My Machines and Me

I live my life surrounded by machines. I wake up every day wearing a soft nasal mask, which is connected by a large tube to my BiPAP machine. The steady flow of air pumping through the tube is the first thing I hear in the morning.

After my BiPAP machine is turned off and the mask is removed from my face, I’m wrapped inside a cocoon-shaped sling and lifted into the air by an electrical lift. The lift is attached to a rail on the ceiling of my bedroom, and my caregiver uses it to slide me across the room toward my power wheelchair. Minutes later, I’m sitting on my bathroom seat with another tube connecting me to a different device. This is my Vest Airway Clearance System, designed to help loosen any secretion in my lungs. It serves as a companion to my cough-assist machine.

Heck, even my toothbrush is electrical!

Upon completion of my morning routine, I’m back in my wheelchair with a tray in front of me so that I can work and a highly advanced robotic arm mounted to the side. I operate this device with my joystick, and I can turn the lights in my room on and off and use my Spotify account with simple voice commands — thanks, Amazon Alexa. I also acquired an Amazon Fire Cube recently, which allows me to control my TV through voice-activated technology.

At times, I feel like I’m Darth Vader, the Terminator, Robotman, Cyborg, and the android from “Ex Machina” all wrapped into one glorious science fiction spectacle. Given that 2019 is the year that movies like “Blade Runner” and “Akira” are set in, it makes sense that technology plays a vital role in my everyday life.

As an adult with a physical disability, I would be much more dependent on other people without these technologies. Devices like my robotic arm and my power wheelchair compensate for a lot of the abilities that spinal muscular atrophy has robbed from me. When I think about the technologies being developed today, it’s amazing how much more independence they give me.

Still, as reliant as I am on technology, sometimes even I need a break from it. I spend so much time during the week sitting at my desk and staring at a computer screen that I forget the benefits of things like sunlight and fresh air. On some days, the majority of my social interaction is done through social media.

In order to keep myself from being too reliant on the technologies that surround me, I’m trying to make some adjustments in my life. Last week, I met a friend for lunch at a bagel shop by my house, right in the middle of a workday. A few days later, I went to a show with my brother to see the comedian Demetri Martin perform live. As of this writing, I’m considering taking a day trip out of town soon.

Technology is great, but I feel a more powerful sensation with simple things like face-to-face human interaction. I treasure the moments I spend in a pool each week for aquatic therapy, moments when my body isn’t attached to some sort of machine. Instead, the only thing that surrounds me is the ebb and flow of the water. Like most things, balance is important when it comes to my relationship with technology.

Nevertheless, I will never pass up an opportunity to show off my robotic arm anytime I’m out in public.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.