It was a Sunday, in northern Massachusetts, in the last week of October.
It rained all day and the wind kept sweeping back and forth across our yard, seemingly intent on scrubbing away all signs of summer.
The yellow leaves swirled through the air like dancers and the newly empty trees bowed to the left and to the right.
I sat in my comfy rocker with a blanket on my knees. I watched the weather and smiled.
It was perfect.
Like every other adult in the world today, my days are packed with responsibilities. Taking care of my grandchildren and one of their friends, shopping, cooking, entertaining friends, helping to look after my elderly Mom, dealing with two young and energetic dogs……
All of it is good and all of really does bring me joy.
But I am exhausted. I’ve spent the past ten days or so fighting off a visit to the doctor. Refusing to go on medications that make me feel worse than I did before. The nose is stuffy, the lungs are wheezy, the aches are chasing the pains across my spine and I have a mystery foot ailment that has me limping like an old sailor.
I needed one day to myself.
And my dear friend, Mother Nature, has complied. It is cold. It is too rainy to work in the yard. Too cold to clean the garage. I had some new friends here for dinner last night, so there is no need clean anything.
Today has been spent reading a very cool mystery novel (The Nowhere Child). It has been spent sipping tea and eating mini cannolis brought by our friends. Dogs have been snoozing on my lap.
Even my workaholic husband has been reading, snoozing and playing games on his phone.
As I sit here now, I am looking out at a gray, dreary dusk. The rain pours down. The wind keeps blowing.
As I sit here, the light of my house shines in contrast to the cold night ahead. I am safe. I am sitting. I gaze out into the golden glow of the leaves that remain on our beech and oak trees. I can see the last bright sign of life from our “Burning bush”. I know that winter is heading our way.
But all will be well.
Because every now and then, a day will come when my body tells me to simply sit down and shut up. I’ll pour some hot herb tea, grab a good book, and fold the fuzzy blanket over the dog on my lap.
Life is good. Especially when we don’t expect it to be.
When my kids were little, they used to describe the weird feeling of having a fever as having “big/small”. They said that the world felt small, tucked tight around them. But their hands and feet felt big, as if they were filled with helium.
The strange part is that I knew what they meant. I got it.
Now that I am an old lady with sleep and pain issues, and am a happy user of cannabis at night, I REALLY know what they mean.
The room is small. The sounds are big.
So. I was thinking about all of this bizarre focusing in and out and size changing today. Because I was home on my own all day, and I read, watched and listened to WAY too much news.
My focus on my world was BIG. I was forced to confront a crashing stock market, a raging fire in our Amazonian “lungs of the world” and two new cases of deadly EEE in my state.
The big world is terrifying to me right now.
I am afraid of the ticks (lyme disease, babesiosis and anaplasmosis). I am afraid of mosquitoes (West Nile Virus, Triple E). I’m scared of getting a sunburn because my Dad died of melanoma.
But even more scary is the fact that the oceans are rising, the largest forest on earth is on fire, and the Russians are promising to create and deploy a new super weapon.
I can barely force myself to leave my house!
If I shop, I’m afraid of e-coli in my produce. I’m afraid that some pissed off guy with a gun will decide to shoot up my grocery store.
The big picture is freakin’ terrifying.
So I turned my focus inward. I made it smaller.
I rubbed my doggies’ bellies. I walked them through out quiet neighborhood. I chatted with my friend and her beautiful one year old daughter.
Looking at the bright blue eyes of that little beauty, I started to think that all was well. My focus was back on my immediate and beautiful world.
I looked at the flowers in my yard. At the crazy weeds jumping out of the fertile earth. I laughed at the ridiculous pumpkin plant that it now ten feet up in a tree.
It felt safe. I felt comforted.
But then I got home. And looked again at Twitter.
The big came back; the lies and insanity of our President hit me in the face.
I clicked off and scrolled through pictures of my grandchildren.
I thought about my own kids. About how deeply and purely I loved them when they were little, and how much I love them now.
Big focus: My retirement fund is melting before my eyes.
Small focus: My house is clean and calm and comfortable.
Big: The world can’t live through this much climate damage.
Small: My yard is blooming effortlessly, and the grass never went brown.
And so it went, my focus and my fear swinging wildly from the worst to the best of feelings.
The oaks are full of acorns. We may have a cold and snowy winter. But I have a freezer full of corn, beans, peas and carrots.
