How I Spent My Summer Vacation

There was a chill in the air this morning in upstate New York. Summer is drawing to a close and for many, this long holiday weekend signals the coming of Fall.

Local schools will begin classes next week. When I was a student, early September was the time to reconnect with friends and reminisce about summer vacations. Since many of you feel like friends to me, let me share the story of my summer vacation.

A few months ago the President of Ms. Wheelchair America (MWA), my friend Shelly Loose, called and asked me if I was ready to be a judge at the national pageant. I agreed without even checking the dates and told my best friend Steph, who has been to ten national pageants with me, to put in a vacation request. We were heading back to MWA.

For twelve summers (2001 – 2012) I spent my summer vacation at the MWA Pageant. Regular readers know I have been involved with MWA in various roles since my year as Ms. Wheelchair New York (MWNY) 2001. After representing my state at the national MWA Pageant, I volunteered as state coordinator of the MWNY program for twelve years. I served on the MWA Board of Directors as Secretary, Vice President and Executive Director. We hosted the MWA Pageant here in New York in 2005. I have often joked that the only roles I haven’t held for MWA are President and Judge. I can’t make that joke anymore after this summer.

It was difficult not to say anything in the months and weeks leading up to the pageant. Close friends and family knew where I was going but I didn’t say anything on social media. The excitement grew as the summer approached.

Finally, the week was here! Steph and I loaded up my van on a mid-August Tuesday and hit the highway. Armed with snacks, beverages, a fully charged iPod, a bedside commode, and a scavenger hunt list, we were ready for the open road. The drive to Erie, Pennsylvania, site of this year’s national pageant, was a raucous trip thanks to funny road signs, Chex mix, my “Steph Tunes” playlist, and an unexpected casino stop and win.

The pageant itself was uplifting and positive, as MWA always is. Our judging panel clicked right away and I enjoyed the experience of judging more than I thought I would. Every woman who came before us was passionate about a cause, and their enthusiasm was contagious and inspiring.

More than judging, I enjoyed being an observer during the pageant. When I was a titleholder, the MWA Pageant was my first exposure to being in a room surrounded by thirty other accomplished women who all happened to use wheelchairs. I left that week with women I could call “sisters,” my first peer support network of other wheelchair users who weren’t men. Watching this year’s titleholders develop their own sisterhood reminded me why I loved being a part of the national program.

It is humbling to know that I have played a small part in making it possible for other women to experience a program that helped me grow and develop as a leader. Many of the skills I use in my work and volunteer life were honed through my years with MWA. Being asked to help select the woman who will be the public face of the organization was an honor and responsibility I took seriously (even though we had TONS of fun and laughs during the week).

Each year, there are one or two women who really open up and come out of their shells during MWA. Steph and I have seen this many times during our years volunteering. Sometimes we can pick them out early in the week and sometimes we don’t notice it until we reflect back on the week during out travels home. The transformation is always exciting to watch. These women leave the week inspired to accomplish more than they thought they could, ready to challenge limitations and change their communities.

I always leave MWA a changed person too. This year I left with a heart full of joy and hope. Those two feelings have been in short supply in my life as I continue to slog through the process of acquiring a new accessible van and regaining independence. The pageant week gave me a much-needed boost of optimism and encouraged me to keep advocating through a bureaucratic process that is slower than molasses in January.

To the women of this year’s pageant – thank you for sharing your stories and convictions with us. You encouraged me more than you may realize. My will to keep fighting was replenished.

Only one of you went home with the title, (Sheri Melander-Smith from Minnesota is the new MWA 2018), but you are all winners. You will continue to make improvements in your neighborhoods, towns and states. Congratulations on your accomplishments so far. I look forward to seeing what great things you will do next!

Two women seated in wheelchairs. One is wearing a pink dress and shawl. The other is wearing a purple dress, a sash and crown and holds a bouquet of flowers. Both are smiling.
Congratulations to the new Ms. Wheelchair America!

Now it’s your turn! What did YOU do on your summer vacation?

