My Go-To Tunes: Remembering George

As a teenager, I loved the pop group Wham! Their posters served as wallpaper in my bedroom. Their songs were the soundtrack to my life. I had to buy another copy of the Make it Big cassette, even though I had the record, because the first tape broke. And when CDs came on the market, I bought it on CD too. My best friend Stephanie had the VCR tape of Wham! in China. We watched it so often I can still quote sections of it verbatim. We knew all the dances from the music videos, and performed them in our living rooms when the songs came on the radio. I performed George Michael’s parts and sang while Stephanie took over Andrew Ridgeley’s moves.

When Wham! broke up, Stephanie and I cried. We were 13 and brokenhearted. It was the end of the world as we knew it. George and Andy were moving on to other ventures. We were devastated. Our moms shook their heads. My dad muttered something like, “Boy crazy girls,” while making a face showing his lack of understanding. Clearly this was the worst thing that could happen in a young girl’s life!

Thirty years later, Stephanie and I were devastated once again when we learned of George Michael’s death on Christmas 2016. We sat on the phone that night in stunned disbelief while listening to “Last Christmas” on repeat and reminiscing about our teenage antics.

This past Christmas, Stephanie and I went to the movies together for the first time in more than twenty years. It took George to get us back there. We went to see Last Christmas, the film inspired by George’s song of the same name. That’s right – the woman who mostly shuns romantic comedies willingly sat through an hour and a half of saccharine schmaltz with her best friend because of George Micheal and Wham! It’s far from the most illogical thing I’ve ever done because of a boy. And the popcorn was AMAZING!

Since watching the movie, I’ve been listening to George’s music while driving. I’ve rediscovered songs I always loved but haven’t heard recently. This morning the song “Praying for Time” came on as I took the exit for my job. I sat listening, really listening, to the lyrics and realized this song is just as timely now as it was when it was first released on Listen Without Prejudice in 1990. If you haven’t listened to it recently, and even if you have, give it another listen. I was particularly struck by the bridge, which seems appropriate in today’s political climate.

And it’s hard to love, there’s so much to hate
Hanging on to hope
When there is no hope to speak of
And the wounded skies above say it’s much, much too late
Well, maybe we should all be praying for time

Praying for Time

Lyrics and Music by George Michael

These are the days of the open hand
They will not be the last
Look around now
These are the days of the beggars and the choosers
 
This is the year of the hungry man
Whose place is in the past
Hand in hand with ignorance
And legitimate excuses
 
The rich declare themselves poor
And most of us are not sure
If we have too much
But we’ll take our chances
‘Cause God’s stopped keeping score
 
I guess somewhere along the way
He must have let us all out to play
Turned his back and all God’s children
Crept out the back door
 
And it’s hard to love, there’s so much to hate
Hanging on to hope
When there is no hope to speak of
And the wounded skies above say it’s much, much too late
Well, maybe we should all be praying for time
 
These are the days of the empty hand
Oh, you hold on to what you can
And charity is a coat you wear twice a year
This is the year of the guilty man
Your television takes a stand
And you find that what was over there is over here
 
So you scream from behind your door
Say, “What’s mine is mine and not yours”
I may have too much but I’ll take my chances
‘Cause God’s stopped keeping score
 
And you cling to the things they sold you
Did you cover your eyes when they told you
That he can’t come back
‘Cause he has no children to come back for
 
It’s hard to love, there’s so much to hate
Hanging on to hope when there is no hope to speak of
And the wounded skies above say it’s much too late
So maybe we should all be praying for time
 
 
A live version, recorded at the Royal Albert Hall, London on the Symphonica Tour, is also worth watching in my opinion.
 
 
 
Math symbols and equations written in chalk on a chalkboard.

Living Without Pee Math

Some of you may remember I had surgery last year in April. The surgery was for placement of a suprapubic catheter tube (SPTube) for urination. The decision to have the surgery put an end to me having to practice “pee math.” Those of you unfamiliar with that term may want to check out this post.

I shared my initial thoughts after surgery in this post. I wrote it just six weeks post-surgery and I was still figuring out what it meant to live with the ability to consume unlimited amounts of fluid at any time. Now that I’ve had eighteen months to experience the freedom of being able to “go” anywhere, I have a few more observations.

Never underestimate the importance of peer support!

I was fortunate to have access to peers at every step of the way who were using SPTubes. When I was doing research and preparing for surgery, my friend Emily shared information about the supplies she uses every day. My friend Autumn, who got her SPTube just a few months before me, talked me through questions about recovery and hygiene. And thanks to social media, I found a group of SPTube users on Facebook. They were all generous with knowledge, tips and tricks. I would have been much more anxious without their help and reassurance.

“Accessible restrooms” are not always user-friendly.

