How To Be Sick: Discussion 8

“I cannot be genuinely mindful–open to my moment-to-momet experience without hesitation or hiding–unless my mind is benevolent…” —Sylvia Boorstein, Happiness is an Inside Job

In the second half of the section of the book titled Turnarounds and Transformations, we read about the following topics:

  • Mindfulness-of-the-Present Moment Practices, or “drop it.” “Take your mind back in time to a stressful memory, and drop it. Take your mind forward in a time to a stressful thought, and drop it. You’re left in the present moment. Even if that moment is accompanied by bodily pain or discomfort, it will be easier to relax into the discomfort, riding it like a wave, because you won’t be making it worse by adding to is the mental suffering that comes with thoughts about the past and the future…”
  • How to stay mindful of the present moment, such as half-smiling while listening to music or mindfulness while making tea (Thich Nhat Hanh), or any mindfulness based stress reduction  materials by Jon Kabat-Zinn.
  • Wise action: “actions that lead to the cessation of suffering are to be cultivated and actions that enhance or amplify suffering are to be avoided. Wise inaction can thus be thought of as simply not engaging in those actions that make our condition worse.” Along these lines, we read about a few practices: “The Middle Way,” “One Thing at a Time,” and “Help!”
  • Zen teachings: “Shocking the Mind,” “Don’t-Know Mind,” and “The Poetry of Zen.”

Discussion Questions

  • Have you incorporated and mindfulness meditations into your life? If so, how has this helped you cope with chronic illness, pain, and disability?
  • Wise action and wise inaction, like many aspects of life, are easier said than done. Can you give an example of how you recently engaged in either wise action/inaction, and any of the associated practices.
  • Do any of the Zen teachings described in the last chapter resonate with you?

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.

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The Time It Took Me 7 Hours To ‘Start’ My Day

It’s 4:08 p.m., and I just finished shaving and getting dressed for the day. (Why not just stay in my pajamas, you might be asking? Well, because I have a student coming later on for a tutoring session…)

It all started earlier today, when I woke up a little past nine to start getting ready for my regularly-scheduled Monday morning physical therapy appointment. I got from my bed to the bathtub without any major problems, but as I sat there soaking in the hot water, the severity of my situation started settling in. I tried humoring myself, as I tried to imagine what new phrase I could use to describe how I was feeling.

And this is what I came up with:

People often refer to waking up, taking a bath, and getting dressed as starting their day. When you live with rheumatoid arthritis, sometimes this is your day.

As I continued sitting there in the tub (wondering how I’d even get back up on my own), I decided I needed to take some items off my to-do list, all in the hopes of figuring out how I’d have enough strength to make it to my physical therapist’s office within the hour. First, I decided not to brush my teeth. Then, I took shaving off my list…after all, what’s the problem with having a little stubble, I thought to myself. It was at this point that I finally realized the futility of such a line of thinking: if I couldn’t even groom myself, I certainly wouldn’t be able to get dressed, get in a taxi, and walk the distance required to get to PT.

So as I finished my bath and made my way back to bed (apparently drying myself was another item I took of my list–without even knowing as much–as my partner nervously grabbing some towels and tried to pat me down before I hit the sheets), I announced that I would not be going to physical therapy. I was a little down about the fact that I couldn’t even make it to PT, but I knew that the decision I was making was the right one.

My partner made the call, cancelling the session. Ten minutes later, just as my tears were going to start rolling as I envisioned another morning stuck in bed, my physical therapist called. She was on her way to my house, and would be at my front door in ten minutes. She arrived just as she said, and then spent the next hour and a half administering some of my favorite treatments (ultrasound) in the comfort of my own bed. When she left I was still in a lot of pain, but I was just a tad bit better. I was wrapped with heating pads, microwave wraps, and blankets, and was told to stay in bed for the next few hours.

Which is exactly what I did. And by the time late-afternoon rolled around, I was once again moving around with much more ease. I jumped back into the tub and took another bath, performed my usual grooming session when I got out, and changed into “regular” clothes.

I’m not pushing myself too hard. I’m sitting at my desk, and hope to be here for at least the next couple of hours. Then, it’ll be time to do everything in reverse. I’ll get back into my pajamas, get back into bed, and spend the rest of my awake hours reading and doing some other work on my laptop computer, maybe watch a little television.

All in all, it took me about seven hours from start to finish to complete the “start” to my day, and as I thought earlier on, doing so was indeed a large part of my day. Days like today used to make me sad, and I’d get depressed. Now, I find a lot of comfort in figuring out how I can still do different things, even when simple tasks such as brushing my teeth and shaving my face were outside of my realm of possibility only a few hours back.

