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The Healing Power of Music

I remember my transistor radio. It was a bit bigger than a pack of cigarettes. I lived with that radio, or rather, it lived with me, the music constantly piping through to my ear. It soothed me and my teenaged angst while I cried my “96 Tears.”

I remember listening to the Beatles’ “Eight Days a Week” while taking down my much older sister’s laundry from the line. I would go to her house down the block from ours to escape the never-ending chores. Doing chores at her house seemed like a break, a holiday from doing them at home, where it seemed I did chores eight days a week.

Besides, she had a telephone before we did. A thick, black, clunky thing on which I could call the boy I had a crush on in junior high. Only to hang up when he answered. There was no call waiting, or caller ID back then so no evidence. I found his number by looking up his last name in the fat phone book delivered to every household that had a phone. To this day I remember his last name but not his first. Weird. And I can’t remember what he looked like either. I’m only sure of one thing: He didn’t know I was alive.

I remember sitting on the bench behind the house that held the wash tub where I’d scrubbed clothes against a washboard before we had a washing machine. I felt I was hiding though I’m sure the sound of my radio gave me away should my mother find another chore for me.  As I leaned back against the wall my sister appeared over the back fence like a disembodied head. Come with me to the store, she said. I sighed, but she was pregnant with her second child, so I got to my feet.

My radio of course went with us as we plodded down the hot, sandy soil of the alleyways to the small neighborhood store. I paid no attention to what my sister was selecting as we strolled through the aisles. At the checkout, I became painfully aware that she was short of money. She stared into her coin purse for a moment, then began removing item by item of her meager haul as she watched the numbers on the register decrease. Finally, the cashier said, you can pay me later, and my sister nodded her thanks.

I don’t remember the music on the way back. Perhaps it was “Magic Carpet Ride” which could whisk me away. I just remember aching for my sister as we walked in silence. She hadn’t needed me after all.

Fast forward about a decade or so and I see myself dancing to “Ladies’ Night” in my own kitchen late at night. The music now coming from a much bigger radio, one that I couldn’t tuck away and hide from prying eyes and perked up ears (Mom). But I had no need to anymore. 

After I put my toddler to bed, I stole time from my studies to dance until I was as hot and sweaty as if I’d spent an hour on an actual dance floor, all the endorphins streaming wildly. It was my therapy. I needed it to get me through those long and lonely years when my only true companions were my son and my textbooks.

When I left the sad north to head back to Texas, my collection of 8-track tapes accompanied me as I drove cross-country. I had a small suspicion that when I got home, I might find myself a cowboy who would teach me how to two-step through the rest of my days. But the only cowboy boots I saw and heard were the ones that clicked onto the pavement when their wearer jumped down from his red pickup in the middle of night, leering at me as he tried to coax me aboard.

He and his male companion had seen me alone and vulnerable at the bus station’s outside public phone waiting for my father, my car had broken down and had to be left behind in a one-horse town to get fixed. My dad arrived in time to save the day, but that incident put me off cowboy boots forever.

Instead, I chanced on motorcycle boots. We met amidst the loudest music, “Funkytown,” and he continued to make music in my heart for months. Even now, my soul sings when I remember his touch, his gentleness, his essence. His promise. The music remains, like “Brass in [my] Pocket.”

 Today my transistor radio has been replaced by another hand-held item, a phone that is a minicomputer. But regardless of its many high-tech capabilities, its most valuable feature is its ability to pipe music through to me. From my twenty-some Pandora stations, or my recently set up iTunes account. My pain relief, I mean my music, is always available. And though there has been decades of music released since the advent of that tiny radio, I find that my choice of music remains the same, primarily the art of the 1950s, 60s, and 70s.

In these soulful melodies lies the prescription that takes my pain away. That sends me back to a time that my teenage self felt was so horrendous, when in effect it was nothing, nothing, nothing.

Ablation

In a few days we will have an ablation. I say we, because whatever the outcome is, it will affect me. Us. My husband is lucky. When he had a massive heart attack five years ago, while doing a bike trail, kindly bystanders called 911. The paramedics at that moment were rolling by returning to their station, and he happened to crash in their presence. Fell into an arrhythmia not compatible with life. Later at the hospital, the paramedic told me that he had continued with resuscitation because he saw that he was fit, that he took care of himself. So, I kept going, he said. I focused on his muscular arms as he talked to me and I imagined the power he had put into doing CPR. They were so kind; they even collected his mountain bike from the park where he had nearly collapsed forevermore.

