How did I survive all this - being suddenly ill in my early twenties?

People like my family and friends, particularly my immediate family who navigated the transitiions and paperwork, and also my bandmates, roommates, and handful of tight friends.
Photography, particularly the self expression it allowed.
And, music, particularly making music. The self expression, the pull to perform, and go go go.

9 - Chic with Cane at the Plum Street Pub, New Brunswick

My bandmate leaned in and whispered, “You know, they are calling you ‘the hot chic with the cane’”. He was referring to the members of a Midwestern noise band on the bill we were also playing. My mouth twisted. “Oh,” I said. I thought, “Ugh!” and “Great!” simultaneously.

Read More


I noticed I was faltering on writing about my illness. I took yesterday off from writing. In the morning, Jared and I saw financial professionals - friends - who were willing to talk shop with us. Afterwards, we picked up our son and celebrated a family member’s birthday well into the night. We returned to a chilly house, tired and stuffed with food. Bed called, not writing.

Read More

Diagnosis Memory 3

I had visitors during my hospital stay.

My parents told me they were impressed that so many friends visited me. I just remember my bandmates visiting me. Maybe there were others.

I remember my bandmates most clearly because: 1.) One of them cried, briefly, and there are not words to describe how this made me feel. Softened. Touched. Kind. Sad in a kind of Virgin Mary way as I beheld his suffering. 2.) Another bandmate looked so serious. I tried to cheer him up. I think he visited more than once. 3.) The third bandmate and I made outrageous jokes about my situation.

I looked like h/ll and felt like h/ll. I dropped a lot of weight. No wonder I shared serious looks, tears, and jokes with friends. I was attached to monitors. I was in bed in a gown. I was not slinging my guitar, not screaming into a mic, not chewing on French fries. I was making photographs though, and I have photographs of some of my visitors.

The experience was otherworldly. I felt disembodied. I felt out of my body. Maybe that’s why my friend’s tears were so memorable, we were all crying for this lost person. It is certainly why I made photographs. I was trying to stay me.

Diagnosis Memories

How could just a few sentences be all they could say? Nothing more? Wasn’t this the most monumental set of sentences someone had ever said to me? Not wanting the most monumental conversation of my life to also be the briefest, I asked questions. Not because I wanted to know anything else but because I wanted the thread connecting me to the people that were going to help me to be strong. I asked not monumental questions, just any question I could think of to keep the conversation going, hoping to feel some human connection.

Read More

Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch

I’m reading Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch. The subtitle describes the content. It’s kinda making me emotional. I’m re-navigating, re-immersing in a time long ago when I was ‘sick’.

Read More

Remembering a Friend

I sat on a couch catty-corner where my friend sat. The room was dark and warm. She was recovering from surgery for cancer.

"You should have seen what they took out of me," she said.

I nodded. "Yeah," I said quietly.

"You know, sometimes, I wonder about all that Tab I drank years ago. Maybe..." she said looking for answers.

I paused. "No," I said as quietly as I could.

I'm pissed off

I'm pissed off

I called our contact at the rental agency. I had so much f/cking pride and rage at that time, but I had to pretend like I had no pride. He came to our apartment. I groveled. I begged our case. Illness, not able to work. Not able to make bills. Borrowing money. The line has run out.

He said, "My partners want to know what kind of person would break their lease."

I stopped.

I blinked.

Read More

I feel awkward asking

Beren says, "Get up! Get up, or I'm going to be late for school!"

This is funny for several reasons. First, neither Jared nor I have ever said that, not in so many words anyway. Second, Beren has never been roused from sleep in such a way. Third, he home schools.

This is sad for several reasons. After we are done laughing, I think, "Baby, I am glad you don't go to school." You know, because you hated it, kiddo. And, that's where somebody else's baby got shot.

Read More



Not long after that time, I went to a show with a friend, Doug. I can't remember what band we were watching. They were catchy, though. I wore my deceased grandfather's straw cowboy hat. I turned to Doug, and said something like, "F/ck this. No one's dancing, but I am going to. I could be dead." He nodded.

I have been dancing, alone in crowds, since.

Read More