A Good Morning?

As I start typing this, it is 7:31 AM on a Thursday. I have only been awake for an hour and a half, but already I feel like I have worked a full day. Some days, it’s like that when you use Consumer Directed Personal Assistance (CDPA) or self-directed home care.

In CDPA, I am the “CEO of me” and I am in charge of personnel. I recruit, train, supervise and manage the home care workers (Personal Assistants or PAs) who work for me. A business called a Fiscal Intermediary is responsible for the administrative paperwork and payroll required so my PAs get paid. In New York, where I live, I choose my Fiscal Intermediary. I happen to be employed by the Fiscal Intermediary I chose, Consumer Directed Choices.

It’s difficult to explain to nondisabled people who don’t use CDPA how intimate personal care is. Personal care creates a codependency in which both parties, the care recipient and the caregiver, rely on each other for a variety of reasons. I cannot function without the women I employ. They cannot function without the wages they earn from their work. We are tied together by complimenting needs, but we have developed relationships over time which go beyond typical employer/employee constraints. And for me, the most important member of my care team is the morning PA.

Today started like most mornings. My alarm buzzed. I shut it off and took stock of my surroundings. I heard Tina, my morning PA, in the bathroom. I smelled coffee. So far, so good.

As soon as Tina came into my bedroom, I knew something was wrong. Her energy was flat and she was not her usual upbeat, positive self. I could tell she was not feeling well and knew this would impact my morning. Tina and I have worked together for seven years now, so it is easy for me to gauge how she is feeling with just a look. She is the first person I see most days and normally makes my transition from sleep to work an easy one. We can anticipate each others movements and know how to make the morning routine go smoothly.

So today I was not surprised when she looked at me and said, “You OK for a minute Dee?” before running to the bathroom as I nodded. Tina was sick and I was going to have to change my routine before even getting out of bed.

This is what happens when you rely on other people. At least this is what happens to me.

When one of my PAs is sick or unable to work, I instantly go into problem solving mode. This level of executive functioning is necessary for me to be able to juggle my own bodily function needs while still balancing the need to show up for my job as my employer expects. The thoughts that filtered through my head this morning went something like this:

Is Tina too sick to at least get me out of bed? Is a shower out of the question? If I send her home, is there anyone else I could call to finish her shift? What is absolutely required for me to be able to function today?

Thankfully Tina was able to help me get out of bed. However, it soon became apparent she was too ill to continue her shift. Then the questions in my head shifted:

Is there anyone else I could call to help me use the toilet? If I don’t shower this morning, when can I shower? What time is my first meeting today? Am I on camera? If Esther helps me use the toilet after her shift at her other job, would I need to reschedule any work meetings?

I sent Tina home after she helped me put on a clean shirt (at least I will be presentable on camera!). I left a message for Esther and turned on my computer. I said a prayer of gratitude – at least I’m out of bed drinking a cup of coffee!

I logged onto my work computer to check email. My body started sending me signals that waiting for Esther wouldn’t be possible. I opened my contact list and started scrolling. The questions began again:

Who is relatively close and could spare an hour to help me use the toilet? Sally can’t make it before she has to be to work. Brooke has class this morning. Margaret never responded the last time I was looking for someone so is it even worth asking her? Maybe Sandy hasn’t left home yet and has time to stop on her way to work.

Thankfully, I caught my sister Sandy just as she was getting ready to leave home. She didn’t need to be at the office today until 10 AM. She had time to stop over and help me use the toilet. It was time for a quick gratitude list:

  • I’m up and out of bed.
  • I have coffee.
  • The internet is working.
  • I am able to work from home so it doesn’t matter if I am only dressed from the waist up (Guess what? I’m only dressed from the waist up today!).
  • And I’m getting a quick visit from my sister.

Now it is 8:15 AM and Sandy just got here. It’s going to be a good morning after all.

Bronze statues of men listening at a brick wall.

Active Listening

I don’t remember when I first heard the phrase “active listening.” It was probably in a college classroom, during a lecture on behavior management or providing constructive feedback during a speech therapy session. I studied speech therapy. As developing clinicians, it was important to be able to hear and process what we were hearing in order to help clients develop into stronger communicators.