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30 Days of Thanks Day 25 – Stephanie

I wrote about my bestest best friend, Stephanie, in 2014 when I first did the 30 Days of Thanks challenge on my blog. As I have explained for most of my life, Stephanie is the sister I got to pick for myself. She is what the author Lucy Maud Montgomery described in Anne of Green Gables as a bosom friend, “a kindred spirit to whom I can confide my innermost soul.”

When I fell in January, I made two phone calls while waiting for the ambulance. I called my sister Caroline, and then I called Stephanie. I always call Stephanie whenever I am at the end of my rope. And she always answers.

Stephanie lives three hours away, and does not like to drive in snow. I did not expect her to come visit me in the hospital because a trip to see me in January or February would most likely involve snow. So, when she walked through my door on the first Sunday I was at Sunnyview Rehabiltation Hospital, I almost started to cry.

Hello there Niecie!

Stephanie is one of five people who can get away with calling me that, a nickname her mom used to use. Stephanie, along with her husband, youngest son Brad, and mother-in-law, made me laugh, offered repeated hugs, and brightened an otherwise dreary afternoon.

I had to come. I just needed to make sure you were really OK.

Stephanie and Brad came up to visit again in August, the weekend before I moved. She knew I was stressed about finishing my packing, and cleaning out my “junk room.”

We’ll see what the weather is like. If it’s raining we can do work inside. But if it’s nice we should probably go have some fun.

I can always count on Steph for fun. Sure enough, she and Brad arrived and within two hours, we had a lunch packed and were on our way up to Saratoga Race Course. We spent the day watching horses and people, laughing over silly things, trying to capture the perfect photo. Our day was the perfect break from reality, a much needed oasis of frivolity in the midst of anxiety.

Stephanie – thank you for always “getting me.” I cannot imagine a world without your presence as my bosom friend, a true kindred spirit. Throughout this year you have listened, cajoled, encouraged, and laughed with me. You have seen and listened to me at my absolute worst, and you still love me anyway. I don’t know how I managed to get so lucky as to claim you as my partner in cute. Everyone needs a Stephie in their life, but I’m not sharing mine.

I’m grateful for the gift of your friendship all these years. Here’s to more fun adventures for another forty years!

Two Caucasian women leaning towards each other, holding adult size sippy cups with straws. Both women have brown hair and glasses.

SADWIN ’15

My bestest best friend Stephanie and I love Broadway musicals. We quote them regularly. We sing showtunes whenever we feel the moment needs music. We believe the world would be a better place if there were spontaneous song and dance numbers sporadically scattered throughout the day.

So in 2007, we decided it was time to form Stephanie and Denise Wicked in New York, or SADWIN. SADWIN is all about music, laughter and fun in New York City. That first year, we saw Wicked and Avenue Q. Over the years we have seen some great shows – such as Boeing, Boeing; Rent; The Book of Mormon and [title of show]. We still wax poetically about the afternoon I convinced her we NEEDED to see Broadway legends Elaine Stritch and Bernadette Peters in A Little Night Music. It was magical.

If we could go see a show every other weekend, we would. But life gets in the way. So we try for once a year instead, and even then we aren’t always successful. It has been at least two years since our last SADWIN trip, which is far too long.

I called her at the end of September. “Stephanie, what are you doing October 24? I don’t have to work. I think we need to see a show.”

It didn’t take much arm twisting. SADWIN ’15 was on!

Saturday we boarded the 7:10 AM train at the Albany/Rensselaer station. It was a perfect autumn morning in upstate New York. The rich colors of the fall leaves sparkled in the mist rising off the Hudson in the early morning light. The blue sky was a perfect backdrop to the colorful Catskill mountains. If you have to travel between New York City and Albany, the train is the most picturesque way to go.

Photo of the Hudson River taken from a moving train. The far bank of the river has autumn colored trees. There are wispy clouds in the sky.
The train trip along the Hudson River is beautiful in October.

After brunch with my friend David, we took a quick walk up to Central Park before heading to the Imperial Theater. This year’s SADWIN show was Les Misérables. While we usually see new-ish shows, Stephanie had never seen Les Miz (EVER!) and I pleaded with her to pick this show because I knew she would love it. I had a selfish reason for picking Les Miz too. Alfie Boe is currently starring as Jean Valjean and I have a bit of a crush on him am in awe of his voice.

