Don’t Congratulate Me For Being a Survivor

I had to out myself as a cancer survivor at work this week due to a spate of appointments coming up. The response from my supervisor was, “Congratulations!”

People are congratulated when they become engaged, pregnant, married, or parents. It’s a happy word for happy life events.

Do we congratulate people who survive a car crash, a heart attack, or a stroke?   No, we don’t. Because it’s not appropriate. It doesn’t make sense.

So why, then, is this considered an appropriate response to surviving cancer?  Because surviving cancer seems like an achievement, like earning a college degree or buying a house?

Most people don’t know what to say about difficult or just plain shitty life events. There are entire books about what to say when someone dies under different types of circumstances. None of them ever advise the reader to say “Congratulations!”

Let’s try a thought experiment. What are the unspoken words after that initial congratulatory utterance?

“Congratulations for your life getting back to normal!”

“Congratulations you didn’t die!”

“Congratulations it’s over!”

“Congratulations you won the battle!”

Since the uninitiated are so in love with “the battle” metaphor, this may well be what comes to mind in those who think this is a congratulatory occasion.

Yes, we get to go on when so many others do not.  I like to think my entire collection of writing about cancer communicates that “living on” is a given and what remains unacknowledged and often unspoken (because just being alive is supposed to be reason enough to be happy) is how difficult living on is.

I heard that “Congratulations!” as a cascade of negatives:

“Congratulations! Your medical care is permanently intense overkill!

“Congratulations! You must have health insurance forever!”

“Congratulations! You are going through early menopause!”

“Congratulations! You are a damaged and traumatized person!”

Now, I didn’t say anything of this sort to my supervisor. He was very uncomfortable and quickly changed the subject. Quite honestly, I relished the moment. This is a man who once asked me if I had ever heard of PubMed and has continuously talked to me in a condescending manner.  Now he will not make eye contact with me or speak to me. Good. GOOD. I know that despite everything, on a professional level, what I have been able to accomplish in light of that piece of information is quite extraordinary. Perhaps now he really knows who he is working with.

 

Advertisements

Changing the Locks

I want to bail.

I’m bailing.

I’m leaving my profession before the end of the year. The profession that I never wanted. The profession that represents me making the best of the cards I held at that time.

I’m going to reshuffle the deck and pull an entire new set of cards.

No matter what institution I walk into, no matter how the names and mission statements changed, I open the same door and walk into the same room, over and over again.

I need to open new doors and walk into new rooms.

I want to truly reclaim my writing for myself. I will not seek another job that uses my writing. I must rediscover my love of the craft because now, it has become downright painful to write another word. Last week I stared at my monitor and cried because I just…couldn’t. I have always been The Writer. It’s time I make full use of those powers for myself first, because I do my best when I am writing for myself.

I know I will be okay, no matter where I land.

My loves, those essential experiences will not be taken from me- hiking, reading, the mountains, the piano solo at the end of “Beautiful Blue,” the electro shock from The Messenger that opened me back up to the wonder that is still all around, my other bands, travel, my curiosity, sunsets. Sunsets! This will all continue on, those past experiences ingrained as memories and new ones form, the soul-shifting in my heart that continues to fill me with wonder, or the song that fills me with passion even after the 20th listen. It will all still be there.

What I want the most is to find love and to be a light in a world that has become so dark. To find that, to do that, I need to open new doors and walk into new rooms. I need to be who I am at my heart, and that is a writer.

Guitars and Broken Hearts

Note: In hindsight, I did not tell this story very well because as I wrote it, I became enormously sensitive about anonymizing the identities of the musicians. This will be rewritten. I also don’t believe the story is over. 

I’ve been quiet.  But I haven’t been invisible.

This was my 10th April since Dr. Overinvolved sexually assaulted me and diagnosed me with cancer, since I survived medical error and anesthesia awareness to find the only person to not blink in the face of my trauma and to offer me a modicum of comfort was also my assailant.

