How full-time use of my BiPAP machine gave me a new lease on life
Learning to be grateful for every breath I take after my brother’s passing
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On Feb. 18, I attended an ART:DIS event at the Singapore Art Museum (SAM) to kick off this year’s Arts and Disability Forum. It was a panel held with Project Art Works (a neurodivergent artist collective based in Hastings, England) to discuss the creative and diverse value that both organizations can bring to the table in Singapore’s disability-inclusive arts space.
Before it began, my live-in caregiver asked me if I could move my motorized wheelchair closer to where she was seated so that she could better attend to my physical needs during the event.
A moment of disastrous panic
Unbeknownst to me, her chair was right behind me. I recklessly reversed straight into it, causing my ventilator’s hose to rip apart and spoil.
As a full-time ventilator user due to the progression of my Duchenne-associated restrictive lung disease, I depend entirely on my BiPAP machine for respiratory function and physical survival.
Both my caregiver and I were in shock. I was left gasping for air as she frantically dug into her bag containing a backup ventilator, looking for a spare hose to replace the one I’d just broken.
She was relieved she had packed one just before we left home, which she doesn’t normally do.
With the assistance of a SAM staff member, she connected it to my BiPAP machine and got it to work again. We could finally breathe a huge sigh of relief!
It took me over a week to recover from that traumatic incident. I’d last experienced a similarly harrowing ordeal when I was hospitalized with dengue last July. In that event, my ventilator’s power cord suddenly disconnected as my caregiver was transferring me to the hospital bed.
When I started using a BiPAP machine
In April 2011, I had an episode of severe pneumonia at home after five days of dealing with an upper respiratory tract infection. I completely blacked out while having dinner with my dad.
Fortunately, he’s a trained medical doctor who’s run a general practice for over three decades. My dad rescued me by manually extricating the phlegm that was obstructing my breathing passage and causing my oxygen saturation to nose-dive, as we didn’t have a cough assist machine then.
After that first near-death experience (the second was when I miraculously survived dengue last year), my neurologist at Singapore’s National University Hospital, whom I’ve been seeing for regular medical consultations since I was 8, diagnosed me with restrictive lung disease. I also started using the BiPAP machine to sleep every night, on the advice of my pulmonologists.
Transitioning to full-time ventilator use
Eight years later, just before my brother, Isaac, passed away from Duchenne-associated cardiomyopathy, my condition had progressed to the point that I no longer had the stamina required to breathe on my own and sit up in my wheelchair to work on college assignments simultaneously.
I decided to start using the BiPAP machine more frequently during the first semester of my third-year college studies. I was on a reduced academic load following a decline in my physical health, including issues with anxiety and insomnia. Along with some changes to my deflazacort steroid medication, my increased BiPAP use helped me complete that semester’s summative module coursework.
Using the BiPAP machine more frequently was especially important for my physical well-being in the aftermath of Isaac’s death. It was the first time I’d attended an immediate family member’s wake, and I needed to be present at the funeral parlor three days in a row, for three to six hours each day.
Finding hope in a mask of pity
While my mental health and emotional well-being have suffered like never before since Isaac died, my physical and social function have vastly improved thanks to 24/7 BiPAP use. I never dreamed that this would be my reality when I first started using it at home in 2011.
Back when the idea of assisted breathing was still alien to me, I viewed my ventilator as most people might see it: a mask of grief and pity. I couldn’t have been further from the truth!
Without the BiPAP machine, I wouldn’t even be here writing this column, let alone have my dream job at an assistance dog charity or have scored a high distinction on a paper about positive psychology. I have made many new friendships and rekindled long lost ones thanks to the newfound energy and strength it’s given me.
If there’s one thing my BiPAP machine has taught me, it’s to be grateful for every breath I take.
Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.
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