Everyone Loves a Snow Day

I went to bed last night thinking the predicted storm might not be so bad for us. The meteorologists were calling for heavy wet snow for the nearby Catskill, Adirondack and Berkshire mountains – over a foot. But as of 10 PM, we were only supposed to get 2-5 inches.

Here’s what it looked like at 8 AM. When my Personal Assistant left, the snow was over her shoes. Side note – she’s a gem for driving here at 5:15 AM to get me out of bed and showered on days like this. She never calls out due to snow.

My office was closed today because the building lost power due to the storm. Even though it’s been 23 years since my last days as a full-time student, I am young enough to appreciate a snow day. Especially one I did not expect!

So far, I have been fabulously lazy. For the past 4 hours all I’ve done is crochet while binge-watching episodes of Bondi Rescue on Netflix. Yes, I know, it’s crap reality TV. But it’s sunshine, blue water and Australian (mostly shirtless) life guards. When this is the current view outside, I’ll take mindless sun and surf any way I can get it!

Winter scene of heavy snow on an apartment building with cars parked in a lot.
That’s my van Clyde buried under the snow.

How about you? What’s your favorite snow day activity?

Silhouette figures of a male and female with their legs crossed and their hands in front of their crotch as if they have to urinate.

The Freedom to Go

Quick quiz – how much fluid have you consumed today? How many times have you urinated? Were you able to do it on your own or did you require assistance?

Most nondisabled people don’t spend too much time thinking about going to the bathroom. At least, it seems that way to me based on observations of friends and family. I don’t have that luxury.

If you are a friend of mine or read my blog regularly, you are probably familiar with the term “pee math.” Pee math refers to the daily calculation of fluid intake, multiplied over time, divided by the availability of a Personal Assistant (PA) to help me urinate. Those of us who require assistance from someone else to go to the bathroom become experts on pee math.

Expertise in pee math requires more than a knowledge of fluid ounces, minutes and hours. Like any equation, there are variables to consider. I must calculate and plan when and for how long I will have access to a PA to help me. I have to factor the other tasks I must have my PA complete in my allotted hours of care, and where I will be throughout the day.

Since I broke my leg in January 2016, I have not been able to bear weight on it. I require the use of a special transfer board and bariatric bedside commode to manage bowel and bladder function. I wrote about it in this post when I described coming home from the rehabilitation hospital. There are three places I can urinate – my house, my office, and my sister Caroline’s house.

Three places. Think about that. How would your life be different if you could only go to the bathroom in three places?

Now, add in the complication of requiring assistance from another person to make this happen. What changes do you need to make in your routine? How much fluid can you consume? What happens if something doesn’t agree with you and you need to go NOW but you aren’t at home, work or my sister’s house?

I have been engaged in a graduate level course in pee math for the past two years. Everything is planned – what I drink or don’t drink; when I drink; what I wear (skirts are easier for some PAs than pants); how I schedule life.

I don’t travel as much as before the fracture and when I do, I have to take a bulky commode with me. Yes, when my best friend and I drove six hours to Erie, Pennsylvania, this summer for Ms. Wheelchair America, I rode in the back of my van with a commode across my feet and legs. Every time we stopped, we had to unload it so I could get out of the van. This resulted in some very curious looks when we stopped at the casino for lunch and Steph sat on the closed toilet seat in the access aisle next to the van while I fished in my pocketbook for lipstick. I wish I had a photo of that experience to add to this post.

A few months ago I made a decision to pursue an alternate means of urination. I began to research two options – the suprapubic catheter (SPC) and the Mitrofanoff appendicovesicostomy, commonly referred to as “Mitro.” After discussions with multiple doctors and friends who use SPCs and Mitros I think I’ve made a decision. There are still some medical tests to complete, but with any luck I will be doing something later this spring to make it easier for me to “go.”

Two of my friends have shared their journeys down this path on their blogs and social media. I’ve decided to do the same because I wish I knew more about my options at a younger age. For decades, my life has been at the mercy of pee math. This is only happening now because I brought up the topic and suggested the alternatives to my doctors. Nobody on my medical team encouraged me to think about it even though I have been complaining for years about how infrequently I urinate and how my inability to access a toilet is limiting my life. Maybe if I had a history of urinary tract infections or bladder complications, that would be different.

