Still me... by Debby Myers #WindowOvertheSink

Welcome Debby Myers to the Window today!

Hi, everyone – it’s been a couple of years since I wrote last about my Multiple Sclerosis. Can you believe it? I left you talking about all the ways I was trying to focus my attention on anything else except…of course, the Multiple Sclerosis. I am going to start with where I ended before talking about what keeps me going on my worst days. 

The best thing that has happened is the birth of my granddaughter, Joelle

Marie. Her name is a combination of her two grandmother’s middle names. The “Jo” is my middle name. My son wouldn’t tell me what they were going to name her the whole pregnancy. He would say “we haven’t decided yet.” Yeah, right…but I was so touched when I heard it. And she is so precious. She just loves Nana and Papaw too.  My children say that’s all the grandchildren I get, so we’ll have to wait on my two step-daughters, who say they may not have any. Or maybe wait for my oldest daughter to get married and we can adopt some. We have eight. I’m good with that, especially since they are all such great kids! Five boys and three girls. The time I spend with them right now is when I feel the best. I push myself when they are here. 

I still try to hide my struggles from my family. One day I will be a burden, but I want to delay that as long as I’m capable. Leading to a great thing that has happened in the last two years―I joined my MS online support group.

When I have questions or I’m feeling down, I can go there. Even though our symptoms are all different, somehow our feelings are all similar. We “get” each other. I’ve spent entire days in the chat room―comparing, sharing, and caring about all the others with this disease. It’s a large community and they are all strangers that have become MS friends.

Other good things that have happened. I directed and created my 20^th play for Ole Olsen Memorial Theater. I made it my last as a director. I will agree to co-direct or be an assistant director, but I can’t predict how I will be on any given day. I’ve spent 25 years with the organization. It is another part of me that is changing. Last time I wrote I was working on learning how to be this new person with this incurable disease. I still don’t know how. Aside from that, directing is hard, as I’ve written about. My last two shows I didn’t have a true assistant as they both became a part of the crew. Being the Publicity Director for the board meant I had all of that responsibility too. I just can’t do the shows at the level and with the quality I want them to be. Going out on top isn’t a bad thing, but having to go out at all…is. 

Finally, to update you on the Multiple Sclerosis itself…it’s progressing.

That’s the kind I have. I’ve had four more infusions of Ocrevus, which is the only treatment for Primary Progressive MS. It has, I think, slowed the progression. I’ve been “stable.” I have only had one new lesion in the four years since I was diagnosed and they found 17 lesions in my body. I have had a total of 10 exacerbations―they create new symptoms or enhance existing ones. They can stretch out for multiple days or weeks. They range from mild to serious in severity. You may also have different symptoms during different exacerbations. So, just like the disease itself, they are very unpredictable. There are only two triggers for exacerbations―stress or infection. These triggers increase inflammation, which is the biggest threat to MS. All of those I’ve had temporarily worsened the symptoms I live with every day. The last one brought on a new symptom, and so far, it’s not going away. Doc sent me for another MRI, but no new lesions. The new symptom was caused by an exacerbation. 

As I sit here typing this, I am frustrated. Both of my pinkie fingers are now numb and tingly. You wouldn’t believe how much you use your pinkies! Typing is one of the times when I notice most, but anything I do with my hands is now more difficult. When this symptom came on, I was just getting over a mild case of the flu, likely the trigger. Doc says it “might” still go away at some point. Ugh! She wants another round of intravenous steroids to see. NO! I have worked hard the last several months to begin losing that 40 pounds I’ve gained. I’ve lost 16 already and now along comes those steroids. It’s all so frustrating, but losing my pinkies sunk me into a week of depression.

I am just coming out of my funk. I spent more than a week in the house. I didn’t see anyone except my husband and we didn’t even talk much. He kept asking, “You Okay?” All I did was play computer games and stare blankly at the TV.

I kept rubbing my pinkies, thinking they would come back. When they didn’t, I cried and I slept for an entire day. My pity party was well underway. It was one morning last week when I was lying in bed drinking coffee with my blank stare scrolling through my phone when I looked up and something so subtle, yet so obvious, caught my attention. 

It was my own reflection in the mirror above my dresser. I looked like another person. All those times I asked myself “where did I go?” and all this time I’d spent trying to become this different version of me…wasted?  I was 56 and I challenged myself to not up no matter what. Had that changed about me, too? 

I glanced back at my phone. While I was sitting there scrolling earlier, I had come to the bottom of all my text messages. The name I saw on the screen when I looked down was Kurt. Kurt Schindler was one of my best friends. I started to read all the texts we had shared over the last couple of months of his life, clear up to the night before. With everything he was going through, he kept talking to me. He kept telling me he wasn’t giving up. He said he was thinking of me knowing even with MS, I was still beautiful, creative and smart. Kurt said he knew I wouldn’t let anything change who I was. Hmmm…

I got up, got dressed, fixed my hair, put on my make-up. Looking back in the mirror, I really felt overwhelmed with feelings. I sat down at my computer and started writing. I wrote four different articles that I hope to submit to magazines. I think I was more productive in that one day than I had been for at least a month. As I was straightening up my living room, I picked up the Snoopy quilt I had bought Kurt just weeks before he died. I wrapped it around me. Life (and death) brought me back, numb pinkies and all.

