Ovarian cancer, Caretaking, Art, Long term Illness, queer, lgbt, trans, transgender, mtf, artist, death, grief, loss

November 2012

I bought a hoody yesterday because I needed a hug.

Wave 1 (but I didn’t know it): Care taking a loved one with a terminal illness


Ovarian cancer, Caretaking, Art, Long term Illness, queer, lgbt, trans, transgender, mtf, artist, death, grief, loss

November 2012

You think you can’t grieve someone’s death when they’re still alive. You’re encouraged to see everyday as a gift. Make the most of it. Roll with the punches… Nobody says “oh, don’t worry about it, she’s going to a better place” when they’re still alive, and “at least you knew it was coming, so you had time to prepare” is a myth worth demystifying.

Have you ever seen one of those movies where the main character has a vision or prediction of a loved ones future death, but only gets a piece of the information, and might be missing the rest, like the date, or time, or cause? And so the rest of the movie goes… they run around frantically trying to figure out the missing pieces so they can beat fate and live on for another day… even if it’s just another day?

I always walk out of those movies feeling relieved it’s over and I’m not that person. I could not walk away from my mom.

Truth is the grief came with every new loss. The death of all the little dreams that were becoming less attainable everyday. The dream for cure became the dream for hopefully maybe a 5 year remission. Then the Dream to make it to next Christmas. Then the one to make it to next month. The dream to keep her hair, to eat solid food again, to go to Italy. Hell, she even wanted to see me get my top surgery, and walk proud the way I dreamed of.

I did, in fact spend years “preparing” for my mothers death. Burying dreams every month, then every week, then every day. Hers, my own, even others who were connected to me and relying on my abilities to build dreams.

I was, however, no where near prepared for her death. I was grieving, and numbing, and suppressing, and when it finally came, I thought it was over…

Wave 2: It’s Over.

April 27, 3am. My mother takes her last breath in the presence of my brother and her best friend. She is in her home, peaceful, relaxed, after being in the hospital on life support for weeks, still fighting. My Brother wakes me up, I go upstairs, we check, we wait, and then we call the nurse. She confirms, and then we call the funeral directors. They come, with the coroner, and provide final confirmation. As they prepared to take her, I sat down at the piano. The one that I learned on, the one that was my mothers, and her mothers. I started playing the piece she had asked me to record so she could play it at the funeral. I promised her I would play it live. It was the only music I had been playing for months, practicing, trying to prepare to play it on one of the hardest days of my life. Although we argued all the time, my mother loved it when I played the piano, even if it was just the same few songs over and over. So I played it for months, through suppressed tears knowing what I was preparing for. Some days, as I played it, I could hear her crying in the other room (although she never let me see), and some days she could hear me crying too.

I finished as they were taking her into the beautiful dew lit morning. It was misty outside and the sun was just giving enough light to make everything look magical. I remember feeling happy for her, that it was such a beautiful and peaceful morning to go. I couldn’t have asked for better.

It was over. I did not cry. I felt relief.

Wave 3: Relief (and denial)

I was sad that my mom was gone, but I had also spent years being sad that she was sick. Although I felt some level of guilt about the relief, I knew the hard facts, she wasn’t in pain anymore, she wasn’t sad anymore, she wasn’t lonely anymore, she was “in a better place”.

And for all of the most selfish reasons, so was I! No more scheduling my life around a nursing responsibility I felt unskilled for, no more fear of death because it’s done, no more spending an hour tapping bubbles out of tubes. I could have my life back. I could look into the future and finally see something more than pain and suffering, and loss. I was free.

I remember telling people “give me 2 weeks, and then I should be back on my feet again!” I was excited, I had new energy I didn’t have before. I could finally move forward with my life, my family’s life, my organizational life. 2 weeks went by, and I was knocking out everything, organizing gatherings, preparing for the LAMBDA awards (Lammy’s), getting back on track. 3 weeks went by, still good! 4 weeks, cruising along!

and then…

Wave 4: Wait… What just happened?

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They say Chemo patients often experience “chemo brain”, a condition where even the most simple processes become complex and confusing. I think grief can come with a similar condition.

June 2012…er…2013…. I was preparing to attend the Lammy’s. Everything was last minute since before my mother passed, I wasn’t sure if I’d be able to go, but after talking to Ryka Aoki and having her ask for my presence and support, I knew I had to make it happen. I wasn’t personally worried about winning so much, because I knew how hard Ryka and I had fought to get there, and how much of an honor it was to be getting recognized for those efforts (but I would be lying if I didn’t admit to wanting to win at least a little bit :p ).

I can honestly say that most of that weekend is a blur, and no, I didn’t have that many drinks at the after party.

At first I thought it was exhaustion from the 20+ hour car ride from St. Louis to New York (it was supposed to be closer to 15 hours, but I can’t tell you where I lost that time), or the lack of sleep, or food, or the break-up I went through with my partner the week before. I thought it was nerves about walking into the Lammy’s, social anxiety, or making an ass out of myself in front of TT Jax who I was meeting for the first time after months of support he’d given me, not only professionally, but personally as he selflessly offered his many years of experience care taking and surviving to help me keep my head above the water through those hard times (I am forever grateful).

It wasn’t till months later that I could actually recall the specific tipping point:

I was finally in my hotel room in NYC, just an hour before the awards. I decided to check through one last time to make sure I had everything I wanted to bring, books, business cards, promo material, all accounted for. One last place to check, my duffle bag, which in my rush I grabbed and threw in a few last minute things before leaving the house.

That’s when the reality hit me. How out of touch I actually was. How little I was actually paying attention. I reached into the bag and started pulling out envelopes, and pieces of paper. Information about my adoption, and notes my mom had written. everything in the house I didn’t want to loose as we started going through things and I wasn’t sure where to put them. Pictures, sensitive information… emotions were flooding and I had nowhere to put them, and no time to process them.

I can’t say I wasn’t a mess at the awards ceremony. I also didn’t accomplish much networking, or help Ryka feel supported. To my one and only credit, I managed to hold myself and my emotions somewhat together and at least attend, but I definitely was not very present.

Wave 5: The first undeniable breakdown

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Making the decision to take my mom off life support might be the hardest decision I’ll ever have to make in my life.

What happened next felt like a nightmare. Two days of driving home and breaking down (and I’m not talking about the car). By the time I had got there I finally cracked. I mean, laying face first in my bed balling with snott running from my nose and my ass hanging out of my pants unable to answer any questions (there are witnesses, but I’ll let them tell their own experience).

In an instant everything felt like it was crumbling around me, and I didn’t know why, or how, or what to do. I didn’t understand the grief or the impact of being triggered in the hotel room. I had been doing just fine! I had felt relieved! My mom was in a better place, and I had had plenty of time to prepare for her death. It couldn’t be grief, I was over that. It had to be the universe, or me, or fate, or just the reality that I was, in fact, an incapable, mess of a person…

Next Post- Grief: The Continuum…