Wearing My Vader Mask at Night

Every morning when I wake up, I feel like my nose took a beating the night before. Grogginess is one thing, but when you factor in a BiPAP machine, it adds an extra layer of discomfort. As soon as I awake, I can’t wait to get in the shower and let the water wash over my face. 

Alas, there’s a certain level of nuance when it comes to wearing a Darth Vader mask at night. On the one hand, my BiPAP helps me sleep better and regulates my respiratory levels. Yet, it can also cause skin irritation and discomfort at night. I admire Vader for his ability to wear a full face mask around the clock and still have enough energy to conquer the galaxy. That takes endurance.

BiPAP machines have been a part of my medical routine since I was a kid. Even before I was diagnosed with sleep apnea, I had other respiratory issues as a result of my SMA. When I was younger, these things were giant devices that covered most of my face. I regularly developed sores across my face from cosplaying as Mad Max every time I went to sleep. 

It was a prime example of an SMA conundrum. I knew a BiPAP was essential for my health, but it was also ridiculously unpleasant to wear for eight hours at a time. Being the stubborn kid that I was, I often pleaded with my parents to take the stupid thing off and give it back to Mel Gibson. 

As my sleep issues persisted throughout the years, my BiPAP was like that annoying friend who would never go away. We had our grievances with each other, but ultimately, I knew that it wanted what was best for me. 

The saving grace was when manufacturers finally made the devices smaller and much more bearable to wear. Instead of full face masks, the newer models were just nasal pieces connected to a tube. They slide on much better than the Vader models, and I find them easier to adapt to. 

Still, any BiPAP mask comes with its difficulties. As previously mentioned, my nose gets pretty sore in the mornings when my caregiver removes the mask. I also often struggle to get comfortable at night, especially when I sleep on my side, and the BiPAP strap presses against my ear. 

Do I experience maximum comfort or breathe well? That is the question. 

I owe a large part of my health and well-being to my pesky BiPAP machine. For all its frustrating nuances, it does kind of keep me alive. Since I had respiratory surgery in 2011 to clear the airways in my throat, I’ve been able to breathe significantly better at night, but not without help. 

Living with SMA comes with a lot of specialized equipment, at all times of the day. Sleep is one of the more complex and challenging aspects of my life, but I probably wouldn’t rest at all without my Vader machine at my side.

***

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.