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Chronic Snarkopolist: Body Disconnection

Post Published: 30 March 2011
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Category: chronic autoimmune conditions column, Chronic Snarkopolist, Column
This post currently has 8 responses. Leave a comment

Hello my loves!

Just today I was reading a beautiful letter from someone asking when she was going to get her neck back, “Hut Hut Hut” and it really sent a powerful jolt through me how much I myself have disconnected from my own body throughout different times in my own life.

One of my friends was undergoing cancer treatment and her doctor said, “How are you doing?” And Leslie replied, I’m fine and was about to discuss the treatment and symptoms, robot-like. Her doctor stopped her and said, “No, I mean inside here,” and tapped her heart. Leslie told me for the first time since beginning treatment she cried in front of her doctor.

We are taught again and again to give concise histories, to not cry (I do and I will) to act like a robot. Our bodies get so disconnected during treatment that our parts become the only thing being treated.  Once, when I started to blackout during a treatment a nurse said, “Get her orange juice she’s getting low blood sugar.” I was handed juice and they carried on and NO ONE asked me how I felt.

Throughout life we begin to disconnect from our bodies, to hate one part, to love another. We pluck and fuss and over-define. But during medical treatments it gets worse and we get even more disconnected from our bodies. Not only in theory are we disconnected, but our very body parts are hacked and sewn back on, poked and prodded. Pieces of us are removed, sometimes forever.

I used to tell people to fill up their missing pieces with love, with good thoughts, to say goodbye, to write memorials, to do anything to stay connected.  Yet – like anyone, I myself have found it impossible to stay fully present with my own body emotionally (and physically).

“You have a lesion here and here and a tumor there and there,” sounds more like a map of a foreign land.  It gets easier to hear of antibodies and lab tests when you just zone out and schedule things like a list of things that must get done rather than THINKING TOO MUCH ABOUT WHAT THEY MEAN.  Taking strange sounding medications that sound like something a person regurgitates is also easier done with distance.  And when injecting myself subcutaneously or getting IV’s and needles constantly poked into me, projecting my mind far away into a sweet land with blue seas is almost necessary against the rage inside me. After all I did NOTHING to deserve this.

Like anyone with chronic illness, I’ve been impossibly “good”  – I didn’t eat anything, misbehave, or do anything to have a body requiring such things.  If I had DONE something to DESERVE this or CAUSE THIS maybe I wouldn’t be so angry. But I didn’t. Life is strange and bodies are strange. My inner RAGE at both my lack of health, my finances, and what I must do to maintain my health force a sort of daily disconnect. And I’m convinced too much disconnection is no good.

How can anyone keep all this “disconnection” from creating more of it from our bodies? How to keep loving our bodies and treating them good? That’s what yoga, and self-care is about. How do we lovingly care for ourselves, create good bonds with people, and get up every day when we still have SO MUCH junk to deal with? That is what I’m dealing with. And I presume every chronically ill person does too. What are your techniques? I’m in the middle of my journey and still working through it. How about you?

I’ll be back same time next week! Kiss kiss!

-Melissa

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8 Responses to “Chronic Snarkopolist: Body Disconnection”

  1. yallolorry says:

    oh this is a beautiful piece Melissa. I don’t have cancer, just Hashimotos, I am grateful that I haven’t experienced many of the intrusive medical interventions you describe and my heart goes out to you and everyone going through cancer treatment which I know can be just hideous.

    I’d like to comment anyway though, this disconnect you describe is so prevalent throughout our society and medical practice so seldom treats the whole person. It’s an important subject to address.

    We think our minds and our bodies are separate entities and often we don’t even stop to consider what our souls might need or want, or even be crying out for…Yet all of these elements make up who we are, we are not just a body, or a mind, or a soul, we are all of these things and they all impact profoundly on each other.

    Human beings are complex and when we have rage inside, or are ignoring our innermost emotions, it makes sense to me that illness, or at least feelings of discomfort and fatigue could be being perpetuated.