Social media is full of rage and hate. But my grandchildren, my dogs and the lovely little girl next door are full of unconditional love.
I need to learn how to keep my focus on the little things, and keep the big things in my peripheral vision.
Woke up at 6:30 AM, Pacific time. Washed up and got dressed. We had packed our suitcases the night before, so all we had to do was toss a few last minute items into our bags.
We didn’t have time for a real breakfast, so my husband and our two friends and I went to the general store at the lodge where we’d been staying. We got our coffees and our slightly stale muffins. We checked out of our place in Yosemite National Park and shoved all of our luggage into the trunk of our rental car.
Katja, Paul and I were passengers, and Katja’s husband Jorg was our driver.
When everyone had a coffee in hand, and everything had been safely packed, we headed out for our four hour journey from vacationland to the airport. We laughed a little and shared photos and talked about our next adventure. Then we all slumped back in our seats and let Jorg maneuver his way through rush hour traffic.
When we finally made our way to San Fransisco, we had to stop for gas, then make our way to the rental car return. When that task was finished, we lugged all of our bags through the car rental building and onto the airport transit.
It was a sad time, saying goodbye to our German friends for at least a year. We hugged and laughed and thanked each other, but all of us were focused on getting ourselves home.
Paul and I grabbed our bags and headed down the escalator, through the building and into the concourse. Ten minutes of walking found us at our departure gate, and we checked our bags and got our seats.
The flight loaded, we flew to Detroit, then we raced across what felt like 50 miles of airport to make our connecting flight, worried the entire time that our luggage wouldn’t make it.
Because we had forgotten to take our car keys out of said luggage, and if we got to New Hampshire while our keys were in Detroit…..well. You can imagine.
But, the bags were checked and we couldn’t uncheck them. We stood in line for our seats, and finally boarded our flight home.
After sitting for what felt like an hour on the tarmac, the plane finally took off. I had my book open on my lap, but I was too nervous to read it.
By now we’d been awake for some 14 hours. We were tired, anxious, and pretty cranky.
And as our plane took off, I thought about how miserable I was. I was sitting in the world’s smallest seat, breathing in stale air and feeling my ears pop.
I was in a skinny metal tube, filled with the exhalations of a hundred other humans who had spent the day eating nothing but cheetos and pre-packaged salami sandwiches. All of us were exuding stale sweat, dirty foot aroma and salami/coffee/cheeto breath.
We were elbow to elbow in a tin can, trying to pass the time by watching videos that none of us could hear over the roaring of the jet’s engines.
I was not happy.
I wanted out.
I wanted out NOW.
I felt my neck muscles cramping as I sat there with my knees raised and my neck bent. I was not a cheery traveler.
But I glanced out the window as the plane rose through the sky. The full moon was out there, seemingly right beside me. Down below, I saw the twinkling lights of an American city.
I felt us rising into the air, and suddenly I found myself remembering the scene in the old “Peter Pan” movie, when the children found themselves magically able to fly.
I felt us rise.
I felt myself rise.
I put my hand to my heart and leaned into the window, watching the lights of Detroit as they faded below me.
“This is a miracle,” I thought.
And it was.
We had woken up in a Yosemite Park lodge, and now we were in Detroit. We were heading home.
In less than one day, in only 15 hours, we had crossed the entire continent. A journey that at one time took a full year had been completed in a little more than half of one day.
It was a miracle.
In spite of the cramped space, the waiting in lines, the dragging of suitcases, the bad food, it was so so worth it.
We can now travel across continents in the time it took our ancestors to cross a township. We can wake up in the middle of a Ponderosa Pine forest and go to bed in a maple grove.
Now our biggest challenge, I think, is to appreciate that reality.
Many years ago, when I was a tender girl of ten, I joined our elementary school orchestra. I had no idea what I was doing, but the idea of an “orchestra” was immensely alluring.
When it came time to choose an instrument, if I remember correctly, I wanted to choose the violin. I loved the idea of being able to create the gentle sounds I’d been hearing on my Mom’s “Nutcracker Suite” album. I wanted that violin.
But alas for me, there were too many girls who wanted to play the violin, so I was assigned to try the viola. It wasn’t what I wanted, but it was still a beautiful stringed instrument. I accepted it happily.
And it was love at first screech. During that year of joyful musical exploration, I discovered the glory of harmony. I discovered the power of playing music with friends. I experienced the amazing mind buzz of hitting the rare perfect note.
