or bad, in a wheelchair or not, Dawn was always there for her children, rooting for them, happy for them until the very last breath she took to say a peaceful “good-bye.”
- On Superheroes
- My Hero….
S is for Superman
Superman was always my type. Classic, handsome man, flying powers, distinguished looking. Superman didn’t need a batmobile or an assistant, he was macho. He was “faster than a speeding bullet.” He was good vs evil. He was strong, he was a real hero defending good people against bad. He had X-ray vision, bullets would bounce off of him. Keep your power rangers, and transformers and costumed characters…I’m sticking with Superman all the way. Hubba Hubba.
- An Alternate Ending
- SEINFELD ( I’m cheating)
I am taking poetic license and changing an alternate ending to a television series. Yes, I am picking Seinfeld. What kind of moronic, disappointing ending was that? It’s been a long time since it ended but I clearly remember my husband and I watching it (along with the entire world) and hating it. I remember a jail cell and nothing much else. (Thank goodness.) So the ending I would have written would have been:
Jerry and Elaine would become romantically involved again, getting married ( which of course would be unusual at best) and eventually having a baby which would be hysterical with both their neurotic ways…….
Kramer would become a dot.com millionaire
Newman would stay exactly the same, working for the post office and being mean.
and George? …..George would be gay! A late bloomer. He never really had great relationships with women so he would discover, later in life that he was gay (“not that there is anything wrong with that.”) THE END.
- A PLINKY PROMPT