For now, I’m dreaming about the day I can have as many afternoon cups of tea as I want. What will it be like when I am no longer limited by how much fluid my bladder can contain? How will life change when I am free to go? We’ll see!

BraVa! 2017: What is Pretty?

Once again last year, I participated in BraVa! This event, a fundraiser for the YWCA of the Greater Capital Region, is described by creator Marion Roach Smith as “a night of memoir about the place of bras in our life.” Admission to the event includes a new bra. The bras are given to women who are in need.

I am honored to have participated in BraVa! for three years. When the call for submissions for the 2017 event came out last September, I wasn’t planning to write anything. Life was too busy. I was moving at the end of October, and I had no time to write. Plus, I didn’t know if I had another bra story in me. I had already written two (this one and this one) and couldn’t think of something new.

But, the day of the submission deadline I decided I had to at least try. I sat at my computer thinking of everything that had happened since the start of 2016 – the femur fracture, rehabilitation, moving out of my apartment, facing another imminent move into a new apartment, not being able to independently drive, trying to maintain full-time employment and volunteer activities. I reminded myself that I had set a goal to submit a piece of writing somewhere in 2017, and how I had not yet done so.

I started to write at 6:38 PM. At 10:03 PM I hit “submit” and uploaded my essay. I had no hope of being selected to read, but was proud that I sent it in. When I received the notice it had been chosen, I was honestly surprised and of course honored.

I never considered that I might be developing a local reputation as a woman who writes about bras until I attended TEDxAlbany in December. One of the speakers, Jené Luciani, spoke about how to find the perfect bra. (You can learn more about her talk here.) As we gathered back in the auditorium after lunch, a woman came up to me and told me she recognized me from BraVa! She then asked if I was going to be speaking about bras! We laughed as I explained I was just a member of the audience this time.

Since that encounter, three other strangers have approached me about my BraVa! readings. As someone who is routinely approached by strangers because of my disability, it is refreshing to have people stop me for a different reason. Perhaps, I’m OK with being known as the “bra lady” after all!

Here is the piece I read in November for BraVa! I hope the next time you are shopping for a new bra for yourself (or someone you love), you’ll consider buying an extra bra for a local women’s shelter. Everyone can use support now and then.

Umbrella clothesline full of bras in assorted sizes and colors.

What is Pretty?

I was two hours late for work on my first day back after an unexpected five day absence due to an intense sinus infection. An emergency wheelchair repair delayed my arrival, but I was determined to make it through the day now that I was finally at the office.

So when I began to get a strange sensation “down there” around noon I ignored it. I had been so wiped out by the sinus infection, I completely forgot my period was due.

I had to go home to change before the situation became even uglier. I called one of my Personal Assistants to help. We arrived home at the same time, and I urgently threw my cape aside as I rushed to the commode.

But, even when the need is great, one should not rush a transfer from wheelchair to commode. Particularly when the Personal Assistant who is working is incapable of following verbal directions. She didn’t listen to my commands. She dropped me.

SNAP! I heard the crack of the splintering bone as my butt crashed down on my ankle..

Imagine the scene – me, half naked on the floor by the commode, bleeding and still needing to pee, knee blown up the size of a basketball, a whimpering Personal Assistant trying too late to make things better. And now in walks the police officer, the first to respond to the 9-1-1 call.

It wasn’t pretty.

It definitely wasn’t pretty as the paramedics moved me to a backboard then lifted me to a stretcher. It turned downright ugly as I swore nonstop in agony while they secured me in the rig. We don’t need to talk about the ambulance ride to the hospital.

Two days later, the surgeon reassembled my fractured femur with, in his words, “a plate, screws, chicken wire and bubble gum.” I asked him to point out the bubble gum on the x-ray, and was told sometimes that dissolves before imaging. The thirteen screws and eight inch plate that I will carry for the rest of my life are clearly visible.

After two weeks in a hospital bed, it was time for me to get dressed and head to Sunnyview Rehabilitation Hospital for intensive physical and occupational therapy. I was the least pretty I had ever felt in my life. I needed a shower, a razor, a manicure, and a good pair of tweezers.

My friend Sally brought some clothes, honoring my request for loose tops and comfortable pants. As she removed the items from a bag, I saw a flash of red.

I know you aren’t feeling like yourself, but I figured you’d want a pretty bra.