The doctor came to me hours later, during a respite where my husband was not trying to die, and told me that he could not do a bypass. That there was not enough well tissue to work with. I understood. In order to build a bridge, you must have solid ground on both sides. It took months, but because of the collateral circulation he’d developed as a result of his athleticism, he recovered well enough to resume most of his activities. He did have to cut down to 20-mile bike rides instead of the 50 or 75 that he’d done in the past. The doctors were amazed every time he jauntily walked into their office, sometimes with hat tipped rakishly over one eye. Miracle Man, they called him. I felt like asking the doctor, are you writing him up for a medical journal?

Now he has developed AFib. Extra beats that are stealing future beats. His electrical conduit is misfiring. And it must be burned away. He worries about not seeing his granddaughters. Is this week the last he will see of them? It annoys me. He was not as present with his own children as he is with his granddaughters. And I wonder, is it because time with them is temporary? Meant only to enjoy? And with his own children it was 24/7 responsibility. Is it because with time, we see the future in these small beings? Blood of our blood.

I worry about my leg thing, as I have come to think of it. It can be particularly cruel in the mornings and he must be there by 0800. I think I will not sleep that night and trick it into thinking it is just the continuation of the day. Normally it stops hurting in the afternoon and by bedtime I have forgotten about the spinal nerve pain. Or at least, have pushed it aside for a little while. He says he will drive himself and they can call me afterwards. But how will I ever find the car in that huge garage? And how can I even think of not being there? But will they let me be there? They are so strict with visitors in this covid age. But I will limp there regardless and if they turn me away, I will drive home and wait.

In the beginning . . .

I’m Worried

Not a day goes by that I don’t get an email from a certain hospital extolling the nursing supervisory positions that are available for me to consider. I get at least one email, sometimes two. One day they broke the record and sent me four. And the jobs come with sign-on bonuses, $10,000 dollars, $15,000, more.

I was at the dentist one day checking my email while I waited for her to come to my exam room. When she walked in, I held up my phone to show her the screen. She peered at it wondering what was up.

“$20,000!” I said, “Just to go work for them.”

She pulled up a stool and sat next to me. “Imagine,” she said, “how hard that job must be if they’re offering that much.”

I didn’t have to imagine. I’ve been there, and done that. Past tense. I haven’t practiced in over a decade and I finally let my license lapse two years ago. It took me a while to completely let go and accept that that part of my life was over.

They must know my license is not active. I suppose they figure I can reactivate it. And there’s probably still refresher courses and long orientations to the job. But how to reactivate my feet to pull thirteen-hour days with no lunch and barely any potty breaks.

But all that doesn’t worry me because I’m not going to do it. Those days are done for me. What worries me is what it all means. What it all points to: A lack of nurses.

Nursing care is why you get admitted to the hospital. Just about everything else can be done outpatient, labs, x-rays, nuclear med, etc., even some surgeries. They can open all the ICU beds they want but without ICU nurses those beds cannot be filled. There not being enough nurses is a scary, scary thought.

I graduated at the height of one nursing shortage in 1980. I had a job lined up two months before graduation. I’d decided to go back home to Texas and sent feelers out to several hospitals in different parts of the state. They all responded with offers of perks and freebies of all kinds. But the palm trees of Galveston captivated my eyes. They reminded me of the palm trees of my home in The Valley.

I went there and faced the streetcar named Reality Shock head on. That first year was sink or swim. I swam and it made me into what I remain, still in my heart, an ICU nurse. But the nurses I have the most respect for, of all the disciplines, are pediatric oncology nurses. My God, their fortitude. They are angels walking this earth.

So when I see that our number is decreasing once again, I worry. I worry because we need them. Because they are indispensable. They see us on the way in and they see us on the way out. And in-between, they keep us as healthy as is humanly possible.

They spend all day and all night with us in the hospital, allaying our fears, answering our questions, holding our hand when the terrors strike, and even covering our loved one with a warm blanket when they collapse in the visitor’s chair out of exhaustion in the cold of night.