It used to be that when my mornings were as rough as the one I had today, I would completely write off the rest of my day. I now know that this need not be the case. Sure, I still have to take care of myself, and take things slowly…but I can still continue to move forward, even if it takes a little (or a lot!) longer than usual.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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How To Be Sick: Discussion 7

“When we learn to observe sensation without reacting in craving and aversion, the cause of suffering does not arise and suffering ceases.” —S.N. Goenka

In the first half of the section of the book titled Turnarounds and Transformations, we read about the following topics:

  • Paticca-samuppada, or the wheel of suffering. “We experience [mental and physical] contacts as pleasant, unpleasant, or (less frequently) as neutral sensations. If the experience of the contact is pleasant, we want more of it, which is desire. If the experience of the contact is unpleasant, we want it to go away, which is simply another form of desire–the desire for it to go away–usually referred to in Buddhism as aversion.” The chapter closes with “Practicing with the Wheel of Suffering and the Four Sublime States.”
  • Tonglen practice: breathing in the suffering of the world and breathing out whatever kindness, serenity, and compassion we have to give. Toni provides examples of how she applied tonglen practice to working while sick, medical test results, family gatherings over the holidays, and missed birthday parties.
  • “With our thoughts, we make the world.” —Dhammapada. Chapter 12 focuses on Katie Byron’s “Inquiry Practice.”

Discussion Questions

  • Recognizing our reactions to certain events before we apply a judgment of desire or aversion is not always easy, but as we have read, being able to do so is an essential aspect of getting off the wheel of suffering. This is applicable to all aspects of life, and not just to living with chronic illness. How does “Practicing with the Wheel of Suffering and the Four Sublime States” resonate with you?
  • For me, one of the most powerful practices that has been described in this book is Katie Byron’s Inquiry Practice. Through the use of four questions and a turnaround, we are shown that by changing our thoughts, we can remake our world. Please share a common suffering thought that you have experienced on a regular basis, and describe how–through inquiry practice–you have been able to turn this thought around.

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.

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Cleanup In Aisle 7, Please

Yesterday morning, I started my Friday in my usual way: I left my house at 10:00 am, in order to go to physical therapy. (I rarely ever make commitments before lunchtime, but I will make an exception for PT.)

During my session, we did some of our regular therapies: heat, ultrasound, and electrotherapy. I was a little surprised that toward the end of my hour and a half of treatment, I somehow managed to fall asleep, even though strong currents were being applied to a major contracture which had formed in the muscles along my upper back.

Yes, I was tired…but I was looking forward to the afternoon: my first afternoon of the entire week that was completely free. Finally, I could start my weekend half a day early. I had made it through another week!

But first, I would stop by the grocery store and pick up a few items, before I headed back home. Physical therapy and grocery shopping often go hand-in-hand. First, because they are located in such close proximity to one another. Second, because the timing is optimal: I find non-weekend late mornings the best time to do my shopping, as this is usually when the store is the least crowded. (I wouldn’t dare step foot in a grocery store on a Saturday!)

There I was, weaving my way throughout the aisles, with no problem at all. Two boxes of Barilla thin spaghetti. A bottle of (hot) ketchup. Some saltine crackers…regular and wheat. Six containers of fresh–and heavy–fruit juice..but as long as I got them into the shopping cart, that would be the end of my efforts. (A bagger always loads the bags into the taxi for me, and then on the other end the driver unloads them to my front step.)

And then, something happened as I turned into the next aisle. My energy levels dropped down to absolute zero. I could barely move. My first impulse, as I stood there frozen, was to ditch my shopping cart, leave the store, grab a taxi, and go home. But I knew that I didn’t have even close to the necessary strength that would be required to pull of this series of events by myself.

The more I thought about things, the more I realized that hanging on to the cart was the only thing that was keeping my upright. And as I became less aware of what was going on around me, there was one aspect of the environment that registered in my mind like never before: grocery stores rarely, if ever, offer a place to sit. And while I still can’t believe that I even considered such a thing, I started to ponder the possibility of just laying down flat, right there on the floor in the middle of the canned vegetables aisle.

But I called my partner on his cell phone, and told him what was going on. When he too suggested that I just drop everything and go straight home, I told him I couldn’t even do that. “I’ll be right there–stay where you are,” he told me. And just as quickly as the call started, it ended.

I somehow managed to get to the next aisle: refrigerated beverages. I pulled a bottle of Gatorade off the shelf, and gulped it down, all the while imagining those old-school commercials (back in the 80′s when Gatorade really was just for athletes, and had a strange taste) where pixelated squares showed a body’s electrolytes and whatever else being replenished. Nothing seemed to happen, so I started eyeing a can of Monster Energy Drink. I decided against it though, as I started to envision the nightmare scenario that could result from having so much caffeine and taurine in a body that could barely even move.

Before I knew it, I saw my dedicated partner nervously speed-walking down the aisle toward me. (And I swear, he got there so quickly, he must have flown to the store.) In a matter of minutes I was on my way back home, and the tears were freely flowing. In the past I have had many occasions where my energy levels have dipped when I’m by myself out in public, but it had never been as severe, as overwhelming, as the incident that had just taken place.

Going through such a severe episode while in the comfort of my own bed is something that I’ve only just gotten used to, after many years of “practice.” Having to do it while I was alone in a store was something that I had no experience doing. In the end, though, I made it through everything that happened, and my partner’s quick actions showed me that I was never really as alone as I might have thought.

I spent the rest of the day resting and sleeping in bed; something that I plan to continue to do through the rest of weekend.

Stay tuned…for the next adventure of Rheumatoid Arthritis Guy!

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