“We have two ears and one mouth so that we can listen twice as much as we speak.

Epictatus

You may have seen or heard this quote before, but have you really thought about the act of listening? True listening requires us to be present and attuned to our communication partner. When we are actively listening, we are not trying to finish the story being told to us. Instead, we are focused on the reality of the storyteller – their feelings, reactions and intentions. We are able to reflect back to them our own insights, or ask probing questions to gain a clearer understanding.

At least, that is what we should be doing.

I am the first to admit, active listening takes extra effort for me when most of my communication these days takes place over a phone or virtual connection. I find myself easily distracted, even when the topic is one I find fascinating. I know I am not the only one who gets antsy and restless as the Zoom meetings increase in number. Of course the speakers on these calls deserve my attention and active listening. Yet, I struggle to wait for my communication partners to finish their thoughts before chiming in.

One of the ways I remain an engaged listener is to give my hands something to do. When we used to gather in-person for conferences or meetings, I would silently crochet. Last week, I volunteered to take the minutes for a meeting so I would be forced to pay close attention to what was being discussed. Earlier this month I served as a host for a large Zoom event. This ensured I would remain focused and engaged for the entire multi-day training seminar, rather than playing solitaire or Candy Crush.

Being an active listener shows our communication partners we are respectful of what they are saying. Given the state of our political climate, it is crucial for everyone to listen to people we may not agree with. That doesn’t mean we need to give hate speech a platform. I’m not endorsing that at all. But if we don’t listen, truly listen, to people who don’t think or speak like we do, we make it impossible to find common ground.

These days, it is easy to walk away or tune out those who do not share our outlook or viewpoint. I can unfollow a friend or family member on social media if I find their posts offensive or opposite to my point of view. I can, and have, removed myself from an online group when what started as a community of peers turned into a negative space which did not bring positivity to my life. I have the privilege of removing myself from conversations I find degrading. But should I always disengage?

Last week I heard an interview with two men who were talking about gun violence. One man was a strong supporter of the Second Amendment and the right to bear arms. The other man was speaking out in favor of legislation which would ban semi-automatic rifles and high-capacity magazines from civilian sale or use. I was tempted to turn off the radio. Then each of them said something which made me think differently about the topic. I didn’t change my mind, but I gained an insight into their own opinions and the rationale for their beliefs. I developed a deeper understanding about a topic I often don’t think about in more than a cursory manner. I am not ready to take a stand with either of them. However, I have a clearer picture of how someone I traditionally write off as opposite of me arrived at their conclusion. I respect the men for their willingness to take a stand and explain the reasons for their stances.

Respect. At the end of the day, it is what we hope to gain from others. I don’t need agreement from everyone who reads this post or hears me speak. You grant me respect by taking a few minutes of your day to read and comment. It may not be the same as actively listening with your 2 ears, but you have 2 eyes, too.

I challenge you to take time to actively listen this week to someone with whom you do not agree. Ask a question if you can, and try to engage in a respectful dialogue if you feel comfortable. Maybe when we get to know more about the people we typically avoid, we can help start to find common respect with others and build stronger communities.

Photo of double rainbow, arcing above a green meadow. A river is in the distance, covered in gray storm clouds.

Does It Inspire You to Action?

Inspiration. What is it? According to Merriam -Webster, it is:

  • 1. An inspiring agent or influence
  • 2. The quality or state of being inspired
  • 3. The act of drawing in – specifically the drawing of air into the lungs
  • 4. The action or power of moving the intellect or emotions

People find inspiration or become inspired in many ways. For some, a sunrise can be inspiring. Others are inspired by observing an act of strength or sacrifice. Words inspire me. They have the power to move my emotions and influence my behavior.

This weekend I had the privilege to listen to several inspirational speakers as part of the Rotary Empire Multi-District President Elect Training Seminar (MD PETS). Social gathering restrictions meant this year’s seminar was held virtually rather than in-person. While this reduced the opportunity for spontaneous fellowship, it allowed the planning committee to invite amazing speakers from across the globe who would not have been able to attend if our event had not been virtual. At the end of the seminar yesterday, I made a list of the steps I can take to be a stronger leader in my Rotary club and professional life. I started to imagine how the words of inspiration could translate into new activities.