I knew something had changed when I went home six weeks ago. I walked five miles to sit outside the clinic where these things all happened and I felt nothing. I knew the ghosts were there. They didn’t move, pester, poke or whisper a word in my ear. They sat quietly with me on the white brick planter outside the sliding glass doors of what is now an urgent care clinic.  Could this be what peace feels like?

The number 28 has had repeated significance in my life. I was 28 when this happened, I was biopsied on the 28th, and my surgery happened on the 28th.  On this year’s April 28, I went to a concert. All day long I thought about what happened 3,649 days before and how poorly I had lived those days. I wasn’t going to live day number 3,650 the same way. In order to function, I had to push down all that loss: the loss of my trust in health professionals to take care of me when I can’t take care of myself, the loss of trust in male physicians, the loss of trust of any logical order in the world, the looming sense of my own mortality, this feeling of being profoundly and irreparably damaged, the shame at what happened to me, for catching him, for staying, for thinking his good deeds outweighed the violation, for needing someone to be the “good one” at all, for keeping his secret, for never telling the entire story to my therapist because I knew she would report him, for not reporting him for so many years, for reporting him in a cowardly way, for the loss of opportunity and the slamming shut of so many doors.  For who I could have been had this never happened. That’s the biggest one. I remember that girl. She still had dreams and believed they were possible.

The concert I went to that night took place at a small theater in West Hollywood. I made the conscious decision to take off my armor, put my weapons down, and let the music take me where it may. No one sees me anyway so it seemed to be a perfectly safe place to put aside my defenses.  I was assigned to a seat in the front row and lost myself in the music, closing my eyes frequently and even openly weeping.  I remembered being that girl who had dreams when they played “Over the Rainbow” and for a fleeting moment, I felt like a young girl who still believed they could come true.  I’m pretty sure adult me didn’t have any dreams anymore, as my “dreams” boiled down to “make money and keep my health insurance.” I gave up on the dream of more schooling, the dream of meeting someone who could love me that I could love back, the dream of living an exciting and adventurous life, and so much more. It was all just gone.

I thought about that night I was alone in the hospital. It was too easy to close my eyes and see the dark room, the shadows slanted on the wall, the tray in front of me with a cup and a pitcher of water, the television on the wall, now dark, had once been alive with muted Sex and the City re-runs on TBS. A nurse turned it off when I managed to nod off for a few minutes. I wasn’t asleep and heard her hit the button. I opened my eyes when she left and I knew there was no way I would sleep that night, lest something else terrible happen to me.

I also smiled. A lot. It was a magical, wonderful night of music played by people that played in a rock band I LOVED. It was an amazing night, truly. I was also keenly aware of the other grief in the room with all of us; it was so utterly present that I could feel the guitarist’s energy when he was on the stage just feet from me, as if we were on the same frequency.  I found this sense of connection so distracting that I had to instruct myself to turn away from him. But I know he felt me too, as he frequently looked down or looked in my direction. It was cosmic and a little spooky. Without my armor, I think or I hope, I was able to project the love, the light, and the deep empathy I have for him and what he’s going through.  I know a little bit about what it’s like to have the sun rise on what seems like a regular day and by the time it goes down, your life as you know it has been blown to bits, never to recover.

As the concert came to a close, I was in the midst of a standing ovation when said guitarist was suddenly face to face with me. I was perplexed and then he held up his guitar pick. He wanted to give me his guitar pick! I lifted my hand and he pressed it into the palm of my hand with all of his might, then he gripped my hand for a period of time before slowly letting go and walking away. I’ve never been so pleasantly shocked and surprised and I felt this massive surge of electricity through me.

That did it. That broke the spell. All sorts of new portals have opened to me, but most importantly, my heart and my soul are open again. I think my armor and weapons are scattered about La Cienega Blvd as I haven’t worn them since. I’ve had numerous strangers tell me what a beautiful smile I have, how gorgeous I am, etc. That hasn’t happened to me in years. I don’t feel old anymore. I don’t feel anything for Dr. Overinvolved anymore and have zero desire to talk to or see him ever again. That is all just gone, over and done with. I am relieved to have something I want to be gone, finally disappear.

