Control Freak

This may seem odd to those of you who know me well, but it is only somewhat recently that I have discovered that I am a control freak. I think the first time I really saw my desperate need for control was when I was living in Kenora, and I became curious about a situation that was causing me a lot of anxiety. Well, actually, it was my rumination about a potential situation that was causing me anxiety. Well, actually, I realized- as I became curious about the whole thing – I was causing myself a lot of anxiety by trying to predict every possible outcome. By trying to prepare a defense or response to each of these outcomes. I was trying to maintain a sense of absolute control over the whole thing. And it dawned on me that without this sense of control because I did not trust myself enough to know that, however the situation would go, I would figure it out, and be okay.

With time, I have come to realize that a lot of what I previously thought of as my ‘personality’ and even my ‘strengths’ – people pleasing, over-achieving, perfectionism, my incessant drive – were actually just all mechanisms I had developed to help me maintain a sense of control. I suppose I developed these fairly early on in life – at home and in social settings, at school, in sports, at work. I sometimes feel contempt for those behaviors, especially when they feel out of my control (the irony is not lost on me here), but I am working on finding compassion for those behaviors and the parts that drive those behaviors.

It’s helpful for me to look at our larger social context, and the ways these behaviors have been reinforced by our profit and productivity-driven culture. I have been the perfect little product of our capitalist ways – finding my sense of worth in my productivity and convinced that the solution to my woes lies in some product I must purchase. It’s wild to me that the awareness of this has not stopped me from finding myself thinking, in dark times, I’d be happy if I just … had that pair of pants …. had that new job …. lost some weight …. curled my hair more often …. traveled more …. decorated my place … and on, and on.

This part of me that believes it needs absolute control has been reinforced by those transparent dangling carrots. Those forever unachievable goals that we have been conditioned and taught to believe we want, nay need, to be happy and well. Not that those things don’t bring us at least some sense of happiness, achievement or completion. In fact, it’s because they do bring us those dopamine hits that we continue on chasing those never reachable carrots.

I’ve become aware, though. Awake, if you will. Able to see the cycle of the excitement of the chase, the energy and the drive it creates in me, at times carrying me through immense hardship, followed by a fleeting sense of accomplishment, only to quickly be replaced by a void. And then the cycle begins.

With this awareness, I’ve been able to catch the thoughts and feelings that drive this cycle. The feeling of not-enoughness. The thoughts that I am to blame. That I must beat myself into submission and discipline if I want to achieve contentment. And that anything short of that represents my individual failure.

This cycle has shown up in my journey with melanoma. And it has sorta sent this part of me – this part that has survived and even thrived by maintaining an absolute sense of control – into overdrive. It has brought back patterns that I worked hard to change. Patterns of extremely negative self-talk, feelings of failure and unworthiness, apathy, binge eating, depression.

As I wrote in my last blog post, I had not been too worried about a melanoma diagnosis while I waited the two months for the biopsy result to come in. And although I had my initial moment of intense shock and emotional reaction when the dermatologist announced the diagnosis to me in April, I don’t feel it had a huge impact on my day to day life. I did my research on the risk factors for metastatic melanoma and felt that, with my biopsy report details and my clinical situation, I was at fairly low risk. I also looked into the sentinel lymph node biopsy procedure, and it seemed fairly minimally invasive. I wanted to speak with the surgeon about whether it was even really necessary – to give you an idea of how not too worried I was.

But I was hit with a new wave of reality about 3 weeks ago when I met with the surgical oncologist who reviewed the surgeries with me (wide local excision and the sentinel lymph node biopsy). She confirmed my suspicion (and worry) that, because of the location of the invasive melanoma (my upper back), it was possible that both neck and axillary (arm pit) lymph nodes would be involved. Damn. She also discussed the risks of the surgeries with me including seroma in the axilla (a lovely build up of fluid after the surgery), and the risks of nerve damage – including damage to a motor nerve in the neck. She told me a second surgeon would have to be consulted if neck lymph nodes were involved, given the more complex terrain. She also drew on my back around the scar to discuss how the wide local excision would take place. She said this was best case scenario – but that there was a chance that given my young age and healthy taut skin, she would have to do a larger surgical procedure to move a flap of skin around to bring the whole thing together. Below is the picture of the excision they hope to make on my upper back.

I could go on about the medical details of things, but the thing that is the most difficult about all of this is the absolute lack of control it has triggered in me. This sense of loss of agency. This requirement of letting go, trusting. Trusting my body, trusting western medical healthcare, trusting strangers, trusting life.