It was so much fun, and so inspiring, that even 53 years later I can still remember the smell of the resin on my bow. I can remember how cozy it felt to be on our school’s small stage when the curtains were drawn every Thursday. That was when the strings would practice together while the rest of the grade was at recess. I loved those lessons!
I still remember that my viola was number 82, and that the case was lined with purple velvet. I used to rub my thumb along the velvet. So rich! So elegant!
I loved every minute of rehearsal, of practice, or screaking away on my instrument in my bedroom. I loved the full orchestra rehearsals on Friday mornings. I loved our concerts.
I loved it all.
Unfortunately, I had to give up my viola lessons at the end of that year. My parents couldn’t afford to pay for two kids’ music lessons, and it was my sister’s turn to take up the viola. I gave up my beloved number 82 with many tears.
(I still haven’t forgiven my sister, just for the record. Every few months, I call her up and moan piteously.)
Anyway, the years went by. I grew up. I still managed to sing harmony a lot, and I even tried a very brief stint of playing the guitar. But in the back of my mind, all this time, the idea of returning to the viola as been lurking.
So. Recently a good friend of ours took up the saxophone. He’s our age, and not much more musical than I am, but he threw himself into learning his instrument with joy and abandon. He was my inspiration.
I decided to take up the strings and the bow once again.
My younger brother (aka, the musical genius) had a spare violin hanging around his house. I learned that a novice like me should start with the violin and then move on to viola if all went well. I happily took Dave’s violin.
I signed up for lessons.
I rubbed the resin on my bow.
I made hideous zombie noises on my lovely little violin, but I was thrilled. It was all so familiar! So wonderful! I remembered the movements, the feel of the strings, the shiny glorious wood of the instrument!
Luckily for me, there’s a fabulous local teacher who was undaunted by the specter of an old lady rookie. I went to my first few lessons, learned my scales, practiced my basic fingering.
It has been so much fun!
My teacher, Susan, is endlessly upbeat and joyful. Her smile is the most encouraging thing I’ve ever seen. Even when I continually run my bow across two strings at once, she smiles. When her chickens run out of the yard at the sound, she still smiles, and encourages, and makes tiny adjustments to my wrist.
With Susan I feel like a musician.
So you can imagine how exciting it was for me to arrive at her house yesterday, ten minutes before my lesson time. I took out my instrument, tuned it with my phone app, and resined up my bow.
From the lesson room, I heard the sound of the same familiar song I’d been working on for two weeks.
Not Tchaikovsky, but still, it was a song.
It was someone working on two of the five variations of “Twinkle, Twinkle Little Star” that are the first lesson in our Suzuki violin book.
That someone was doing OK. A little slow on the fingering, but not bad. The student did hit a few extra strings, (maybe more than I do) but it was still cool to hear it.
“Ah, another novice,” I thought.
As the other student played, I quietly played along on my own. I heard Susan’s voice, as joyful as always. I smiled to myself. “Self,” I told me, “You actually play a little bit more smoothly than this person.” I had an image of another woman, younger than me, but struggling to get the combination of finger placement, bowing and rhythm all correct.
“You’ll get it eventually,” I thought to myself as I smugly packed my instrument back in its case.
I heard the door to the lesson room open, and two women’s voices chatting happily. I made out the word, “Good job!” and “Thank you!”
I stood up, ready to head into my own lesson.
And a teeny, energetic little 6 year old boy came careening around the corner, his mother trailing behind.
“Hi!!!!” he called to me. “I just played my WHOLE SONG!!!”
Susan was still cheerful and smiling when she found me standing with my mouth wide open.
It’s been a long and scary day here in Massachusetts. One, or maybe two, tornadoes touched down on Cape Cod. We saw roofs blown off, power taken out, trees uprooted, roads blocked.
And of course we saw dozens of people stepping up to help their neighbors, their friends, and total strangers.
It got me thinking.
When the storms blow in, and everyday life is turned completely on its head, we humans immediately become our best selves. We bring each other water, and give each other food. We pull the trees off of our neighbor’s houses and we offer to share our generators.
I’ve seen it.
In 2008, a huge ice storm hit this part of New England. My street was without power for nine days. But our neighbors across town offered hot showers, a place to do laundry and a community meal. Our neighbors across the street emptied their swimming pool into barrels and brought them around to all of us who couldn’t flush our toilets because our water runs on an electrically operated pump.
