[this is republished from my article on Spinalpedia]
The first word that comes to mind about singing while on a ventilator is FRUSTRATION! It is frustrating because I have been paralyzed for most of my life. I’ve been singing since I was five years old but my voice has gone through constant changes. I think I finally understand my voice and what I need to do to sing properly and healthier.
In order to sing to the best of my ability, I need to adjust some of the settings on my ventilator, mainly the tidal volume and the pressure support. Sometimes I even need to use oxygen from the oxygen tank. I know what some of you are thinking, all this sounds like blah, blah, blah but sometimes it sounds like that to me too. Back to explaining, tidal volume is the force of air that goes into my lungs, my pressure support is how much work my ventilator is doing for me. When I increase the pressure support I can hold the notes longer. When I increase the tidal volume, I can belt better and it feels like there is less strain on my vocal cords.
Last summer I had a diaphragmatic pacemaker implanted surgically into my diaphragm. Hopefully, this can help me one day get off this vent. I’m no where near coming off the vent but singing with the diaphragmatic pacemaker with a certain ventilator mode used for weaning makes singing a lot easier. I don’t have full use of my diaphragm but the pacemaker inside stimulates the nerves so I can belt and hold the notes longer without having to adjust vent settings. I’m in more control when I sing with the pacemaker and it feels so good. All of these things is what I need to do to sing without straining my vocal cords.
I sing all the time to escape and express myself. I have done my research and I have met doctors that have never seen a person sing on a ventilator. I feel very fortunate, happy and blessed to be able to have the ability and gift of singing. Singing makes me feel FREE!