Hawken Miller, who lives in Newport Beach, California, was diagnosed with Duchenne muscular dystrophy at age 5 in 2002. He describes how he eventually embraced his BiPAP therapy after years of struggle.
Transcript
So I was rebellious in one way in following this protocol for wearing my BiPAP machine at night. So I got that machine when I was about 18. And it was only last year that I consistently used it for the whole year, every night.
And the biggest challenge for me — I mean, it’s mental too — but to have something on your face and to be able to relax and have something breathe for you. I’m also a very light sleeper. I would try for a couple hours and just, like, take it off in the middle of the night and give up.
And so it was really a process of 10 years to try to get used to it. And the thing that changed for me in my head was, I want to live the longest with Duchenne, and I want my organs to be functioning correctly. I want them to get the oxygen they need. At some point, I’m not willing to risk my life by sacrificing a little comfort at night.
And now I’m super used to it, and it’s just part of how I sleep now. In fact, when I don’t use it, I get a headache throughout the day and I’m like, “Wow, OK, so using this really does make a difference.”
So sometimes you just got to really dig deep and know that this is for the best — for you and for your loved ones too — because you want to be around for as long as possible. So it really was the toughest thing that I’ve had to do.
Especially now that my breathing isn’t as strong as I’ve gotten older. This has really come in and helped me with that and given me more oxygen at night and just more energy throughout the day.