We shared food, wood stoves, water, chain saws. It was wonderful and awful at the same time.
Disaster mentality. It’s not a bad thing.
So how about this?
How about if we all approach each other as if we were in the middle of a disaster? How about if we look at each other as people, humans, neighbors?
I know that when the power went out, I didn’t ask my neighbors who they were voting for. I didn’t ask their thoughts on immigration or global warming or race relations or anything.
I just asked if they needed anything. They asked me that back.
So wouldn’t it be a wonderful idea if we all decided to think about each other as if we’re in the middle of a major disaster? If we could ask each other, “What do you need?” or “What will help you?” instead of asking how we feel about Medicare for all?
I don’t know if it would help.
But it couldn’t be worse than what we are doing right now. It couldn’t be worse than judging each other by which T shirt we are wearing.
As if we didn’t have enough to worry about these days! Between the killer heat waves, the rising oceans and the increase in mega storms, it’s already obvious that Mother Earth is trying to kill us before we kill her.
There are weird new super germs appearing everywhere, and the drugs we have aren’t working.
Did you know you can get flesh-eating disease from swimming in warm ocean water? And ALL the ocean water is warm now!
(Who the hell thought up the name “flesh-eating disease” anyway? Sicko.)
And even if you decide to risk having your flesh chewed off my bacteria and you jump into that warm ocean, you’ll probably be eaten by a great white shark.
I tell ya. It just isn’t safe out there.
The food supply isn’t safe. Our household cleaners are giving us cancer.
Don’t even get me started on what happens if you drink water that got left in a plastic bottle in your car!!
So as if all that isn’t enough to send you to the therapist with a bottle of Xanax in one hand and a pot brownie in the other….There is a scientist in Tennessee who is trying find a portal into a mirror universe.
Yes, I am serious.
A. Portal. Into. A. Parallel. Universe.
What in the world is wrong with people? Shouldn’t scientists be busy trying to cool off the earth, or stop the bacteria from eating our flesh?
We don’t need another universe, thank you very much. We’re having enough trouble with the one we’re in now.
So I’m reaching out to all of you. Please send a letter to your local elected officials. Tell them that unless the new mirror universe is cool, safe and has a non-insane President, we don’t want any part of it.
I find myself standing on the bridge between the past and the future, and it is a tender and poignant place to be.
I stand between youth and old age.
At the age of 63, it is of course natural for me to find myself in the middle of life’s journey.
But for me, the juxtaposition of what has been and what is coming is feeling profound right now.
My mother is 89 years old. She is 26 years older than I am.
Mom still lives at home, in the house where she and our Dad raised six kids. She is still there, still in her kitchen, where I learned to make sauce and meatballs. Still sleeping in the bedroom where she and Dad slept from 1962 until 2008 when Dad died.
I go to see her once a week. My siblings go at least once a week, too. Some more often. We are Mom’s supports, her cooks, her money managers, her cheerleaders as she heads on down the path toward her next step.
As my very wise sister put it, “Mom is quietly folding her tent.” She is gently withdrawing from her life, seeing fewer and fewer friends as her memory and her body fade.
But she is happy. Perhaps happier and calmer than at any other time in my life. Mom, once a power woman in control of all around her, has learned to accept help with grace. She has been willing to wear her LifeAlert, to have a home health aide and to welcome one of us every day (although she doesn’t often remember whose turn it is on any given day to have dinner with her.)
Mom is showing me how to exit gracefully, just as Dad did when it was his turn.
I am watching her. I am learning. I am coming to terms with some thoughts of my own about my life going forward toward that “rainbow bridge.” I am so lucky to have a model of how to go with humor and humility.
As I stand on this tender bridge, I look back toward my youngest child. My son Tim turned 27 yesterday. So you can see that I am almost the ‘median’ point between my mother and my son.
I look at him, my sweet, kind boy. I see that life is spread out before him like a banquet. He plans to marry his sweetheart next summer. They are thinking about children, about careers, about their hopes and dreams for a future family.
I see him, and I see his Dad at the same age. I see myself. I see our worries and our joys and I remember what it was like to be young, in love, ready to move into the future with courage and hope.
My Mother often talks to me about those years before she married my Dad. She talks about how happy they were to sit under the trees on Boston Common, planning how many children they’d have. She talks about what it was like to hold his hand as they walked through the city sharing their dreams of a beautiful future.
