Tuesday, December 26, 2017

...a journey that must be traveled...

Debby Myers is back with us on the Window today, continuing her story where she left off last week. She'll mention in today's post that she doesn't feel "strong and brave." I think I understand that, but to me, she still is. I'm so glad she's back this week to include us in her journey.

Life is a journey that must be traveled no matter how bad the roads and accommodations.- Oliver Goldsmith

The woman I was before February 22, 2016 no longer exists. She worked 50 hours a week on her feet, supporting her household. She was a social butterfly, always on the move. She was trim and fit. She traveled. She played at the park or jumped on the trampoline with her grandchildren. She cooked, cleaned, and shopped. That woman is gone. That was me & now I’m trying to figure out how to be me again. To be continued…this is where I left off.

So today is Christmas Day. It’s been 22 months since I was diagnosed with Primary Progressive Multiple Sclerosis. It’s literally taken all these months to get my plan of treatment set to move forward – to slow the progression & manage my symptoms. I started infusions of Ocrevus in September, which I’ll receive every six months for…. I guess, forever. I’m taking a drug for spasticity, a drug for nerve pain, a drug for cog-fog, a drug for bowel movements, a drug for inflammation and a drug for digestion and finally a probiotic, magnesium, Vitamin D and my thyroid medicine I’ve been on for 26 years. All that and, still, my most recent MRI showed a new lesion on my spine in my neck between the third and fourth vertebrae.

There’s walking, or should I say falling, which I’m doing more and more often. My right leg being numb, tingly, and buzzing constantly does little for my walking. I just drag it along with it feeling like it weighs 100 pounds. Speaking of pounds, I’ve put on 40 since my leg stopped working. Before that I spent 8-10 hours a day, five days a week, running around a grocery store. Now I can’t run around at all – or walk. Of course, the steroids I’ve taken four times in the last couple of years haven’t helped. I ride a stationary bike every day, but physical therapy has been temporarily ruled out. Not because of my leg, but because of another symptom I’ll live with forever. The MS hug is its nickname. What it really is is severe inflammation of the tiny muscles that hold together the rib cage. This inflammation causes a feeling of tightness, like a girdle, from just below my breasts to my belly button.

The lesion on my spine was the striking force that led to discovering my MS. It’s located right where the nerves split off mid thoracic. In that very spot, I have a pain that feels like a knife in my back. Not that I know how a knife in my back feels, but that’s my best description. Just below that area is my stomach and colon – a part of which became numb because of the attack on my spine. This makes it a challenge to digest and then release food. That one lesion led to my first MRI, which disclosed 15 more lesions on my brain. Although none were active, they were at some point. Therein lies the cause of my cognitive fog, my lack of focus, my reaction to bright lights and sounds, the blurring off and on in my right eye and the occasional screeching sound in my right ear.

Finally, what may be my worst symptom is the fatigue. I have never felt anything like it. Even when I worked in the grocery store the day before Thanksgiving and would come home so exhausted. The hardest thing to accept about it is that I don’t have to have done anything at all and still it comes. Every day, sometimes several times a day, the fatigue is overwhelming. I’ve learned in the last 22 months that when it arrives, no matter where I am, I must stop whatever I’m doing and rest.

So, the woman I used to be was just gone in a flash. And now people call me a survivor, strong and brave. If only I could see me in that way. Most of this time I just feel weak, alone in my feelings. We with MS are snowflakes – no two alike. For the most part, those who don’t have MS aren’t schooled in it. As much as I love my family and friends, I’m pretty sure most of them don’t really get it either.

Yet it could be worse. I could already be in a wheelchair. I could already be dependent on all of them to take care of me. I know all of that….but I still miss the woman I was. And I’m still trying to figure out the woman I am now.

Despite the constant pain and weirdness I live with daily, I have many things to make me happy. I’m spending a lot of time with my four grandchildren – time I never had before when I was working. I’m continuing to enjoy community theater. Even though I can’t really act anymore, as long as I’m able, I want to continue to direct and serve on the Board of Directors. I’m currently the publicity chairman and am enjoying designing programs, newsletters, and flyers. I’m also working on solicitation, finding new advertisers and audience members for our shows. I’m doing a lot more reading and writing.

