Maybe you know the sound of the “CF cough.” It is wet and has a gurgling quality. And when you have seen with your own eyes what is actually doing the gurgling, it can be a repulsive sound. It can cause you to gag, because you know at a cellular level what the sound means. It’s as though you enter into the lungs of the one who is coughing and see the puke green tidal waves of bacteria-laden pus and see the wreckage it lays bare. In sum, it is disgusting.

Now imagine that sound is being emitted from a person you love so deeply that you can actually feel the wetness as if it is your own. This was my experience from the bedroom adjacent to the one where Kathy lay sleeping in her mist tent. The ‘mist tent’ was a concoction thought to be useful for kids with CF to sleep within at night. The idea was that by breathing in air moistened with water and a particular mucolytic that smelled of rotten eggs, the secretions in the lungs that were blocking passage of air would thin out and be easier to expel. A literal ‘tent’ of clear plastic was draped over the bed of the imprisoned sleeper, and a nebulizer was used to inject the therapeutic mist under the tent all through the night.

Both Kathy and Tom were subjected to this as they were growing up before it was understood that this did little to help the cause. In fact, the whole thing was a source of contamination by bacteria that love moist environments, and also happen to be the type of bacteria that tend to colonize the CF lung and lead to devastating infection. I’m not sure how I escaped this particular form of incarceration. Probably it was because as a small child my lungs were not yet overtly showing symptoms of the disease. I didn’t yet have that wet, revolting sound emanating from my still-innocent chest. My ‘childhood’ CF consisted of daily stomach aches and hours on the toilet, sitting amidst an odor that was reviling to a different sense channel.

At night while trying to fall asleep, I would hear her gagging in the next room. It seemed the actual sensation of the cough was coming from my own body as it lay still, trying not to listen but unable to hear anything else. I would try various methods of locating silence, but nothing worked. The best I could do was to cover my ears with my hands, only muffling the details of the offending sounds slightly.

Of course, as a five or six year old child, when your mind tells you that a quality of someone you love intensely is abhorrent, there is nothing to feel but primordial shame. How could I feel this about my own sister? There was something terribly wrong, something wicked about myself that I could absolutely not tell anyone. This was a character flaw that somehow I had to disown, or else how could I even look at myself in the mirror? How could I not but gaze upon that skinny little body with its pot belly and see that it was destined to this same fate as my sister’s and hate it. This body suffered the same fundamental flaw, and there was no getting around this fact.

Really, the only way to tolerate this amount of shame and guilt is to figure out a way to wrangle some kind of control over the body that looked back at me. And of course, to try with all my might to fix her. Fixing her became a passion that would eventually lead me to the gym day after day, to medical school, to the microscope, to therapy, to every complementary medical book I could find in every bookstore I visited. Fortunately, it finally lead me to a meditation practice which has paid off in too many ways to enumerate.

But as an elementary school aged child, there was really only one method of feeling in control of my life, and that was to be the best little elementary school child the world has ever seen. This meant to receive nothing but perfect grades in every subject, and to receive the Presidential fitness award each and every year. This is what a perfect student must do, and it became a matter of life and death that I not fail. Of course this created a constant state of anxiety because this attempted perfection was a house of cards, and I knew that one slip would cause it all to collapse. Then I would have to face my shame.

If I could talk to this tortured child today, from over five decades into her future, I would let her know that this frail looking body with funny fingernails and teeth darkened by tetracycline was not who she was, so there was no need to feel shame. I would describe it to her as like a boat that was carrying her along a river, past the days of having a mother who couldn’t stop crying, past striving to reach goals that she somehow thought might ‘fix’ something that didn’t need fixing. Having a body is lightyears apart from being a body.

But there are lessons that must be learned while believing one is a body in order to understand that this is a complete fallacy. A certain amount of suffering has to occur to provide the impetus to question the belief in the self as a particular body. Young Julie’s shame and guilt served as a kind of rocket fuel in the search for who I really was that occurred much later in life. In addition, the sheer determination and discipline that I needed to endure meditation training was developed during these early years of trying to be a perfect little student. So, perhaps it had to be the way it was. In fact, maybe it was perfectly as it was meant to be.

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