I know, I should have known this. I’ve been using a wheelchair since 1994. But, I didn’t use public restrooms on a regular basis for more than a decade. So I forgot how bathrooms can comply with accessibility building codes but not be easy to use. Stall doors that don’t swing shut easily or don’t have an interior pull handle allowing a person to pull them shut; sinks which are set back too far for my short arms to reach the controls; doors which are too heavy for me to pull open – I could go on. These barriers are just some of the reasons I starting reminding myself to….

Take your phone with you!

It only took one instance of being stuck inside a public restroom without any way to call for help for me to grab my phone each and every time I head to the toilet. Usually all it takes is a text to a friend and help is on the way. However, I have had to call establishments and say, “Hi, my name is Denise and I’m stuck in your ladies room.” These calls are never as fun in the moment as I make them out to be in the retelling. There is a simple fix to this. According to the Americans with Disabilities Act, the law where I live in the United States, interior doors should not require more than 5 pounds of pull force pressure to open. I do my best to tell establishments about this law. Now you can do it too.

Why did I wait so long?

I spent two decades becoming an expert on pee math, dehydrating myself and restricting fluid on a regular basis. Now that I have spent eighteen months with my SPTube, I realize how foolish I was for not getting it sooner. One reason I did not get my SPTube sooner is none of my medical doctors encouraged me to consider alternatives. My doctors knew of my routine and never told me about options like the SPTube. Since my surgery, I have asked my doctors why they never recommended I pursue a SPTube. Sadly, most replied they didn’t recommend it because I was not experiencing any medical issues like excessive urinary tract infections or kidney trouble.

What I did experience before my SPTube was reduced quality of life. I enjoyed time with friends, but I was never free from worry about when I would get to go home and use the toilet. I had fun with family, but I always counted time until I could begin consuming liquid at parties. I was never able to drink as much as I wanted, when I wanted.

Now, I can drink as many cups of tea as I want to in the afternoon. I can have an extra cup of coffee in the morning. I can drink the water at a restaurant and still eat the soup for lunch without worrying about if that choice means I have to skip liquid for the rest of the day until I get home. My skin, nails and hair look healthier. My lips aren’t as cracked.

My days of pee math are gone. These days, when I do math I am calculating the quality of life benefits that come with additional choices and independence.

What Happened to Dee?

Colored leaves float on a river under red and orange trees on the riverbank.

It is fall again in northeast New York. It has been almost a year since I’ve posted anything on this blog. During those eleven months, I have been coming to terms with my diagnosis of depression and what it means in my life; learning how to drive my new van with high tech hand controls (FINALLY!); working and advocating to save the home care program that keeps me independent in my home; having and recuperating from major surgery; and trying to figure out what happens next.

Did you notice there was hardly any mention of writing in there? I have not written as much as I hoped to this year. In fact, other than the pieces I have written for my monthly memoir writer’s group and the essay I’m working on for this year’s Brava!I have not written anything outside of work other than social media posts and grocery lists.

Rather than be upset about my lack of writing, I have chosen to cut myself some slack. This is not my normal reaction to failing to meet a goal, and some might say it is a positive step for me.

Now, things are starting to come together. I am healed from surgery and have been cleared to return to work next week. I feel the best physically and mentally that I have felt in four years. I am driving again and embracing the privilege of independent mobility and the extra time it gives me.

I do plan to return to writing and blogging. In fact, I am excited to give DeeScribes an overdue update. When I started sharing my words here in 2014, I lacked a direction and was just trying to get practice at pressing “publish.” I have given considerable thought to what I want from my writing, and where I hope to take things.

Thank you for your patience as I took the time to work on my mental and physical health. I hope you will stick around to see what is next.

BraVa! 2018 – Playtex 8267

I was honored once again to have a piece selected for the 4th Annual BraVa! This event benefits the YWCA of the Greater Capital Region. It is a fundraiser that seeks to provide new bras to women and girls that live at YWCA-GCR and those in need in the Greater Capital Region of New York. As described on the YWCA website, the event features writers from around the region and beyond who read jury-selected poems and essays or perform songs and monologues on the subject of brassieres in their lives.

Once again, it was an inspiring and uplifting (pun intended) evening. The audience laughed and some of us cried. The poems and memoirs were poignant and truthful. I left the event grateful for the opportunity to witness these stories, ready to write more of my own.

I haven’t written much at all these days. I wasn’t even sure I would write something for BraVa! this year. I spent three days in the hospital in mid-October and was released just 10 hours before the submission deadline for the event. At 7:10 pm, four hours and fifty minutes before the deadline, I decided to write this piece. I read it to my mother on the phone before I hit “submit.” On Friday, I read it for the audience at BraVa!

If you are shopping this holiday season, consider buying a new bra for your local women’s shelter. Everyone needs support now and then.

A woman wearing a red cape is seated in a wheelchair in front of a podium. She is reading into a microphone. There is an indoor circular clothesline with various color bras hanging on it on the other side of the podium.
Photo courtesy of Daquetta Jones

Playtex 8267

Whenever I am shopping in the lingerie section of a store selling Playtex bras – the ones sold in the plastic containers with the blue or pink cardboard – I always look for model number 8267, the 18 Hour Original Comfort Strap Wirefree Bra. 34 C is apparently a popular size because rarely do the stores have it in stock. If I am lucky enough to stumble upon the coveted size and model, I whip out my phone and call my mother.

