Some of you asked for a photograph. Here’s a self-portrait from my thesis exhibition catalog.Read More
During the Tangentially Speaking podcast, Dr. Wallace "J" Nichols tells Chris Ryan about his daughter. He says that when his daughter menstruated he and his wife took this a good sign of her body’s wellness. Presumably, his daughter has health challenges. This part of the conversation stuck with me.Read More
All practices reach highs and plateaus. Movement practices, creative practices, and relationships, too. We sometimes refer to the ups and downs like economic phenomenon — the stock market. There are catch phrases that communicate succinctly: growth, boom, mania, honeymooon… then, writer’s block, slump, and dump.Read More
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.
I stumbled to the first seat I could reach as the driver took off. I sat exactly across from two college boys. Typically college boys. Hey, typical college boys, you were not too nice to a girl in black with a puffy, broken out steroid face and cane.Read More
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
If I bang my head, even slightly, I become melancholy, tearful, and even whiny. I admit it, whiny, I become whiny. My least favorite state of being to be in or around. I bet there’s a perfect homeopathic remedy for that oddball way of mine.Read More
I appreciate the comments and notes I have received since opening up on the topic of health and sickness.
I do not know what my parents were thinking. One day they had a typical (albeit moody, depressive, artistic, and rather eclectic in appearance) twenty-some year old daughter, the next they had a daughter with an uncertain future.Read More
My migraine story is past tense. It’s uncomfortable to say, “I used to get migraines but don’t anymore” because I don’t have a great answer to the most common follow up question, “Oh, what made the migraines go away?”Read More
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.
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
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
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 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 blinked.Read More
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