Breathing in, Breathing Out: Tonglen

April 18, 2012 at 1:32 pm (Chronic Pain, Disability, Living, Living With Chronic Illness, Mental Health, Tuberculosis (Inactive)) (, , , , , , , , , , , , , )

There are two topics that have been vying for blog post-dom, and then I realized that maybe they can coexist in a single post. One is how I use the meditative practice of tonglen to help deal with my health issues, and the other is how I struggle with well-meaning people who think I don’t know how to google. I know, it doesn’t sound like they can be the same post, and it may take some literary magic on my part, but let’s give it a try.

First, I should explain what tonglen is. Most Pagans, when utilizing meditation as a way to deal with stressful things, visualize that the in-breath is the inhalation of that which is good/useful/healing for the situation, and the out breath is the exhalation of that which is unwanted/bad/hurtful for the situation. Breathe in relaxation, breathe out stress. Sound familiar?

Tonglen, a Buddhist practice, looks at this practice and sees that it’s kinda backwards. Sure, it works in the visual sense, but not in the physical sense. When someone is inhaling, their muscles are tensing as their body adjusts to the action of the intake. Breathing in, in this fashion, is an action. In comparison, when someone is exhaling, their muscles are relaxing as their body returns to a base state. Breathing out is a reaction to breathing in. Do it now – take a deep breath in, and then let it out. After which one do you feel more relaxed, more at peace, in general, better?

So when practicing tonglen, on the in breath you think about all the people, places, and things that have experienced the same frustration, pain, or stress that you are dealing with. I breathe in, and I think about all the people who are at home right now trying to recover from surgery but real life keeps getting in the way. I hold the breath for a moment, to give myself the freedom to really feel the frustration and pain not only of my own situation, but multiplied by all the other people on the planet who feel the same way. Then, on the out breath, I send love and patience and healing to everyone I am sharing this experience with, including myself. After all, I am a subsect of “all the people struggling with recovering from surgery”.

I find this helps me in a lot of ways. It reminds me that there is no human experience that is not shared. No matter how much I feel isolated because of my complicated medical situation, I know that it’s statistically impossible that I am the only person on the whole planet who is as medically complicated as I am, and I bet there are many who are worse off. So before I even begin the actual practice, just the thinking that leads to it is useful. I am not alone, and people have survived this situation before.

Then I breathe in, and I really allow that sensation of frustration to tense my muscles, to contort my body in whatever way will give me the most focus on how yucky it feels, and how terrible it must feel to all the other people who are suffering in the same way I am. I give myself permission to feel bad about it, to feel a little sorry for myself, to fully engage in my emotions.

And then I let go.

My body relaxes. I cultivate love and patience for other people (which is usually much easier than doing so for one’s self), and then slowly apply that same love and patience inward. The more I breathe, the more relaxation I feel. The less tension I feel on the in breath. The more I feel like I am connected with a band of strong, inspiring people who struggle in the same way I do.

I practiced a lot of tonglen in the hospital. In – I think about all the people who are waiting in this ER, who have been here as long or longer than I have . Out – I send them patience and ease as they get the best possible outcome for their emergency. In – Many people are frustrated at their nurse, who is slow to respond and has her own agenda. Out – I send love to both those who lie in wait for care, and to the nurses who are having a bad day due to inpatient patients.

It is invaluable to me when I get totally overwhelmed by all the medical shit that’s been going on for me. I was just telling a friend that if you had told me six months ago that I was in the calm before the storm, I would have laughed at you. You mean having inactive TB and dealing with a new neurologist is the “calm” time? Right. Now things have grown so exponentially more difficult and complex, I can barely make it through the day without crying.