Photo of two women in front of a Broadway theater. Both have brown hair and are wearing glasses and smiling. They are posed in front of signs for Les Miserables.
Getting ready for this year’s SADWIN show!

The production did not disappoint. The sets, inspired by Victor Hugo’s paintings, are evocative. The score is full of anthems as well as tender moments. The audience roared with applause after a rousing “Do You Hear the People Sing” and silently sniffled through “Bring Him Home.” Montego Glover, who was nominated for a Tony Award for her performance in Memphis, was perfect in projecting Fantine’s fear and devotion to her daughter, Cosette. Brennyn Lark, who is making her Broadway debut as Éponine, has a beautiful voice and made “On My Own” one of the highlights of the show. I think as she grows as an actor, she will get other parts and we will be hearing more from her. Gavin Lee, who was nominated for a Tony Award for his performance in Mary Poppins, was a charming and conniving Thénardier. And Alfie. Oh, Alfie. He could sing the phone book and I would swoon. Everyone, even the men seated behind us who were dragged to the show by their wives, was crying at the end of “Bring Him Home.”

The first time I saw Les Miz on tour back in the mid-1990’s, I cried for almost the entire second half. The second time I saw the show (also on tour two years ago) I only cried during “Bring Him Home.” This time I teared up at the end of the first act, and then cried again for most of the second half after Éponine died. I was not alone. Be prepared with tissues if you go see it.

Once Stephanie and I dried our eyes, we decided to head towards Times Square. Neither of us are big fans of walking through Times Square on a Saturday evening. But for convenience, we decided to avoid the tour buses on Eighth Avenue and cut across to the Broadway pedestrian walkway. Stephanie noticed a crowd gathering on Broadway and stopped when she realized it was the Naked Cowboy.

In our multiple trips to New York City, we have seen many street performers. We often stop to watch musicians and dancers. But until Saturday, somehow we never encountered the Naked Cowboy. Stephanie turned around to take a photo and I wheeled over to the curb to see what was happening. That was when he saw me.

Photo of a woman seated in a wheelchair next to a man wearing only a cowboy hat and cowboy boots. The man has a guitar strapped to his body, making it look like he is naked. His hat and boots have the words "Naked Cowboy" printed on them in red and blue letters. The man's leg is up across the woman's lap and she is holding it. They are in Times Square in New York City, in front of brightly lit electronic billboards.
Honestly, HE approached ME!

Upon spotting me, the Naked Cowboy (whose name is Robert Burck) came over and said, “Let’s take a picture!” Before I knew it, his hand was on the back of my chair and his leg was in my lap. In our brief exchange I learned he was not cold, even though he was essentially naked and I was all bundled up. I apologized for my cold hands on his leg, to which he replied, “Aw, honey, don’t you worry. Those hands will feel good on my butt!”

To prove the point, he turned his butt towards Stephanie and the camera, and reached behind me as I doubled over in laughter. Thank you Stephanie for capturing the moment.

After capturing the photos, we had a brief sixty second conversation about disability, wheelchairs, and his personal history with disability. There is more to the Naked Cowboy than a guitar, boots and Fruit of the Loom underwear. I actually wish we could have had a more in-depth discussion, perhaps with him in some additional clothing.

Photo of a woman in wheelchair bent forward laughing. A man is standing next to her, away from the camera. He is wearing a pair of underwear with the words "Naked Cowboy" printed on them in red and blue paint. He is leaning over her, with his hand on her backside.
I haven’t laughed so hard in a long time!

Stephanie and I walked back to Penn Station, stopping for frequent breaks as we had several laughing fits which brought us to tears.

The Naked Cowboy’s sweat is on my glasses!

He had his leg on your lap!

Dude – it looks like your head is in his armpit!

Your face is priceless!

Seriously, who has more fun than us?!

Nobody. Nobody has more fun than us.

