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Tag Archives: illness

This is what I look like sometimes

I just took this pic of myself about 30-minutes ago. It’s hard for me to imagine how this pic might look to you, whether you know me personally or not – maybe nothing looks amiss at all. But, to me, this pic is a visual message of how my nerve disease, CRPS, shows up for me sometimes, like today. I can see my illness, exhaustion, and poor state of health today in my face – largely in my eyes. Our eyes are the window to the soul, as the saying goes.

I just watched a 2016 documentary called Gleason, which tells the story about former NFL player Steve Gleason’s diagnosis, progression, and life with ALS. It is an extraordinarily well-done film and I would highly recommend it. After watching it, I was inspired to take this pic of myself and post it here, as a way of highlighting that this is what I look like sometimes. Some days I am bed ridden. Some days I’d rather have the energy and ability to be outside enjoying the sunshine, like today, but I don’t. Some days my pain levels are higher than my mental capacity to physically rally myself – though it is rare for me, anymore, to experience a day when my pain levels are higher than my mental capacity to spiritually and emotionally rally myself.

Physically my body may be weak and sore today. But in learning the art of resting (yes, it is an art for sure), I am able to do so much awesome and amazing stuff in my life, during the days that I am afforded more energy and better health.

The documentary showcased for me the possible benefits and power of sharing our story, which is something I still struggle with, personally. As a writer and a mindfulness practitioner, I am still uncertain as to whether documenting and getting involved in advocacy work is the direction that speaks to me, in regards to being someone who lives with chronic pain and illness. What is clear to me, is the importance of showing and sharing about all the sides of ourselves. To be authentically who we are, in our own skin. So on that note, this pic is what I look like sometimes.

Things that are helpful for me to keep in mind:

  • No one totally is as they appear.
  • We’re all human – we all have our challenges and heartaches and strife.
  • We all judge books by their cover – and we’re all always wrong about our assessment.
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A Fruit of the Practice

Two nights ago, I was reminded about one of the fruits that has unfolded as a result of my practice of cultivating mindfulness and joy: the ability and capacity to remain mentally at ease, upright, and stable in the midst of challenging circumstances.

Despite feeling a bit overloaded with organizational and schedule related tasks of late, I agreed to volunteer for an evening school-related function at a local art gallery, as part of my stepson’s involvement in the literary magazine program at his high school. On Monday night his literary mag teacher sent out a long and heartfelt email, sharing about her recent health struggles that will soon send her to the Mayo clinic in Minnesota, along with her first and sole ask for parent support to help pull off their largest fundraiser of the year, which would be happening in 3 nights time. After learning about her health struggles, and other personal challenges she shared about in the email, and considering the late notice that would likely render many parents unable to help out, I decided to pitch in to help a little more than I usually would.

I volunteered to make and bring both an appetizer and dessert item, enough to feed 20 people (as requested), and I also offered to help set up at the event beforehand. This resulted in prepping and baking for 5-hours, until 9:30 at night, after working a full day at my nanny job on Wednesday, followed by going directly to the event for set up the next day, after another full day of work. Since we were rather short-handed, I stepped in to help manage and maintain the food tables throughout the event, as well, and stayed until the end to help with clean up. So, for a second day in a row, I immediately followed my 7-hour work day with another 5-hour set of active tasks. This would be a lot for many people, regardless of health status. However, with the added element of living with chronic pain, due to a nerve condition, 12-hour days for me are most often out of the question – my schedule of 7-hour work days twice a week are enough to put me in bed as soon as I get home at 4:00pm. I do have the capability, however, to pull it off when I need to, once in a while, knowing that my pain levels will be elevated for a few days afterwards in response and I’ll need to adjust my activities and schedule accordingly, in order to rest and recuperate my energy.

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Self-Care

7pointplan

To read in more detail about Ethan’s 7-Point Plan: http://www.ethannichtern.com/7-point-practice-plan-for-engaged-mindfulness-in-2017/

Yesterday was a long day of LOTS of sitting on a meditation cushion at our local mindfulness center, with very little active movement, which my physical body is not a huge fan of. And it was also lovely, too, as not only was I able to partake in an OI Day of Mindfulness (OI: Order of Interbeing), but it meant I was able to see our out of town sangha friends, of whom I only gather with 3-4 times a year.

Our Day of Mindfulness included: sitting meditation, indoor walking meditation, reciting the 14 Mindfulness Trainings, listening to short talks from three of our Montana and Wyoming area OI members, silent lunch, a dharma/personal check-in round, and closing remarks from our local Dharma teacher Rowan. It went from 9:30am-5:00pm. My husband and I left at 5:00pm, in order to return home to our son, while others stayed to have dinner together at the center. My nerve condition, and associating chronic pain, had been so aggravated by the hours spent mostly sitting that I darted out to our car quite rapidly after the final sound of the bell – whoosh, I was gone! What I’ve been appreciating reflecting on, since getting home last night, is how strong my practice of self-care is – which took me years of honing in, I might add, and is a continual practice. Now, when my pain levels rise and my mental energy plummets in unison, I know what I need to do and I do it.