My graduation picture as I look toward the future. As students, we wore the stripe up one side of the cap. Upon meeting all grad requirements we got to wear the stripe around the cap. My cap is long lost. I never wore it in the real world.

Awash in the possibilities awaiting me, on the shores of Galveston Island.

Y’all take care, now.

Hello, Again

I have been away so long, I forgot my login. Thankfully, I don’t rely on the old noodle. I write it down. I write just about everything down. It’s like a nervous tic. Or a need. Or something.

Right now I’m listening to cry-in-your-beer mariachi music. I was in the mood. Not for beer, never beer, some Moscato maybe. Not in the mood for crying either. It’s just that sometimes I get homesick, I miss Texas. Can you imagine? Missing Texas! Maybe it’s true what they say, you can never go home again.

Just feeling a little nostalgic perhaps. Wishing for some do-overs. Some time travel. I always think what if. What if I’d chosen this, what if I’d chosen that, maybe I would have missed the turn that took me straight into RA’s arms.

Maybe, maybe, maybe.

These past eighteen or so months have been eventful and at the same time uneventful. It was January, 2020, when my gallbladder tried to kill me. I showed up septic at the emergency room. It worked so quickly, in hours I went from epigastric discomfort to hardly being able to drop from the car into the wheelchair my husband had trotted over to get for me.

My son surprised me the day of my surgery. I was holding an icepack to my head for the unrelenting headache and had my eyes closed. I heard the door and thought it was my angel of a nurse with my pain med. I opened my eyes and saw him pulling his carryon into the room. “What are you doing here?” I asked.

He was supposed to be in San Francisco where he had been setting up a hospital with their digital documentation system. He smiled and said, “What are you doing here?”

The next day, he sat at my bedside and said there was a new virus out west that he was concerned about. And the rest, shall we say, is history. He made one final trip and has been working from home since.

I didn’t leave my house once between March and September 2020. I’m a homebody at heart, but that was somewhat in excess. I made somewhere between 500 and a 1,000 masks. I lost count. They are all over the country, literally from coast to coast. I’m still making them, though not as many.

I make them with a filter pocket and I stuff a blue paper surgical mask, sans ear loops, in there, so I brave the world with six layers between me and whatever is out there. Not often though. Still sticking close to home.

Two days ago I did venture out after another two months of hibernation to go to my trusty CVS for my third vaccine. I read if you are immunosuppressed or on Methotrexate, you should get a third one. That’s me, so I did.

I had such high hopes, but well, we shall continue to be vigilant.

Boy, Linda Ronstadt could sure belt out mariachi songs. Wow!

If anyone needs masks, I’d be happy to send you some. Here’s a pic of what they’re like.

Y’all take care, now.

Re-Purpose

I spent a couple of days last week repurposing some sheets.  My-daughter-in-law had given me a queen set when they’d upgraded to a king. It’s soft bamboo fabric, but the bottom sheet wouldn’t stretch enough to go over my mattress. So I lopped off the elastic and turned it into three pillowcases. I also had cut up a sheet of silky, white cotton and I turned that into two more pillowcases.

I like the idea of repurposing. It’s what I did when my fingers were making me suffer so. When my thumbs, index fingers,and middle fingers were taking turns developing fissures, and were consistently in different stages of breakdown and healing, I called on my ring fingers and pinkies to pick up the slack.

I repurposed them. And they, like troopers, jumped to the task. They became my go-to fingers, to work my cell phone, my tablet, even my keyboard. They went above and beyond the call of duty, and the same fate thankfully did not befall them. Though I lived in constant worry that it would.

I was advised by my doctors not to wrap my fingertips with adhesive bandages, which I had been doing every single night in order to keep the prescribed ointment from rubbing off on the sheets while I slept. Too much stress on your skin, they said. Use white cotton gloves, I was told, so I ordered some.

But alas, once I put them on, I could not use my gadgets. Their screen needed to feel my warm, live fingers, apparently, and I cannot go to sleep without reading myself to sleep. So I said, I don’t need all my fingers covered and chopped off the parts of the gloves I didn’t need. I digitally altered them. Problem solved.

They look funny, but it works. And it’s easier to work my gadgets with my own digits than to use a stylus pen. Don’t have to worry about where I last left them. And it looks like I am making my way out of the woods. My fingers are on the mend. (Knock on same woods.)