Well, perhaps other bestest best friends do. Isn’t that what bestest best friends are for? They make us laugh with one glance or one word. They know all of our vulnerabilities and faults, and yet they love us anyway. They cry with us at musicals, laugh with us when street performers make us part of the act, and cry with us again when we can’t stop laughing at our silliness.

At least, that’s what my bestest best friend does. Both Stephanie and I have said we feel sorry for those who don’t have a “Denise” or a “Stephie” in their lives. Everyone deserves such a blessing.

Thank you Stephanie for another amazing adventure. I am already looking forward to SADWIN ’16. Next time, you get to pick the show!

 

My Go-To Tunes Christmas Edition

I live my life with music. I particularly love Christmas and holiday music. I know some who don’t wait until December to listen to Christmas carols (yes Susan, I’m talking about you), but Thanksgiving has to be over before I start listening.

Christmas music evokes memories, causes laughter and tears, and makes me want to bake cookies. This time of year, there is an abundance of amazing music – and some awful crap we thankfully only have to endure for about a month until next year when it returns. As one of my gifts to you this holiday season, I share (in no particular order) my go-to tunes, Christmas edition. I have done my best to search YouTube for videos so you can hear the songs too if you wish. For “classic” songs not performed by the songwriter, I have indicated the artist.

Star of Wonder – The Roches

I first heard this song when the assistant director of Campus Ministry at college suggested my friends and I should sing it at our annual festival of carols. I sang the bottom part, which is still the part I sing whenever I hear it. Ten years ago my sister Sandy and I went to see The Roches and this song was one of the highlights of the show. “I am just a lowly shepherd…why do you appear to me?” We are all lowly individuals, who seek purpose. What is it we are meant to do? Why would the Divine bother to appear to us? Yet, every day we are able to witness Divine beauty if we open our eyes to the world around us. It’s visible in the sunrise, a flower’s symmetry, a perfect snowflake, a twinkling star. I hope I never lose that wonder.

You’re a Mean One, Mr. Grinch – Dr. Seuss & Albert Hague, performed by Thurl Ravenscroft

How can you go wrong with Dr. Seuss?! I love this book, this film, and this message. “Maybe Christmas doesn’t come from a store. Maybe Christmas…perhaps…means a little bit more!” It’s easy to get caught up in the consumerism, the materialism, the rush and stress of needing to “do it all.” Take a moment to remember there is more to this season. And laugh a little.

O Holy Night – performed by Kings College Choir

Did you know this song was written by a French composer based on a poem by a wine merchant? You don’t need to be a Christian to appreciate the harmonic structure of this gem. I think this is one of those carols best performed by a choir, probably because the version I grew up listening to was recorded by a male choir. My mother once told me this is one of her favorite carols, so I think of her when I hear it.

Little Drummer Boy/Peace On Earth – performed by David Bowie & Bing Crosby

Everyone, no matter how small or how poor, has something to offer someone else. The Little Drummer Boy had nothing of value to offer, but he did have his drum. He did not walk away, he did the one thing he could – he played his drum. “I played my best for him…Then he smiled at me…Me and my drum.” Often we feel we have nothing to give, but each of us has a unique ability we can offer to someone else. This song reminds me there is always something I can do, and it doesn’t have to be big or fancy. It just has to be genuine, from the heart, and given without expectation of anything in return.

Have Yourself a Merry Little Christmas – performed by Judy Garland

This song, written by Ralph Blane with lyrics by Hugh Martin, was not always one of joyful anticipation. The original lyrics were more fatalistic. “Have yourself a merry little Christmas, It may be your last.” Judy Garland asked Martin to change them for the musical “Meet Me In St. Louis.” Others have further changed the lyrics over the years, but I like Judy’s version best. If you have never seen this movie, what is wrong with you? It is on my list of best movie musicals ever made, and has some wonderful songs, including “The Trolley Song” (which won an Academy Award), “The Boy Next Door,” and of course the title song. Go watch it. As soon as you finish reading this post.

