In the summer of 2016, I learned that a very dear friend of mine had passed away. She had Mitochondrial Disease and died from respiratory failure. She never got a tracheostomy tube. Instead, she fought to her death using a BiPAP machine, which in the end was not strong enough to sustain her. She needed a tracheostomy tube.
I do not know many of the last details of my sweet friend’s death. I do not know if my friend, Milly, was advised she needed a tracheostomy tube, or if her medical team thought a BiPAP machine was all she needed.
In short, I was deeply grieved to lose such a dear friend.
On August 1, 2016, I decided I wanted to start a chronicle of my adventures in honor of Milly. Milly had a YouTube channel. I wanted to continue her legacy. The account was not supposed to be of any importance—just my daily life with Mitochondrial Disease. I was ambivalent if I wanted to be like my friend, Milly, and have a YouTube channel, or if I should just do a blog. In the end, I decided to do a blog. I did not have a camera, which was the ultimate tipping point of deciding against doing YouTube videos.
A few weeks later, my breathing did a dramatic nosedive. I was thrust into the world of medicine, begging doctors for help. I could not breathe. My blog soon became a source of solace when my world seemed to be crashing down. But together, we pulled through many harrowing situations.
Eventually, in April 2020, I did launch a YouTube channel. I had been given an old computer which had a built-in camera. The focus of my YouTube channel was educating people about
tracheostomy tubes and ventilators. I always think about my friend, Milly. If she would have found my YouTube channel, would a video of mine have helped saved her life? I will never know.
Instead, I try to honor my dear friend in all my videos and blog posts. May her memory be a blessing.
(For anyone interested, I just joined Instagram. My username is lifewithavent if you wish to follow me.)
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