Just one of the many twists and turns life makes you navigate. But with purpose we go forward, and when that purpose is thwarted, re-purpose.

 

 

 

 

 

 

Journal: The Undertow

It’s something I’m not really conscious of, yet realize I live with on practically a daily basis. Anxiety. What will today bring? What new ache, on what new spot, old spot? How bad will it be? How long will it last? How will I treat it? Will I have to drag out my old friend and foe, Prednisone?

I’m sure every day can be a little anxious for anyone, but we who have RA are accompanied by this evil scourge, just lurking and waiting to whack us one more time for good measure. Arthritis and Anxiety, not a good combination. But they can become an undercurrent in our daily life and we must not let them become an undertow that drags us down.

 

*(I’m working on a writing project and ran across this. I was surprised to see that I had written it five years ago. Surprised in that it still applies, and that I continue to remain free of the undertow.)

Osteo and RA and Age, Oh My!

So, my hands.

In the past few years, I’ve tended to buy the lightest cookware and dishware because the heavy ones hurt my hands. Last Christmas my daughter-in-law, bless her heart, gave me the most beautiful cast iron dutch oven cookpot, ruby red.

It looks lovely on my countertop.

Someone, don’t know who, left a clear plastic drinking glass in my kitchen. If you didn’t know better, you’d swear it was made out of sheer sparkling glass. I hefted it, it weighed nothing. I went out and bought some.

One day at one of my favorite shopping haunts (Target), I ran into a back-to-the-dorm sale of cheap dishes. I lifted the bowls. Again, nothing. I bought eight. My ceramic bowls are now backbenchers. Nice to serve in, but not to hold up and eat from.

So as time went on, I made allowances for my hands. After all, I’d say, you’re not getting any younger. RA is not gonna disappear. Osteoarthritis is gonna get you, each day a little more. Can’t let it get you down. Gotta go with the flow.

But now, weight doesn’t matter because nowadays I can’t touch anything. I have what the dermatologist calls “a problem with no solution.” My fingertips split (fissures) and bleed. For no reason that we can determine. I don’t think he even gave me a diagnosis. I meant to ask, but forgot. I guess he’d already named it.

It’s nothing new. This has been happening off and on for a long time. Twenty years ago, that dermatologist told me to stay away from soap and hot water. Right! I was working in an ICU and had young children. My hands were always being washed, gloved, scrubbed, and alcohol-rinsed.

Then I transferred to a desk job. Then my children grew up and left home. Then RA got worse before it got better, before I quit work. Or as I believe, it got better because I quit. And then my hands got lots better; the scourge mostly disappeared for years and years. If my skin broke down, it recovered within a few days. And then, wham!

About three months ago, my affliction returned. Perversely. Persistently. Stubbornly. Tenaciously.

It’s been three months now of pain and suffering. As I told my doctors, it’s almost disabling. And so depressing. Most days I can’t type. I can’t sew. At times, I can’t exert pressure on anything that I hold or the skin on my fingertips will either split or shred. (Sorry for the imagery.)

It’s like death by a thousand paper cuts. Feels like it too. We have so many sensory receptors in our fingertips. It’s what makes touch so thrilling, or so distasteful, depending.

I’ve tried everything in the book. Every cream. Every ointment. Every prayer. I even bought a box of exam gloves, just like the ones I used at work. Back then I considered them a culprit. Now I consider them a protective framework to hold my skin together.

I hit upon an answer by accident. One of my RA treatment modalities is to do a Prednisone hit whenever something physically taxing is on the calendar. I was going to have all my kids (4) and all my grandkids (4) in the house for a week. So I started Prednisone on day 1. And by day 7, my fingers, bless the ground they all step on, were practically healed.

I had a dermatology appointment and his eyes lit up when he saw my hands spread out like a stop sign before him. “Don’t get too excited,” I said. “It’s not your ointment. It’s Prednisone.”

He slumped back down on the stool. “But you can’t be on that forever,” he said.

Truth. And since I was on weaning doses, my fingers broke down just in time for my rheumatology appointment one week later, this past Wednesday.

He agreed. We will do a Prednisone treatment, not prophylactically this time. But again weaning down, though on a more gradual descent, till we get to zero. And healthy fingers. I hope.

