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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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.

After Diagnosis

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(This is a continuing series of posts on my journey with chronic pain & RSD)

Since RSD is not common and most people have not heard of it before here’s a definition:

From rsdhope.org: Complex Regional Pain Syndrome, or CRPS, formerly known as RSD or Reflex Sympathetic Dystrophy is a progressive disease of the Autonomic Nervous System, and more specifically, the Sympathetic Nervous System. The pain is characterized as constant, extremely intense, and out of proportion to the original injury. The pain is typically accompanied by swelling, skin changes, extreme sensitivity, and can often be debilitating. It usually affects one or more of the four limbs but can occur in any part of the body and in over 70% of the victims it spreads to additional areas.

What came after the diagnosis I will only touch on in brief.  I am more interested in going into detail about how I’ve been able to use my mindfulness practice to grow and heal in relationship to my disease and physical pain.  I see no real benefit to anyone in my going over at length all of the bad days and challenges I underwent those first few years after my injury.  I think it’s easy to think that sharing these moments provides some relief but I think more often than not it simply perpetuates suffering and keeps us stuck in the cycle of pessimism and complaining.

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Diagnosis

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In 2005, a few days after turning 26 years old, I had one of those seemingly cliched days that I had only heard about but not yet experienced (and honestly hoped not to since they sounded a little too dramatic for my taste).  I had a day that changed my life forever.

It was early July and I was out in the backyard with my then 5-year old stepson Jaden and his 3-year old friend Cadence.  I was Cadence’s nanny at the time but due to the fact that my car had been set on a fire in a random act of arson (among a string of others that summer) the day before I had no way to get to the family’s house for work and so he was dropped off at our house for the day.  It was a warm summer day and the boys were playing.  We were in the midst of continuing the renovation work on our house and a brand new front door was propped up against a table in the garage waiting as its first coat of fresh paint dried.  The side door to the garage was open and one of our two cats wandered in and then a large crashing noise soon proceeded, followed by the cat bolting like the wind.  Hoping the door’s windows weren’t broken I rushed into the garage with bare feet (which is never a good idea, at least in our garage).  As I was hoisting the door up and attempting to situate it more sturdily I accidentally dislodged a piece of MDF that was hanging at about eye level.  The heavy wooden board fell right onto my bare left foot.

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