things i am not thankful for

I have actually been writing a lot lately. Out of my fingertips have been pouring my darkest thoughts about cancer, things I just can’t bring myself to inflict on my readers without the context of a dozen “happy” posts on either side. You will have to wait until my book gets published to read them. Unless some of them come out here.

It turns out that while I have been thinking and writing these dark words, someone else was thinking them too and wrote a wonderful piece for Gawker putting almost everything I have been thinking and feeling into words.

You see, it is almost 2014, and almost nothing has changed since this summer, since this spring, since that day in February when I had the surgery that set everything in motion that has colored these past almost 11 months. Yes, I got somewhat better, I got somewhat worse, I got better, I got worse, I got a little better. I am still one tube down (my PICC line), and waiting a very, very long time to get my other one (my lung catheter) out. But when I complain to my doctor about my persistent nausea, he says to me, “Your body is still spending a lot of energy fighting cancer and healing. You need to rest.”

I say, “I have been resting for 11 months and I’m tired of it.” I ask him if he thinks I will ever feel a hundred percent better and he says yes. “You need to give PRRT more of a chance to work. It might take many more months.” When I try to walk up the stairs to my apartment, still, I wonder if I will ever walk up stairs and not feel like an old lady again. What is it like to feel young?

Do you see what happened two paragraphs ago? I started writing about how awful I have felt since February and I ended up cushioning it with “getting better” and getting a tube taken out. I did that because everyone tells me to be positive all the time and that’s what you do when you are in a shitty situation and you try to be positive about it. That’s where all of my “i am a liver” stuff comes from, that’s why when I write something depressing I almost always try to write something I’m thankful for with it. I’m thankful for a lot–I expect I will be reflecting on that more in the coming week.

It is true that it is a more pleasant for myself and those around me to feel positive, to have a good attitude. I can do that. I do do that most of the time, without thinking about it, without forcing myself to. I don’t feel like doing that right now. There should be a place and a time for the negative feelings and attitude. They are part of the experience, and they are impossible to push away completely.

The truth is, I don’t believe that thinking positively will in any way help me get better. I don’t believe it’s as simple as that. What does positive thinking even mean? Is it visualizing positive outcomes all the time and ignoring everything else? That doesn’t sound healthy to me. It’s impossible to be positive all the time, and faced with a terminal illness on top of feeling shitty all the time and having nothing productive to do with one’s day, it’s hard to be positive at all.

This is clearly not the typical cancer patient (or cancer liver) rhetoric. Cancer patients ignore all these things and run marathons, they change their unhealthy eating habits, they triumphantly return to life from treatment and run for mayor. I have so many friends who have done amazing things during and after their cancer treatment and sometimes I wonder why I can’t be more like them. But maybe from the outside I look like them. I got my master’s degree while I had cancer. I write a blog. But I also sit on the couch all day and feel sorry for myself.

In the eloquent words of Lauren Sczudlo on Gawker, “Cancer patients are expected to be poster children of a movement, meant to reassure the masses that this plague, and even imminent death, can be overcome with positive affirmations and attitude adjustments. We are a society that believes in control, to the point of delusion. We are a nation founded on the idea that any obstacles can be surmounted and dreams reached through hard work and self-control.” She then admits, “I am the unpleasant face of cancer. I am not accepting pain and loss gracefully. I am a disappointment.”

I feel like this too. I cushion all my negativity with positivity. I am afraid to post my darkest words because then everyone will know that I’m not brave and I’m not dealing with this disease in any special or inspirational way. I am negative just like everyone else and I think this whole situation sucks. Screw the silver linings I have found. I would trade my writing voice and my wonderful cancer friends and my new, more mature and relaxed, perspective on the world for not being diagnosed three years ago. I think.

“Many people want to believe that cancer can be overcome with enough willpower and exuberant positive affirmations,” Sczudlo says. “The notion that we can control cancer by dieting—cutting gluten, dairy, GMOs, and alcohol from our diets or binging on kale juice, green tea, and soy—has trickled into Facebook feeds and taken over targeted ad space. We feel more in control of our lives if we believe sick people got that way by making bad choices. This hopeful but woefully misguided belief that if the cancer patient eats like a Paleolithic person or ignores her fears, she will ‘beat the odds,’ denies patients the freedom to mourn the loss of her old self—because cancer almost always kills a more fearless version of ourselves.”

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11 Responses to things i am not thankful for

  1. zwanny63 says:

    All week I’ve bee wrestling with the word melancholy. Sounds nice, but isn’t a nice word.

    I see I’m not alone. This carcinoid NET cancer crap sucks!

    Well written Lindsey!

