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Category Archives: Chronic Pain

Pain Awareness Month

I live accompanied by chronic pain. Lots of people do. And for many of us, you would never know it by looking at us. This is me. This is what a person living with chronic pain can look like (see pic above :)

September is Pain Awareness Month in the U.S.

A number of years ago, I was a state pain advocate with the American Pain Foundation, which has since disbanded. As part of this advocacy work, I went to a small handful of pain conferences and had the honor of speaking at a couple of them, as well. A friend of mine and I led a pain support group for a short period of time and we also put together a holistic health fair. I’ve written articles and posts about my journey with chronic pain and illness. I’ve shared my story. This is all to say: I used to be active in this arena. But that was a long time ago.

Now, it’s rare for me to talk about the chronic pain I experience, because pain is no longer the main lens through which I view the world, as it used to be years ago. The only person that really knows what I go through is my husband. And not because I talk much about it, but because he’s the one that piles me into bed after a long day.

The 2018 campaign for Pain Awareness Month is #PainWarriorsUnite. While I truly mean no disrespect, I don’t personally resonate with this theme. In honor of Pain Awareness Month and also the approach of 100 Thousand Poets for Change, #100TPC, I wrote this earlier today:

I am not a warrior
when it comes to living with chronic pain and illness
When I was in the thick of it,
it wasn’t courage that kept me moving forward
It was fear
It was necessity
It was: Well, what the heck else is there to do?

I am not interested in going to battle
I have no wish to fight
And no, this doesn’t mean I’ve given up
There IS another way
A middle ground between going to war and giving up
And this is where I choose to reside

My sense from others I’ve come into contact with over the years, is that in spreading the message of being a warrior when it comes to living with pain and/or illness, whether mild or serious, creates the paradigm that those who feel hopeless and despairing, who don’t feel brave or courageous, who aren’t upholding the “good” fight, are somehow doing it wrong. I’m not so sure that sentiments involving fighting, going to battle or war, or being a champion or warrior are so helpful for our collective landscape and morale.

But I suppose that the idea that we can still be proactive and engaged without the necessity of fighting might be too much for many people to absorb and understand. After all, we’re a society built on duality and dualistic thinking. Well, we figure, if we’re not fighting against something, doesn’t that mean we’re being passive and ineffectual? This is a very common view when it comes to all sorts of matters, whether it’s in relation to: pain, illness, politics, social injustice, environmental advocacy, etc.

What I’m getting at is: words matter.

I don’t identify with being a pain warrior. I am not fighting or at battle with my nerve disease (CRPS). I am a person living with chronic pain. And one of the best things I do in regards to my condition – which greatly aides in reducing my pain response – is to continually cultivate a friendship with my illness and my body. For me, I associate fighting and being at war as the state I was in during the first 1-2 years after my diagnosis, when I was in the thick of the fray of pain. I fought against my body, my illness, my state of limitation, my new realty that I hated. I was at war against what was unfolding to be my new way of life.

I’m done fighting. I’m done battling. I’ve moved onto befriending – and my life and my relationship with my illness and pain, greatly benefit every day from that transformation.

Please understand, befriending doesn’t mean to give up. Befriending means to accept, embrace, and transform. When I was in fight mode, I was trapped and full of fear and anger. Befriending mode, however, is very liberating. And for me, this has made all the difference in how I respond to physical pain when it arises.

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Pain is often invisible to the naked eye – whether it’s physical, mental, emotional, or spiritual. Please don’t ever think you’ve got someone all figured out at first glance – or even second, third, or one millionth glance. This is me. This is what a person living with chronic pain can look like:

 

 

 

 

 

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Posted by on September 24, 2018 in Chronic Pain

 

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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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Most People Wouldn’t Know

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Most People Wouldn’t Know

Most people wouldn’t know,
until I broke out my cane,
that I live with chronic pain in my legs and feet.

Most people wouldn’t know
how I have to delicately ration my time
between activity and rest,
if I am to function in all the ways they see me.

Most people wouldn’t know
that I’m unable to wiggle my toes,
due to atrophy,
or that some days I am unable to get out of bed.

My situation is no different than anyone else’s.
For we can never know just what is going on for someone.
Loss, grief, loneliness, anxiety, shame, anger, mental illness,
all are invisible to the naked eye –
except, when they’re not.

Most people wouldn’t know,
unless I told them,
that I don’t want them to be sorry for me,
because I’m not sorry for myself,
not anymore.

Most people wouldn’t know
all of the invaluable lessons
my pain has taught me.
Forcing me, at first kicking and screaming,
to learn how to take good care of myself,
so that I would in turn be able to take
good care of others.

 
 

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On Resting

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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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The Art of Pain Management

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A couple of months ago I was talking to a sangha friend of mine about the nature of physical pain.  Knowing that I’ve been focusing diligently on the cultivation of joy over the last few years and that I’ve experienced a great deal of physical pain in relation to my chronic illnesses he asked me specifically what I did to deal with pain and how to cultivate joy in the midst of it.  As I see this as a common struggle (knowing how to deal with ongoing physical pain, limitation, and illness) I thought I’d take to writing about it, as that often helps me to better understand things for myself as well.

It’s important to note that I spent years doing the “wrong” things when it came to dealing with physical pain.  Doing the wrong things was what helped me to know and understand what the right things to do were.  By wrong I mean I caused more harm to myself and those around me.  By wrong I mean I wasn’t taking good care of myself and was embittered with anger, sadness, loss, guilt, and hopelessness to the point of becoming debilitated and unpleasant to be around.

So what do I do now to embrace the difficult nature of physical pain and practice joy?  Let’s see..

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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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Pain as Teacher

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As I’ve mentioned a small handful of times I live with chronic pain.  I have RSD, a nerve disease, and endometriosis, a condition which causes growths outside of the uterus where they don’t belong.  And most recently I’ve been dealing with increasing shoulder pain and weakness due to a tear and cyst in my labrum, the cartilage around my shoulder socket, for which I’m slated to have surgery to repair next week.  I was recently talking with a sangha friend who, after asking me some questions about my health, said: “I wish I knew why bad things happen to good people.”  I then replied: “Actually, I am extremely grateful for the pain I’ve gone through and continue to have, it has taught me so much.”  It may sound like some kind of hoaky Hallmark card or cheesy after-school-special but I truly am deeply grateful for the experiences I’ve had and continue to have with chronic pain.  I don’t see my situation as a bad thing at all (although I used to when my journey with RSD first began).  Pain has been my greatest and most valuable teacher – there are some things I just don’t think I would’ve learned otherwise.

So I got to thinking about the lessons I’ve learned through having pain – so I thought I’d jot some of them down, in no particular order:

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Posted by on June 27, 2015 in Chronic Pain

 

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