I’ve noticed random intrusive thoughts about metastatic cancer. They show up when an ache or a pain shows up – maybe it’s metastatic cancer, my brain chimes in. Or when I am sweating more than usual …. could be metastatic cancer by brain chimes in again. Or when I just ate something “unhealthy”, ate too much, or didn’t move enough …. I have intrusive thoughts about how my actions and inability to care for myself properly will cause me to have metastatic cancer. That if one day I do have it, it will be my fault. And the shame rushes in.

Being a medical professional also just adds this layer of weird pressure. Because somehow, since I understand all of the medical science better, I should feel better? No, what it does is give me an expectation that I should worry less. I now realize how silly it is to try to reassure a patient by telling them the statistics of things. That the risk of a complication or progression of disease is only 1%. At least, I realize how little it is helping me right now. In fact, all it does is make me feel as though my worrying is silly, unwarranted. When what I really need is permission to feel worried. Permission to feel scared. Permission to move through the stickiness of all of this without being rushed. Without being made to feel as if it is wrong to worry and feel scared. I need permission to human.

How does one regain a sense of agency without also feeling individually responsible for the outcomes of such a big thing like cancer?

I have always wondered what it would feel like to have cancer. And I guess this is it. It’s so very bizarre. Because in a way, nothing changes. Life goes on.

But I kinda don’t want it to just be the same. I always thought having cancer would be life changing. That it would propel one towards profound realizations about the significance of life, and especially the little things in life. That it would provide me with the spontaneous drive to finally get unstuck. This almost magic thing that would finally help me achieve effortless contentment. Because facing our mortality must surely make us appreciate our vitality. The finite nature of life.

Alas, reality rarely lives up to my romanticized ideals.

I am realizing that it’s up to me to find meaning in the midst of this mess. That, although I have no direct control over the outcome of this, I do have control over how I chose to show up for this journey. I have control over the meaning I make of this experience.

In my therapy session last week, my therapist and I barely exchanged hellos and I began to cry. I cried, and I cried, for a solid 10 minutes before I could speak at all. I had spent the last two weeks in complete survival mode, oscillating between anxiety and depression, unable to rest yet unable to be productive. I had wanted to talk about the binge eating that had been overwhelming, and also the terribly mean narratives that had been playing non stop in my head. It all came down to these parts, these terrified parts, just doing their best to keep me safe in the best ways they knew how. And I had to find a way to be present, pay attention to this terror inside me. Rather than run away from it, or will it away.

You know, my therapist said, there’s some things in life we just aren’t meant to go through alone. In fact, we aren’t really meant to do anything alone.

I laughed.

I laughed because that is the very thing that I tell my loved ones when they are going through exceptionally difficult things – divorces, death of a loved one, significant mental or physical health challenges.

I laughed as I told my therapist “Oh, right. That means me too”.

I felt myself instantly relax as I was given permission to struggle, and to need help and support.

Since then, I had my nuclear test for lymph node mapping, and unfortunately, it showed that lymph nodes in both my axilla and the right side of my neck are involved in draining the site of the melanoma. This means I will have to have lymph nodes removed from each of these areas to check them for cancerous cells. Going through this test and learning the results has been another difficult wave of emotion and stress to navigate.

I don’t really believe things happen for a reason. The universe is much too chaotic a thing for me to really believe that. Yet I think that believing that there is no meaning in life is a very depressing way to live.

So I have decided I want to find meaning in this melanoma journey. I want to use it as a way to lean deeper into life, to lean deeper into myself, into my humanness, into relationships.

This need for control, although it has brought me much success and external validation and admiration, it has also brought me terrible loneliness, feelings of worthlessness, self-harming, and unachievable standards.

So maybe the gift in this journey is permission.

Permission to need help. Permission to lean into my community. To struggle, to cry, to feel scared. And to not be able to do it all alone. Permission to admit that I don’t have control over the outcome nor my emotional journey, and that this lack of control feels absolutely terrifying to me. Maybe this journey can help me get closer to a place where I can let go. Let go of this need for control, perfection and also a letting go of the harshness that comes with this need for control. May I lean into compassion, acceptance of what is and the absolute messiness that is being a human. May I learn to trust myself to navigate this journey, and especially trust that even without a sense of control, however the situation will go, I will figure it out, and I will be okay.