Whenever I feel inspired, I challenge myself to look deeper. I try to identify how I can convert my feelings into at least one new action. This activity was caused by my own emotional reaction to nondisabled strangers calling me inspirational. My automatic responses to what was intended to be a compliment were limiting my chances for meaningful discussions.

I am an open person, not shy about sharing my personal stories in my writing and public speaking. I want to be an accepting, humble, and grateful person. I am proud of my accomplishments but I don’t see myself as having done great things “in spite” of my disability. Rather, I have completed many tasks, activities and adventures as a woman who happens to be disabled, just like I happen to have brown hair. My disability has always just been a part of who I am, not something I have had to “overcome” in order to live.

But when nondisabled strangers labeled me as inspirational, I rushed to judgement without giving them the benefit of the doubt. I internally rolled my eyes, assuming they found me inspiring because of my disability rather than taking the time to question them about their statement. I closed myself off to a possible dialogue or the gift of connection because it was easier to group that stranger with people who gave compliments to make themselves feel better about themselves. After all, doesn’t everyone know disability is a fate worse than death? Instead of taking the time to learn why a stranger offered me what might be construed as praise, I would jump to cynicism.

Once I realized what I was doing, I began to examine the reasons why. If friends or family called me an inspiration, they often told me the reason. This meant I did not doubt their motive or intent. So, I started to ask a follow-up question whenever a stranger told me I was inspirational. Instead of automatically assuming intent, I began to smile and say, “What have I inspired you to do?” or “How have I inspired you?”

The responses to this question have been varied and revealing. Only a few people told me they were inspired because my own disability made them feel better about themselves. One brave person actually said, “If you can do everything you do being so disabled, I don’t have any excuse.” Some people are stunned, shocked at my response. A few people have felt challenged and become brusque, responding with comments such as, “Well, I was just trying to be nice!” or “Can’t take a compliment?”

Then there are the people who redeem my faith in others. They tell me they are going to advocate for inclusion. They are going to stop holding public events at venues that aren’t accessible for everyone. They are going to start captioning their YouTube videos. They are going to stop assuming all disabilities are visible.

When we rush to judgement, we lose the chance for meaningful discussion. If we act on our incorrect assumptions, we never have the opportunity to be blessed with insight about ourselves. My quick dismissal of the “inspirational” label applied to me by others robbed me of a gift. My own story could have an impact in meaningful ways, just like I am moved to action by the words of others. Some of these may be related to disability, but not always. Why did I continue to assume the worst for so long?

I continue to struggle when others call me inspirational. There are times I feel unworthy of the praise. But I am still doing my best to try not to rush to judgement and indignation. Asking questions has helped me understand I can be viewed as inspirational for non-disability related reasons, even by those who do not know me well. And when I offer the word to others as a compliment, I tell them why in case they are internally rolling their own eyes.

Woman sitting at open laptop. Black and white line drawings of stress-inducing thoughts surround her.

I’m Over It

Woman sitting at open laptop. Black and white line drawings of stress-inducing thoughts surround her.
Image by Gerd Altmann from Pixabay

It has been months since I’ve written a blog post. Months since I sat and stared at the cursor and thought, “That’s worth sharing with my followers.” So much has happened – COVID, adapting to remote working, protests, theater shut downs – you know. LIFE. Maybe not life as we know or knew it, but life as it IS.

If I’m honest, I’ve not been consistently coping well. But I’ve been coping. Doing the best I can, like most everyone else I presume. I mastered Zoom. I hosted virtual happy hours. I called and Skyped with friends from around the world.

It’s not been easy. At a time when I want to be out in the streets, I am home because I know my chances of surviving another pneumonia-induced ICU hospitalization are poor. I should be out exploring the world in my new van. I have been to the gas station to fill it up four times since March 13.

Throughout the past six months, the relationship I have relied upon and leaned on the most is the sisterhood I have with my bestest best friend, Stephanie. Together we have laughed, cried, hosted a Hamilton watch-party, consumed tubs of popcorn while on opposite ends of the phone, and kept each other as positive as possible.

