A Life Apart

I can't be certain whether anything approaching the idea of "normal experience" exists. (Please enlighten me if a life of "normal experience" could apply to you. I am genuinely interested.) I am certain that there is a beauty and a uniqueness to each individual's perception of his lived experience and the world that each person paints in his mind.

Maybe there could be assembled a list of common phases in a person's life. In the U.S. middle class - or what was the middle class - there are certain trends: e.g. general attendance at an elementary school, high school, and college or vocational school in many cases - these form the matrix of experience.

We're all familiar with the feeling of invincibility or immortality - the near ignorance of change that almost completely defines what youth is: "I have all the energy and all the time in the world".

I think that's where I fell off the tracks, or where my car detached from the train and trundled down another course. Being diagnosed with an autoimmune disease at 13 didn't really phase me. The disease was somehow distinct from who I was. It was something for my mother to be concerned about. I could continue in my blissfully devil-may-care worldview until I couldn't anymore.

It wasn't the only medical issue I developed at a young age, however, and little-by-little, these slight annoyances became major hurdles to "normal" life. I think I dissociated. I think I was a bit shocked that - given my charismatic-style Catholic upbringing during my teenage years - God wasn't just healing me. I think I just assumed that these little inconveniences to my everyday affairs would eventually fade away and I'd be as robust as ever. 

But I had a bad knee (ostensibly a growth-plate issue, but joint problems were part-and-parcel of my immune disorder) by age 15, a cross-bite by around the same age that eventually required surgery, and the immune disorder was chugging along, a constant friend. Perhaps that's why, when I reached blackbelt, I quit martial arts. Maybe I was already ticking off a bucket list and felt the exhaustion of a completed task. That was at 16 years of age.

At 29, I'm fairly resigned to struggling in a quiet way without really having an end in sight. What I experience - what many like me experience - doesn't lend itself well to conversation. My condition isn't recognizable - necessarily - to the naked eye, and so expectations are always hard to manage. 

Someone reminded me today that maybe accepting this cross wasn't God's plan. Maybe he does intend to heal me. But - God have mercy on me if this is pride speaking - I don't need that. I don't need to be healed. It's not necessary to my faith in God. I have some understanding of the importance and the value of suffering, and, in a sense, there's a responsibility that comes with that - to suffer well.

I don't suffer particularly well. I do complain. Sometimes, I have a noble moment. I might try to take advantage of the mechanics of salvation and jokingly wheel and deal with the Man Upstairs about "how many souls we're getting out of Purgatory today". Being the Author of irony, I'm sure He doesn't think I'm funny. I'm also sure He smiles.

When I worked in finance, I had little enough in common with my peers - late nights, the insane hustle, the "running a business" vs. "receiving a paycheck" dynamic. However, I did share some values with them: providing and improving a comfortable home for my family, trying to increase income each year, being an informed consumer. I'm getting a little nauseous. 

When I found I could no longer work, my little spot of earth became an island in some ways. Although, I was - and am - a sort of spectacle. I'm the "it can happen to you" example in many of my friends' and acquaintances' lives, I'm sure. That doesn't so much bother me, if it does enhance the intellectual isolation of my experience.

I don't pretend to know if anyone has ever thought "must be nice to be him - to stay at home all day", but it's something I'd probably have the gall to consider if I were a healthy individual. People in America, especially young adults, have a very hard time coming to grips with the idea of a lost youth or a "stolen youth", the idea of those years that are supposed to be the strongest and best of one's life being the darkest and most dolorous. 

I have a great respect and love for St. Joan of Arc. Her youth, for me, was given, lost, stolen - all of these.

I fancy that I can in someway emulate her by living the "slow burn" - the fire in my case being inflammation that wears away at you slowly.

There's a great deal of peace in this thought for me, though. After all, to be perfectly healthy is now, in some ways, terrifying to me. I don't understand it - waking up without thinking about the way your body is failing. There's a horrific responsibility that comes with good health. Good health makes a person a god.

My friends know how warlike my personality is and how, when I come to a clear conviction about something through reasoning, I have a sincere desire to follow that conviction to its ultimate consequence. My mind is on fire like my body, and now, with my limited physical capabilities, acting on my convictions in a "healthy" way is quite complicated and requires even more thought. 

I notice that I have some deeper inner strength from all of this. In the passive ways that I can resist the soft tyranny of relativism, I now do. In the quiet ways that I can resist groupthink, I do. I say pretty much exactly what I'm thinking most of the time and try to be truthful - whatever pain this may cause - when my opinion is asked.

And so, yes, perhaps my greatest fear is healing well from these do-over surgeries and regaining my health for the first time. Having been through the grinder, the weight of the responsibility of good health seems even heavier, the potency of that power.

Even so, this possible state of "good health" for me will not be the same as it is for those who've not felt so deeply the shade and the cold of mortality. For me, the imminence of death is always there: it is coming quickly, and I am always approaching it - I look to death. It is here with me. It's all around me.

I know there is a primal fear for some in the very moment of death, but the accession of death - its temporary triumph over my flesh - is not something I dread for myself. I don't fear the onslaught of my death. I may fear it as something strange and unknown in the very instant of passing, but I am resigned to death in the sense that I feel no need to run from it or distract myself from it. It lives in me, and I live, in a sense, in death as my young body decays without my consent and beyond my control.

There is something in this nearness to death that makes the material world less comfortable to dwell in and makes mortality seem more reasonable, more just, more hopeful. I can see God in trauma.

I don't know that this will change for me if I regain some semblance of good health. I think that perhaps that slight change in vocation - from passive suffering to active suffering - might entail a duty to place myself in situations in which others have difficulty functioning due to, for lack of better terms, the presence of death and gore. That conviction is new, but it is growing.