I spend a lot more time, alone, giving me the opportunity to figure out who I am now. It’s a different me--I didn’t ask for it, but I got it. Telling my story helps. I hope it does the same for you.
Debby Myers lives in Peru, Indiana with her husband, Alan. She has three grown children. She has four grandchildren. Debby has been involved with Ole Olsen Memorial Theater for 22 years now. This season she will direct her 15th show. Since her diagnosis of Multiple Sclerosis in 2016, she has embarked on doing some writing. I 
Besides being here last week, a year and a half ago, Debby visited Word Wranglers. Click on the link and read what she shared with us that day.

Friday, December 22, 2017

I believe...

I don't know when I wrote this. The grandkids mentioned near the end are 20 and 21 now, so it's been a while, but I was happy to find it. I hope you enjoy it. I hope you believe. Merry Christmas to all of you, and thanks for continuing to read the Window Over the Sink.

Faith is believing in things when common sense tells you not to. - Fred, in Miracle on 34th Street

I'm a Christian, so believing in and embracing the “reason for the season” was never an issue. I have three older brothers, so believing in Santa Claus was an issue. In short, I never did. In our house, by the time I came along, Santa was a mythological folk hero portrayed, as Susan said in Miracle on 34th Street, by a “nice man with a white beard.” I liked him, I wanted him to be real, but I knew better. Some part of me wondered if the reason a lot of classmates got better presents than I did was that they believed in St. Nick and I didn’t.
         Twenty or so years later, my husband and I worked hard to keep our kids’ belief in Santa alive and well. Duane even gestured over the fallow fields we drove past and assured the back seat brigade that the rows only looked empty—they were actually filled with bumper crops of air oats. This peculiar grain, which grows only where there are children to imagine it, is what reindeer eat that allows them to fly.
         One Christmas Eve, we drove home from my family’s celebration through a Christmas card display of falling snow—great fat flakes falling straight down. Although it was only late afternoon, it was dark. The car was full of gifts and goodies and excited children.
         Duane saw the movement from the side in time to pump the brakes gently and slow to a crawl. Allowing the cluster of antlered deer to cross in front of us to the field on the other side of the road.
         The kids fell silent. Watching.
         “They’ll be working tonight,” said Duane.
         “Uh-huh.” As usual, I had a brilliant rejoinder to add to the conversation.
         “Filling up on air oats before they go out,” one of the kids offered.
         I know the deer were whitetail, not reindeer. I know the only thing the field produced that night was a few inches of snow. I know that Duane and I did the Santa job later on that night, laughing and wrapping and eating his cookies and drinking his milk. I know all that, really.
         A year or two ago, I was driving somewhere with grandsons in the car. I don’t remember which ones or how old they were, only that there was more than one and it was wintertime. One of the boys lifted a hand, gesturing toward the field we passed. “Look,” he said. “Air oats.”
         I don’t care what I know—I believe.

Friday, December 15, 2017

We can go down now.

The silence is eerie in its completeness. I don’t know where the panic-induced adrenalin has gone, because it was noisy in and of itself, but it’s curiously absent. I’m calm and unafraid. Well, not calm—we’re 600 feet in the air, for God’s sake, dangling precariously from a harness without a seat. There’s air buffeting us around a bit. It feels…nice. Scary. No, just nice. I never think of exhilaration as being silent but it is right now—silent and joyous. Is this what dying is like? I wonder.

“Okay,” says Lynn, my sister-in-law and partner in crime—for whom height is an issue, “that’s enough. We can go down now.”

I wrote that five years ago. I was 62, Lynn was 59, she has a heights issue, and I’m terrified of water. These all seemed like viable reasons to go parasailing. So we did.

I was fairly new to being retired and terrified of what I was about to become. Retired people didn’t work anymore, did they? They watched television, complained about their health, and drove too slow in the left lane, right? They used the term “fixed income” as though it was confined to them. They got percentages off at stores and restaurants, but never got their wallets out until the cashier told them how much they owed. They went through the 15-items-or-less checkout with a full cart because, as one man told me while I stood behind his week’s worth of groceries with my bread and milk, “You can wait. I’ve worked all my life. I’ve earned this.”

That day in the store, while the guy took his time (and mine) because he'd "worked all his life," not the one when Lynn and I were strapped into harnesses and lifted high in the air, was the life-changer. It was the one that made me decide what kind of old person I intended to be.

I would be the one who counted her items before she used the express line, the one who drove at least the speed limit and stayed in the right lane unless I was passing someone. I would only watch TV if there was absolutely nothing better to do and my answer to “how are you feeling?” was always going to be short and positive. I’d take my senior discounts, but I’d have my wallet out and waiting when I heard the total owed. I was going to keep working, keep writing until they withdrew my keyboard from my cold, dead hands.