When I get frustrated, I frequently post to Facebook, or to my blog. As I’ve discussed before, my friends and readers want desperately to feel of use, to do or say something that might help the situation. The current favorite is to tell me to report Dr. WLS to “the medical boards”. They post links that take a few minutes of googling to find. I breathe in, because I, too, have google and have looked at those same pages, usually before you post them. I breathe out, because I know that they did that because they love me and want me to be happy and well. But what I can’t seem to communicate effectively is that my medical situation is a big tangled web, and the only person who really knows how it all works is me. I’m willing to share it with someone who really wants in, but being in means a lot more than reading my blog and trading a few emails. It means going with me to the doctor’s appointments to hear what they’re saying. It means personally understanding what it’s like to have doctor’s appointments three days a week when you don’t drive, and most of them would cost more than $50 by taxi. It means understanding that I, too, have Google, and do actually spend time researching things like where to effectively complain about Dr. WLS.

You'd think this is an exaggeration, but replace Blondie here with a fuzzy haired Del and it's about accurate, books and all.

I breathe in for all those who hate Dr. WLS for what he’s done to me, and I breathe out patience. Yes, technically I could probably seek out another surgeon to take over my aftercare. But they aren’t the surgeon who performed the surgery, and therefore they’d be relying on whatever Dr. WLS tells them (and not me, because I am not a surgeon). This is what I was told when I cold-called another general surgeon about possibly being seen as a ‘second opinion’. Starting from scratch with a brand new doctor in any situation is difficult, and I know this because I’ve seen five different neurologists, two different infectious disease doctors, two different primary care physicians, etc. So in the end, I choose to get frustrated and abused by Dr. WLS then go through the rigamarole of seeking out a different surgeon. If this means you’d like me to stop complaining about him, because it’s my choice to see him, then I will.

I try to illustrate my current medical situation this way: Imagine a Del. Now imagine over the Del’s head are a series of balloons. Each one represents one of the medical situations I’m currently facing. One balloon says, “Emergency ab surgery/recovery/scar in a place on the body under a lot of stress/too much edema”. Another balloon says, “Unexplained chronic pain”. Another says, “Needs a D&C and ablation or could get cancer.” Another one is labeled “Has inactive TB, which could go active at any moment, and really the only organ we know how to help if it gets attacked is the lungs. Also, you have a history of infection, so it’s likely to go active.”

Kinda like this.

For any one person, this balloon (pick one) would be their entire existence. They would be focusing all of their free time on researching what to do, contacting doctors, going to doctor’s appointments, taking whatever treatments are prescribed, and changing their lifestyle to accommodate this balloon. I don’t have that luxury. I have too many balloons, so many that they’re threatening to carry me away to a place called Death. I’m doing as much as I can to keep up, without forgetting that I’m also a human being that needs to eat and sleep and spend time with friends and watch Glee and feel normal from time to time.

Maybe you’d handle it differently. Maybe you’d go all gangbusters and spend every waking minute doing whatever it takes. I can’t, because I feel like crap and I’m tired all the time and I’m in a lot of pain and there’s only so many kinds of effort I can give before I can’t anymore. In the end, it’s my body and my life and I have to do with it what I think is right, and many times I choose the “feel like a normal human being” over the “holy crap balloons”. On average, I have at least one doctor’s appointment a week (these days, it’s closer to two or three). I make at least six phone calls, emails, or other forms of contact dealing with my medical situation a day. I spend an hour or two with Google, looking related tI hings up (everything from who to send the complaint letter to about Dr. WLS that will actually matter, to how other people dealing with chronic pain cope with the added discomfort of surgical pain, to how long I can put off that D&C until I’m really risking cancer).

But for now, I will breathe in all of your frustrations, all of your desires to be of use, and to be helpful, and the feeling I know intimately of seeing someone you care about suffer and know there is nothing you can do. I breathe out love, and patience, and compassion, and understanding. I do love all of you, even when you drive me a little bonkers.

