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.

30 Days of Thanks Day 6 – The WEBHER-istas

When I was finally brave enough to tell people I was a writer, I was worried I would be confronted by those who thought I was a fraud. After all, I had not published anything (yet) and had no idea how I would really start to work on “the book.” But I knew if I wanted to learn and become stronger in my creative endeavors, I had to make connections with others who were pursuing similar goals.

I first found friends in the My 500 Words online community. Together, we shared our struggles and successes as we strengthened our daily writing habits. Although I loved having peer support and interactions with other writers, after a year I felt the group was not really pushing me or challenging me to move in a direction I needed if I was going to really get serious about “the book.”

You see, I set a goal for myself at the start of 2016 that this would be the year I start actually writing “the book” – the one I have been talking about writing for four years. I plotted and planned for how I would make time in my daily routine to maintain my blog and produce 3 -5 pages per day.

Then I broke my leg and spent a month in hospitals, and had to adjust to a new way of accomplishing all my daily tasks. I prepared myself to put my writing dreams on hold, rationalizing my need for rehabilitation would need to take priority.

I don’t remember who reached out to me first about WEBHER. It might have been Tonia, but then again it could have been Roslynn. The details of events from late January are still a bit fuzzy because I was not able to write every day and for me, the act of writing down the details helps specifics take root in my permanent memory. The invitation went something like this:

We know you aren’t really focused on writing right now. But when you are ready to write again, we’d like to you to consider joining a Facebook group for women writers.

I read more about the group, a small networking group exclusively for women authors, designed to promote a positive and safe environment in which to read and review each other’s work. It sounded like it was just what I needed, and I began to think I might not have to postpone my writing dreams just yet. I sent back a thank you response with assurances I would be let them know when I was ready to write.

A month later, I realized I missed writing. I was struggling to process all the change in my life and knew I needed to get back to my daily habit of spending time organizing my thoughts into words. I also felt I was ready to become accountable to another group, so I asked if the invitation to WEBHER was still open.

The WEBHER-istas welcomed me with open arms, quickly becoming some of my most encouraging supporters as I progressed through rehabilitation and the return to pre-injury activities. They responded with enthusiasm when I reached milestones. They sent emails and messages asking about my progress. They commented on my blog posts, giving me ideas for future writing.

I have always known peer support was important in helping me develop as a professional, disabled woman. I had hoped to find a peer network of writers in which to grow and further my writing dreams. The WEBHER-istas have become that network. I know when I share my work, I will get honest and constructive feedback. If I have missed a mistake in editing, someone will kindly bring it to my attention – not to make me feel bad for making a mistake, but because they know I would want to fix it. When I share good news posts, they rejoice with me. When I am quiet for an extended time, someone will send me a note asking how things have been.

Thank you to my WEBHER-ista sisters. I admire your talents and your creativity. I appreciate you accepting me into your group and nurturing my writing dreams. Each time I read one of your comments I know I will learn more about you and, just as important, something new about myself. There have been many obstacles this year, but this network has made it possible for me to fulfill a goal. I promise to keep you updated on “the book” – a work I have finally started thanks to your faith and optimism.

Summer Camp

Summer is here in upstate New York. Many of my friends are sharing social media updates about their children and summer camp. Seeing their photos makes me nostalgic for my own summer camp experiences.

As a child, I attended a summer camp for kids with disabilities. For seven years, my parents drove me to and from Wagon Road Camp so I could spend two and a half weeks with my “camp friends” while they had a (well-deserved) respite from me.

I loved camp for many reasons. Camp had fun activities such as horseback riding, swimming and music. Camp gave me opportunities to explore my own unique abilities and taught me how to instruct other people to best help me. Most importantly, camp provided me with my first peer network of other kids with disabilities.

Growing up in a small town, I did not have interactions with other kids with disabilities. At camp, every camper had a disability. There were other kids with muscular dystrophy, cerebral palsy, cognitive disabilities, sensory disabilities and more. Some kids were more independent than me, and some needed more assistance.

I had two best friends at camp – Jen and Steph (not the same Steph who is my bestest best friend). The three of us met in Yellow Cabin our first summer at camp and instantly bonded. When we were together again the next year in Pioneer Cabin (we were moving up!) we asked the counselors to move our beds so we could all be in the same corner. We maintained this arrangement when we aged out of Pioneer and moved to Purple Cabin, home to all the cool chicks in chairs.