Kurt Schindler...Go Rest High

His name is Kurt, "our Kurt," and he is as much the heart of the Ole Olsen Memorial Theater as is the building itself, the plays and shows that have given such pleasure for all these many years, the stage at the front of the building that echoes with the emotions that are left there.

I can't believe he's gone. His illness was fast and furious and left so many of us aching with loss and sorrow. And laughing. Because wherever Kurt Schindler was, laughter was there, too. And love. As dearly as we all loved him is how much he loved us in return.

Because I was so fascinated by the world of community theater, he asked me to be part of the production of A Christmas Carol in 2017. I was undoubtedly one of the worst assistant directors ever, but I have memories that will stay with me forever.

As do we all.

From Angel Williams: My darling Kurt... it is hard for me to find the words at this moment. Since we first had our bonding moments on stage nearly 14 years ago, you have been my collaborator, my partner in creativity, my dear friend, and my beloved chosen Family. Rehearsals and performances, late nights preparing, phone calls, gazebo time, dinners and road trips, doing the hustle, and my wedding, just to name a few...Cherished memories that I will always carry with me. We saw each other through tremendous joys and deep sadnesses. I am struggling to imagine this world without you in it. Although my heart is broken to lose you, I am forever thankful for the time we had together and that you are no longer in pain. I have no question that you love me and I know that you always knew how much I love and adore you.

You had me sing this at Bill's funeral...and no truer words could be shared now that you are gone: "It well may be that we will never meet again in this lifetime, so let me say before we part: so much of me is made of what I learned from you. You'll be with me like a handprint on my heart. And now, whatever way our stories end, I know you have rewritten mine by being my friend."

"Because I knew you, I have been changed for good."

I love you, honey.

Jayne Kesler

“Kurt’s Role as Otto Frank”

I had the pleasure of directing Kurt Schindler in his last role on the Ole stage.  He pursued the role of Otto Frank from checking out a script to read early before auditions to researching Otto Frank’s story.

He was the perfect choice for Otto Frank. Just as Otto was the anchor for the residents of the Secret Annex, Kurt was the anchor for our Secret Annex Ole family on stage.  He enjoyed working with the Ole veterans in the show and relished having Brandi Davis, a veteran performer but a newcomer from Elwood to Ole.  He was particularly fond of working with Kiley Stiers and our Ole newcomer Carsten Loe.  He wanted success for all of our young actors  and made suggestions to each for their characters, and he so enjoyed interacting with them on stage.  He was their father figure.   Kurt and I both valued a positive “family” relationship among our cast, and he put in the extra effort to make our cast a family. 

No show with Kurt would be complete without laughter and inside jokes, and The Diary of Anne Frank cast had a terrific balance of laughter and tears.  It was not an easy show for Kurt because, as we realized afterwards, his pain and difficulty with memory were a result of his cancer, but playing the role of the historic icon,Otto Frank, and telling the story of all the residents in the Secret Annex took precedence over all he was suffering.  His last role and performance on the Ole Stage were exactly what he wanted, and his Otto Frank was excellent!

***

Kelly Matthias-Williams

Kurt and I were from the HIGH SCHOOL graduating class of 1985.  Although we did not go to school together, we enjoyed the same music, a love of theatre, as well as the shows from the past.  We became close friends.  When he was President of Ole Olsen, I was his Vice President.  We trusted one another with our secrets, and our past.  As far as friends go, he was a rare gem.

He had a faith in me like no other.  Kurt inspired me to be a better actress, singer, and director.  I will always recall thinking, that COFFEE, by Cole Porter, was WAY out of my range.  I said something to him, and he said, “Well you’re hittin’ the notes!!”  I thought casting me to play Susan Boyle was crazy, but he assured me that I could do it.  When I didn’t have faith in myself, he had enough faith for the both of us. 

His calm in the eye of a theatre storm was quite impressive.  Everyone loved him and wanted to make him proud.  I rarely saw his feathers ruffled by ciaos in a rehearsal.  He genuinely cared about all the people he worked with, played with at Ole, as well as his other endeavors.  He took time to make people feel special.

I think we’ve all found since his passing, something that those of us who’ve known him for a while already knew … he was VERY LOVED!!  Not only did he have a special relationship with all of us at Ole, but his co-workers, customers, and the crew from the “old” Club 14 days remember him fondly.  Kurt had a deep voice with a contagious laugh.  He had that ever-present smile that lit up a room when he showed up to an event or party fashionably late.  The echoes of “Where’s Kurt?”  could be heard, even when the party was for him.  He knew how to make an entrance.   

Thanks for the love and laughter, Kurt!  

Alan Myers

I can say with certainty. You can be all things to many individuals. On all levels of diversity. Individuality. Each relationship was full of unconditional love. Unique and trusting. He knew how to fill anyone's spirits. At least, that's what I saw. 