“I leave it to you,” he said, in regards to the pace of weaning.

“It’ll be like titrating drips at work,” I said.

He smiled as he tapped away on his laptop. And I smiled as I padded out the door.

 

 

A New Year Wish

I’ve been lax with this site. Writing in my head, but not on my screen.

I want to say that I can’t believe this year has flown by, but I do believe it. It has.

I want to say that this coming year will be different, that I will not only finish the projects I start (and have started), but that I will begin projects that have existed, again, only in my head.

I want to say that time will tell if that comes true, but I can’t, for time does not control what I do or don’t do. Only I control that.

This has been a good year, all things considered. I did a bit of traveling and spent a week in Mexico City. Months later, I am still under the spell of having visited Frida Kahlo’s home. I find her inspirational, not only for what she suffered emotionally, but also physically. She rose above and turned her pain into art.

My family knows of my Frida addiction and I live surrounded by Frida gifts given to me over the years, from an apron with her image on it to a Barbie doll version of her. But the best part about finally getting to walk through what had been Frida’s home was being escorted by my younger daughter, the world-traveling writer who is living the life I could only dream of.

One thing that I’d never dreamed of doing was going on a cruise, but my younger son finally managed to convince me after several years of trying. We did the Caribbean route and it was amazing, the ship itself. A floating resort. What sticks with me about the ports of call is the color of the sea, an aqua blue that glitters like jewelry in the brilliant sunshine.

And the sunsets at sea. I have no words. But I do have a photo.

sunset at sea

An image of hope. It can only get better tomorrow.

Another thing I want to say is that I wish everyone a Happy New Year. May all you wish for, and all you dream of, come your way.

Energy Banking

“The pajamas are right near here,” I say.

“Later, I want to look at shoes now.”

I sigh. We are at the mall, in one of its biggest stores, with lots of acreage. We are there because he wanted more pajamas. There’d been no mention of shoes, and immediately, a thought assails me: the men’s shoe department will makes us walk miles to find.

“You know how I deal with this dis-ease?” I ask, as I chase his long strides. “Like I have an energy bank account. And I can’t spend $100 when I only have $50 in the bank.”

It is his turn to sigh.

We end up skipping the pajamas. He has plenty anyway. Besides, he finds the shoes he’s been wanting. After we pay, he turns to me. “I wanted to go upstairs and eat. Do you think you have enough in your energy bank?”

Wow, maybe after all these years I have finally found a way to get through. To help him visualize how it is sometimes. How the lethargy settles over me, and the energy seeps away. How I’m so tired of being tired.

Now, with no kids underfoot, and no regular job to get in the car and drive to, I should be overflowing with energy.

RA is such a thief.

And this year it seems more greedy than usual. But I try to economize.

Last month our anniversary fell on a Friday and we went out for a nice dinner. We thought we might add a movie to our night out, but the show times were on too late.

It would have been after midnight by time we left the theater. And the next day we had his work picnic and a train ride to go on with our kids and our granddaughters. And I definitely did not want to be tired for that.

So we decided to catch a movie later that same evening, when we could sleep in on Sunday morning. Things are far more enjoyable when I know I can schedule a rest and recovery window.

Though I don’t really “rest.” I occupy myself with things that don’t require much of an expenditure of physical energy, like reading, or writing, or quilting. I make new energy deposits by doing the things I love to do.

I’ve now picked up another activity that takes me away from the tiredness, and the aches and pains, that like to visit me more often than I’d prefer. I’ve taken up coloring. It makes me feel so retro, though I do have my detractors.

“Didn’t you color when you were little?” he says, when I start working on the umpteenth page.

“Nope,” I lie.

I’m pretty sure I got to color in kindergarten. Wasn’t staying within the lines part of the curriculum? But I don’t remember having the luxuries of unlimited crayons and coloring books at home.

Coloring is now being touted as therapy, as it lets you unplug from the day’s trials and tribulations, sort of. I know I can never release the hatch that jettisons RA from my life, but I can allow myself time to forget about my parasitic passenger.

Below: some of my moments of zen. And as Mr. Spock says, “Energize.”

 

Dream

Always dream.

joy

Have faith in you.

joy1

Find joy in all the little things.

elliot

Live this Eliot quote.