This week we’re both struggling. I have an injury. She has a multi-day migraine. I’m suffering Zoom fatigue. She’s managing an empty nest and caregiving for family. It’s difficult to maintain optimism and positivity when you are in pain and feeling overwhelmed.

This afternoon, she sent me the following words. I told her it captured a great deal of what I’m feeling and would make a great blog post. Actually, what I really said was, “I think your rant makes for a great blog post. It makes me wish I wrote it first. But I don’t have the energy to write, or a shoulder that would let me type that long.”

She gave me permission to share it, as long as I gave her credit. So, here are her words, unedited and raw. Today they describe where we are at. Tomorrow we’ll be better. Tomorrow we’ll go back to being optimistic. Or we’ll need another day.

But we’ll have each other. And for that, I am blessed beyond words.

I’m Over It

by Stephanie Canfield

I’m over people. 

I’m over the ones that work at a job for a short time, maybe a couple months to a couple years, always looking for something better, and call those jobs a “career”. I have a career in banking…I’ve been doing it for 24 years. Not two years, until the next best thing came along, but for more than half of my life. 

I am over the ungrateful ones that get a job and then complain about that job from day one. And when they finally do leave, are ungrateful that the institution even gave them a chance to begin with. I’m tired of the ones that are 25 years old, working for a 79 year old boss, that refuse to understand the generation gap and that your ideas about how a business should run and how you treat people might be a little different. And that not all of those practices are bad just because they may seem outdated. 

I’m over people blaming their job for all of their problems, including “inflaming my tennis elbow so I wake up in pain and have to go to the chiropractor and get acupuncture”. Pick a profession…I’ll show you that doing the same motion over and over will eventually cause problems with any given part of your body. 

I’m also over the people that don’t realize that just because they live their life a certain way that it isn’t the same for everyone else. Just because you have a great relationship with your parents doesn’t mean you’ll have one with your kids. Or that anyone else will. Or has. 

That just because a person isn’t Black doesn’t mean that they can’t stand up for the Black Lives Matter movement, or that just because they ARE Black it means they have to. I’m tired of people’s opinions about masks, COVID, politics…and the fact that sometimes when people ask “how do you feel about this mask stuff” that maybe they’re just trying to start a conversation with you, or engage in small talk, not have you judge them because they don’t agree with you. 

I’m over political ads. I’m over everyone’s feelings being hurt because they don’t feel included in whatever the hot topic is at the time, or the conversation at work, or the dinner table, or whatever. I’m over people fighting one another about kids going back to school, or not, or homeschooling, or remote learning. I’m over the debates about there being no jobs but seeing “help wanted” signs everywhere, and stimulus checks, and not getting charged taxes for now but paying them back later, about who should get bonus unemployment money, the definition of essential workers, and disgruntled workers that have jobs not getting paid as much as those on unemployment simply because they’re still going to work every day. 

I’m tired of people forgetting how to be kind. I’m tired of people that are selfish but think they’re acting on behalf of the majority, when in reality they’re only self serving. I’m tired of people that think educational institutions have to take only their child and their child alone in to consideration instead of looking at what is best for that educational community. 

I’m tired of people that are lazy and don’t take care of themselves or hold themselves accountable for their own well being. I’m over well meaning people pissing me off because they think I can’t handle simple tasks, like getting myself up on time, so they feel the need to “wake” me up, even when I’m awake. How the hell have I managed to get up and to work on time this many years without their help??? 

I’m over so many things, dude, and I’m ready to yell FUCK OFF to the entire world. To tell them all to get over themselves, take accountability for their own actions, quit blaming others, do what you feel is really and truly right and all the freeking rest will PROBABLY fall in to place. Do what you need to to get yourself to survive, and along the way if you have the opportunity to help someone else then you damn well better step up and take it! If you are able to hold yourself accountable DO IT, and then help those that TRULY aren’t capable, not the ones that are just too damn lazy to do it. 

And for fuck’s sake, BE NICE TO OTHER HUMAN BEINGS. And animals.  Be nice to them, too.

OK. Maybe I’m done. 

And I probably have opposite opinions on everything I just said, since I can hardly ever pick a side, because of my damn ability to see more than one side to most situations. 

Damn it.

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.