  2. Cathy says:

    Lindsey, we as a society do not allow people to “grieve the loss that is a partner to change”. When a change is thrust upon us…be it illness, death, divorce, or any endings we did not choose we are expected to have dealt with it and moved on at a certain point of time. Dark feelings can make others feel uncomfortable, and when they do not know what to say or how they can fix it they either distance themselves or expect the person facing the difficult change to be heroic and positive as they are expected to move forward. Hiding how we are or how we feel may make others feel comfortable but it diminishes oneself. Feelings are feelings. As you said “There should be a place and a time for the negative feelings and attitude. They are part of the experience, and they are impossible to push away completely.” Because one feels as you do at this moment does not make you a negative person..or for one second someone who is not brave. YOUR COURAGE is right here in this post for telling the truth of where you are at. Thank you for your honesty..often truth is never spoken for the timing is not right….As the holidays are upon us they are depicted as happiness and joy…which often places the pressure on us all to put on the mask expected of us to wear. When honesty is spoken it allows the truth to pass between individuals …I am thankful early this morning for a young woman who shows the courage to speak her truth. And I continue to hold a light of love, prayer, and healing to surround you. For I do not just love the Positive…I love all of you…Hugs and Blessings…Cathy

  3. Gilda says:

    Dear Lindsey,
    You are spot on with this piece. You and all of those who battle like you certainly have a right to feel however you feel and whenever you feel – negative or positive. The problem is that other people think everything is about them and they want to find hope in situations. Your health is about you and only about you. Maybe slightly about those who care for you but they are justified to have dark feelings too. Often other people just don’t know how to approach these things. Most of them mean well and some don’t. I think it is best to just lean into whatever feelings you have at the time. Let them have their course, then decide which way you want to go with the day. There is no right or wrong. All the best to you! Gilda

  4. Julie says:

    Over 1000 people get this blog in their email in box every time you post it. Your ability to express your feelings with thought provoking honesty is probably more meaningful and powerful than you realize.

  5. Kristin says:

    Hey Lindsey, I’ve been following your blog for a few years, since when your Joseph Gordon Levitt video came out. I want you to know that I don’t think it is only “being positive in the face of difficulty” that makes you special or noteworthy, or what keeps me thinking about you and being impressed with you. It is that you are brave enough to be honest about your experience, to show the reality of what it is to the world.

    Honesty, and the courage to be honest, especially when that honesty might not be what others want to hear is something I find incredibly refreshing and brave. You have every right to feel frustrated, or sad, or scared, or whatever emotion it happens to be. Your experience is valuable to me and to others in whatever form it takes.

    I want you to know I’m thankful for having seen that video, and for your blog. You have that special thing that I’ve seen so rarely in my life, that spark that makes you one of those people that just leaves an impression on all those you come into contact with, and they somehow feel like their lives are a bit better for having encountered you.

    All the best to you and your family this thanksgiving.

    -Kristin

  6. suckyguts says:

    I AM DEALING WITH OTHER HEALTH ISSUES NOT CANCER. YOUR BLOG REALLY MADE ME THINK–WHO BENEFITS FROM ME HAVING A POSITIVE ATTITUDE (DEFINITELY NOT ME). I GUESS IT PROBABLY BENEFITS MY FAMILY BECAUSE THEY WANT ME BETTER. MY DOCTORS BECAUSE I’M SO BUSY BEING POSITIVE THAT I DON’T SHARE THE SUCKAGE–NOT GOOD BECAUSE THEY ONLY KNOW PART OF ME. I DON’T WANT TO BE NEGATIVE BECAUSE THEN I WOULDN’T HAVE HOPE, NO ONE REALLY LIKES A NEGATIVE PERSON. BEING POSITIVE IS MY WAY AT KEEPING EVERYONE AT ARMS LENGTHS.
    I THINK I NEED A BETTER TIME OF LETTING PEOPLE KNOW “MY LIFE SUCKS! I REALLY THINK IT IS HELPFUL WHEN PEOPLE KNOW THE TRUTH AND KNOW THEY ARE NOT THE ONLY ONE WHO HAS A BUILD UP OF NEGATIVITY.
    THANKS FOR LETTING US GET TO KNOW YOU HAVE A DARK SIDE.

  7. perkofashion says:

    thanks for sharing this article…..very good

  8. Willow says:

    Dear Lindsey, I have been following your blog for a couple of months now and want you to know how much your words mean to others. Hopefully it is also cathartic for you. You are putting into words beautifully and concisely feelings and things we often keep inside or don’t have the words to express. My sister has a form of primary liver cancer (cholangiocarcinoma…bile duct cancer) and every day I search for answers, ideas, support, and understanding that can only come from the point of view of those living with cancer. You really have opened my eyes on point on the “positivity” discussion. I went to the article you mentioned (Lauren Sczudlo’s) to read more about this. Naturally, I try to find a bright side or downplay/soften bad news in an attempt to comfort my sister, but now realize that simply listening and allowing her negative feeling is more appropriate. I don’t want to make my sister feel she has to be upbeat all the time just to keep everyone else from feeling pain. Thank you so much for your thoughtful post.

  9. John says:

    Hi Lindsay,

    I just found your blog today. This is the first post I’ve read. As Cathy above said:

    “I am thankful early this morning for a young woman who shows the courage to speak her truth.”

    Hear, hear!

  10. Stephen Haney says:

    Dear Lindsey,
    Thank you for sharing your life. Thank you for being honest. Thank you for being brave.

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