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.

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!

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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!

30 Days of Thanks Day 14: My Peers

I spent today at a meeting of the New York State Independent Living Council (NYSILC). This council is a non-governmental nonprofit comprised of 25 appointees from around the state. As a council, we are responsible for developing, monitoring, and evaluating the Statewide Plan for Independent Living. We also conduct surveys and develop reports about issues impacting New Yorkers with disabilities. You can learn more by watching this video:

After the meeting, my friend Blaise and I spoke about disability and independent living to a class of local community college students. We have done this once a semester for almost three years now. Tonight’s students were engaged and asked GREAT questions about disability policy, etiquette, personal assistance and language.

Today I am grateful for the relationships I have with my peers. I am fortunate to have this strong network of other disabled advocates. I learn from them every day, and grow through our interactions. When I have questions, they are quick to offer answers and insights. If I am struggling, they offer suggestions and advice.

 

How I Spent My Summer Vacation

There was a chill in the air this morning in upstate New York. Summer is drawing to a close and for many, this long holiday weekend signals the coming of Fall.

Local schools will begin classes next week. When I was a student, early September was the time to reconnect with friends and reminisce about summer vacations. Since many of you feel like friends to me, let me share the story of my summer vacation.

A few months ago the President of Ms. Wheelchair America (MWA), my friend Shelly Loose, called and asked me if I was ready to be a judge at the national pageant. I agreed without even checking the dates and told my best friend Steph, who has been to ten national pageants with me, to put in a vacation request. We were heading back to MWA.

For twelve summers (2001 – 2012) I spent my summer vacation at the MWA Pageant. Regular readers know I have been involved with MWA in various roles since my year as Ms. Wheelchair New York (MWNY) 2001. After representing my state at the national MWA Pageant, I volunteered as state coordinator of the MWNY program for twelve years. I served on the MWA Board of Directors as Secretary, Vice President and Executive Director. We hosted the MWA Pageant here in New York in 2005. I have often joked that the only roles I haven’t held for MWA are President and Judge. I can’t make that joke anymore after this summer.

It was difficult not to say anything in the months and weeks leading up to the pageant. Close friends and family knew where I was going but I didn’t say anything on social media. The excitement grew as the summer approached.

Finally, the week was here! Steph and I loaded up my van on a mid-August Tuesday and hit the highway. Armed with snacks, beverages, a fully charged iPod, a bedside commode, and a scavenger hunt list, we were ready for the open road. The drive to Erie, Pennsylvania, site of this year’s national pageant, was a raucous trip thanks to funny road signs, Chex mix, my “Steph Tunes” playlist, and an unexpected casino stop and win.

The pageant itself was uplifting and positive, as MWA always is. Our judging panel clicked right away and I enjoyed the experience of judging more than I thought I would. Every woman who came before us was passionate about a cause, and their enthusiasm was contagious and inspiring.

More than judging, I enjoyed being an observer during the pageant. When I was a titleholder, the MWA Pageant was my first exposure to being in a room surrounded by thirty other accomplished women who all happened to use wheelchairs. I left that week with women I could call “sisters,” my first peer support network of other wheelchair users who weren’t men. Watching this year’s titleholders develop their own sisterhood reminded me why I loved being a part of the national program.

It is humbling to know that I have played a small part in making it possible for other women to experience a program that helped me grow and develop as a leader. Many of the skills I use in my work and volunteer life were honed through my years with MWA. Being asked to help select the woman who will be the public face of the organization was an honor and responsibility I took seriously (even though we had TONS of fun and laughs during the week).

Each year, there are one or two women who really open up and come out of their shells during MWA. Steph and I have seen this many times during our years volunteering. Sometimes we can pick them out early in the week and sometimes we don’t notice it until we reflect back on the week during out travels home. The transformation is always exciting to watch. These women leave the week inspired to accomplish more than they thought they could, ready to challenge limitations and change their communities.

I always leave MWA a changed person too. This year I left with a heart full of joy and hope. Those two feelings have been in short supply in my life as I continue to slog through the process of acquiring a new accessible van and regaining independence. The pageant week gave me a much-needed boost of optimism and encouraged me to keep advocating through a bureaucratic process that is slower than molasses in January.

