A Tale of Two Jordans

To tell you the truth, we were absolute cowards. The boy and I stood in the middle of the 3rd Street Promenade finding ways to avoid our assignment. Our family was on a photographic field trip. Each of us had to approach a complete stranger and ask if we could take their portrait. We only had to get one, but the goal of the assignment was to capture as many as we could before the good natural light disappeared for the day. I kept shooting “test shots” of Luc to make sure my exposure was good. He kept shuffling his feet and fidgeting with his gear. Jeanette chased after Jordan, who walked right up to a family, introduced herself and attempted to get her first portrait of the evening.

– Can I take your picture?

– Oh. You want to take my picture?

– Yes. It’s for an as-, it’s for an as-, it’s…

Jeanette interrupted her quietly.

– Try again, Jordan.

– It’s for an assignment.

The woman looked surprised and I don’t think she knew what to say. Jeanette explained that Jordan wanted to take a portrait of her because we were working on a photography project. The woman said she felt a little uncomfortable having her picture taken and apologized. Jordan just smiled and looked fo her next victim. Meanwhile, the boy and I continued our shuffling as a stream of interesting subjects passed us by. Awhile later, Jordan got a portrait. And she was very proud.

I suppose that after eight years of cancer slaying, the fear of rejection is a pale threat. I wouldn’t say that Jordan is fearless, but there is no question that she is brave. It’s not in her character to step away from a challenge, but there’s more to the story than her steely determination. I’m convinced that Jordan does not see the world the way the rest of us do. In her long war with cancer, it isn’t just situational conditioning that has made her so forward socially. I think the disease has affected her biologically. She will be 13 in just a couple of months, but we often feel she is mentally younger and more childlike with each passing day … and it scares me. She truly has a hard time relating to people and she struggles to make friends. It doesn’t seem to bother her much. Jordan lives in a bubble. You’re in her perimeter of cognition or you’re not, and the perimeter isn’t very large. I watch her peers interact with her. They are cautious. Distant. And, as is natural for adolescents, quick to label her different.

It wasn’t always this way. When Jordan was four years old she was reading! She was precociously bright and a good student at her preschool. Nothing got by her. She was sharp as a tack. She was also a binder between her friends. If some of the girls were fighting, Jordan usually stepped in and smoothed things over.

Today, Jordan can’t do a lot of those things. Like the interaction with the portrait subject, her brain gets stuck sometimes. Choosing words can be difficult. And she has a very short attention span. We don’t know if it is because of the tumors or the various rounds of chemotherapy, but over time that acuity and social knowledge has definitely faded. It’s subtle. I often don’t realize how much she’s softened around the edges until we’re in a situation with children her age. Her behavior is then so noticeably different from others. And she has no filter.

Within minutes of meeting a new acquaintance she will reveal intimate insights about her hospital stays and various treatments, or she’ll share embarrassing stories about her brother (which he does not appreciate). She still has charm, and she speaks with such genuine innocence that most people fall in love with her. Yet I worry about her future and I still grieve the many intellectual losses. I wish she could read again. I wish she had a best friend. I wish she could relate to others without making cancer the centerpiece of conversation. I never want her to feel defined by her illness. She is so much more.

Despite the taxes the disease and therapy have levied against her mind, she can still be resillently witty. Some of her observations floor us. And it’s delightful to watch her charge forward into parties and gatherings. While she may have a hard time relating to others, she can win over a room in an instant with bravery and flare. She pulls off celebrity well. She likes to be the center of attention, and she has no trouble attracting a spotlight.

From what we can tell, the disease is dormant again. The tumor in her spine is shrinking and there isn’t any evidence of activity in the dark cloud of tumor tissue loitering in her head. She’s enjoying a break from chemotherapy, and radiation is through. But the ghost lingers and haunts us with seizures here and there, providing us with a foreboding reminder that this journey continues. A few days before our street photography field trip, Jordan had a seizure that lasted more than five minutes. Her school dialed 9-1-1 and she ended up in the hospital for the rest of the day. She recovered quickly and was released later that night. When I arrived, she was alert and she wasted no time regaling all her complaints about being in the ER. I didn’t mind. I still remember days when the seizures that put her in the hospital knocked her out and set her in a week-long coma. I’d rather listen to the verbal ranting than have to go through that ever again.

When Jordan returned to school the next day, one of her friends welcomed her back and told her that another student with special needs had just had a seizure. Jordan flared up and started screaming.

– I don’t want to hear that word right now!

Jeanette intervened and insisted on an attitude adjustment. Jordan apologized to her friend and tried to explain that she was still shaken by her hospital experience. Her friend apologized for bringing it up and they went on their way together. Perhaps I should worry less about her social life and celebrate the fire and fancy of my abiding hero. I might do well to follow her example and resist the temptation to let fear stop me. Now, if I can just take a great street portrait…