    Loving ourselves, receiving love from others, listening to ourselves and being listened to and connecting with others, all of these things we need as much as we need good food and sunlight and exercise.

    I’m at a place with my hypothyroid where all my blood tests appear to be optimised (TSH, FT4 and FT3)yet I still have brain fog and fatigue, I’m doing CBT (cognitive behavioural therapy) to see if that might help and it’s helping me get present to levels of inner tension and stress I was not even aware I had until now! I’m a fan of increasing awareness.

    I don’t really know how much this (CBT) approach is going to help, I already meditate, exercise (very gently), eat well, feel loved, etc, and think I treat myself pretty well all in all.

    But I do feel that I am learning all the time and I am grateful for that. being alive is an incredible experience, a gift. I would never have wished to become ill yet I accept the lessons it is bringing me and I think the lesson to listen to my body and honour my needs is an invaluable one, one I needed to be taught. Perhaps it will ultimately even make me a better person.

    I’ve just been writing about some of this stuff on my own blog….so it’s timely that it’s come up here too. I’ll be so interested to hear what others have to say.

  2. Melissa, I instantly remembered an encounter from the past while reading your column. A few years ago I was going through some major health and body stuff, surgery, procedures, blood work all the freaking time, foreign bodies in my natural body, etc., etc., etc. I was low and dejected. One day while at the hospital for an outpatient visit, there was an event in the garden I decided to check out. Another wheelchair user friend who worked there rolled up to me and asked how I was and then put her warm and caring hand on my arm and held on. People touch me in all sorts of ways every day, but those touches are what I am now calling maintenance touch; they help me get through my day. Without those touches I could not live. But I very rarely experience any touch that truly moves me, that shows caring, that gets to my soul. We need that, especially in the throes of illness or disability when, as you write, our bodies are disconnected from our feelings, when we are getting through this procedure or that daily routine assisted by another person.

  3. Graves Situation says:

    Your friend Leslie’s doctor was pretty unusual. Most MD’s see an illness, an injury, a condition, and not the person. Part of it is the demands of their job. It’s much harder to do invasive surgery, prescribe dangerous treatments or drugs, or just deliver bad news to a whole, complex human being. Much easier to saw open the chest of “the triple bypass in room 306” than to recommend particularly harsh chemo to Susan, who is a criminal defense lawyer, sings in her church choir, and is awaiting her first grandchild.

    It’s easier for us as patients to have a diseased gall bladder removed than to think that a part of US is being taken out, thrown away, incinerated. Leading, of course, to a self-image of ourselves as diseased, dysfunctional messes. Some degree of disconnect is necessary to get through medical treatments, but there’s a huge price, too.

    All of us, sick or well, have the tendency to define ourselves as the sum of our worst aspects. We need to stop. Life isn’t fair, it’s true, but it’s always been that way. The better I get to know anyone, the more aware I am of the burdens they carry, most of them invisible. We love others despite their massive imperfections, but can’t do the same for ourselves.

  4. @chemo_babe says:

    i keep thinking of the moment my body was transformed from a private personal body to a medical object for treatment. it was truly a moment for me.

    i was getting a diagnostic consult with my medical team. there were 3 doctors and 2 fellows in the room. after we discussed my pathology report and the course of my treatment (a VERY emotional conversation, incidentally), my oncologist said, “let’s have a look at the tumor.”

    if there is a doctor equivalent to a train, that’s what happened. only without my consent.

    i took my top off, as instructed, and one by one the doctors “palpated my tumor.” just days before, this same activity would have been a bunch of folks lining up to feel me up.

    yes, i disassociated from this experience. yes, i learned that my privacy, my dignity, my feelings, were not to be of concern here.