To the women of this year’s pageant – thank you for sharing your stories and convictions with us. You encouraged me more than you may realize. My will to keep fighting was replenished.

Only one of you went home with the title, (Sheri Melander-Smith from Minnesota is the new MWA 2018), but you are all winners. You will continue to make improvements in your neighborhoods, towns and states. Congratulations on your accomplishments so far. I look forward to seeing what great things you will do next!

Two women seated in wheelchairs. One is wearing a pink dress and shawl. The other is wearing a purple dress, a sash and crown and holds a bouquet of flowers. Both are smiling.
Congratulations to the new Ms. Wheelchair America!

Now it’s your turn! What did YOU do on your summer vacation?

The words 'Disability Rights are Civil Rights" appear in red, white and blue lettering on a black background.

What the ADA Means to Me

When I was a participant in the 2002 Ms. Wheelchair America Pageant, I was selected as one of the five finalists. As a finalist, I had to answer two extemporaneous questions on stage during the crowning ceremony for the final judging session – a serious question and a light-hearted question. Like most of my peers, I chose to answer the serious question first.

In one single sentence, explain what the American with Disabilities Act (ADA) means to you.

I don’t remember my exact answer. I do remember thinking, “One sentence?! Do they know me?! How am I supposed to answer this in one sentence?!” I could hear my sister Sandy laughing in the audience, and knew she was probably thinking the same thing.

I said something about the ADA being crucial civil rights legislation which gives protection and access to millions of Americans with disabilities. I kept it to one single sentence as requested, at least I think I did.

Today is the 27th anniversary of the signing of the ADA. As I write a draft of this post while riding the paratransit bus to work, I am thinking of the many ways this civil rights law has changed my life and the lives of those around me.

This bus, every public bus that is accessible – all thanks to the ADA and the ADAPT activists who literally put their bodies on the street to force change.

I am going to work today, along with my good friend Bill who happens to be on the same bus this morning. Bill acquired his disability just a few years ago, but thanks to the ADA has been able to remain employed with reasonable accommodations from his employer.

I got out of bed this morning, went to the bathroom, took a shower, got dressed and styled my hair with the help of the Personal Assistant who came to work for me today. My personal care needs can be met in the community rather than an institution because of the ADA (and because I live in a state like New York which offers a Medicaid Buy-In Program for Working People with Disabilities.)

Think the ADA only helps those with disabilities? There are many examples of how ADA regulations have helped more than the disabled population, but here is one that is prevalent. Have you ever pushed a baby stroller down the street and used the curb cut to gain access to the crosswalk? What legislation do you think required those curb cuts? On behalf of all disabled people who fought for access, you’re welcome.

The ADA is about more than just physical access though. For me, the ADA creates a sense of entitlement because it tells me I am worthy of equality. Because of the ADA, it is illegal to discriminate against me and other disabled people. I have expectations of access now that I did not have twenty five years ago. When I travel in the United States, I expect to find curb cuts, accessible toilets, wider doors in hotel rooms, accessible public transportation, and accessible parking.

Does that mean I always find these things? Of course not. But thanks to the ADA, I have the ability to pursue legal action if I feel I am being discriminated against because of my disability.

Equality – that’s what the ADA is all about to me. It is not a guarantee I will succeed, but it is an important guarantee that at least I will be afforded the same opportunity for success as my nondisabled peers.

Of course that is not the way it really works. For many reasons, disabled people still face significant barriers to education, employment, housing and transportation. And of course, like the rest of the United States, we are waiting to see what our legislators will do to healthcare and Medicaid. For many, today is not a day of celebration, but a day of anxiety and fear.

That may sound extreme for those of you who do not rely on Medicaid for your daily needs. I have had friends tell me, “Oh, don’t worry. They won’t take away your personal care.”

Here’s the thing – we don’t know what will happen. And it is far too easy for someone who is able to get out of bed, pee, poop, shower, eat and live without the assistance of another person to dismiss our concerns.

My needs are not “special.” They are the same basic needs every human has. I have the right to expect that I can meet my needs in my community, just like everyone else. The ADA guarantees me that right, and when you need that level of assistance (if you live long enough, you will!) hopefully you will have that right too.

Freedom. Life. Liberty. The pursuit of my career, hobbies and other things that bring me happiness.

That’s what the ADA means to me.