And I stand on the bridge. I hear her thoughts, and I hear Tim’s. I know that it was my Mom and Dad’s ability to dream and love that lead to my family, and lead to my marriage and then lead to my beautiful boy and his wonderful partner.
I know that Tim and Sweens will marry, have children, face challenges, encounter unexpected joys and find ways to keep recreating their hope. Just as Paul and I have done. Just as my Mom and Dad did for all those years.
And I know that one day it will be me who is facing that final chapter.
I just hope, and pray, that when that time comes my children will look to me as a model of how to move on. I hope that they will think about Grandma, and remark on how like her I am.
And I hope, and I pray, that when that day rolls by, there will be children of theirs who are busy falling in love and planning their next steps and thinking about babies of their own.
The older you get, the harder it is to find heroes.
Know what I mean?
It gets harder and harder with each passing winter to find someone who is uplifting, empowering, inspiring.
But you know what? Hanging out with young people helps. A lot.
My kids are working to revitalize and reshape an entire small American city. They are hands-on, in the dirt, reinventing an old New England Mill town. They love the town, they love their work, they love each other.
That’s inspiring and uplifting and all that good stuff. Isn’t it?
And they also make music. Fun music. Music that people really enjoy.
My kids do it for fun and personal pride, rather than for profit. That makes it more fun and less pressure. For them, the making of the music is not a life or death scenario. But they know lots of people who make even more music, some of which is in fact professional. For some of those friends, life does seem to be dependent upon that music.
Music that pokes your soul and taps your brain and tells you that as long as your heart is beating, your hope is alive.
That is a truly inspiring, empowering and uplifting message. Those who can bring that kind of message to us should surely be our heroes!
Of course, if I want find even more heroes, I should look at the very young to find my answers. I should look at teenagers to find my inspiration.
I’m watching right now as dozens of kids I used to teach are graduating from High School and university. I am sending good luck messages to men and women who were once the shy, quiet kids in my fifth grade class. I’m sending way-to-go cards to kids who were once the swaggering, cool-jock, super-pretty kids in my elementary school room.
Those kids have grown from needing me to open their juice boxes to planning the next renewable fuel source. They took every bit of love and teaching that was offered and they ran with it. That’s pretty cool!
And I can find heroes just by smiling at the people I run into ever day. Just by seeing those people. By hearing them.
Yesterday my husband and I had breakfast at a real, true, classic New England diner. This place had a sign out front that was no longer legible. The steps were worn, cracked, and warped. Inside, the diner was run down and worn, but was obviously an antique.
“Ya want coffee?” was our introduction the ambiance. Not particularly welcoming.
Within five minutes, we were chatting and laughing with the woman who was making the food. About my own middle age, she had a sturdy build and a working woman’s hands. She wore her gray hair in a ponytail, and had it clipped to the back of her hat.
As she flipped the eggs, poured pancake batter and buttered the toast, the woman engaged us in conversation. Her voice was rough. Her jokes were just what I’d have predicted: she lived so far out in the woods that she could sit outside in her underwear and it wouldn’t even scare off the moose. Her manner was strict and unsmiling, “Kids today would never have made it in my old neighborhood in New York.” She wanted to be gruff, strong, unsmiling.
But before my French Toast was flipped, I had learned that she was a widow, that her one child was an adult daughter who was soon to be married and who worked with troubled youth. I learned that the Mom was inspired by her daughter’s ongoing education, and that Mom knew how proud Dad would be of his girl.
That woman is my hero. She is strong, tall, unlovely. She takes care of orphaned cats and one dog. She grows flowers. She loves her daughter fiercely and misses her husband profoundly.
And every morning she wakes up, drives to the Diner, and starts to sling the hash for the neighbors and friends who come in.
That’s a hero.
We are actually surrounded by heroes, if we only take the time to look. The child who knows he doesn’t understand the social rules, but who heads off to school every day anyway. The teen who has music and poetry within their heart, but who is scared to share it. The moment when they share it anyway.
The musician who gets up in front of strangers for the first time and plays the song. The writer who hits “send”. The man who gets up every single weekday for 40 years just to turn on the lights in the municipal building. The woman who carefully adds a handful of blueberries to the pancakes on her griddle, a hundred and a hundred times every day.
We are each other’s heroes, really. We are all better together, stronger together, kinder together. We need to find our heroes in each other. We need to see each others’ heroes in ourselves.