Each of us required different levels of personal care assistance. Steph and Jen required more help with dressing and bathing but were more independent with mobility than I was. I was still walking, but climbing hills was difficult and I fell at least once each session. Jen let me use her power wheelchair for support, slowing down so I never had to walk alone. Steph needed help eating and I often sat next to her at meals so I could feed her if a counselor got called away. The three of us always helped each other as we could without hesitation.

Because Jen and I had progressive neuromuscular disabilities, our functional ability changed each year. We weren’t the only campers to experience this. Everyone had to adjust to friends who had new equipment, or needed different levels of assistance. And every year we started camp wondering which of our friends would not be coming back for the summer.

This early recognition of the frailty of life made me more appreciative of the opportunity to develop a crucial peer network. At home, I was unique – the only student with a visible disability in my small school. However, at camp I was surrounded by kids who were just like me. They understood what it was like to always arrive through another entrance, to have the new kids stare and point at you when you entered a classroom, to know a cold could develop into pneumonia which could be a death sentence.

Quite simply, at camp I was with others who “got it.” I didn’t need to explain myself and my reaction to disability. If I spoke about frustration caused by lack of physical access at a friend’s house or school event, my camp friends all nodded in understanding because they had been excluded from full participation also. It wasn’t that we were upset at our friends for living where they lived. We just didn’t like our disabilities preventing us from having the social lives we wanted, on the terms we wanted.

Together we learned important lessons of acceptance. As a diverse group of mixed disability types and racial backgrounds, we learned respect and tolerance for others. Sure, we were having fun in the pool, in the music building, at arts and crafts. We were also building our self-advocacy skills, discovering our independence, and finding our identities.

I would love the opportunity to escape the adult world and return to summer camp for a week with my friends. How relaxing to have help just arrive whenever I need it instead of recruiting, training, scheduling and managing my personal assistant staff. What I wouldn’t give to spend another week with Jen, who passed away almost ten years ago. There are so many times I long for her wisdom and guidance, the advice she used to dole out so freely during conversations in front of a bathroom mirror while I stood brushing and styling her long blonde hair.

Children with disabilities still go to summer camps across the country. I am depending on this young group to join the disability movement and move us forward towards equality. But this summer, I hope they just enjoy the freedom of being a camper with their friends.

Thirty Days of Thanks Day 11 – My Living with MD Friends

As soon as I knew my trip to Australia was a sure thing, I began to plan. As I have mentioned before, travel logistics for the disabled adult are more complicated and time-consuming than for most non-disabled adults. While some people may be able to just get up and go, or have flexibility of flights and destinations, I require more advanced consideration.

I had been to Australia twice before my most recent trip, but for each of those visits I was using a manual wheelchair. I fly frequently within the United States using both a manual and power wheelchair. But my trip in March was the first international trip using a power wheelchair.

I began my research online, utilizing the connections I have made through a Facebook group called Living with Muscular Dystrophy (LWMD). The group is a private peer-support group of adults from around the world who are living with any of the neuromuscular diseases covered under the umbrella of Muscular Dystrophy or ALS. Group members discuss many topics including personal care assistants, medical equipment, travel, health care, and employment. The goal is to help one another navigate a world which is not always accessible for our needs.

Some of my first connections were with group members from Australia. Julie was helpful in answering questions about accessibility in Sydney. She explained the train system and offered feedback on potential options for finding a wheelchair charger. Sadly we were never able to meet in person while I was there, but this just means I have to make a return trip.

So many people offered tips on traveling internationally using a power chair. Cory Lee and Alice answered questions and referred me to others who might be able to help. Carol put me in contact with several people in Australia who provided information about renting an accessible vehicle and traveling within Australia.

There were others who had ideas about how to charge my chair, accessible restaurants, and where to find family assist restrooms in the airports we would be visiting. All of this knowledge made me more comfortable as I traveled.

There is much literature about the value of peer networks for marginalized populations, including people with disabilities. I have been blessed to have access to many peer support networks throughout my life. Because LWMD is based on-line, people who may have difficulty leaving their homes due to disability, lack of transportation or lack of adequate personal care are able to participate in virtual discussions. The collective knowledge and creativity of this group astounds me. When one group member asks a question, people are quick to respond with suggestions and ideas. As a rule, people with disabilities are some of the most creative people I’ve ever met. We have to be. It’s how we adapt to a world not designed for our needs.

To my fellow LWMD-ers – thank you so much for all you did to help me prepare for my trip earlier this year. I appreciate your insights and your information. Your creative ideas were perfect and you made problem-solving a breeze. When I needed support, you were my virtual cheerleaders. And when I had success, you celebrated with me. I am grateful to be a part of this unique family.