Saturday at Starbucks. Mostly adults, as it's too cold for kids to be outside. There's a Realtor meeting clients to review houses to visit, two buddies talking football, and three girlfriends catching up. My bangs are way too short, and the saggy, dark bags under my eyes are huge; I look like a freak. Nails look great, though. Color: OPI's "Kreme de la Kremlin." (But of course!) Concentrate on the page, don't look up, for no one else in the place has bags under their eyes; old, young, male, female - doesn't matter.
Car outside has a UC Berkeley license plate holder (Go Bears!) and for a quick second I flashed back to college, journaling at Sufficient Grounds on Durant with Korie Beth and Karen. There was another cafe we frequented, with fantastic salads and homemade breads, further down Telegraph, just across from Cody's Books. Wonder if any of our prior hotbeds of creativity are still around? Then as now, we could write for hours, milking one cup of coffee for all it's worth, and occasionally taking three steps across the breezeway to splurge at Yogurt Park and perchance super-splurge on a topping - carob chips.
All those small, narrow-ruled spiral notebooks I filled in the 1980's are in storage pods in Bensenville, along with my hopes and quashed desires. Korie Beth and I have an agreement that whoever dies first, the other edits and publishes her journals. The way she writes, magically and prolifically, I doubt I'd be able to complete the task before I expire. But I'd damn well try.
I feel guilty for dreaming and desiring a future when I should be focusing on the here and now. Perhaps I should go to storage and get out everything of value I can sell: musical instruments; golf clubs; artwork; needlepoint; ice skates; fine china; kitchen appliances. The resultant ca$h would probably not be worth the effort, but it would be a true facing of my Bag Lady fears, a complete surrender to these damn diseases, allowing them to strip my soul.
Is one truly alive if one is chronically ill? There is a possibility I may never get well. How will life be if that happens? For those of us with invisible illnesses, we feel as though we're living on the fringe. We can't completely embrace life like a kick-off and run down the sideline full throttle a la Devin Hester because we are on the eternal I.R. list, members of the team of life who look the part of a major leaguer but can never suit up. We appear to be in playing condition, but our insides say otherwise.
I awake every morning ready to fight whatever disease or life throws at me. I don't recall ever waking up ready to play or celebrate; from the moment my feet hit the floor every day I'm on defense. Bet Donald Trump doesn't wake up that way. I bet he opens his eyes and thinks whether to pass or run, or if a draw play will stymie his opponents long enough for him to score. His weltanschauung is not one of confrontation; it's all get up and go: "What can I create/deal today? How can I achieve a higher profit? What exciting thing does life have for me to discover today?" My usual morning thought is, "What pain or trauma will life throw at me today? How can I keep my head above water and make it through until tomorrow?" At bedtime there is a deep sense of relief that I survived (not thrived) another struggle, tinged with worry and anticipation about the morning hence. That is, in true essence, the life of an alcoholic's child. I can see it so clearly, plainly. My daily outlook at 48 was formed when I was 8, or even younger.
When the yelling stopped at night, usually by 10pm, my body would finally exhale. For the next eight hours I'd have peace and quiet, but unfortunately I'd be asleep for most of it. At 15, when we moved from the roomy house to the "intimate" condo, I was unable to function and my grades fell; at 17 I succumbed to clinical depression and wanted to die.If I had jumped off the balcony and broken my neck, my parents would have been off the hook, for with me dead they would never be held accountable for how their drinking inflicted my psychological injuries.
Dad knew ("Oh sweetheart, what have we done to you?") but he never turned the light toward himself. Like him, I carry a great deal of fear of the unknown inside my soul. What could be so horrible in there? What am I, and Dad, and God knows how many past generations of our family suppressing? Is this learned behavior with no bases? A protestant work ethic, existential angst screaming our worthlessness? I refuse to believe that God has so little a purpose, or no purpose, for the Soul. Or for life.
If all life, animal, vegetable and mineral, is precious to a greater entity - as all my studies lead me to believe - then I cannot hold that thought and higher mind are worthless. If there is a source of unconditional love, wisdom, and existential truth, it cannot be inaccessible or remote. It must be present and purposeful in every life, every person, every tree, every squirrel. The web of life, interdependency, quantum physics, molecular sharing of atomic substructures, whatever one chooses to call it - is a direct source to the essence of life.
We make Gods in our image, deify beings to rule over us, so when we fuck up we can utter, "I'm not worthy" and be let off the hook: mea culpa, hail Mary. What if we take the great gamble, and say there is no higher being, judgement, or need for accountability in regards to an afterlife? What if "God" is pure spirit or essence? Then we are solely accountable for our trespasses: nothing will forgive us and make things all better. The Catholic Church, and truthfully most organized religion, hands out band-aids for guilt. Alcoholics Anonymous (AA) has the right idea, that we must personally atone to the person/s we harm; we must set the Universal Spirit back in balance by action. If you break it, you buy it. Damage something and you must fix it, it's the same for porcelain as for people.
So what does all this have to do with chronic, invisible illness? I may not understand why I'm alive, or if my presence on the planet means squat to anyone. However, the fact that I'm here and bleed means that I am in the web of life and part of the Essential Balance. I might be a teeny-tiny cog in the huge clock-like workings, but without me the clock won't run. All others, ALL others, are cogs as well. All gifts are equal to the great spirit, whether we think them worthy or not.
That's why I can't believe in a Supreme Deity who/that judges and convicts souls. For good to exist, evil must as well. I want (need?) to believe that there is a purpose to physical existence, and that all the mental and physiologic illness has a means of resolution. If it doesn't suffering could become too pronounced, and horrible, to endure. Belief in a Higher Essence/ Spirit/ Being/ Source without divine status is both empowering and frightening, because I alone am responsible for me, and there is no other who/that can fix things. My choices have consequence, both good and bad. Unlike the Children of Israel wandering in the wilderness millennia ago, God is not feeding me manna, pointing my way with a pillar of fire, giving me supernatural signs, or ultimately showing me the destination of my life. Everything, plus and minus, falls to me, like it or not.
Constant scribblings on this topic over many, many years are my trial and error to craft an articulable message. Early on my personal struggles focused on the psychological, for even as a pre-teen I felt a different reality in my heart than that dictated by the Christian (Protestant) Church. Today, putting it down on paper in terms a theologian or philosopher can understand is daunting; how does one account for 5,000 years of religious ideas, and arrive at an understandable, contemporary conclusion?
Chronic and invisible illnesses are the overriding roadblock to the completion of my message: when I get close at least one of the cylinders in the carburetor of my brain fails. Full to the brink with antibiotics, antidepressants, bacteria and parasites, the fuel of life in my mind and veins becomes too polluted to ignite, and it feels as if life has turned to sludge. I may be a late model, in disrepair and backfiring loudly, but the spark is still in me - the fact that I'm alive is proof. As long as the spark is within, there is possibility.
By whose standards should I gauge my life: Donald Trump's or Harold Kushner's, the Realtor's or the Rabbi's? In the end, will my life be judged a failure because I didn't use my spark to raise a building in Chicago's Loop with my name on it? Or will it be a success because in the face of adversity I thrived and kept my spark alive?
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