Recently I’ve been listening to Madonna’s “Like a Prayer” on repeat. When’s the last time you took a good listen? I hadn’t listened to it closely probably since I was 13 yrs. old. I had such a visceral reaction to “Life is a mystery; everyone must stand alone”.  I am reading over this blog post I wrote in January and it is like…really coming atcha hard with the post-holidays blues. I wasn’t sure if I should post it because it was more serious but here it is.  I didn’t expect to write so much about my father but it just came out…and I think it helped. Today, I can look back on this post and clearly see how things have taken a turn for the better. Little by little, like a tiny train…choo choo!

Brno Bound

The last time I wrote, I was heading to New Jersey to see my family and friends and eat lots of New York-style pizza. As I write this, I’m back at one of my favorite cafes, Mezzanine Cafe. I’m back to the intricate foam designs on my lattes, gorgeous architecture and… loneliness. It’s fine. It’ll pass. But dang, leaving my family and friends to come back to a place where I feel like I’m reaching out into a void, or to where ever that place is Eleven goes to. I traveled for 24 hours straight, from Newark Airport to my little Ikea styled apartment. That first day was like a waking dream. Did I really leave. The Facebook photos proved that I did. So I realized my brain has become adept at automatically compartmentalizing difficult feelings that I can’t necessarily process due to having to survive. It’s been like this since I was 10 years old.

Both my parents were alcoholics, but in the end, my dad was the one who had a good job, so we went to live with him. I couldn’t comprehend what was happening. Why had my mom sent us away?  In the taxi we took from the airport to my dad’s apartment, I urinated all over the new dress he got me from Macy’s. This kept happening. My body took all the things I couldn’t express and set it somewhere else. I often didn’t feel well, always thirsty and began losing weight inexplicably. I remember it being dark when my father took me to the hospital. I was first diagnosed with Juvenile Diabetes. The doctor, Dr. Lala told me that severe trauma can cause juvenile Diabetes. He said this in response to the non-existence of Type I Diabetes in my family. The trauma —my parents separating, and I and my 8-year-old brother were bounced between New York and South Dakota. Maybe the memory of the tears coming down my fathers face about this news impacted me in ways I’ll never fully realize

 When I got back to Brno, I slept for days. Maybe it was jet lag, my appetite was cut in half and I had no desire to do anything. Before I left for the holidays, I was worse, I couldn’t even sleep anymore. I was here to do the most important work of my life. So, I pushed on, and I go to my cafes and try to write. I constantly fight feeling tired. Is this from depression? Is there something wrong with my body? No one else I’ve spoken to has had as much trouble with loneliness as I have. My theory is that half the people have better life lines in their schools and the other half are hooking up on Tinder.

The Original Croatian Sensation

The hardest part of my visit was knowing I’d be leaving my father at the end of it. Is this his last Christmas? [T1] Am I a terrible person for not staying? When I start thinking of all of this, I think about a conversation I had with him while I was away. I was just talking about something regarding my research on access in the arts here and he interrupted me adamantly, “You have to teach them.” As long as I live, I’ll never forget how he said that to me. Did he believe in me and in what I was doing? It was an odd feeling to have this kind of approval from him. He’s squeezed out a proud word or two over the years but this was on another level. He believed in me. Woah!!!

                My father’s health had deteriorated while I had been away. My brother, husband and mother in law had been helping out and providing support. I had made a bunch of phone calls to his doctors and different services on his behalf. My cell phone bill was over $200 and the guy at T-Mobile was like, “Why do you have so much?” I told him, “My dad is sick.”

My dad was moving more slowly, and his voice had gotten a little fainter. I could hear the fluid in his lungs, but that stubborn son of a bitch was still cracking up over things and giving people a hard time. He’s always loved to laugh. I took this as a good sign, maybe he would be okay. And then the realization of his age, deteriorating organ function, and heart problems reached into my guts and yanked. Even if he feels better tomorrow or next week, would that be for another season or year? What would his quality of life be? He keeps saying he’s fine, but I know he’s lying. I know this because I’m just like him. We’ve been on the phone with each other multiple times over the years, lying about hour health because we didn’t want the other to worry. We are the worst.

My mom died suddenly at 63 years old, and that was devastating. We were just beginning to really have a relationship again. But this time, it’s my dad, the guy who taught me so much and who had also put me through so much emotional pain. But I genuinely like him as a person and I have empathy for him. As a child, he lived through WWII in Bosnia-Herzegovina, Communism, he has some other undiagnosed mental illness which he described as “a little bit of everything” and he’s had dementia for probably 20yrs. It only dawned on me that this was the case.[T2]  I had assumed that he didn’t care about what I told him or that he was just eccentric. But, holy care, I realized this year that it was probably early onset dementia. Good job, disability activist.

I spent as much time with him as I could. I preferred it when he was a little grouchy, at least then I didn’t feel like my heart was in a vice. Who am I going to be without him? He’s the one who taught me to fight for what I wanted and to never take no for an answer. He didn’t teach me to be dainty and respectful, he taught me to be tough and intelligent. When I was 10 years old, he told me to never let any man dominate me. It’s a pretty wild thing to tell a 10-year-old girl but it made an impact. Who will I be when he’s gone? On the last day I was in New Jersey, Mike called to tell him we were coming by so I could say goodbye. He hadn’t realized it had been two weeks and said, “But I thought she was here for two weeks?” We got there and he had been sleeping, he was tired from a little bit of walking that day. We went over a lot of stories from the past two weeks, and then he decided it was time for us to go. He hugged me and said, “It’s like half of my heart is going.” It was all I could take then, and now in this café, to not cry. The only way I can respond to that is to make my Fulbright here count.

My trip back to Brno was like a dream I had where I took a cable car straight form Prague to Jersey City. It felt almost identical. I regrouped and began with the emails, Facebook, messages, texts, meetings and writing. I’m going to hit the spring hard with presenting, lecturing, art activism and addressing whatever injustice I encounter. I met with an art class about how to make their projects more accessible at the Faculty of Arts here in Brno, and I’ll be overseeing their finished projects soon. A university reached out to Fulbright because they heard about the works I was doing, and I will be facilitating a workshop on access at the National Museum soon. This is the tip of the iceberg. All of this will culminate in a paper I plan to submit to the Disability Studies Quarterly Journal. What I’ve done here and researched must get out to the rest of the world, as access in the arts is usually relegated to the U.S or Western Europe. As my father said, “I have to teach them.”

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