“Mom – you still wearing a 34C? It’s the 18 Hour one, right? I’m in Boscov’s shopping for bras and I looked at the Playtex ones for you. They only have it in white, is that alright?”

The call is really just to let her know to expect a new bra in the mail. Of course my mother, Caroline or Dolly as she is known to everyone, is still wearing the iconic Playtex 18 Hour Bra! It’s the only style of bra I have ever seen her wear in my 45 years of life. At 91 years old, Dolly is not about to change something as critical as her trademark bra.

Dolly’s bra, like her, is no nonsense and genuine. It is functional without needless frills. It gets the job done in a superior manner without calling attention to its work and craftsmanship. No excess lace or color is necessary for her brassieres. Although the model now comes in a variety of colors, you won’t see Dolly wearing any colors other than white or natural beige.

As a child, I noticed the other neighbors only put sheets and towels on their backyard clotheslines. However, Dolly’s underwear and lingerie were displayed for all to see as they dried in the breeze. Of course, so were mine when I lived at home since I was physically unable to do my own laundry. This didn’t seem odd to me because Dolly never used her clothes dryer then and only rarely uses it now. Two days before I left home to be an exchange student to Australia at age 16, I posed for a photo in the backyard with my parents. Dolly sent the photo halfway around the world to me and I promptly put it on the dresser in my borrowed room, in a borrowed frame my host brother gave me. Not until he asked me why we had posed before laundry did I realize Dolly’s five bras were waving in the wind behind our smiling heads. The photo spent the entire year with me, on display in each host family house – me, my parents and Dolly’s bras. Today it is on the first page of my 4 photo albums from that magical year Down Under.

A few weeks ago, I told my mother I might write this essay about her and her bras. I wanted to know if she would be comfortable with me sharing what some would consider personal information with strangers.

“Well, I suppose if anyone can find a way to make my dull white bras interesting, you could. Remember, I wear the 18 Hour – not the Cross Your Heart.”

Was she telling me I was shirking in my bra shopping? Had I made a mistake and accidentally purchased the wrong style? I went online to verify I had purchased the right bra and made a shocking discovery. In 2015, Playtex had a rebranding and changed the model number and name of their iconic bra. It is now model number 4693B, known as the 18 Hour Ultimate Shoulder Comfort Wirefree Bra. I called her again, wanting to make sure she had this important update and also to verify she had sufficient quantity. Apparently I had been neglectful in my duties.

“I’ll still wear it! I have 4 right now so I’m good. I rotate them in my drawer after I do the laundry so I don’t keep wearing the same one all the time. That way they last longer.”

Even though it has been years since I’ve sent a new bra to my mother, she is still treasuring the past gifts I’ve given her; taking care to keep them in good condition for a little longer until life permits me the time and energy to resume my regular lingerie shopping.

Simple life lessons from Dolly. Who knew so much could come from a bra?

To This Year’s Class of MWA

Two white women wearing white t-shirts with red lettering that reads "Ms. Wheelchair America." The woman on left has short brown hair and is leaning down next to the woman on the right who is wearing glasses and is seated in a wheelchair. They are on a walkway over a river.Facebook showed me this photo this morning and reminded me that seven years ago, my best friend and I were having fun in Grand Rapids, Michigan, during the week of the 2011 Ms. Wheelchair America (MWA) pageant. It was a timely reminder, since the contestants are gathered in Grand Rapids again right now. They are getting ready for the second day of judging as I type this.

MWA has been a part of my life since I was Ms. Wheelchair NY 2001. As a state titleholder seventeen years ago, I could not predict all the ways MWA would impact my life. I made some of my best friends at my first national pageant as a participant in MWA. Maintaining a state program; mentoring state titleholders; serving on the MWA Board of Directors; traveling to other state pageants – all adventures gained by my volunteer involvement and things that likely would not have happened if I had been crowned Ms. Wheelchair America (I was first runner-up).

Most important to me is the peer support group I have cultivated through my involvement with MWA. In my opinion, this is the best aspect of the MWA organization. At any moment, I know I can reach out to women who have experiences similar to mine. They are creative, resourceful, smart, and generous. If I have a problem or quandary, they will have insight and will offer it freely. If I need support or understanding, they are empathetic and encouraging. This sisterhood is a valuable source of energy for me when I am feeling bogged down by the continual need to advocate for access in a world which is often not designed for our needs.

This year’s titleholders are waking up to a new day. It is mid-week so they still have energy. I hope they realize they are participating in a week which will change them. To all of them, I say best of luck and enjoy this opportunity. This week is not about who goes home with the crown on Sunday. It’s about who you connect with on the way and how you put that into practice in your everyday life when you go back home to your individual states.