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.

 

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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.

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.

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.

A Dream Without Armor

I dreamt about you last night, standing behind the pharmacy counter and handing me my bottle of Levoxyl. But you don’t test my Thyroglobulin anymore, you said.  No, you don’t. You haven’t tested it in eight years and your test was wrong anyway, creating a false sense of relief, of safety.  You were too young in my dream, but your voice, your frame, your gut feeling of presence was all accurate.

I feel inspired to write you a letter, a real one on paper, with details of my travails and my woes, of how my greying hair finally makes me look the age I feel inside, about the grief I sit with everyday over what could have been and now what never will be. It is year ten, so a retrospective feels appropriate, yet I imagine you will be disappointed I didn’t make more of myself.  I could have, with someone like you, but it was all me and one person can only take themselves so far. Despite knowing that, I still believe I can do it all.

In your gaze, I always saw myself without armor. Now my own gaze only reflects my armor and my weapons. I have lost her again, I know, I can tell. Maybe you can help me get her back. The years will always be gone, of course, but the ones ahead would be so much better if I could be the girl without armor again, to feel that wonder, lightness and optimism, instead of being hard and grizzled, with all of that behind me. I believe it is lost forever. I cannot imagine ever feeling that way again.

My #metoo

Yesterday’s statement from Eliza Dushku about being molested by her stunt coordinator when she was twelve really messed me up. Especially, “…my life was literally in his hands…whereas he was supposed to be my protector, he was my abuser…that over-the-top special attention he gave me… ”

What Dr. Overinvolved did to me was so lightweight but he still breached the trust, the boundaries,  he still assaulted me and then continued to groom me. I knew it, I saw it and that’s why I ran, while at the same time basking in the attention. Like the abused child I was, I was desperate for positive attention and support. I wasn’t getting it from my crappy family and my friends were all inept/scared.

My stomach hurts.

Everyday, especially since #metoo has taken the news cycle by storm, I expect physicians to start decorating the headlines with their indiscretions and abuses finally being known to all, and him in particular, because it never happens once. Each day, I think, “Is today the day?” But it isn’t because they literally have our lives in their hands; they have the real power, so much more than a Harvey Weinstein, a Matt Lauer.  When women can speak out about their abusive physicians and how their behavior wasn’t “bad enough” for the medical board to act on, then I know a true reckoning will be upon us.

I want to stand arm-in-arm with all of the others- strength in numbers. I cannot and will not stand on my own with name and face, then medical records and sexual history shortly to be known to all.  My PTSD history, and many other things, will be used against me.  My anonymous complaint is as far as I can take my activism alone; the deep ambivalence written into that complaint is a red flag to anyone who knows how sexual abuse victims act and how abusers ply their trade. But years on from that complaint, he still gets up in the morning and treats patients, some of them just like me- vulnerable young women with thyroid cancer who have no support system.

I know I have done all I can do to draw attention to Dr. Overinvolved’s abuse, so it is now up to someone else to pick up the whistle and blow on it as loud and as hard as possible until his name, and other physicians like him who have been getting away with this for far too long, are all over news headlines.