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15 Comments

  1. Andrea McMillan said,

    I may not know you but I love your writing. And when it’s here, I read every word. ; )

    • dying for a diagnosis said,

      Thanks! I hope it’s useful in some way. After all, that’s what Mr. Goaty Pants keeps telling me when I would rather take a nap. πŸ˜€

  2. Fala said,

    Drive the little choo-choo ZIP! Round the bend. πŸ˜‰

    Seriously though… I like that. Tonglen… I will have to keep that in mind. Thank you.

    • dying for a diagnosis said,

      I don’t get the train reference. But my head is all muddled anyway.

      • Fala said,

        ‘s okay. You mentioned that we drive you a little bonkers and my brain went for the train reference – right ’round the bend. πŸ™‚

  3. Eric S said,

    Hugs, I generally assume you will know more than I do on these things. You are an intelligent person trying to manage a complex process who has spent a lot time researching things. All I know how to do is wish you luck. So, Luck.

    • dying for a diagnosis said,

      But I *do* understand that other people are doing their best. It’s a hard balance to find, between not taking it personally when I hear the same suggestions or get a link I looked into before, and loving them for taking time out of their life to try and make mine a little better.

      Eric, your daily emails are a good example of a way people can make me feel a little better. Every day, Eric sends me a one sentence email like, “Happy Thursday! Hope things go well today!” It’s wonderful, and I look forward to them. So thanks. πŸ™‚

      • Eric S said,

        Awwww! OK, will keep it up!

      • Tricia said,

        Really? See I would be afraid to write, thinking that I’m intruding and that my emails are a bother. But if they brighten your day, I can certainly send you an email πŸ™‚

      • dying for a diagnosis said,

        I love emails, as long as there is no expectation of a reply, timely or otherwise. Email gets stressful if there’s a reply implied. But a short note saying “this link made me think of you” or “I saw this thing on my walk and I took a picture for you” or “Hey, just thinking about you and hoping you’re okay” are all fine things to send.

  4. Evil Voodoo Celt said,

    Thank you for the info about tonglen… the concept is intriguing and I will have to think about it.

    I will remember the other part of your post, too. Thanks for the reminder. I’ll keep you in my prayers, as always.

    ::hugs::

    • dying for a diagnosis said,

      When you’re done thinking, I’d love to hear what comes of it. πŸ™‚

      Thanks, Mr. Celt.

      • Evil Voodoo Celt said,

        What it reminds me of is tummo, where you actually produce the heat on the out-breath… note that I don’t claim any expertise in this nor do I use it as a meditative practice… just as a practical way to try to keep me warm occasionally. πŸ˜‰

        Honestly, meditation is one of the areas that I need to work on… you’re right in that most of what is easy to access is focused on no-mind or other shut-down paradigms. These tend not to work well for me, and I need to look into something like discursive or other more “active” meditation practices…

  5. Wintersong said,

    > If this means you’d like me to stop complaining about him, because it’s my choice…

    I call BULLSHIT on this one. I think you pretty clearly explain here (and have in more detail on the phone) why it *isn’t* really your choice to see Dr. WLS. Not having any options isn’t the same as making a choice, and as long as your circumstances essentially require that you see him, you go right on complaining if it helps you feel better to vent.

    • dying for a diagnosis said,

      In the grand scheme of things, I am choosing, but I do agree with you at the same time. I mean, I *could* go to another surgeon. I could ask that Dr. WLS remove my staples and drain so I don’t have to see him anymore. I could have chosen not to have the surgery.

      But yes, you’re right. The hospital called Dr. WLS before consulting me, I knew that at the hospital I was in there were no other surgeons who would perform the surgery (when I had my first hernia, I spoke to three other general surgeons and they all thought Dr. WLS was the best choice, and excluded themselves), and now I’m stuck with him because he did the surgery and therefore knows the most about what the aftercare should be. Also, if I were to have some sort of trauma to the abdomen now or in the future, of such magnitude that I was rushed to the hospital via ambulance, I would be facing Dr. WLS again.

      But as I noted on Facebook, I now have in my possession the form needed to file an official complaint with the Maryland Board of Physicians.

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