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When I Saw the Adventurous Life I Envisioned Before My Illness Slip Away

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The phlebotomist remembered me. I remembered him, too, because he always missed. I was too polite to ask for another phlebotomist. We exchanged niceties as he slid the needle into my vein. He missed. I whimpered. A few days later a bruise in the shape of Portugal would appear on my arm. It went from black, to blue, to purple and then turned yellow before fading away.

Portugal is bathed in yellow. I once spent a summer sunning myself in the salty blue and yellow of Portugal. I ate sardines and sipped port while watching old men sitting on their balconies going nowhere. My skin turned brown and gold. I walked through forests of cork trees, and cried openly in pubs at the profoundly melancholic Fado music.

That wasn’t so long ago. I think I was already beginning to get sick then. I had bought a bus ticket from Lisbon to Oporto. The city was crumbling in grey decadence. I checked into a cheap hotel, but could not bring myself to sightsee. My hands were going numb. I was so tired that the weight of my bones felt like a burden.

When they told me I would never get better I fell apart. Actually, I didn’t fall apart right away. It took awhile to sink in. But when it did I wanted to die. I was too young. I saw the life I had envisioned for myself slip away. I had spent my early 20s traveling and working like a dog. Could those days be over? How frustrating to own a body that will never let you forget your human fragility.

In Rome my best friend and I licked cones of gelato and rode bicycles past the Spanish Steps. We walked all the way to the Vatican and made funny faces in photo booths. She framed those photos and now they hang in her apartment in Park Slope. I really don’t look so different. I can understand why it is confusing when I say I can’t get out of bed.

In Puerto Rico I rode on the back of a truck and wielded a machete to cut through thorny vines. The farmers were surprised that a girl with such soft hands could be so tough. Then there was the bar in Brazil that served beer and cachaça to socialists and rabble-rousers. There were boys with soft lips in Buenos Aires, bonfires on the coast of Ecuador, Costa Rican sunsets, the snowy streets of Stockholm in March, hiking through the Israeli desert, dancing with somber Europeans in Madrid, and the warmth and comfort and familiarity of Mexico. There was more. There was so much more. And sometimes I want to scream when I am reminded of that girl. That girl who flit through her life like a moth. Gone are the days of last minute trips and all-nighters. Now, every decision must be carefully weighed and negotiated. Failure to do so could result in a week in bed. For somebody who used to be game for everything, this new reality has been difficult to accept.

Sickness is a very different sort of adventure. There are appointments, procedures and lots of drugs. Life can feel like an endless waiting room. Though, I’ve come to take some comfort in those beige walls and trashy magazines. I’m not yet at a point where I can speak inspirationally about overcoming adversity. I’m not sure this has made me a better person, but I am adjusting. The resentment I felt upon diagnosis is slowly dissipating. I have found a self-care routine that allows me to maintain a fairly active life. I no longer fight my body when it tells me it needs to rest. I am learning how to ask for help and lean on the people in my life. And who knows — maybe someday I’ll be able to ask for a different phlebotomist.

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Originally published: May 11, 2016
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