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.

30 Days of Thanks Day 6: The Pool

Three days each week (work schedule permitting) I drag myself to Sunnyview Rehabilitation Hospital to exercise in the therapeutic pool. I am not really an exercise person. I don’t get an endorphin rush from my exertions. I never feel more energentic after I am in the pool. I do feel warmer, and some days the pool time is the only time of the day my feet are warm. Warm feet always make me less cranky, yet I don’t know that I feel “better.”

But, I feel worse when I don’t go. So I keep going. Does this mean I’m an adult?

Image of a partially wet tile floor under fluorescent lights. There is a blue square painted on the floor and pool equipment around the tiles.

“Um, Denise – I thought you said you were thankful for the pool. This isn’t a photo of a pool”

Oh, but it is! You see, the floor of the Sunnyview Pool is mechanical and lowers into the water. When it is time to get in, everyone stands or sits inside the blue square on the floor. The pool attendant lowers the floor into the water until it is at the desired height. After an hour, everyone gathers inside the square again for the ride back up to the surface.

This morning, the first Monday after we switched to Daylight Savings Time here in New York, I was at the pool before 7 AM. I have proof. Take a close look at the photo.

A lady with brown hair is in a pink sleeveless t-shirt out walking in her wheelchair on a bright sunny day. She has a towel on her lap and gloves on her hands. The text on top of the image reads: “Rethink the way you speak about walking!”

Exercise for Every Body

Last month, I wrote this post in response to an article about walking as a means to improve health and fitness. When I hit “publish” I had no idea what type of reactions, if any, my readers would have. My fellow wheelchair-using readers all said, “Right on!” Or something very similar.

Then, more and more people started asking me about options for physical activity for people with disabilities. I started to provide information when a friend posted this comment on my Facebook page:

Why don’t you research and write your own article on fitness for those with disabilities?

Before long, the idea took hold. Why don’t I do more than just complain? While I am not an expert on physical fitness, in my prior career I did spend time researching and writing about health and wellness for people with disabilities. So, here goes my attempt to tackle this topic. Keep in mind, I am not a person who loves to exercise. In fact, I am pretty much a person who would rather do data entry into an Excel spreadsheet before exercising. And I HATE data entry.

Whenever anyone asks me about fitness for people with disabilities, I start by referring them to the National Center on Health, Physical Activity and Disability (NCHPAD), a “public health practice and resource center on health promotion for people with disability.” NCHPAD works to improve health and wellness for people with disabilities through increased participation in physical and social activities. Their website is a wealth of information and a great resource for people of all ages and abilities.

I really like their campaign How I WalkThe movement aims to rebrand the word ‘walking’ so everyone is included in the many walking initiatives. Through images, like the one below, videos and social media messaging, the campaign hopes to show how walking is an activity for people of all ages and abilities – even those of us who cannot “walk” in the traditional sense of standing on two feet and putting one foot in front of the other.

A lady with brown hair is in a pink sleeveless t-shirt out walking in her wheelchair on a bright sunny day. She has a towel on her lap and gloves on her hands. The text on top of the image reads: “Rethink the way you speak about walking!”

I especially like this campaign because I regularly go for walks in my community. From April to October, as long as the weather allows, I spend at least part of every weekend taking walks on many of the local bike paths and trails. My favorites are the Old Champlain Canal Trail and the Erie Canal. Parks & Trails New York has a great interactive map for people who want to explore the Erie Canal, which stretches across New York State. I enjoy being out in nature, and the trails allow me an accessible opportunity to explore. And while I may not be actively wheeling a manual chair, the simple act of maintaining balance and equilibrium on an uneven surface still requires muscle use. Trust my knees and hips on that!

Photo of a walking shaded walking trail next to a canal. Tall green deciduous trees line both sides of the path.
One of my favorite paths, the Old Champlain Canal Path is mostly accessible.

Sometimes people hear “exercise” and immediately think “gym” or “fitness center.” While I do have many disabled friends who do exercise regularly in fitness centers, that has never really been an option for me. My physicians have discouraged extended land exercise for me, so the benefits of joining a gym do not merit the expense. Instead, with the help of my Personal Assistants (PAs) I perform regular stretching at home and use exercise bands a few times a week.

The one activity my doctors and physical therapists agree is great for me is aqua therapy. Three mornings each week, I go to a local therapeutic pool and complete an exercise routine focused on strength and cardio. I’m not going to lie – I love the pool but I still hate exercise. I go regularly because it reduces pain and makes me feel better to spend three hours each week in warm water. I am privileged to have the income to be able to afford a membership, and PA staff who can accompany and help me. These are obstacles for many of my disabled peers.