Debby Myers

I first got to know Kurt under a table, literally. We were both cast in a show called The Dining Room. We had so much fun under that table! That's where we forged and pledged our love and friendship 'til the day we died. 

On the stage, Kurt was a gifted actor that I had the pleasure of directing a number of times. Whether portraying a dramatic role like Lt Colonel Matthew Markinson in A Few Good Men or as the funny and crazy Sedgwick in One Flew Over the Cuckoo's Nest, Kurt could create a character―heck, Kurt was a character! 

Memories just keep flooding into my mind and there are many I could share. His fingerprints are all over our theater group as a director, writer, creator, and Hall of Fame member and he will be truly missed. But what hurts even more is the heartbreak I feel over losing one of my best friends of my lifetime. We never fought, we always laughed and it will be so hard for me without him. We spoke every week, sometimes twice clear up until his passing. I got him a Snoopy quilt a few months ago―he snuggled under it as he left us and I'm so grateful to the family for returning it to me.

Cari Brooks Scott

Kurt Schindler...our Kurtie...was the most humble, kind hearted, talented, and fun person that graced our Ole stage and became my dear friend. He was our own super-star with memorable roles; but he was so much more than that. He made everyone he met feel valued and important; his laugh, contagious and infectious. My greatest memories are getting him to sign a directors copy of a show he wrote that he was going to throw away-he said he felt so important by autographing that for me. He made it a point to sit beside me during a show that was sad so he could hold my hand and comfort me; knowing I’d lost my husband only months before. He always managed to catch me peeking out of the stage and took countless pictures of half of my face. My boys also loved him; my youngest, Canaan, didn’t know his name was Kurt for the longest time; referring to him as “Peace Brotha”, the phrase they said to each other whenever they saw each other. To say he will be missed is an understatement; a hole in our hearts for quite a while, I’m sure. I’m thankful and blessed to have known him; and because I knew him, I am changed for good.

Nancy Neff

Kurt was a mood lifter, confidence booster and someone I always looked forward to seeing or hearing from. His belief in someone else's abilities - especially your own - was contagious. Have so many favorite memories with Kurt but probably the most special was the dinner theater (opening night) for Once Upon A Cole. I asked him to come out with me to introduce the show. Though I'd written the fairy tale, he helped me turn it into a play. His supportive response was that it was my moment - drink it in and savour it. Thank you, Kurt - for everything. I continue to cherish you and the memories you helped create with all of us. I love you, dear friend.

Shannon Morton Banter

A picture of Kurt from the 1st Showstoppers. He sang "Mr. Cellophane" from the movie Chicago.

Blair Brown

Kurt knew I wanted to be a Hollywood actor, and he'd always ask me about my plans and talk about his time on the set of Golden Girls. He was very supportive of my dream.

Dan Brown

...Kurt was very supportive of Blair... and Danielle. In fact, Kurt asked Danielle to help him direct one of his shows. His belief in others brought out their best.

Joe Pyke

Kurt was so talented and creative. He excelled at comedy, especially parody. When writing a play I feel he was intentional about making sure each character had their moment, at least one. As an actor, he could be a bit territorial, but once he had his part he would work and polish his performance to a high standard. He challenged himself and helped his fellows rise to theirs. His was a generous and compassionate heart. He’ll be sorely missed by many.

Brandi Murphy

To say that Kurt Schindler has been an inspiration, authentic, kind, caring, humble, and so much more is an understatement of his many unique and wonderful attributes.

Kurt along with Kelly Mathias-Williams cast me in my first show with Ole Olsen in nearly 20 years. He opened his arms and heart with love and friendship immediately. I instantly felt as though I had known him my entire life. 

Kurt encouraged me along with many others to write, and I did. I wrote a Cole Porter review with much assistance from him. I have written songs after his encouragement to learn to play an instrument. His never ending positivity and support has enriched the lives of more people than I can count. 

I am blessed to have been able to have his friendship over the last few years. And while the world will never be the same without “our Kurt” the world is certainly a better place for having had him in it. 

Mary Geesa 

I think of laughs, honesty, devotion and friendship when it comes to Kurt...but mostly I see how supportive he was. Kurt would support you in achieving your dreams and also support you in your choice to give up or lose one of those dreams. He knew how to lift you up and also understood that sometimes you were in a low, dark place and needed to stay there for a little bit. Kurt could support you while you were trying to support someone else. He had a unique and never-failing ability to connect with a person on a human level. No judgment given or taken. When Kurt listened to you, he truly HEARD you. Kurt had an amazing way of listening to your goals, and telling you all about yourself but in a way that made you feel like a bright and shining star- - like you were the best of the best. He supported his friends...no matter what crazy thing you wanted to do...Kurt believed in you.

***

There is no good way to end this particular post. I thank everyone who contributed to it. I thank Kurt Schindler for being who he was...who he is, for what he gave and continues to give. We love you, Kurt.

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.

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.