Friday, December 3, 2010


Words shift in meaning when your priorities shift.

Nuances of language fade when difficult realities come into stark relief—scoffing at luxuries like wit and metaphor. This experience is this reason I have been unable to post anything to my blog for months... until today.

Today is a day off. A vacation day. An unexpected day because I chose not to push myself when I realized I was not actually strong enough for to a trip to the City for a concert.

Having been sick for about six months now, every unplanned day off was health-related, and every planned day off was carefully scheduled for tasks I had no energy for in my routine. I will certainly not bore you with the long, sordid tale of symptoms and months of inadequate medical care, and long-delayed diagnosis and treatment. I will happily sum up my current situation as one who is being treated for Systemic Sarcoidosis with an excellent prognosis of full recovery from my symptoms within a year or less. Though the disease has no cure, most of the time it becomes inactive and remains so after a thorough treatment with corticosteroids (not the kind athletes take—those are anabolic steroids). Prior to the development of steroid medications this particular disease was always fatal. The methylprednisolone I take is a miracle drug and I'm happy to be on it—mustache, weight gain and all!

So here I am, on the mend, with fatigue as my primary symptom so my activities are very limited. But a day off means a day when this limited energy does not have to go to a job, or a chore, but to my own whim. And suddenly my whim is to write again.

Life's biggest lessons are like strong clashes of color that jar you in a painting you'd rather not even look at. If you force yourself to look, you experience the discomfort the painter intended. Not all art is meant to be pretty. Trouble in life presents itself uninvited, but we can't just look away, no matter how disturbing it is. And with no preparation, the choices we make at that moment set the stage for just how we will manage through it—which could be far easier or much harder depending on those choices. In the end, however, we do manage through it. If we're lucky we bring from that journey beautiful new characteristics, attitudes, and gifts for others we will meet along the way, who may need what we have gleaned from our distresses.

The poor decisions I made early in my illness were quite characteristic of my personal inadequacies. Inadequacies that I would need to correct to recover properly. Inadequacies that, had I learned them without my harsh lessons, would possibly have made me healthier and even prevented my sickness in the first place. That's a hard pill to swallow.

I am a recovering workaholic. With careful observation I have humbly noted that my workaholic disease is self-inflicted and counter-productive. I am also lazy. These two are not at all mutually exclusive. I can masochistically work myself to death simply because I'm too lazy to sit down and thoughtfully plan how to better accomplish the same result without so much spinning on the hamster wheel. It's as if the hamster wheel comforts me. It's easier. Just do it. Pausing to organize, considering alternatives, creating boundaries and schedules and realistic goals... these feel more risky. No one can blame you if you're working your tail off. They can see it. Gold stars all around! But if you stop working so hard and get organized about it, then it's possible you will have missed something. Or if you delegate, perhaps they will miss something, or worse, it just won't get done. Then what?

In my world three tasks are always with me. That which I am occupied with, that which I know must be done next, and that which I am nervous about most because it must be done, but I don't know when it can be done.

That third one is always there. I make sure of it. I live for it. And it's what will kill me if I let it continue to possess me. I can only articulate it because of my illness. I was forced to slow down, listen to what was driving me, and evaluate the stress that brought me down.

Time and again over the past few months, when I should have been resting, I drove myself on, causing new symptoms to appear. If I had any strength in me at all, I'd keep going... And get a fever. Or my right eye would turn bright red and the conjunctiva would swell like a big, clear gelatinous bubble. Or the skin on my back would start to hurt all over like someone had dipped me in acid. Crazy, right? But every time I pushed too hard—the way I was totally used to living—something new would happen to my body that would stop me in my tracks. Yet it took months for me to even start to learn this lesson.

Holding the three tasks in my mind at all times is less frequent now. I am learning to live in the present. The greatest gift in the world. I am reading about it, working at it, and taking the time (not being lazy!) to practice it. It is an amazing gift that carries me through pain, fatigue, and disappointment, as well as celebration. I am learning to simply experience what is. Not fear what will come. Not worry about what won't. Right now. Right here. This is. Not good. Not bad. I am here now doing this, feeling this, experiencing exactly this. And it's sort of like a miracle, whatever it is.

Now I read more. When I have to be in bed, I accept it. I bead or knit. I've made a lot of jewelry and I'm enjoying selling it on Etsy. These things don't take physical effort and allow me to feel human, creative, while still being very simple to do. And I experience them. I thoroughly enjoy placing each bead, or feeling the yarn in my fingers as I knit. And the brand new experience of letting go... of selling my work... is exhilarating. I was sure it would be hard, but it's the opposite. Each piece is made with love, thoughtfully and carefully selecting materials and how they balance each other. And sending them off to some stranger is like giving what I've made a brand new lease on life. Sort of crazy, right? "Be appreciated" is what I think for each creation as it leaves my world, as if I've given that pair of earrings a gift of a new owner, rather than giving the buyer a gift of a pair of earrings!

If you were to go through something really rough in your life I would care about that. And I would really love to know how you grew, what you learned, how that changed your perception of life itself. But not everyone has the desire to share such intimate revelations. I, on the other hand, am a bit of an exhibitionist, I suppose. I discover a gem, like living in the present, and I want to shout it from the rooftops. But someone else discovered it first and shared it with me in a book, in an article. What have you discovered? My desire to know your secret to life is much of what compels me to share my own discoveries.

Like giving you the gift I wish you'd give me, as an example to you. This is completely illogical, however. No one receives any gift thinking that the giver is sending a secret message of their own wish for a gift like that for themselves. Likewise, you may not read into my discovery about living in the present as my desire to hear about your discovery of whatever secret keeps you sane in your chaotic life... but truly, I do want to learn from you. I'm like a quilt maker gathering precious fragments of cloth, so that I can stitch together a blanket of peace and calm to wrap myself in, heal my body, restore my creativity, and know that my world will not only survive without my hamster wheel, but prosper.


George Not Hincapie said...

You are one tenacious survivor.

Greg said...

As one who also pushes through routinely, past the point of the physical signs of stress/fatigue and creative debility, I cherish that you took the time to reveal yourself so... Society and family alike award the problem-solver, the multi-faceted achiever, the energizer... But we do all eventually hit the wall or, if we're lucky, find an offramp and take it, exploring slower by-ways towards our soul's love. I hope that everyone who resonates from their own experience with your words, will find the courage and conviction to perceive the distractions masquerading as "I really should do [x] to gain the [love, favor, recognition, etc.] of [y]", and find the discretion to choose the more graceful, more sustainable, path of living gratefully and consciously in the present. Love, G