This means that Nonni has lots and LOTS of energy. It means that Nonni has so many fun and amusing plans! Plans for how to repaint the house, inside and out, while writing a novel and baking organic cookies!!!! Yay, Nonni! Yay, Prednisone!
It also mean, alas, that Nonni is just a teensy weensy bit cranky. And that Nonni is ready to use that all that energy to utterly destroy anyone who gets in her way.
Yesterday is a good example of poor Nonni’s conflicted relationship with Prednisone.
You see, Nonni and Papa went out to hear some great music from one of our favorite bands on Friday night. As always, Upstate was amazing and exciting and fun and uplifting. We had a fabulous time.
But we got home late. And Nonni was feeling those fun Prednisone energy jolts. Until about 4 AM. At that point, she fell asleep.
So. Saturday morning found this old woman on three hours of sleep, with way too much energy but no strength. I was crabby (if “murderous” and “crabby” are synonyms.) I paced around for a bit. I did dishes. Cleaned the fridge. Paid the bills. Organized my pots and pans. Used a tiny bottle brush to scrub out the silicone straws that the kids use.
By noon I was climbing out of my skin.
So I headed into the yard.
And that is where Nonni discovered that she is not the only crabby old bitch to be on the loose.
We’ve lived in this house for close to thirty years. In that time, we have created a lovely garden area filled with flowers and bushes and blooming shrubs.
And when I say “we”, I mean ME. I mean this woman. All by myself. I ripped out grass and put in perennials and ripped out weeds and put in bushes. I have trimmed and pruned and raked and fertilized and transplanted. And it is gorgeous out there.
So when I headed outside yesterday, I noticed that the yard had begun to close in on us. Every year, it seems, the trees sneak a bit closer. The woods encroach. The wild comes just a bit closer.
And yesterday, for the first time in a decade at least, Nonni had Freakin’ HAD IT.
I took up my brand new rechargeable, super efficient trimmer. And I went to town.
Thirty minutes into my “pruning” efforts, the driveway was littered with the chopped off limbs of maples, oaks, hemlock, ash, beech and birch. There was suddenly sunlight again on parts of the yard that had become moss covered and shaded.
I looked up.
I LIKED this!
Nonni, in all of her angry, teeth gritting, pissed off over-energized-jittery glory had found a way to burn off some steam.
I made my way up and down my driveway, swinging my tool of revenge in front of me like a demon. “Take that!” I crowed, as I buzzed five oaks and three maple saplings from the edge of the drive. “You won’t take over my one means of escape, you foul beasts!!!!” I lopped them off at ground level.
I believe I chortled.
I kept the driveway space clear for my car.
I kept going. My heart was racing. Mosquitoes were lodging in my ears, nose and on the edges of my sweaty gray hair. Still, I could not be stopped. This was FUN.
And so empowering.
Mother Nature wants to put out ten knew pine trees in my GRASS? I don’t THINK SO!!!
Buzzz, Bzzzzz, bzzzzeeepeezeeep! Down, down! I vanquish thee!!
Fourteen baby oaks popping up off of one downed pine tree? Not on my watch, kids!!!!
Vrooom, vrooomy, vrooomotchka!!! Out you goes!!!
After three hours, my arms were shaking. I couldn’t see because of all the sweat, dirt, dead bugs and pine needles plastered to my face.
But I felt GREAT.
I knew it was time to head inside for a shower, a triple tick check and a martini. But I needed one more quiet moment of reflection.
Mother Nature, you’re not the only cranky old pissed off lady out here today. So you just back off, bitch. Nonni is here to save the yard.
First thing you need to know is this: I am a relatively healthy old lady. At 63, I am still pretty spry, healthy and hearty. There are few things in life that I can’t do because of my health.
But. I do have stupid, annoying, aggravating Fibromyalgia. I was diagnosed about 10 years ago, after being told that I didn’t have Zika, West Nile, Lyme Disease, Lupus, Rheumatoid Arthritis, cancer, IBS, Epilepsy or anything else that would make me run screaming into the night.
Instead, I was told, I have a pretty common autoimmune disease that will make me tired and achy. And will keep me awake for about two months in a row. And will make my thinking resemble a big bowl of tapioca pudding.
I am very very lucky. Once I was diagnosed, I was put on a dose of Cymbalta. This anti-depressant eased my pain, helped me to sleep, cut down on the famous fibro flareups and even made me less cranky.
Better living through chemicals!
