Every day, I try hard to be upbeat and happy, but lately, I am struggling. I desperately want to leave this bed of mine to explore the world just beyond my reach. I want to breathe fresh air, feel the wind in my face and be foot-loose and fancy free. But, I am confined to this bed of mine for many hours every day. Oh, I can break away from my bed, but in doing so, I must disconnect from my ventilator. My ventilator is not portable. It needs to operate on a flat surface and has to be plugged into the wall for its power supply. So if I desire to go anywhere, I must do so without my ventilator.
Breathing without my ventilator feels as though I am breathing though a plastic bag--my body strains with effort to gasp for tiny amounts of air. I can fight through the fatigue for a little while, but soon I become very light-headed. Confusion and agitation take hold of my brain. I want to scream that I cannot breathe. Where did all the oxygen go!? Oh, the panic which grips my body! My breathing grows ragged. I start gulping for air. I fight the urge to start sobbing uncontrollably and try my best to hold back the tears welling up in my eyes. All too soon, I must retreat back to my bed and hook back up to my ventilator.
Now, I wish when I hooked back up to my ventilator it would be like a magic switch which tells my body it no longer has to panic. But, it is not. Instead, I must fight through the continued rounds of panic. I must fight the urge to rip off my full face mask because my body is screaming at me that it cannot breathe. "Get this mask off of me! I need to breathe!" But ripping off the mask, which uses high pressure to force air into my lungs and thus makes it easier for my body to breathe, leaves me back in a low pressure environment where breathing is much, much harder. I must ignore the constant screams for help which race through my mind. Fatigue urges me to go to sleep, but my rapid breathing prevents my brain from shutting down. I try to take deeper, longer breaths, but my body overrides my efforts. Over the next two hours, the panic slowly leaves my body. My tunnel vision recedes, the room grows brighter, and the mass chaos in my brain drifts away.
As my brain is able to think again, restlessness and boredom take hold. I am thirsty or hungry or need to go to the bathroom--all tasks which require me to disconnect from my ventilator and start the above process all over again. As I think about everything I must endure once I attempt to breathe on my own, sadness takes hold of my heart. As much as I want to leave my bed, I do not want to have to endure the fight to breathe. This is the challenge I face every day. "When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you. When you walk through the fire you shall not be burned, and the flame shall not consume you." (Isaiah 43:2)
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