Sally, bless her heart, knows I don’t wear boring white bras even on the worst of days. She understands my need for color, the satisfaction I gain from knowing underneath my sensible, sexless fleece turtleneck is a scrap of satin that gives support to so much more than my breasts. Sally packed six colorful bras for me – and a tan one because she is practical after all.

I worked harder than I ever had at any physical task for those two weeks at Sunnyview. Three hours of exercise every day, enduring the most intense orthopedic pain I’ve ever experienced. It was not an attractive time for me. I was angry, bitter, and resentful. I have never been an exercise person, and now I was breaking a sweat – in the morning AND afternoon! Thank goodness I had all of those bras because there was no way I was wearing any of them for more than one day at a time.

I continued therapy for months at home and as an outpatient, learning new ways to perform all of my activities of daily living. I will never recover some of the function I had before the femur fracture. I now need more assistance to complete tasks I used to do independently. So much in life has changed because of that fall twenty months ago.

One thing has not changed. I still like, and wear, pretty bras. I don’t wear them for a man or a woman. I’m not trying to impress or attract anyone with my colorful lingerie.

I wear them to remind myself that even when life hands me the most repulsive challenges, causing me to grimace daily and feel unlovable and homely, I am beautiful on the inside, through it all. And I deserve every color of the rainbow.

My Go-To Tunes – Christmas Volume 3

I started this post last year a few days before my father died. It was originally scheduled to post the day after his death. That obviously didn’t happen! I forgot I had it hidden in my drafts until I started searching for something else. Since it was already mostly done, I decided to check the links and share it with all of you. In case you missed volumes 1 and 2 of My Go-To-Tunes Christmas edition, you can find them by clicking on the following links:

My Go-To Tunes – Christmas Volume 1

My Go-To Tunes – Christmas Volume 2

Once again, I share these tunes in no particular order. For “classic” songs not performed by the songwriter, I have indicated the artist.

Carol of the Bells – George Winston

This Ukrainian carol, composed by Mykola Leontovych with lyrics by Peter J. Wilhousky, is based on a Ukrainian folk chant. It has been recorded by artists in every genre – jazz, rock, a capella. I have always loved George Winston’s album December and this version makes me think of trying to play my own version on the piano. I sounded NOTHING like this!

Wonderful Christmastime – Paul McCartney

This is another one of those songs which is on my annual list because of the video. When I was a teenager, watching music videos with my best friend Stephanie, this song would get regular play in the month of December. I am sure our parents did not appreciate our singing the chorus at 1 AM in the living room, but it was such a singable tune!

Angels We Have Heard On High – the Gardiner Sisters

There are so many versions of this melodic song. I chose this one because one of my favorite Christmas traditions as a child was singing carols with my sisters. We would harmonize at church, in the car on the drive to Noni’s house, or at home around the piano.

This carol is based on a French tune and is inspired by the Gospel of Luke, when angels come to announce the birth of Jesus to the shepherds. This carol is also the reason many high school choir singers learn  to pronounce “in Excelsis Deo.”

Sleigh Ride – Boston Pops

If you’re going to listen to this song, you have to listen to it played by the Boston Pops! After all, it was written just for them by Leroy Anderson. Granted, it was written in the middle of a heatwave in August, 1946. However, the orchestration perfectly creates the illusion of a carriage being pulled through snow. And it has some really fun percussion parts, plus that trumpet glissando whinny at the end! I couldn’t find a video of Arthur Fiedler conducting the Pops, but John Williams isn’t a bad substitute.

Believe – Josh Groban

I was so excited when Josh released his Christmas album, Noel, because I have always said he has a voice made for holiday songs. This Grammy-winning song (Best Song Written for a Motion Picture, Television or Other Visual Media, 2006) was written by Glen Ballard and Alan Silvestri and appeared in the film The Polar Express. I love the message of finding lost magic on Christmas day. How would Christmas be different if we all believed in magic, even just for one day?

Santa Clause is Coming to Town – Fred Astaire

I loved this movie as a child. It had everything in it – Santa Clause, a love story, an evil villain (the Burgermeister), good music and a penguin! Remember Topper the penguin?

Who am I kidding? I still love this movie. I watch it every year. If you haven’t watched it yet, I encourage you to do so. After you finish reading this post.

The best part of the movie is this last bit at the end. When the postman, Special Delivery or S.D. Kluger, voiced by Fred Astaire, explains Santa’s true meaning, it makes me feel hopeful. Santa takes some of our unhappiness away, and “if we all learned to give of ourselves, our talents, our hearts, maybe there really would be peace on earth.”