I’m coming back to life. After ten years of all this trauma just imploding inside of me. I saw so many therapists and none of them helped. I took anti-depressants that didn’t help. I starved myself.

I was also reminded of how much I love live music.  I thought it was just one band, but it’s not. It’s all of it. I’ve been to many concerts since and they are just a joy. A couple of times I’ve gone with the hope of seeing this guitarist again because I want to tell him, but I believe he already knows. A bit of a crush now too, but I know he’s just a messenger and not the message himself. I hope I helped him too.

Compress

I stash my phone in the top of my hot pink compression sock, as if I am hardcore and hiding illicit contraband. The socks peak out from the top of my black boots, another relic of my thyroid cancer life. Without them, fluid pools in my legs, creating bulging rings just above my ankle bones. I’m 38 going on 70.

I keep the phone close so I can check my three email accounts and social media profiles as if The Answer is going to materialize at any moment. The Answer to the question of, “Why am I so unhappy and what is the solution?” Each workday I peer into a black hole. Changing jobs is hard, they said, but this isn’t new. Just worse. My neck hurts constantly now and sleep is hard to come by. Last night I slept fitfully with a heating pad on my neck and shoulders. This morning I have a raging headache and want to stay in bed and never come out. How I wish I had the luxury to have a complete breakdown, to watch every glass ball I hold aloft shatter as it hits the ground. Only then could I finally rest.

Silver Anniversary

April 1 marks ten years since my thyroid cancer life began at 12:51pm with a phone call from Dr. Overinvolved.  If he hadn’t been him, if there hadn’t been the anesthesia problems that led to my development of PTSD, this would have been so much easier for me. It would have been like all of the other “easy” accounts of thyroid cancer I have read about. But I was given these people, these events, and this story to tell, something I haven’t done all that well up to this point.

I started to write him but it sounds all wrong. I feel like he’s the one with all the answers, even though I know intellectually he doesn’t have any of them. It’s funny what a little bit of affirmation does to a person when they’ve been treated like they don’t matter for the whole of their lives. It’s utterly hypnotizing.

How does one commemorate a diagnosis you were never going to die from in the first place, but then went completely wrong in surreal and unexpected ways?  I’ve been left with this wreckage to sort through, which was the purpose of this blog, but now I wish it was all in a dumpster waiting for the Wednesday morning pick-up.  The act of sorting through it hasn’t yielded a conclusion to this story, just more questions, more threads, more intrigue.

I need to do something for myself because there’s no one to do something for me. But there’s nothing I want. No thing. I want what I’ve frequently said I want: time. Freedom. A different life that does not consist of drive office gym, drive office gym, drive office gym, ad infinitum until the day I die.  Any thing that I bought would be for that life, the life I just don’t want to live anymore.

So in this tenth year of my thyroid cancer life, all I know is that my life needs to change, something I have known for a very long time. I have tried to change my life and failed again and again. I have reached the end of my resiliency, the end of my strength and as a woman of no faith, there’s nowhere else to turn and nothing else to be done.

Flight & Farms

I wrote my last post on my phone, which is something I do a lot these days.  I hate typing on my phone. I am trying to instill more discipline in my work life by not logging onto any of my personal sites on my desktop. They told me they don’t care as they know everyone has Gmail and Facebook open in other tabs, but I know that if I do the same, the next time I look up, it will be time for lunch.

Back to year ten…I underwent my annual neck ultrasound last week. My age is wrong in the results, and I realized it’s been that way a number of years now.  I am listed as a year younger than I am, and it always says “thyroid gland absent” as if this is a revelation. There have been years I was indifferent, and years where I have been wound up so tight  I explode at someone, usually myself. I hate myself for this. I am unable to forgive myself for this. Despite everything, I still think I control my fate.  This year I was indifferent, through the different transducers. the color doppler studies that were only performed on my left side, the tumor’s side. And when the results came in that said I am 37 and my thyroid gland was absent, there was nothing else to say.