Mary, Did You Know? – performed by Pentatonix

Written by Buddy Greene with lyrics by Mark Lowry, this song is receiving a great deal of exposure this year courtesy of an amazing version by Pentatonix. Those of us who have performed in a cappella groups (and hopefully those of you who haven’t) can appreciate the challenge of making it look easy. Trust me, it’s not. I like this song because it looks at Mary, and I feel her story is worth some attention. I am not, and will never be, a mother. I can only imagine what it is like to have hopes and dreams for your infant, wondering what the future will bring for this bundle who is still dependent on you for everything. Even if you don’t believe the biblical story of Christ and his birth, perhaps you can relate to Mary as a woman and a mother, holding her newborn baby not knowing all of the events to come. Maybe she did know this baby would change the course of history. Or maybe she just knew he was a precious gift sleeping in her arms who would need to be fed and changed soon. Either way, Mary had to raise her son and let him face his own destiny like every mother. I appreciate the strength required for this.

Still, Still, Still – performed by the Mormon Tabernacle Choir and Orchestra

I go back and forth between this song and “Silent Night” as the perfect lullaby carol. This one is Austrian, the other is German. Both have lovely harmonic structure. In the end I picked this one because I live in a part of the world where Christmas is celebrated in winter, and the image of falling snow makes me think of home. I chose this video not for religious reasons, but because my friend Becca is a violinist with the orchestra and I saw her face in the clip as I was searching YouTube. If you ever find yourself in Salt Lake City, and have the chance to go listen to the choir and orchestra, please go. It is one of my favorite memories of an amazing trip to Utah nine years ago.

Last Christmas – Wham!

This song is all about the video and my best friend Stephanie. We LOVED Wham! That’s right – all die hard fans know the band name had an exclamation point. Our bedroom walls were covered with posters. We had calendars, books, and pins. Stephanie had the VCR tapes – both Wham! The Video and Wham! Foreign Skies (about their tour in China). We watched those tapes almost every weekend, memorizing the dance steps and acting out the videos in our living rooms. “Last Christmas” takes me back to being 12, laughing with my best friend, without any cares beyond what we would wear to the dance on Friday night. Each year, it’s a race between us as to who will hear this song on the radio first and call the other one. Both of us own the song in multiple formats. It doesn’t matter. Wham! on the radio is what matters. And we both agree this song is best in the original format, and should never, EVER, be recorded again by anyone else.

Some Children See Him – performed by James Taylor

Written by Alfred Burt with lyrics by Whila Hutson, this gem has been recorded by many but I love this version, arranged by Dave Grusin. You may not think you know of Alfred Burt. I learned about him in high school when our choir sang some of the Alfred Burt Carols for our Christmas concert. The Nat King Cole recording of “Caroling, Caroling?” That’s an Alfred Burt song. But I like this one because it reminds us we all see the Divine in our image. Black, white, bronzed and brown, almond eyed – all are loved and all are precious. After all, …tis love that’s born tonight!

December – Kenny Loggins

Five years ago, I may have selected “Celebrate Me Home” as my favorite Kenny Loggins holiday song but then I found this one. For many, the holidays are a mixture of heartache and happiness and this song expresses both. In 2011, my family spent the Christmas holiday at my sister Mary Jane’s bedside in a local Hospice. I drove home every night sobbing to this song. “Only in December, are hearts so full, or feel more alone.” Mary Jane loved Christmas, and now when I sing the final words I sing them as a promise to her. “I still believe in magic. I still believe in miracles. I still believe in Christmas. I still believe in love.”

How about you? I know I’ve left plenty off my list. Add your favorites below!

30 Days of Thanks Day 22 – Stephanie

I have delayed writing about Stephanie for weeks. People have begun to ask when I’m going to write about her. The truth is – I have no shortage of good things to say about her and why I’m thankful for our friendship. The challenge is trying to make my post succinct while conveying everything in my heart. I’m sure I’ll fail but here goes.

Partners in cute
Trying on hats at the Saratoga Race Track.

It is difficult to write about my relationship with Steph in a manner which adequately describes how important she is to me. She is my bestest best friend. She is the Elphaba to my Glinda; the Pooh to my Christopher Robin; the Thelma to my Louise. We finish each others sentences when we tell stories. My iPod “Steph tunes” playlist contains 311 songs. Steph is my soul mate – not in a romantic way but in a way that makes me feel complete when I am with her. I was blessed with five amazing sisters and was offered the opportunity to chose another – Steph is the sister I got to pick for myself. My father affectionately calls her “number seven.”

