This is kind of what it’s like.
She woke up one morning, made herself some scrambled eggs, and came to the conclusion that her lungs were no longer functioning. Or, more precisely, she corrected herself, not that they were no longer functioning– they did still seem capable of pushing air in and out, oxidizing her blood and keeping her organs operational– but rather they were no longer functioning on their own. Since she awoke, she had to keep up a steady mantra of IN OUT IN OUT to ensure her lungs cycled through inhalation and exhalation. She hadn’t noticed at first, going through morning ablutions, but at the moment when her toast popped up and she wondered whether her eggs were done yet and she heard what sounded like her name from up the hall, she lost the thread of her INs and her OUTs, and realized her error only when her hand came down on the cold granite and her vision faded as her lungs collapsed, a parachute heap under her rib cage.
IN OUT she reminded her lungs. IN OUT and IN again. She regained her vision, but with it an awareness: her lungs would not work without her deliberate prompting. IN OUT IN OUT she instructed, and her heart sped up as she considered what could possibly have gone wrong. She followed her thoughts to corollaries and consequences, and tightened her grip on the counter in fear– what does this mean? Is this death? Help! She needed help!
In her fear, she began to hyperventilate, but only in externalities and form– she huffed, but her lungs did not puff, and did not compensate for her increased need for breath. Again she stood at the edge of asphyxiation, the encroaching threat of which pushed her ever closer as she gasped for breath that would go only as far as her throat.
Death, you are dying, she thought, death! You must be calm. Calm. Breathe. IN OUT IN OUT. And her heart rate returned to normal.
But her lungs did not, and never would; IN OUT IN OUT she chanted for the rest of the day. Talking at first was nearly impossible, as she struggled to manage forcing breaths in between her words. Exertion and exercise took careful deliberation and forethought, and she could never again even run up the stairs without first calculating whether she had taken a deep enough breath, and whether she would be able to maintain oxygen levels for the length of the stairwell.
Over the next few weeks she learned to measure her INs and her OUTs in microseconds and estimated CCs of ingested air. She learned the ratio of oxygen to air at different elevations, and she learned to feel the pressure in her chest and how to anticipate the times she would be out of breath.
But even so she could not cease her vigilance. IN OUT IN OUT became the soundtrack to her thoughts. MORE IN, 1/2 OUT, IN OUT 12CCs SLOWER SLOWER FASTER IN OUT. A constant awareness of breath and breathing, a constant ache for the forgetfulness and thoughtlessness that she used to feel for air, a constant wake for the autonomy of her lungs. IN OUT IN OUT. And Oh God, she thought, just don’t let it be genetic.