Finding the Right Words

Like many college students, I struggled to decide what occupation or course of study to pursue. After a few months, I decided I wanted to become a speech-language pathologist. One of my professors, Dr. Mark Ylvisaker, taught me a definition of language I still use in my own presentations and writing. According to Dr. Ylvisaker, language is a shared symbolic code used by members of a group to express shared beliefs, ideas and values.

You can learn a great deal about a group by observing language. This week I was reminded how many people use negative language about disability rather than just saying the word “disabled.” Negative language just proves what we disabled people already know – nondisabled people don’t have a positive view of disability. (Side note, if you haven’t heard of the #SayTheWord campaign started by Lawrence Carter-Long, go do your research after you finish this post.)

What do I mean by negative language? I mean the back-handed compliment someone tried to give me by saying, “You’re so much more advanced than others who are dealing with your affliction.” It’s the stranger at the pharmacy who watched me wheel past a display and said, “Look at you handling that so well!” Or the person on Zoom who said, “You don’t even look handicapped Denise!” While all three of these caused my teeth to grind, I’d like to focus on that first example for this post.

That first sentence was said during a phone call with someone, whom I’ll call Helen, I had considered as a potential health provider. In the moment of conversation, I knew I would have to do some education if I were to continue with Helen. I have no problem educating others about disability positive language. I routinely perform this education when I go see my neurologist, who is based at a teaching hospital and has students accompanying him. However, when I am seeking help for myself, I don’t want to have to be the educator for the person I am looking to for assistance. I needed Helen to see my life as valuable, and her stating I had an affliction, which is defined as something that causes pain or suffering, did not set the right tone for me.

If I’m being honest, my disability has given me some privileges in life. Thanks to my disability, and the state of New York, I am eligible for both Medicaid and employer-sponsored health insurance. This means I have not paid out of pocket for hospital stays or medical appointments since 2008. Three surgeries, four hospitalizations, a two week stay at a rehabilitation hospital and countless doctor visits – plus a new wheelchair – at no out of pocket cost to me.

My disability has also provided privilege at other points in my life. I have been able to skip lines at tourist attractions thanks to my wheelchair. I have also been able to bring a companion for free or at a reduced cost sometimes. And who can forget the parking?!

I think most people who use language that may cause me to grind my teeth are just trying to find a common ground. They are afraid to say the wrong thing, at least that is what I tell myself as I try to be patient with myself and with them. After all, I am well-known for opening my own mouth and shoving my foot down my throat.

This is why I am a firm follower of the “oops and ouch” technique. Whenever I say something that doesn’t come out the way I intended, I say, “oops” and explain my intended message. And if I hear something that doesn’t sit well with me or offends me, I say “ouch” and explain why I am having a reaction. This exercise has helped me communicate more effectively with friends, work colleagues and during group presentations. The trick is staying present in the conversation, to apply it when the “oops/ouch” occurs.

I failed to respond immediately to Helen this week when faced with unexpected negative language but I still learned about communicating nonetheless. So, the next time I speak with Helen, or someone who uses language like she did, I can be more prepared to have a meaningful conversation.

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.

To This Year’s Class of MWA

Facebook showed me this photo this morning and reminded me that seven years ago, my best friend and I were having fun in Grand Rapids, Michigan, during the week of the 2011 Ms. Wheelchair America (MWA) pageant. It was a timely reminder, since the contestants are gathered in Grand Rapids again right now. They are getting ready for the second day of judging as I type this.

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

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

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

My Drinking Problem

Because of the weakness caused by my neuromuscular disease, I have relied on other people to help me go to the bathroom for the past eleven years. Since 2007, I have timed my use of the toilet around when and where I will have proximity to an accessible toilet AND a Personal Assistant (PA), sister, cousin, friend, neighbor, or other kind person I could coerce ask to help me. I have restricted my fluid intake to coordinate, as best as I can estimate, with other people’s schedules and the times I will be near toilets I can safely use.

I wrote about my battle with “pee math” in this post. Since I have been so open about my methods over the years, I was surprised by the number of friends who did not know this was a routine for me. But, things are changing!

As you might remember, six weeks ago I had my suprapubic catheter tube (SP Tube) placed. According to the surgeon, the procedure “was textbook,” and went well. There were no complications from anesthesia. I remember being wheeled into the operating room with bright tropical fish painted on the walls. The breathing mask went over my face and the next thing I knew, I was waking up in the recovery room.

My SP Tube means I no longer need to sit on a toilet to urinate. Instead, urine freely flows out of the SP Tube to a collection bag. During the day, I wear a bag strapped to my leg. At night, I connect to a larger bag that hangs on the side of my bed.

I am now free to drink without the worry of how I will get on a toilet, or who will help me, or when it will happen. If I want to have an additional cup of coffee, I don’t have to think about where I will be in the afternoon and if I will have a PA with me to help me transfer on to the toilet. Now, I just drink the coffee! Or the juice. Or the water. Or the wine. Or whatever I want!

When I am at work, I can have as much water as I want! The first day I returned to work after surgery, I drank five, yes, FIVE, 16 ounce glasses of water. Granted, I had to dump my leg bag five times as a result. But I was not dehydrating myself because of lack of access to help and an accessible bathroom.

Drinking as much as I want, whenever I want, has created new challenges I have not had to face for several years. For the first time in a decade, I have to worry about accessible public restrooms.

I know – it sounds strange to hear a disabled woman admit she hasn’t worried about accessible public restrooms on a regular basis. I haven’t used them for a decade. Sure, I’ve always known it was an important issue. But, it wasn’t an issue for me so I spent my advocacy energy on other matters. At least, I did until the end of April.

Not all so-called “accessible” restrooms are actually usable. Disabled people know this but most non-disabled people do not. Most non-disabled people see grab bars next to a toilet and think the bathroom is accessible. Grab bars are not the only feature that make an “accessible” restroom usable. In addition to grab bars, accessible restrooms must minimally have:

• Accessible sinks that can be operated with a closed fist (no faucet knobs that require grasping and turning)
• Soap and paper towel dispensers and mirrors mounted at lower heights
• Lever doorhandles or handles that can be operated with a closed fist
• Doors that do not require more than 5 pounds of pull force pressure to open

The majority of bathroom doors open into the bathroom rather than out. This is probably so people walking in a hallway don’t get whacked by someone opening the bathroom door. While I understand that rationale, there are usually more people outside a bathroom than inside. If I can’t open a door because it requires more force than I can generate, I stand a greater chance of finding someone outside a bathroom to help me than I do inside the bathroom.

Since I had my SP Tube placed, I have been stuck inside six public restrooms because the door was too heavy for me to pull open. I now take my phone into the bathroom with me each and every time I go. If I am with a group of people, I ask them to come rescue me if I don’t return after five minutes in the bathroom. Last week I learned if there are multiple bathrooms, it is helpful to tell your colleagues which bathroom you are actually going to if you make this request. My friend Melissa dutifully came looking for me after I requested a rescue not knowing I was in the bathroom on the other side of the building. She sent me a text saying, You good? I just checked the bathroom and you are not there…

I am still learning how my body behaves with all of this extra fluid intake. There are still timing issues related to drinking, particularly when planning paratransit bus trips. It’s not fun to ride around on a bus for an hour with a leg bag that is full to the bursting point. Thankfully, I have not had any messes or spills.

Next week, I will return to the pool – the last step in resuming all of my activities. It will feel wonderful to return to the water, and I miss my swimming buddies.

Right now, I need to go grab a drink. I’m empty!

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!