It’s not always as easy to do as it is to type the words here—even I will admit that—but it’s not always that hard, either. I can’t write as fast as I used to, but slow is nowhere near the same thing as stopped. I’m not sure how I’d do with eight hours a day on my feet anymore, but I log some volunteer hours and have a really good time doing it. I don’t have any trouble keeping up with traffic, staying on the right side of the road, or knowing which checkout lanes I should use.

Even though parasailing is the rashest thing I’ve done in this new invention of myself, the rude old man’s remark was the life-changer for me. I’m really glad for both experiences.

I still want to go zip-lining. Or maybe make a tandem jump from an airplane. I want to go back to Europe. I’ve learned there are two great words that go along with being retired.

What’s next?

Tuesday, December 12, 2017

A Change in Plans

I'm pleased to welcome my friend Debby Myers to the Window today. She has stories to share and a storyteller's voice to do it with. 
I try not to give too much writer advice--I'm not an expert by any means--but I know the place to start a story is where something changes. Debby's story today starts with a huge change. Please make her welcome. 

Life is what happens while you are busy making other plans. - John Lennon

Where did I go? Why am I feeling forced into being someone I’m not? Why do I feel like I’m gone? Only I seem to know that I’m never coming back.

February 22, 2016. One day I will not soon forget. A couple of days earlier, I’d been at work at my job as a co-manager for Kroger. Towards the end of my shift, my right leg kept giving out on me. It felt like it was buzzing, numb, prickly. I thought maybe I was just tired. When I got home, I went to bed.

When my alarm went off at seven a.m., I stepped out of bed and fell. I couldn’t feel my right leg at all. I sat on the edge of the bed and began rubbing my leg. That seemed to help bring the feeling back. I showered and got ready for work, all the while feeling the strange sensations in my leg. I started to feel a sharp pain in my back too. That’s when I decided to make a quick trip to the Redi-Med. I called my husband, who was very concerned. I called my boss to let him know I’d be late, but would be in after my visit to the Redi-Med.

That decision led me to the ER for a cat scan, blood work, and X-rays. The ER doctor said the tests hadn’t revealed anything, but because of the numbness, he was afraid it might be neurological. Neurological--what did that mean? Then he said they would be taking me by ambulance to have an MRI and see a neurologist.

Now, I’d never had an MRI before but just the thought of it terrified me. And an ambulance? Was this an emergency? What was happening to me? This was the beginning of my losing myself. I called my husband. He was on his way. He seemed terrified too. I called my boss. He seemed terrified too. Was I dying?

Once there, I was taken to a room in the neurological wing. For 24 hours after arriving, I sat and waited for someone to tell me what was wrong. I cried, I yelled at nurses, more symptoms arrived. Not only was my right leg numb, I still had the stabbing pain in my back and now I had this squeezing pain in my ribcage and I felt like my head was going to explode.

Finally, they took me for the MRI. Several hours later, a doctor came in. He said I had a mass on my spine, possibly a tumor. By this time, my daughters were there. Now they also looked terrified. A tumor? Were they going to remove it?
The doctor didn’t have any answers yet. He was not a neurologist. He said that they were going to do a spinal tap. What? They were going to stick a huge needle in my spine? Why were they testing my spinal fluid? Did they think this tumor on my spine was cancer? I’d been afraid in my life before, but nothing like this. 

I waited.

A neurologist came into my hospital room where I’d spent two of the most trying days I'd ever known. He explained that I didn’t have a tumor after all. He told me that the mass on my spine was a large sack of inflammation. The inflammation had been the result of my nervous system attacking itself. He said the myelin on my nerve endings had been eaten away, causing my nerves to send mixed signals to the rest of my body. This caused the numbness, buzzing, and prickly feelings as well as the stabbing pain in my back at the sight of the inflammation. It also led to the squeezing in my rib cage.

My first questions seem very stupid to me now. So, do I need to take some medicine? How long until I’m better?

The doctor replied, “You aren’t really going to get better. You have Multiple Sclerosis. There is no cure, but we will manage your condition.”

Multiple Sclerosis? Manage my condition? Wait a minute…I have to get better, right? He said I had had the condition for decades, that I had 15 brain lesions and two on my spine. He said I was lucky that I’d gone this long without an attack. He would send me home with steroids to reduce the inflammation and would see me again in two weeks. At that time, they would start me on an MS drug to help prevent future attacks.