Clear. Next.

For the last five years of my working life, I’ve been hoping for a recurrence. I want to be pulled out of the limbo of a “biochemically incomplete response.” I also don’t want to go to work and would rather have cancer again then continue on in my current career.

I’m going to say that again.

I would rather have thyroid cancer again than continue in my current career.

I remember how happy I was to go back to work after the first time. I was amongst friends, it felt normal, and very little was asked go me in those days. Since then, none of my workplaces have felt that comforting. It was likely an anomaly. I was a sympathetic figure of course, 28 years old, losing weight (yay women who find a way to meet conventional beauty standards!) and coming into my own. Or so it seemed. In hindsight, I was veering off the road. My life in Los Angeles can be summed up in one word: isolation. In every sense of the word. My only connection is to the mountains and the hiking trails I race up and down on weekends.

I have examined the reasons for my leaving many times; it was an idea I was already trying to put into motion pre-cancer; I needed a change; I needed to leave the place where I had been sick; I needed a new challenge at work (let’s be honest- I can barely work; I spend more than half of the week doing nothing because I can’t focus); and of course, I needed to save myself from the Dr. Overinvolved situation and physically removing myself was the only way,  as my own dysfunction and damage pulled me towards him with a force that felt as strong as gravity itself. I knew I was the one who had the power to change our fate.  But I’ve missed him everyday since. I thought I would meet someone appropriate who looked at me the way he did, who made me feel seen and heard, who was comforting, whom I wanted to know back.  But I’m invisible, back to not being seen, and so lonely.

What do I do? Go home? Go somewhere else?

In 2011, I was accepted to a post-baccalaureate program for pre-med. I didn’t go. Because money and fears about health insurance. And fears in general.

In 2015, I was accepted to a dual degree MSW/MPH program at a top five university. I didn’t go. Because I would have been destitute.

Given the cost, further education is no longer an option. I also believe I have lost the patience to tolerate the grind of such rigid structure. The rhythm and predictability of the professional office life is part of what I am chafing against, after all.  Forced into this, forced into that; it doesn’t feel like something I am doing willingly at all anymore. It never felt this difficult before and that’s how I know I am at the end of this road. I thought it was just my last role, but it’s this entire field. It’s everything.

One of the drawbacks for all the travel I have done is that I want to keep moving, see more, then pick up and see more, rinse and repeat. But that desire doesn’t fit with how I have to live, or how it seems I have to live, in order for all of my other needs (money and health insurance) to be met.  I have enough money to do this on the short-term, to move out, lock it all up and hit the road, but it’s not sustainable of course. When I draw the escape map, it always lacks an ending because the road ends at another cubicle farm.

Ten Year Loneliness

I stayed in bed an hour past the time I should have arisen. What if, I thought, what if I just don’t go, what if I just never go back? I thought about my savings account and how I could live off that money for five or six months. But I eventually kicked back my blankets and made it into the shower, skipping breakfast and throwing lunch together.

I have this conversation with myself nearly every weekday since I started the new job. It’s fine but I don’t want to do it, or this career, anymore. I’m tired of the petty jealousies and criticisms, of being forced to sit here all day, of being so worn out from forcing myself to hold it all together, from hiding my true feelings. I just want to scream.

My ten year follow up testing is this week. I want it to be bad. Because then it could finally be treated, then it would be okay if I just stayed in bed and never went back. I would be allowed to burn it all down and start again.

I’m trying to just get through this before I make any decisions. No one knows. My family doesn’t know, my colleagues have no idea, and BFF Melinda is too busy hanging out with guys and being tattooed to talk to me. I don’t know if anyone knowing would help. Other people are usually not at all comforting. I wish I had a husband.

A deep loneliness is at the heart of my emotional state overall. My prior colleagues were my friends and we were all up in each other’s business. I haven’t heard from them. That’s how it usually goes- rare is the work friendship that becomes a real life friendship once the work association has ended.