I have no memory of life before Steph. We met when I was three and she was four (she likes to brag about being older even if it’s only ten months). Our sisters were counselors at the summer playground program we attended. We were in the same kindergarten class. I remember putting my mat on the floor next to her’s for nap time. Several of my first grade school reports indicate I spent too much time engaged in conversation with Steph when I ought to have been paying attention. The school district tried separating us in future years but they never kept us from socializing.

As teenagers we sat next to each other in orchestra and chorus. Steph was in the drum line ahead of me in summer band and would carry my uniform and hat box as we loaded up the buses. Many times in high school my mother would ask what on earth the two of us could possibly discuss requiring hours on the phone after we had just seen each other all day at school. Boys. We talked about boys. And music. And Wham! And boys. And clothes. And boys. And hair. And New Kids on the Block. And boys.

Selfie
Trying to take a selfie with my new phone and laughing too hard to see – fifth time’s a charm!

Most nights during the summer were spent together at one of our houses. Steph lived two blocks down the street from me. We would decide where we would sleep and she would leave her house at the same time I left mine to walk towards each other. We would meet in the middle and she would help me carry my pillow and sleeping bag the rest of the way if we were headed to her house.

When I decided to be an exchange student I dreaded having to tell her I would be gone for our senior year. Steph claims she never forgave me, but the truth is I think she knew I had to get out of Bainbridge. Aside from my family, she is the only person I called from Australia. This was before the age of cell phones, email and Facebook. Calls required planning and coordination. I would get out of bed at 3:30 AM to catch her at a convenient time. Steph laughed at my “accent” and I smiled so hard my cheeks hurt.

Cookies
Steph and I preparing for the holidays.

Our life paths have been very different but no matter what happens in our respective worlds, I know I can turn to her for anything. We used to talk every day before texting and email. Now we only talk three or four times a week but not a day goes by without a series of messages between us.

Steph was my travel companion for over a decade for my Ms. Wheelchair America volunteer work. Not only did she make sure I was up and ready on time each day, she helped with any task with a positive attitude and level head. Steph almost always has a smile on her face. Her positivity and her ability to make the most of any situation are just two of the reasons I love her so.

MWA volunteers
Steph and I at Ms. Wheelchair America in 2011.

In 2007 we decided we needed to go away for fun, not just Ms. Wheelchair America. Thus, Stephanie and Denise Wicked in New York (SADWIN) was born. Our SADWIN weekends involve Broadway musicals, parades, custom t-shirts and way too much walking – at least, Steph always claims it’s too much walking. I don’t know why she complains – most of the time she’s riding on the back of my wheelchair. Strangers look and laugh at us when she’s on the back of my chair, which always makes us wonder if they’ve never seen best friends hopping a ride before. Apparently, even though it’s normal behavior in our world, most everyone else finds it unique. We make friends wherever we go, and as we often say, “Who has more fun than us?!” She is my partner in cute.

SADWIN 2007
Steph and I for the first SADWIN weekend – when we had to buy pashminas on the street to fit in.

Steph knows everything about me, including my attitudes towards my disability. She is one of the few people who has seen the tears and anger, the frustration and the hurt I am too scared to admit to the world. She always listens without judgement and understands my need to occasionally say “This sucks!” Steph knows I never stay in the self-pity mode for long and she is a safe place to be vulnerable. She challenges me to be honest with myself, even when I don’t want to be. Steph meets me wherever I am emotionally without qualifications or demands.

SADWIN 2010
SADWIN 2010

The two of us often say everyone deserves a Dee or a Stephie as a friend – but neither of us is willing to share. I am aware of what a gift her friendship is and I am grateful every day to have her love in my life. Thank you Steph for being my rock, for making me laugh until I cry, for understanding sometimes we just need someone to help us feel sad when we can’t fix things, for accepting me at my worst, for forgiving my selfishness and encouraging me to be my best. My world is full and complete because you are a part of it. For Good.