He would initially take me off work for 90 days to see if any of my symptoms subsided enough for me to return. He also told me I should apply for disability. Oh no. I could surely go back to work, right?

The first MS drug I was given caused side effects. More symptoms. I had to go through four months of detox, which made me weak and nauseous.

My short-term disability was exhausted and I was terminated. My disability was denied. The doctor said he couldn’t give a definitive answer as to my ability to work yet and I had to file an appeal.

Shortly after that, my husband said he thought we should get a second opinion. He felt this doctor wasn’t invested in helping me like he should be. So, I got a new neurologist. She made me feel comfortable, because she didn’t pull any punches. But she gave me more bad news. My MS is primary progressive–meaning my symptoms are with me to stay and I won’t have remission, only progression.

So, let’s go back to the first paragraph. Where did I go? Why do I feel like I am gone? Because, in truth, I am gone. The woman I was before February 22 no longer exists. She worked 50 hours a week on her feet, supporting her household. She was a social butterfly, always on the move. She was trim and fit. She traveled. She played at the park or jumped on the trampoline with her grandchildren. She cooked, cleaned, and shopped. That woman is gone. That was me & now I’m trying to figure out how to be me again. To be continued…
Debby Myers lives in Peru, Indiana with her husband, Alan. She has three grown children. She has four grandchildren who are the apples of her eye - Makenna,Taylor, Izaac & Jameson. Debby is a graduate of Maconaquah High School and International Business College, where she studied business management. Most recently she was employed as a co-manager for Kroger for 15 years. In the past she co-owned & operated a local day care for seven years, worked in development at the Honeywell Center for five years and "played" as a radio personality for Peru's former radio station 98.5 FM for nearly 10 years. Debby has been involved with Ole Olsen Memorial Theater for 22 years now. She has performed, worked backstage, costumed & served on the Board of Directors, where she now serves as Publicity Chairman. But her true love is directing. This season she will direct her 15th show. Debby is also a member of the Ole Olsen Hall of Fame. Since her diagnosis of Multiple Sclerosis in 2016, she has embarked on doing some writing. In her spare time she likes to read, listen to country music, and travel. Having been to 40 of the 50 states, her next destination will be the Eastern part of the US, particularly New York City to see a show on Broadway.  
A year and a half ago, Debby visited Word Wranglers. Click on the link and read what she shared with us that day.

Friday, December 8, 2017

Let's Go Fly A Kite...

 This is from July of 2016. It's a subject I've written about more than once because I think it's so important. It also seems to be as much a part of the holidays as ribbons and tissue paper. I've doctored it some and hope you'll have patience with seeing it again.

I've danced with depression. It's a demanding, crushing partner that doesn't so much lead as step all over your feet and then lay the blame on you. I was one of the lucky ones. It wasn't that bad. It didn't last that long. Zoloft cut in and two-stepped me off to a lighted area where I was with music and friends and people who loved me before the depression could sit me down over there by the dark wall with no one to talk to and not a song to be had.


It is on days like today that I worry. When I wake with a sore hip and a strong inclination to stay in bed. When I eat for comfort instead of because I’m hungry. When I am irritated by things that I shouldn’t even notice. When the clouds in the sky—yes, there are usually clouds and/or darkness when I feel this way—bring me close to tears. Words are coming just fine on my work-in-progress, but…you know, are they really okay words? On days like today, I wonder if my cranky dance partner is coming around again.

No, it’s not.

Because by this afternoon, I am better. I have laughed and talked and sung (although it is true other people wish I wouldn’t.) I’ve eaten, but not too much. Medicated my hip and hoped it is nothing. Stayed awake.

I’m only writing this because depression is a villain to be watched. It’s all well and good to kick it to the curb, but the slimy rat bastard might crawl back and attack when you least expect it. I have no medical or psychological expertise, but this is what I do. 

Take a walk.
Go to lunch with a friend.
Laugh at something. Anything.
Find light. And color. Latch on.
Talk to someone you trust. Just being listened to helps.
Find a song that makes you happy. (Mine today is “Let’s Go Fly A Kite.”) 

It’s not that easy, of course. You shouldn’t diagnose yourself. Read up on symptoms to look for. If you need to see a doctor, see one—mine was a godsend.

I know I haven’t said anything new here, but there has been so much
discussion of safe places (much of it pejorative in nature) that I want to stress that it's a good idea to have one, where you can vent or spill or rant or rail all you need to. Today I needed to. What about you? Have you danced with the partner no one wants? If you have—or are right now—find that safe place or person; it’s not an opponent to be fought alone.

