Where is My Joy?

In the wake of this tragedy, I am seeing the world again through a different pair of eyes. This time, I am determined to keep this pair. I have been in a similar place before and failed to convert the new views into a way of living that made me feel fulfilled and joyous. Instead I dug myself further into the administrator life (I’m still wearing my boss lady suit as I type this, sans shoes) and pushed everything else out and away. I am talking about such vital joy fertilizers as love, friendship, creativity through art, and a closeness with the world. I know I owe some of that to PTSD, some of it to secrets I chose to keep, abuses I endured, physical exhaustion, excessive focus on my weight/exercise, and a low level depression that was not helped by poor therapists and bad medical care.

So, new eyes. What are you bringing into focus this time around?

The need for artistic expression with a medium I can mold with my hands. I used to make necklaces. I was good at it; many I still wear today and they regularly receive compliments. I felt frustrated with my limited design options and wanted to learn how to weld and design in metal.  I never did it. I am in close proximity to a number of one-day seminars and a well-regarded community college program.

The time is now.

Photo taken by me. Joshua Tree, CA 8/15/2015

Speaking of art, there is a riveting and disturbing art show happening at an abandoned hospital. The space was left untouched and is part of the show itself. It utilizes the operating rooms and the recovery room- two spaces that represent my PTSD- and I am going to go this weekend. I want to test myself. I plan to come back and write about it in this space.

I have not forgotten about the advocacy work I know I need to do. I am trying to withdraw from my fall advocacy class right now. It is bioethics and I am in no place mentally to debate moral relativity over the internet. I will pick it up again, not to worry. In the meantime, the Thyroid Cancer Survivor’s Conference is local this year. I was not going to attend as thyroid cancer has finally stopped being my every third thought. Then the program was released and I see a lot of opportunities for me to learn more about advocacy, for myself and for others, as well as a number of spaces where I can share my experiences with people who might need them.

As for the administrator life, it is what I do, not who I am.

Blogging gurus and personal development coaches would call this “designing your life.” I’m going to call it “waking up.” Let’s hope I do not fall back asleep.


The Prison of My Own Expectations

The author: Joshua Tree, CA

The question that has haunted me since my cancer fiasco is the Granddaddy of all existential questions, “Why?”  All of this time, I have carried around the belief that I went through everything for some grand reason. I subsequently tortured myself with the idea that I needed to turn around and use my experiences to help others in a very defined way. I took college classes in chemistry, medical anthropology, and a whole slew of other disciplines trying to strike gold. I imagined myself yelling, “Eureka!” while a clear path laid itself out before me, just begging for me to step foot onto it.

It never happened.

But, oh, how I tried!  Last fall I mustered up the energy to apply to graduate school and it has not gone well.  I have one application still outstanding, to UCLA, and I am not optimistic.  I have received five other rejection letters already.  I have an acceptance to a private school I cannot afford. It will drive me $100k+ into debt and imagining being in such a situation is like visiting my own grave. I have felt upset, depressed and defeated, but today a feeling of freedom came over me.

All of my life, I have coped with challenge through education. Some people drink, I research and read everything I can find. I did the same with cancer and continue to do so. I set up my Twitter (@athycalife) as an information source in order to take advantage of this.

Education, or getting more of it, is no longer the path for me. I always felt I was supposed to be doing something better with my life than my current career, which is good and useful all on its own. I felt that I was supposed to have a graduate degree. I previously attempted to earn one, but was thwarted by Hashimoto’s Disease. That experience has hung over my head for the last ten years, a loose end that must somehow tie in with my desire to use my cancer experiences to help others.

But I was wrong.  My current career could theoretically could be used to help others with cancer. I have this blog, the Twitter account and for those that stumble upon them, I hope they are useful. In short, I think am exactly where I need to be and am no longer dogged by this expectation I have pinned on myself. That’s freedom.

Being Candid

What to do with this space?

Writing about my illness is a struggle.  I write a paragraph, and then I just lock up and walk away.

I believe it is one huge trauma made up of many smaller traumas.

I could write about how my doctor and I were caught in this terrible dance of transference and countertransference and how he was either under involved or over involved. But yet I loved him anyway.

Or I could write about how I was scanned twice after radiation, with the radiologist coming out to obtain a history from me before the second one while not telling me the reason for scanning me twice.

I could tell you about how I left the hospital that day, sobbing, because I imagined the worst.

And how Dr. Overinvolved reacted when I mentioned my concern over being scanned twice, “Oh they always do that.”

Most of all, I want to say how I have struggled mightily to do something with this experience.  But I am stuck in those days, watching the years go by, watching my hair fade to grey, thinking I know how to get unstuck but finding myself more stuck than ever.

When will the Train Wreck Cancer Girl finally make good?

My Voice

For the last eight years, I have been reluctant to add my voice to the chorus of other young adult cancer survivors. I have a list of reasons, of course, but what held me back were the overwhelmingly negative experiences I had with my doctors, my family and my friends. There was no hero for me to lionize. Cancer stories need heroes and happy endings because the details of the patient experience are too bleak on their own. Rare is the person who want to delve into that darkness.

In keeping silent, I have harmed myself and I have harmed others who also had a negative experience.  I have been enforcing the cultural narrative of the grateful, positive cancer patient who finds happiness at the end of the rainbow. On paper, it does not appear that cancer slowed me down at all. I appear successful, possibly even accomplished.  The truth is that I have a career that I do not want anymore, one that is psychologically painful to continue to do on some days because I feel stifled, bored, and like I am wasting my time. I have chest pains in the office, am grinding the hell out of my teeth, and feel generally depressed when I have to be there.

My voice does not sing through my current work.  My voice sings out in joy when I can talk and write about what matters to me.  I have no voice when I am in that office; I am mimicking someone else’s voice and living their life. It’s not my life. I have put events into motion to get new training and start a new career where I will use my voice. In the meantime, I will use my voice to tell my story and the many threads that continue to spring from it. I am here and now the voice that is flowing out of my fingertips is mine and mine alone.