However, ten years into this experience, I find that every now and then I have a big old fibro flare up. It can come on slowly, with just an extra pain in the neck (not kidding) and a general sense that I’d be better off is I spent a day in bed.
Which I have NEVER DONE. Ever.
Still, there are days when I find that the past three weeks of endless motion, action, socialization, gardening, shopping, cooking, visiting and schmoozing have left me in a fibro funk.
That’s when I reach out to my wonderful primary care doc. I send him a message on our Patient Portal. “Ruh, roh.” I type. “I’m having a bad flare up. Prednisone?”
He knows me. He understands how this works. He sends in the script.
And this is where the fun begins.
Prednisone is my savior and my worse enemy, all at once. Let me give you an inside view.
DAY 1: “I can’t move. I would love to get up and go pee, but the bathroom is so….far…away…..” The kids arrive. I say, “What a great day for movies!” Even thought its 75 degrees and sunny, I canNOT get up from my chair. I manage to feed them and change the diapers, but that’s it. I need some medicine.
DAY 2: I take my 60 mg of prednisone. I slump into my chair, coffee cup in hand. One hour later, everything still hurts, but I feel a faint buzz in my skin. It’s a quiet day, but at least I manage to turn on music and put the kids into glittery costumes to dance. Dinner is leftovers. I sort of clean it up.
DAY 3: Another 60 mg down the hatch. My neck and back hurt, but the rest of me feels ok. I serve a nice home cooked breakfast. I’m hungry, so I join in the feast. By noon, I’ve done two loads of laundry, swept the floor, exercised the dogs and cleaned the kitchen. On to lunch (homemade soup….yes I ate some) then books, then a nice dinner. Early bed. Slept great!
DAY 4: 60 more milligrams of Prednisone. I eat a huge breakfast before the kids even arrive. By the time they get here, I have pancakes, fruit, cereal, juice and muffins on the table. I sing while they eat and I sing while I clean it all up. We play outside. I manage to weed the veggie garden, prune the lilacs and fill the kiddie pool. I feel great! So much energy. Dinner is delicious and entirely home made. I eat more than my husband.
I get myself to bed at a reasonable time, where I toss and turn for 3 hours before finally falling into a restless sleep.
DAY 5: I wake up at 4. I take my medicine. By nine, I have had breakfast, made the kids meal, made us all lunch, organized the silverware drawer and polished my grandma’s silver. The day is full….even though the kids would like to rest, I keep us all outside, walking through the woods, hunting for bugs, gathering leaves, pulling up clover. I teach them all how to find the best dandelion leaves for salad. OK, the baby is only two and the older one is not yet four, but we get a lot done. After lunch, I get everyone to create a collage of nature’s treasures. They cry a lot, but the art is very cool. The kids go home at five, and I whip up a fabulous home cooked meal for the hubby, who enjoys it thoroughly. I get to bet around midnight, but I can’t fall asleep. I’m trying to calculate how many ants I have removed from the sink in the past week.
DAY 6: Down to 40 milligrams. Who cares? I hate everyone by now. Everytime one of the kids frowns, I scowl right back. I eat breakfast. Then I eat all the leftovers. I eat a few snacks. Then I snarl at the kids because let’s face it; if they didn’t leave food on their plates, I wouldn’t eat it and I wouldn’t be so FAT, now would I????? We do puzzles, we eat lunch (really????MORE leftovers?????) Paul comes home for dinner, which I slap down on the table. I drink some wine. I drink some more. I eat my dinner. And Paul’s leftovers. I go to bed. Hahahahaha. I am still awake at 5AM. I hate everything.
DAYS 7, 8 & 9: Why do I need this stupid medicine anyway? NOTHING hurts. I have been awake for a year. My hands are shaking. Is there any more cold pizza? The kids are handed a bunch of paper, some markers and a few glue sticks. I retreat to the kitchen, where I pretend to make lunch while eating all the croutons in the cabinet.
Slowly, slowly, the prednisone is reduced. Finally I am down to a mere 20 mg, and I start to find myself again. I manage to cut myself down to 4 eggs and two english muffins for breakfast. I remember how much I love the kids. I am able to calm myself down enough to read a few books to them. Dinner is pleasant again. I am able to sleep. A little.
And it finally winds down. The flare up is over. I feel fine again. I feel like myself. If the past is any indicator, I won’t have to go through this nonsense again for at least 4 months.
That should be enough time to shed the 15 pounds I gained while getting better, right?