It’s been raining most of the week, so I took refuge in the orchid collection at the Brooklyn Botanical Gardens. Yellow, my favorite color.
Finally, I live in a small white house that has a yellow door. Imagine just locking and unlocking my door every day, several times a day, makes my smile light up like a jack o’ lantern. I don’t like too flashy or bright colors but rather, warm and welcoming. Framing the house, and in the small garden, are yellow flowers, all different kinds, but easy to take care of and maintain. In the warm weather, I sit in my garden and slowly sip my hot tea, with cream and sugar, and I take a few moments appreciating this lovely bit of a place. My big, rescue dog, named Shep, lies beside me and I stroke his fur and he puts his head on my lap. I marvel at how wonderful my older life has become, feeling the sunshine on my face and how much I appreciate my simple life here, at home.
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
This afternoon was a day that gave birds reason to fly and sing. The budding trees are smiling with green flowers, the sky is light blue with puffy cotton-candy clouds. I wanted to do something that I haven’t done for so long because the pain I have from Fibromyalgia stops me. Today I wouldn’t let it; I refused. I went to the tiny patch of garden we have in the front lawn and replanted a pot full of old flowers into the ground. Granted, I couldn’t kneel because I knew I would never be able to get up but I improvised. I admit digging the dirt with just a little hand shovel was too hard but I gave it my best try. After that I hauled my eighteen year old son out, who cursed the entire time, to dig deeper for me. He doesn’t get gardening, doesn’t understand the point of it but he doesn’t have to; he just needs to help me when I ask. I also bought a little plant at the grocery store today that looks like a round puffy white ball with red and white edges. I planted this little sweet flower by myself. I pointed out a worm to my son, forgetting he’s 18 and not 7, and that amused me but not him.
After that I went into our shed and got out bird food for the cardinals. I have wanted to do that, literally, for years. Today, with the weather encouraging me, I did it. I felt bad in the winter when I couldn’t go in the backyard for fear of slipping in a foot of snow and ice but I knew the birds would forgive me. There are black sunflower seeds now in the lopsided bird feeder and some on the grass and the table because I don’t mind feeding squirrels either.
Doing these things made me feel alive even if now I am so stiff and achy I can barely move. My back already hurts on my right side and my trusty old heating pad is in its proper place. I know I wasn’t standing or bending the right way; but it doesn’t matter. This was good for my spirit: earth, grass, flowers, birds, sun and the wild wind bouncing off the houses and trees and through my shiny brown hair. Today, I felt normal, human, real and I felt happy.
I had forgotten how much I like to put my hands in the earth, smell the musky scent, feel the softness of the dirt intertwined with harsh roots. The earth didn’t mind that my fingers were swollen and even my joint pain got swallowed up in the beauty of the sun-kissed daffodils. I will not complain tomorrow even if I am twisted into a painful pretzel. Today, I needed to do this, I needed to feel like I was part of the world. I wanted to feed the chirpy bright red cardinals that wake me up in the morning and even the fuzzy, fat squirrels that my dog wishes she could play with. I wanted to replant something that was old and try putting something new and dainty in the ground. I brought out my empty plastic jug of pomegranate lemonade, filled it with fresh water and tended to my two plants. My knees are stiff and I had trouble walking down the stairs to get to the kitchen tonight holding on to the banister with every ounce of strength that I had left. Today, I learned, that maybe more pain is worth it if it means feeding your own soul.
There are beautiful yellow forsythia blooming, an occasional purple crocus, the beginning of grass seeds growing. There are rain showers all the time, gray skies, rain pelting down from the sky like rock stars playing and dancing along with their jumping guitars.
I always have the same thing on my spring to-do list: cleaning, getting rid of the old, broken stuff, the clutter, the sentimental memorabilia that should not be sentimental anymore. Keep the memories, but get rid of junk, plastic gadgets, piles of magazine articles, painful shoes. Old toys and old clothing from my teenagers should be given away in black trash bags to be picked up by Big Brother, Big Sister. I need to declutter my brain, rid myself of the layers of thick, molten dust both on the furniture and in my cloudy head. I need to get rid of so many things so I will be able to move ahead, in my mind and in my life. My children are not little anymore, they need me much less, soon they will be off to college. I don’t want to be here surrounded only by old memories, I need to make new memories, not cling to the past. I need to emotionally accept the difference and move on.
HibernationNow and Phylor’s Blog present: How a spa would be designed and managed by fibrologists:
Welcome to the Fabulous Fibromyalgia Spa and Resort! Whether you are staying in the main building or one of our cottages (the Pain Villa, the Fibro Fireplace, the Befuddled Bedroom, or the Nerve Damage Madness), you will find that we are equipped to handle any situation that may arise. While we don’t leave a chocolate on your pillow, you will find 2 Advils or Aleves and specially designed heating pads specifically for those tender 17 points. We know there are days when you don’t move around all that much, so rather than steps or long walkways, you will find escalators similar to those used a airports. Please hold on to the sides as we know that some of you may have balance issues.