Exercise doesn’t need to be organized or expensive though. I have friends who exercise by turning up the radio in their house and dancing to their favorite tunes. Other friends of mine count on their intimate moments with partners to burn some extra energy.

Any movement that gets your blood flowing and heart pumping is better than no movement at all!

30 Days of Thanks Day 15 – Mary Frances

I first wrote about Mary Frances earlier this year. Mary Frances was the woman I was fortunate to share a room with during my stay at Sunnyview Rehabilitation Hospital. Some of my newer readers may not have had a chance to read about her, so today I am recycling this post in honor of the woman I am now proud to call friend.

I met Mary Frances shortly after my arrival at Sunnyview Rehabilitation Hospital on January 27. I was sprawled on my bed, waiting for the next doctor to assess me, counting down the hours until I could take more pain medicine. The nurse was attempting to make my broken leg more comfortable by rearranging the pillows while giving me information about the unit. She looked up as a woman was wheeled into the room saying, “And here’s your roommate, Mary Frances.”

Hello. How are you? Welcome to rehab.

The sonorous voice modulated in pitch and prosody, the syllables elongated – a technique I used to teach my clients when I worked as a speech-language pathologist. Mary Frances sat regally in her institutional chrome wheelchair, feet firmly planted on the foot pedals. Her slightly askew smile lit her face and the twinkle in her eye told me we were definitely going to cause a ruckus together.

My years of employment in a variety of healthcare facilities gave me multiple opportunities to observe the social interactions between patients and their roommates. The right roommate can make or break  your rehabilitation experience. Negative roommates or those who complain nonstop can make recovery more taxing for the people on the other side of the curtain.

Mary Frances was the best roommate I could hope for. She was optimistic, intelligent, determined, and talkative. We bonded quickly as we shared our respective stories. Mary Frances was recuperating from a stroke which had affected both her fine and gross motor skills as well as her speech and language. Like me, she was learning to do everyday tasks a new way.

The two of us connected over the silliest rehab moments – things which were incredibly meaningful to us but perhaps not to an outsider. She was seated on the other side of the curtain the first time my occupational therapist and I attempted to use a slide board to transfer me onto a bedside commode. I can only imagine what we sounded like as we struggled to find the right positions and hand holds. When my session was over, mission successfully accomplished, I saw that same gleam in her eye as she congratulated me.

You peed on the potty like a big girl! 

Each night, we watched Jeopardy! together. Mary Frances didn’t mind me blurting out the answers to questions. A former teacher, she did well on the literature and history questions. She also beat me on most of the pop culture questions, even with her speech delay.

Mary Frances was determined to do her best every day. She challenged herself in her rehabilitation, often working on hand exercises during down time in our room. One afternoon I returned from the therapy gym to find her making faces at herself in a small hand-held mirror. She attempted to excuse herself for what she assumed must look like silly behavior. I laughed at her, and asked to see her speech therapy homework. Thus began our daily routine of extra speech and language assistance. We spoke to Mary France’s speech-language pathologist who agreed extra practice would be wonderful, as long as it reinforced what they were working on in therapy sessions.

Mary Frances wasn’t my client and I knew it was unethical for me to act as her therapist. However, having the opportunity to use my clinical knowledge to help her provided a reminder that I was more than just a patient. At night when we practiced conversation repair, word finding techniques or facial exercises, I was able to escape from my own pain and injury for a brief time. I felt better because I was helping a friend who was making improvements each day.

Patients at Sunnyview are welcome to move independently about the facility as long as they have been cleared by therapy and nursing. Once cleared, you are given a green wrist band to indicate your freedom of movement. Not knowing this rule, I had been wandering the halls for two days before receiving my green tag. Mary Frances received her green tag a couple days later. We would go down to the cafeteria together for real coffee (Starbucks, not the kind they sent to our rooms on the morning trays). If she was too tired to wheel herself down the carpeted hallway, I sat closely alongside her so she could grab my handlebar, giving her a tow with my power wheelchair. Staff laughed at us before they realized they probably shouldn’t encourage this behavior. We ignored their warnings. Although we worked diligently, we both knew how to be non-compliant at times.

Mary Frances was self-conscious about her oral weakness and took steps to eat without drooling her food and beverage down her clothes. A few days before her discharge, we sat in our room eating roasted peanuts. Mary Frances concentrated all her energy on using her weaker hand to pick up the individual nuts and put them in her mouth. I asked Mary Frances if I could write about her and our rehabilitation adventures on my blog. She stilled her hand, swallowed her mouthful, and thoughtfully gave me verbal consent. I thanked her, then made a comment about how well she was doing eating the nuts without drooling.

Survivors adapt. Other people drool. Put that in your blog!

Survivors adapt. Two simple words with a meaning much more complicated and nuanced.

