a person with sma dealing with incontinence and independence

Embracing Independence: My Journey with Incontinence

Growing up with spinal muscular atrophy (SMA) and relying on a wheelchair, my daily life was an intricate dance of navigating the challenges that most people never even consider. One of the most personal aspects of life, the simple act of going to the bathroom, became a complex routine that I had to master from a very young age. In this deeply personal journey, I discovered the unique freedom that comes with embracing incontinence, and how it transformed my life in unexpected ways.

Needing assistance to use the restroom

Unlike the experience of the average person, going to the bathroom was never a private affair for me. I needed assistance, and this reliance on others meant I had to adapt to a level of vulnerability that was both challenging and essential. For most individuals, the decision to use the restroom is a spontaneous one, but for someone like me with SMA, it required careful planning and coordination.

My primary caregivers, initially my mom, and later a personal aide during my school age years, played a crucial role in helping me meet my basic needs. I had to become less shy and more assertive when it came to fulfilling these needs, even at a very early age. It wasn't merely about meeting a physical necessity; it was about asserting control over my life.

Scheduling my bio breaks

While my peers could heed nature's call whenever and wherever, I had to stick to a strict schedule, one that I albeit often created on my own. I often endured discomfort by holding it until I returned home from school. The thought of having someone else assist me with undressing and wiping at school made me feel self-conscious and exposed. Even though my personal aid was a lovely woman who would do anything for me. It was an internal struggle. As a result, I trained my bladder to cooperate with my rigid timetable, leading to just two restroom breaks a day. Once in the morning before school and immediately when I came home. While most people take bathroom visits for granted, I had to plan mine meticulously.

In the world of SMA, even the seemingly simple act of going to the bathroom requires intricate planning. It's not just about anticipating your body's needs; it's also about making sure you have the necessary equipment and assistance on hand. This level of preparedness extended to knowing the locations of accessible bathrooms when I was out and about. If I required the use of a hoyer lift, the coordination became even more complex. To put it simply, my daily life involved a continuous calculation of "pee math."

Injury led to incontinence

In 2018, an unfortunate incident occurred when I fell out of my wheelchair (wear your seatbelts kids!)  and sustained further damage to my spine, resulting in a bladder injury. This injury rendered me incontinent, and I had to start wearing adult diapers. At first, I felt humiliated. Who wants to be 28 years old and in diapers?

Freedom from pee math

However, as I healed, I began to realize how much easier it made my life. No longer did I have to worry about rushing home to relieve my bladder, and I could drink as much as I wanted, whenever I wanted. It may seem like a minor thing to many, but for me, it represented newfound freedom. Something I think everyone with SMA strives to hold onto.

I'm not suggesting that everyone with SMA should aspire to become incontinent, as that's not a desirable outcome. However, wearing diapers can have significant benefits. In my case, I found a way to turn a negative situation into something semi-positive. It allowed me to reclaim some control over my life and enjoy newfound independence.

Of course, being incontinent comes with its downsides, such as chafing, sores, and the occasional urinary tract infection. The added mess of being cleaned up after going.  It took time for me to fully embrace this change and accept that it was okay for me to use diapers as a necessary part of my life.

An opportuntiy for greater independence

I can wholeheartedly recommend diapers for individuals with SMA, especially when traveling on long trips or spending extended hours out and about away from home. These seemingly small items can make our lives significantly easier in the face of the numerous challenges we continually encounter.

My  journey with SMA and incontinence has been a lesson in resilience and adaptation. Some days I still have a hard time being an adult using diapers, but for the most part I think of it as a good thing. It has taught me that freedom isn't solely about physical mobility; it's also about embracing the circumstances that life throws our way and finding ways to turn them into opportunities for greater independence. Through the trials and triumphs of my daily life, I've discovered that true freedom comes from within, and it's a journey worth undertaking.

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