I’ll be Home for Christmas – Bing Crosby

Bing recorded this song, which was written by Kim Gannon and Walter Kent, in 1943. The song is written from the perspective of a soldier stationed overseas during World War II. Until I was away from home as an exchange student in Australia for the Christmas of 1990, I never appreciated the melancholy of the song. That year my father sent me a Christmas card – one of only two cards he would ever mail me in his life. His message, though brief, has stayed with me for many years.

“Although we may not be together for this holiday, we will always be in each others hearts and dreams.”

George and Andrew – The Boy Least Likely

I found this song last year. If you have read my prior Christmas music posts, you know I loved Wham! My teenage bedroom was plastered with posters of George Michael and Andrew Ridgeley. So, when I found this video from 2010 I laughed and laughed. If you have never seen a Wham! music video, you may not appreciate how clever this is. Go to YouTube and watch “Wake Me Up Before You Go-Go” or “Last Christmas” to get the full effect.

Just a few weeks after my discovery of this pop gem, George Michael died on Christmas day. George’s music is a huge part of the soundtrack of my life, especially every Christmas when Wham! makes a return to the radio. I like having a fun reason to smile about George this Christmas.

I Want a Hippopotamus for Christmas – Gayle Peevey

Gayle Peevey recorded this song in 1953 when she was 10. I don’t know if there are any recordings of me when I was 10, but I guarantee if there are, nobody will be singing along to them 70 years later! Each year when I hear this song for the first time, I laugh remembering the time my niece and I acted it out using Strawberry Shortcake figurines. She probably doesn’t even remember it, but I clearly remember her using my stuffed puppy dog as the hippo. It’s just one of those songs that makes me happy. And some years, I need all the happy I can get.

The 12 Days of Christmas – Straight No Chaser

I know, you’ve read this entire list and you’ve been wondering when I’ll get around to including Straight No Chaser. Wait no more – here you go. We’ve already established I love a cappella groups. If the group includes many handsome men who also happen to be great singers? Bonus!

I’ve been a fan of SNC since this video clip originally went viral back in 2008. I’m one of those fans who goes to their concerts and waits in line for photos and autographs. There are at least 15 SNC videos on my phone, but for this post I selected the original video from 1998 – the one that started it all.

Merry Christmas one and all. May your holiday be filled with joy and peace.

Not Feeling the Need to Write

Today marks the one year anniversary of my father’s death. This is the fourth post I have started to write about him. Although there were probably nuggets of truth in each of them, none felt “right” to share. Some were funny, others were full of grief. Unfortunately, they didn’t express what I wanted to say in a manner which sounded authentic.

Just now I realized why that is the case. I was writing a post about Dad because I felt like it was something I “ought” to do. I was pressuring myself to come up with something new to say about him, to recognize and celebrate him on this day.

But, the reality is I have already written several good posts about him, if I may say so myself. I’ve told stories and shared lessons learned in these posts:

30 Days of Thanks Day 2 – Sam

Gratitude at the Kitchen Table

Seven Secrets of Success from Sam

30 Days of Thanks Day 24 – Sam and Dolly

Happy Father’s Day Sam!

30 Days of Thanks Day 11 – My Favorite Veteran (and Veterans Everywhere)

The Citrus Peeler

Being Number Six

And honestly, I really don’t want to write about Dad today. Sure, I will think about him all day. I’ll call Mom later. Most likely, I’ll get teary if the right song comes on my Spotify playlist.

I don’t want to write about him just because of the day. That doesn’t mean I don’t want to write today.

I want to write every day. I just don’t like being told what I need to write, or feeling like I “should” write something. It’s probably why I have never looked for or accepted a job where my only responsibility is to write.

I inherited that stubbornness from Dad. Maybe that is how I’ll honor him today. I’ll stomp my foot, cross my arms in defiance, and not do something “just because.” When I write about him next, it will be because I want to, because I have something new to say.

Thanks Dad, for teaching me that sometimes it’s OK to just do things my own way.

An older man sits in an old office chair. He is holding his hand next to his mouth, to project his voice as he yells an order. He is wearing a fishing hat an a white cooking apron over a plaid shirt and blue jeans.
Sam, barking orders at a family picnic. Photo – A. Conklin