I remember the iron lung. The overwhelming feeling of isolation. Of separation from my family. I remember the fear that would sweep over me at night. This intimidating contraption of metal and machinery became both my savior and my captor. Within its claustrophobic confines, I discovered a strange dependence on a device that relentlessly pumped life-giving breaths into my lungs. The rhythmic hissing and the vibrations served as constant reminders of my precarious state, while the limited view of the outside world fostered a yearning for freedom.
 

Slowly, my situation began to improve. Moments of despair, frustration and loneliness were juxtaposed with flickers of hope, resilience and human connection. The fear of the unknown loomed large, but it was the unwavering support of family, friends and healthcare professionals that provided the emotional anchor to persevere.

Mundane tasks became monumental feats as I navigated a world where simple movements were no longer taken for granted. Every activity, from eating to bathing, required assistance, fostering a sense of vulnerability. Most people, kids especially, are particularly resilient when given time to adjust, though. And in time, I, too, learned to adapt. I found new ways of doing things. I learned how to ask others for help when I needed it.

And, eventually, I recovered enough to leave the iron lung behind. Each breath taken without the assistance of the iron lung became a small victory, an affirmation of the indomitable will to survive. The camaraderie formed with fellow patients created a support network, fostering hope and fostering a sense of belonging amidst the isolation. And, eventually, I recovered enough to leave the hospital and return home to my family.

It wasn’t quite as simple as that, of course. There were surgeries and a lot of rehabilitation. I learned later from my parents that there were other parents in the neighborhood who didn’t want their children playing with someone who had polio, incorrectly believing that I might still be contagious. But, in general, I went on to have a fairly well-adjusted childhood. I excelled at school, went to college, married, had children of my own, and put together a fulfilling career.

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I wouldn’t say I never thought about polio in my early adult years. I had noticeable muscle atrophy on my right side. I was sometimes self-conscious about it when wearing summer attire or when swimming at the pool or beach. At the time, though, I viewed polio as part of my past, like a childhood accident. Yes, there were physical reminders, but I had successfully overcome those hurdles. I had “beaten” polio and didn’t need to worry about it anymore.

That was, as you probably have already guessed, not the case. I first got an inkling that something was wrong with my breathing when I was in my forties. I was lucky to have a good family physician who recognized all the hallmarks of respiratory insufficiency and referred me to a good pulmonologist. It was that pulmonologist who first recommended I start using a BiPAP to assist my breathing at night.

I was ambivalent at first. It felt like a step backward. I was fearful of how bad things might eventually get. I don’t remember the exact model I started with, but I remember it being heavy and clunky compared to what’s in use today (I currently use a Trilogy). However, my symptoms did improve. In some ways, it was comforting. Over time, I came to accept my new normal, knowing it was crucial to my well-being, even if being on home mechanical ventilation does come with its own set of daily challenges.

My emotional journey through these changes has been, perhaps, more significant than the physical. Coping with physical limitations and the constant reliance on technology can be overwhelming at times. However, through the support of my loved ones and the inspiring connections I have made with fellow polio survivors, I have discovered a wellspring of emotional resilience within myself. These connections have formed a community of understanding, encouragement, and shared experiences, reminding me that I am never alone in this journey.

My journey as a polio survivor on home mechanical ventilation has shown me the importance of advocacy and raising awareness about polio's long-term impact. By sharing my story, I aim to dispel misconceptions surrounding disabilities and create a more empathetic and inclusive society. It is through sharing our experiences that we can inspire change, promote accessibility in healthcare, and encourage further research and advancements to enhance the lives of not just polio survivors but all those who use home mechanical ventilation.

As I reflect on my personal journey as a polio survivor on home mechanical ventilation, I am filled with gratitude for the indomitable spirit that resides within me. I have learned to embrace life's challenges and refuse to let physical limitations define me. Through advancements in technology and the unwavering support of my community, I have discovered that no obstacle is insurmountable. My hope is that my story will inspire others to cultivate empathy, support inclusivity, and advocate for accessible healthcare, ensuring that every individual has the opportunity to live a life of dignity and fulfillment, regardless of their circumstances.