My new book, The Happpiness Pact, has a heroine with who suffers from clinical depression and anxiety issues. It's not the first time I've "used" depression as a plot point (see below), and I hesitated before doing it, but as any writer will tell you, our characters often don't do what we suggest. In the end, I was glad for the story that presented itself and I hope, for a couple of hours anyway, Libby's story becomes someone's safe place. 

In One More Summer, the book of my heart, Dillon Campbell suffers a raging
case of clinical depression. His best friend Steven travels to Paris to bring him home. I don't write guys all that well, I don't think, but I loved what Dillon said about Steven's arrival: “That’s something to come back to life to, a tall guy in a ponytail yelling, ‘Get off your ass, Campbell. I don’t have time for this.’”

I don't have time for it, either, and neither do you. There is too much joy to be found and life to be lived. Sounds glib and easy, doesn't it? It's not. I know it's not. But it's worthwhile to find the help that's available and take advantage of it. 

Friday, December 1, 2017

Now showing at Ole Olsen...

 It has been my privilege to take part in the production of this play. I'd never seen the process of "putting on a show" before and asked Kurt Schindler if I could watch if I stayed out of the way. I will be forever grateful that he said Yes and never let me stay out of the way even when I really should have. I can't say enough--and haven't; you'll see that when you read this post--about the actors who brought Dickens' characters to life. I hope you come and see the show.
Photograph courtesy of Sarah L. Luginbill

There’s little indication outside the Depot, home of Ole Olsen Memorial Theatre in Peru, Indiana, that there are big doings going on inside. The building is its beautiful, tranquil self, dressed up by the gazebo and the River Walk and the personalized memorial bricks in its paths. 
But inside, the stage is full. Of props, platforms, actors, and the occasional director. And there in the back, where you can sort of see it but sort of not—it’s full back there, too. The walls are black and so are the clothes worn by the cast of director
Kurt Schindler’s adaptation of Charles Dickens’ A Christmas Carol. The furniture’s eclectic. Noisy. A pink chair should look out of place but doesn’t. So should a red tutu and a dented barrel and a blow-up chicken that needs to pass for a goose. But they don’t.
Scarves are stuffed into Christmas gift bags. Vests hang haphazard and crooked from wall hooks. There are baskets here and there. Shelves that hold…stuff. At least, that’s what it looks like, but when the show begins, you see that things like a curtain, a boot, and a purple brooch have their places.
Photograph courtesy of Laura Stroud
          Schindler’s treatment of the classic story is different. There are more laughs. Some startling moments—the Ghost of Christmas Present has a lovely Irish accent, some roles are non-traditional, and Turkey Boy is…well, you really need to see the show. I’m not going to spoil that particular surprise.
But there are also scenes that, just as they’ve done in every version of the story you’ve ever seen, will break your heart. Most of the cast are Ole Olsen veterans, and their experience and dedication to their art show in their performances.
Photograph courtesy of Laura Stroud
There are new ones, too. Well, not new now. Not after the hours they've spent learning lines and expressions and nuances that have given them other identities. By now, they're seasoned.
“I wrote it hard,” said Schindler. “Maybe too hard. But I love this show. I love this cast.”
Like any other community theater, production has had its difficulties. Illness created the necessity for a last-minute replacement. People have day jobs. School. Sometimes both. There are a lot of lines to learn. Watching from her place at the table in front of the stage, the assistant director watched the process and wondered how they’d get it done. Actually she wondered if they’d get it done.
Media night was Monday, November 27. The performance probably wasn’t seamless—most worthwhile things aren’t—but it was awesome, not a word to be used lightly, nevertheless.
 Laura Stroud, props mistress, said, “We have a show.” She looked satisfied, maybe relieved. But not surprised.
Of course, they have a show. Of course, they “got it done.”
The assistant director shouldn’t have wondered. Shouldn’t have worried about old Joe or Mrs. Cratchit or Scrooge or how that many people were going to dance on the Ole Olsen stage at one time. “They’re troupers,” said Schindler. “They’re all troupers.”

Tickets are still available for the shows. Call 765/472-3680 for reservations. Friday & Saturday Nights: 12/1 & 12/2; 12/8 & 12/9 @ 7:30 p.m. Sunday Matinees: 12/3 & 12/10 @ 2:00 p.m.