What If?

I am having outpatient surgery next week. The procedure is fairly quick, I’m told. I do not need to go under general anesthesia. I will be sedated, but not intubated.

Given my reduced respiratory function, any surgery has risks. The last time I went in for “routine” outpatient surgery, I ended up spending ten days in the hospital – four of them in a coma in the Intensive Care Unit! I do not rush into surgery without heavily weighing pros and cons.

This time, I have decided the pros (being able to maintain adequate hydration without worrying about pee math) outweigh the potential harm. I am moving forward with my plan for a suprapubic catheter, which I first discussed in this post.

In preparation for surgery, I am updating my advance directives. What – you don’t know many forty-four year old women with advance directives?

I first considered writing my advance directives for my friends and family when I was starting my career as a speech-language pathologist in nursing homes and geriatric rehabilitation facilities. Each day, I saw families struggle with what they thought their loved ones would want to have happen in their medical care. Too often, discussions about important matters such as artificial nutrition and ventilation did not happen until a person faced a life-changing event such as a stroke or head injury.

Living with what some medical providers have called a “terminal illness,” and being described as a person who “requires maximum assistance with all tasks,” means that some people look at the surface of my life and assume I have a poor quality of life. They see a disabled woman using a wheelchair who cannot function without her Personal Assistance staff and mistakenly think I must be struggling with life.

Thankfully, I have communicated my wishes for my medical care to friends and family. They were my voice when I was incapacitated and could not speak. As I lay in the hospital bed, my sister made decisions based on what she knew I would want.

She knew what to do because we talked about it. I wrote it down and sent it to her. She asked questions, and I was honest.

This week is National Healthcare Decision Week here in the United States. If you go to their website, you can learn more about the steps you can take to better prepare for your future. Each day of the week has a theme and Thursday’s theme is “Spread the Word.”

So, I’m telling you I’ve updated my advance directives. I will be emailing them to the people I have designated to make decisions on my behalf should I become ill or incapacitated.

What about you? Even if you are a healthy, young person, illness and disability can happen to anyone at any time. If you are unable to speak for yourself, wouldn’t you want the people who will be advocating for you to know your wishes?

The National Health Care Decisions Day website has a page listing resources. You can find it here, along with tips for how to chose a health care proxy and how to talk to your doctor.

Start the conversation today!

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View of a grey Derwent River, with cloudy skies. Bruny Island is in the distance.

To Tell the Truth

I’ve been sitting on this post for a few months, writing when I felt the urge. It seems fitting to share this today, which I just learned is the International Day of Happiness, because I am the least happy I have ever felt in my life and I don’t know what to do about it. Admitting that is difficult, because I know my friends and family will want to help me, make things better, do something to make me happy. The reasons for my unhappiness are complex and there are no easy fixes. Trust me, if there were, I would have done them by now.

This has been building since I lost more physical independence after my femur fracture in 2016. That catastrophic event took away my ability to independently drive my van, and increased the number of personal care hours I require. It also caused me to change how I use the bathroom, limiting my ability to pee freely as I described in this post. OK – to be fair, I’ve never been able to pee freely. But, until I broke my leg I was not limited to the use of three bathrooms on the planet.

The loss of independent transportation required me to move – twice – in the past eighteen months. I have been using my local paratransit system for most of my travel to and from work and events. Paratransit is a shared ride system, which means you are not guaranteed a direct ride from your pick up location to your destination. There have been days that I am picked up at my house (which is 15.9 miles from my office) to ride around for two hours, picking up and dropping off other passengers until I am dropped off at work. On average, I spend two and a half hours every day on the bus to travel my 32 mile round-trip commute. This is time I don’t get to write, volunteer, read, work, or just relax.

Last September, my friend and former college roommate Chris surprised me with a phone call. We hadn’t spoken since the start of summer, but our friendship is one where we can pick up exactly where we left off even if it has been months since the last conversation. We we played catch up and traded stories, I admitted that the past several months had been stressful. My exact words were something like, “I’m not really doing well and feel like I’m barely keeping it together most days.”

Chris was quiet for a moment, then responded, “Well, I wouldn’t have known that from your Facebook posts! You’re so busy, and always writing about volunteering with Rotary.”

The truth? I hate being negative all the time. So I don’t share all the crap I’m dealing with on social media.

I am not alone in this. According to a survey conducted in Great Britain, only 1 in 5 people are truthful in how they portray themselves on social media sites like Facebook and Twitter. According to the marketing company Custard, who performed the survey:

When asked how people’s lives differ online, 31% of respondent said that their social page is “pretty accurate, just with all the boring bits removed” and 14% said that their profile makes it look like they have a “much more active social life.” The survey also showed that men are more likely to lie about their lives through social networking sites, with nearly half (43%) of men polled admitting to fabricating facts.

I don’t feel like I’m lying on social media. I am not making up the things I share publicly. In my case, I choose to try to keep complaints to a minimum on Facebook. I am consciously not sharing most of the daily stress that is causing me to slip further into a pit of unhappiness. At least, I try my best to keep the negativity to a minimum.

But I’m struggling. Right now, finding positivity is a chore I force myself to complete each day.

It used to be my natural way of operating. I am an optimist. I see the glass half full. I believe things could always be worse. Yet, recently I don’t feel up to the challenge of maintaining optimism.

I have withdrawn from friends and family who care. I text instead of calling because it requires less energy. Until last week, I hadn’t sent a birthday card to anyone in at least two years. At a time when I should be surrounding myself with other positive people because I’m an extrovert who gets energized in social situations, I am hibernating.

I am not writing as often and when I do it’s not my best work. Writing helps me process what is happening in my world. It is a way for me to maintain balance and emotional stamina. A glance at my blog statistics shows I only posted 55 times in 2017. That may seem like a good number. But when you compare it to 2015, the year before the femur fracture, it pales to the 164 posts I shared.

Before any of you start sending me notes reminding me that you love me and that life is not all bad, I need to tell you something. I KNOW this is temporary. I KNOW what is happening in my life is not the worst thing in the world that could happen. I KNOW there will (eventually) come a day when my new wheelchair doesn’t make me cry in pain. I KNOW I will (someday) get that new wheelchair accessible van with the high tech driving controls which will enable me to participate in my community at will. I KNOW there are millions of disabled people who would love to have the difficulties I am facing right now – people who don’t have accessible housing, access to paratransit, full-time employment, adequate personal care assistance. I KNOW I am speaking from a world of privilege they do not have and would gladly take in a heartbeat.

Knowing those things does not make the challenges I’m facing less real or less of a barrier in my life.

Last week I attended a book reading at my local independent living center. During the community discussion after the reading, someone mentioned the anger disabled people feel – anger that is not acknowledged or validated. Often, well-meaning people will listen to me vent in frustrated anger and respond by saying, “Well, at least it’s not this (insert awful thing here)” or “It could be worse! You could have (insert other disability or illness here).”

Those comments don’t help me feel less angry. They don’t acknowledge that here and now, I am living with levels of fear, anger, and unhappiness which threaten to burst out at inappropriate times. They don’t validate my feelings of discouragement at having to battle and navigate a bureaucratic system which is supposed to be helping me but has not produced anything meaningfully helpful in 18 months (I’m talking about you ACCES-VR).

So, today, on this International Day of Happiness, even a gratitude list doesn’t make me feel happy. I debated whether or not to share this post and eventually decided perhaps there was someone else who is not happy today who could benefit from knowing she is not alone. I edited, deleting swear words and prepared myself for the reaction it will bring.

Tomorrow I’ll be better. That’s the way it’s been for over 2 years. This too shall pass. Periods of happiness can be found, just not for me today.

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.