  5. Jan says:

    Doctors have a tough job,I wouldn’t want it. They feel they have to disconnect from us to do their job,very sad for them! I was in a teaching hospital for surgery and every morning the doc plus about 8 of his students would show up. I noticed those kids looked terrified-probably because they wanted to answer questions correctly. One morning when they showed up I thought I have to help them, so I said good morning group and looked at each face. The transformation was amazing. Yes we must not disconnect from ourselves when we are ill, or any other time, but we also need to help our health caregivers to be human as well. Some never will, but there are those precious few who will listen and be part of our lives. For me I have the old fashioned idea that a doctor is almost part of your family, he/she knows more about you than most. It takes a great deal of time to find the right one, but its worth it!!

  6. Jody Schoger says:

    Melissa,

    Melissa,

    Look at this conversation you’ve started! You are wondeful. I hope everything illness has taken from you is returning to you today TENFOLD to see how many terrific women – who did nothing to deserve their illnesses – give words to the ways we disconnect.

    I had just reached a “healthy sense of self” as a shrink would say, when I was diagnosed with breast cancer. While many of us toss around a prosthetic like little bean bags it’s another thing entirely to have (as Lani wrote) men and women lining up to love this phrase – “palpate the tumor.” Twelve years later I still cringe. And I will never forget the look on my husband’s face. He had to disconnect, too…

    Thanks for being in my life,
    Jody

  7. mike5816 says:

    Melissa,

    I have always felt (what I consider to be) more connected to my body than the average person. This is probably even more unusual because I’m a man, although I have to admit I’ve been a very introspective person since childhood.

    If my diet gets off, I’ll often have a sense of “I need more Vitamin X, today.” It’s often oddly specific. I often can “feel” virus or bacteria inside my body a day before I develop symptoms of a cold. And I have more than one time predicted my TSH level to within one-third of a point of its tested value. I also think it’s this same mind-body connection that caused me to “hear” one day my thyroid sobbing back to me in guilty, disappointed despair “but it’s not my fault!” Perhaps it was my conscience getting onto me for putting all my poisonous anger and resentment onto the thyroid when really it needed to be directed toward the uranium mine that polluted our drinking water and didn’t tell anybody while we all just drank on.

    The reason I am posting this comment is because I think some of the ways that I connect with my body can be useful to others who might also want to connect with their body. It may sound odd, but I often have to disconnect my mind from my body in order to hear it… sort of the “you can’t see the forest for the trees” situation. By doing so, I can treat my body as another person in a conversation, and then I’m able to take turns both talking to it and listening to it (whereas normally, it’s just the background noise of the brain).

    I also maintain an on-line journal (which I prefer to keep private), which helps me express things that need to be let out (which is much more socially preferable than to go around smashing things and screaming in raging fits of Irritable Male Syndrome). What I have found particularly helpful (and fun) is that I turn body parts into characters in a play, each with its own lines and directions, and emotions. This just sort of happened one day—it wasn’t planned—but it got a lot of laughs, so I did it again, and it’s become therapeutic. It also is a way that helps me explain to others what my experience is like. They don’t usually understand what it really feels like to be tired 24/7/365, but they do connect with the emotions expressed in the following example:

    Brain: **grumbling** Dangit! I need more energy here! **desperate** C’mon, chop!chop!
    Thyroid: **Scotty voice** I’m givin’ ya’ all I got, Cap’n. But there just isn’t any more.
    Brain: **frustrated** Oh! Why do *I* have to do all the work around here of keeping the supplies up, hmmm?
    Eyes: **happy dance** Oh look! Sparkles!
    Brain: **excited** Sparkles, Where? Where?
    Mouth: **yawns**
    Brain: Sparkles? Sparrkllzz.z..z…z… Zzzzzzzzz **engines out of gas, sputters, dies**

    I think this works for me because by giving my body parts a voice, they can then communicate to me and I can hear them. And the more I communicate, the more I understand. Understanding is power.

  8. Merrit says:

    Simply, amen to everything said here.

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