Thank you Mary Frances for helping me adapt to my new normal. Your encouragement and optimistic support made my rehab journey fun, something I never considered as a possibility. I am grateful for your friendship and so happy we have kept in touch. You continue to inspire me with your progress and improvement.


30 Days of Thanks Day 8 – Sunnyview Rehabilitation Hospital

When I was a college student preparing for a career in speech-language pathology, I always hoped for a clinical practicum at Sunnyview Rehabilitation Hospital. This facility, located in Schenectady, New York, a short 15 miles from my school, specializes in physical rehabilitation. As an aspiring rehabilitation professional, I wanted to be where the action was. I wanted to get clinical experience with people who were motivated to work towards a goal, who (unlike me) maybe looked forward to their time in rehabilitation.

*Side note – I know there are writing experts who will say I should spell out “rehabilitation” throughout this post, but all my life I have been calling it “rehab” and to change now would make this post sound not at all like me. Deal. It’s my blog and I can do what I want.

Does anyone else see the irony in me, a person who has always hated her own rehab and physical therapy (PT) and occupational therapy (OT), wanting to work at a facility that specializes in rehab therapy? While it’s true that I usually hate going to my own PT sessions, I have great respect for the professionals who have always tried to get me to maintain my physical function. Just because I despise the pain and torture of contract and release when applied to my own contracted joints doesn’t mean I don’t have admiration for those tasked with helping me preserve mobility and range of motion.

So, when the discharge planner and social worker came to visit me after a week in the hospital, I did not hesitate to tell them I wanted to go to Sunnyview for my rehab. I am well acquainted with the discharge process, and knew I might not be be viewed as a good candidate for intensive rehab. I understood my insurance might not authorize a stay at Sunnyview. But I did not want to go to a nursing home for rehabilitation. If I wanted to regain maximum function, I needed the best and that meant Sunnyview.

Thankfully, there was a bed available on the neuro unit, and insurance said yes. On Thursday, January  28, fifteen days after fracturing my femur and forty minutes after my morning pain pills, I was transported to Sunnyview.

One of the best parts of completing rehab at a rehab hospital is that the staff understands you are there to work. This may seem like an obvious point, but this mindset is not found at nursing homes where the majority of admissions are not high level rehab patients. However, all of the nurses and patient care techs on my unit knew I was there for a reason – to learn new ways of functioning so I could go home. From the first day, I felt everyone was there to help me do my best so I could make progress towards my goal. Everything was designed to give patients like me the best opportunity to perform well during PT,  OT and speech therapy. I did my part, participating in three hours of therapy each day without complaint. Well – I may have complained some. But, I still did everything that was asked of me.

By far, the two people who had the most impact on my successful rehabilitation were Tracey (my primary PT) and Joe (my primary OT). Tracey and Joe took the time to ask me questions about my life, my routines, my goals and my concerns. I was involved as an active participant on my rehab team at every step of the way. As a woman who has had to convince multiple medical providers I am indeed an expert on my body, I was prepared to have clashes with the rehab staff. Those clashes never happened with Joe and Tracey. They acknowledged my history with disability and encouraged me to try what felt right for me while still pushing me to explore new options.

My primary goal was to be able to transfer in/out of my wheelchair without needing a mechanical lift and without putting weight on my injured leg. Tracey and I tried different transfer boards, wooden and plastic boards designed to help a person smoothly slide from one surface to another. When I suggested the Beasy Board, which would ultimately become my new mode of transferring, Tracey didn’t question me. She just hopped up and went to find one so we could practice. After the first transfer we knew we were onto something good, so Tracey called Joe over to our mat in the gym to watch. The patient in me was excited to have found a good option. The rehab professional in me felt like I was once again part of an interdisciplinary team, only this time focused on me.

Because they knew I would need to train my PAs in this new method of transferring, Joe and Tracey packed my schedule with opportunities to work with other PTs and OTs. Each day, I had the opportunity to practice teaching at least 2 new people my new transfer technique. This prepared me well for the transition home, when I had to teach my home care team and friends how to help me.

After 2 weeks, I was ready for discharge. I had progressed as far as I was going to in the hospital setting and it was time for me to tackle the next step – my own home environment. I left Sunnyview on February 10, nervous about the transition but ready to sleep in my own bed. It was not the end of my rehabilitation, simply the end of the inpatient journey.

I am grateful to all the staff at Sunnyview who helped me make the transition from hospital to home. The nursing staff of 2 West treated me with dignity, compassion and kindness. Joe, Tracey and the entire therapy staff pushed me to do more than I thought I was capable of doing and encouraged me to keep working when I felt I didn’t have any energy left. I know I am where I am today because of their care and expertise.