You can check in at whatever pace feels comfortable to you. As memory problems can be an issue, you will be given several key cards (room number stickers available upon request) in case you should misplace one or lock yourself out of your rooms. At 4pm and again at 9 pm, our special welcome cocktail, the Fibro Fizz will be delivered to your room.
Each suite or cottage contains a memory foam king-sized bed, a large bathroom with tub and Jacuzzi. We have an array of unscented toiletry items available upon request at check in or with reservation. Beside your bed, you will find a white noise machine with peaceful sounds such as waves lapping the shore, rain-gentling falling, and other soothing sounds from nature. At your writing desk, you will find a supply of post-it notes in different colo(u)rs and patterns, pens, and stationary for making notes. There is high-speed wifi, HD cable, and a list of more than 200 movies on demand at no extra cost. You can search the movie database by genre, stars, director, screen writer. We are always open to suggestions for additions to our list that can be made available within 24 hours. Providing these in-room movies has been a big hit with our guests. If you don’t feel up to going to one of our many social areas, you can relax in the comfort of your own space and refresh your memory by re-watching classics, give your mind, rather than your body, a workout with the action pictures (yes, some folks do move that fast), and since laughter is great medicine, our list of comedies is extensive.
For an additional $50 a night you can upgrade to one of our luxuriously padded rooms, conveniently located next to one of the dining areas. With walk-in bathtub, Epsom salts on demand, and doubly padded walls and floors, these rooms appeal to the fall and/or trip crowd.
Every hour is medication cocktail hour at the indoor and outdoor pools. Our staff will gladly prepare whatever combination of medicines, vitamins, and supplements suits your personal needs. Some of our more popular concoctions are the Savella Sling with just a hint of Tramadol, the Lyrica Laser prepared with or without Xanax, the Gabapenten Gobbler, best served with a dash of morphine and the Oxycontin Overboard that contains over 7 medications, and 10 supplements.
Our dining facilities that include a formal dining room, casual café, and coffee bar are open 24/7 for your convenience. Our chefs have created a luscious array of soft foods for people with TMJ. You can choose from menu items, or request the kitchen make something special for you. Room service is also available 24/7. There is no need to get out of bed, the restaurant has a key and tipping will be added at the end
Our spa has all the latest in massage and relaxing techniques including hot stone therapy, therapeutic massage, breathing and relaxing exercises. We are always happy to deal with your bunions, your broken toes, your mangled feet. Included in your package are several free extras we call our Fibro Fix-up: a manicure and pedicure, hair cut, tricks to hide those dark circles from sleepless nights, and the opportunity to consult with one of our Fibro Fashionistas for the latest in lounging and sleeping wear. Our full Fibromassage offers gentle touching of those inflamed areas all over your body. We especially cater to the 17 point system of pain centers. Our staff has won over 25 first place ribbons at the Annual Feeling Fibro Massage and Comfort Olympics.
A recently added feature is our Fibro Fitness team. These well-trained and dedicated Fibro-Fit individuals wheel the exercise equipment to your room, carefully encase you into the fat-melting machine of your choice, and the machine does the rest. For those of you who don’t need to shed a pound or two, we have a special cheesecake and ice cream diet to ensure you get those needed extra calories. You can have these special meals delivered to the privacy of your own room, or you can join others on the thin side of healthy Fibro-Fattening Bistro.
One of our more popular features is the Xanax Room. Open 24/7, you can order the strength of Xanax you need to let those feelings of panic and anxiety just slip away. And the price is right: free Xanax! Adjacent to the Xanax Room, the Ambien Pre-bedRoom prepares you for a cozy, sleep-ful night. There are teas, comforting lavender and other scented oils and candles, and helpful staff members who will accompany you back to your room, and tuck you in for that nice, long sleep you have been looking forward to.
We have a fleet of electric scooters should you feel like a leisurely ride along one of our specially designed walkways that sweep themselves clean, so there is nothing along the route to jar your bones. We pride ourselves on our gardens, including the Zen garden should you feel the need to meditate outdoors, and a complete herbal garden for creating our special teas such as:
Morning Eye Opener, Afternoon Nap, Evening Relaxation, and Bedtime Comforter.
We have hotel hosts and hostesses posted every two feet so that when you lose your way because of Fibro fog and get lost, someone is always there to turn you around and point you in the right direction.
This is only a small sample of the information will find among the pages of your welcome kit. Please feel free to ask questions as many times as you need to while acquainting yourself with our facilities. Our aim is to give you as much pain-free, fibro fog-free time with us as possible. You are free to participate in any of our organized activities such as Bend and Stretch or Sitting in a Chair yoga classes, make use of our arts and craft room, or, simply lay back in the gentle hug of your bed, and let us do all the work for you.
Thank you for visiting the Fabulous Fibro Spa, we hope to see you again soon.
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