Monday, September 21, 2009

The Bald and Beautiful

It had been about 12 days since our last appointment. The 10Th day landed on a weekend, I guess, so the chemo was scheduled for the following Monday adding two days between rounds of therapy. It worked out great for Eid. I was excited to go back to the hospital. I missed it so much. Say what? Yup. I just spent an entire month feeling left out from a community during one of the most important times of the year. During a month, which became a replacement from my old holiday rituals and excitement for Christmas, were also abolished this year. My social interaction was cut to the bare minimum. I got to escape home only a couple times to sneak in and out of late night prayers, while trying to avoid too much interaction since I heard many people were getting sick.

Our return to the hospital gave me a feeling of familiarity, comfort, and support. I glance around the waiting room watching shiny scalps and chubby faces fill the chairs and couches. I watch one little girl, who I saw when she was first diagnosed; bald, fat and inhaling a bag of chips. The only way I recognized her was because I remembered her mom. I relived the memories as I observed her mom scrambling through her bag looking for some other food as the little girl started to whine while scraping the bottom of the chip bag rummaging for anything left to devour. These are the people I feel closest to now. I understand them and they understand me. I am not looked at funny when I repeatedly clean anything that touches the ground. People don't look confused when Yousuf starts to scream when you come close to him wearing gloves or strange looks due to his half bald half spiky hair coming in. Many times I feel I have to explain myself in other public places when I am consistently sanitizing hands, toys or scrutinizing Yousuf's utensils before entering his mouth. In the hospital, he's just like everyone else and everyone else is just like him. We are all going through the same struggles and tests. I skipped out on some waiting room time and escaped to the bathroom, hid in the stall, put my face in my hands and sobbed at my new reality check.

The people I was once close to and connected with are drifting away like strangers....and the people who were and are complete strangers are people I relate to the most and feel closest to now. This truth makes me very sad. Tomorrow will be the 3 month anniversary of Yousuf's diagnosis and I am just now feeling the impact of this new lifestyle beginning to emerge inside me.

After our usual long waiting hours in the hospital we got our car out of valet and headed out. I started to tell Abu Yousuf how I felt about feeling more at home there more then the masjid now. He replied with an astonished, "How's THAT?" But before I could answer his phone interrupted us and in flooded all the Eid calls. I didn't expect him to understand. Although we both have a son with cancer, due to different parenting roles we have, I am the only one who feels the full imprint of our new structure of living. He can't feel left out of his old community when he is the one who leads it.

Three months ago I felt as though the Earth stopped moving. This month while everyone went back to their lives and routines I was racing to keep up and fit in but I realize now it won't least not anytime soon. I must take a new direction in life with new goals, agendas, interests....and friends.

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