A big part of my self-care routine is in understanding how physical pain, just like everything else, is of the nature to change. When my pain level rises, I practice to remember that by prioritizing rest, using a few simple aids (such as using a heating blanket and soaking my legs in a hot bath), and being attentive to my body mechanics, my pain will subside to a large degree, after a certain length of time. I no longer fight against the pain or my body, wishing they were other then they are. I’ve learned a different way of engaging with myself when pain arises, and it makes such an immense difference in my experience.

As Thay says: “The Buddha said that you shouldn’t amplify your pain by exaggerating the situation. He used the image of someone who has just been hit by an arrow. A few minutes later, a second arrow strikes him in exactly the same spot. When the second arrow hits, the pain is not just doubled; it is many times more painful and intense.

So when you experience pain, whether is physical or mental, you have to recognize  it just as it is and not exaggerate it. You can say to yourself, “Breathing in, I know this is only a minor physical pain. I can very well make friends and peace with it. I can still smile to it.”

If you recognize the pain as it is and don’t exaggerate it, then you can make peace with it, and you won’t suffer as much. But if you get angry and revolt against it, if you worry too much and imagine that you’re going to die very quickly, then the pain will be multiplied one hundred times. That is the second arrow, the extra suffering that comes from exaggeration. You should not allow it to arise. This is very important. It was recommended by the Buddha: Don’t exaggerate and amplify the pain.”

– From Shambhala Sun magazine (now known as Lion’s Roar), January 2012

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On Resting

Civp1xiUoAAl9pP.jpg_large       (from Buddha Doodles by Molly Hahn)

This morning, on my writer’s facebook page I posted this:

Sometimes, I have to remind myself
about the extent of my human nature.
My vast tendency to tire,
to grow weary,
to sink into foggy states of clarity.

Sometimes, I have to remind myself
about the extent of my human potential.
My ability to begin anew,
to grow steady and strong,
to thrive into brilliant states of awakening.
To rest and revive once again.

 

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Mindfulness as Medicine

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A few days ago I finished the book I had been reading (Find the Good, Unexpected Life Lessons from a Small-Town Obituary Writer by Heather Lende).  Not knowing which book to start next, and having two of special interest that I recently purchased for our local mindfulness center library, I decided to do something I don’t usually do and started both books at the same time.  One of which is Sister Dang Nghiem’s book entitled Mindfulness as Medicine, the other is Silence by Thich Nhat Hanh, both of which have been published this year.

From Mindfulness as Medicine:

“As spiritual practitioners, we train our mind to anchor itself in our breath and body in our daily lives. Whenever a situation arises, however pleasant or unpleasant it is, we already have the capacity and skills to dwell in this awareness, which enables us to go through the process as peacefully and calmly as possible. This is the foundation for a healthy future. Thus, we see that pain is inevitable, but suffering is truly optional.”

http://www.parallax.org/mindfulness-as-medicine/

 

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Chronic Pain, Here We Go

change

I’m nearing my 200th post in my almost two years of blogging and in that time period I’ve made mention of my chronic pain condition just a few times and only in passing.  Much like my insight about how I, not long ago, wasn’t able to read world news because I simply wasn’t practiced enough in being able to balance myself to not get overwhelmed and cynical by its content, I too realized that I have not been quite ready to share about my ongoing journey in living with chronic pain.  But I now feel as though I can begin to embark on this big topic.

I haven’t wanted to approach my illness for a few reasons but I see that mostly it had to do with these last two years of my diligent focusing on cultivating joy.  In order for me to start unfolding and walking through my health challenges and have the ability to share my story with others I needed to learn and practice joy.  Otherwise my words would’ve been clouded over with confusion and mis-understanding – I wouldn’t have been able to convey the whole picture.  After a long string of quiet moments amid the cycle of transformation is when I often emerge with words to express my journey.  I mean, one needs to have actually been to Peru in order to write a great telling of it hadn’t they?  It’s sort of like that.

Sometimes we move in a direction simply because people around us carry us there.  My wanting to share about living with chronic pain as a mindfulness practitioner is an example of this.  When I spent a month on retreat at Deer Park Monastery in January there was a woman there who remembered me from the 21-day retreat in Plum Village in 2012.  We had crossed paths only briefly in Plum Village but she remembered me quite well apparently.  Throughout the month at Deer Park she kept remarking about how different I looked from when she had seen me in 2012 and how wonderful it was to see such a transformation in my pain condition and how I was moving.  She said that I looked totally different.  She was amazed and curious about how, in such a relatively short amount of time, my condition had changed.  One day I helped her in the kitchen clean up after making peanut brittle and she told me about how she struggles with arthritis and how being on retreat at the monastery was the only time she wasn’t in  pain.  She wanted to know how I dealt with my chronic pain because in her eyes, although she didn’t know me, she saw that whatever I was doing was working.

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Posted by on May 18, 2014 in Chronic Pain

 

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