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.
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:
(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.
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.
Day 8 – It’s almost 10:00am here in the mountains. The sky is calm and clear and a budding spring sun is growing brighter as the day unfolds. It’s Sunday. My husband is still sleeping and my son is in his room listening to a book on tape (yes, we still have tapes and a tape player :) and working on a project. I’m sitting in the quiet of the living room looking out our north facing picture window to the mountain ash berry tree in the front yard, bare bones stark against the blue expanse of sky painted above. I just got done sitting and as I look out onto the day I shirk back.
My husband struggles with depression, which means our whole household struggles with depression. When someone in our close family has a difficulty it is not an isolated event that pertains only to their well being but to the well being of the whole family. While the winter months are not the cause of his depression it certainly gets much worse through the darker, colder time of year. It has only been in the last couple of years that I have developed more understanding about what he’s going through and how it impacts everything he does. Depression lies in his ancestry and is a deep root. Thay (Thich Nhat Hanh) often talks about our inherited seeds that are passed down through many generations and how we need to be aware of and take good of them in order to transform them.
It is easy to throw words around without thinking much about their meaning or impact. Depression is one of those words that has been watered down and its meaning diluted. “Oh, I’ve had such a crappy day I’m so depressed,” or, “I can’t believe the store is out of chocolate ice cream, that is so depressing.” So in a way it makes sense that when a person is actually struggling with depression it can be challenging to identify it and understand just what that means. However in my deepening understanding I will say that I feel more powerless. I know that while I can support his path I cannot do the work for him that is necessary to strengthen his mental health and well being. And with it affecting the household as much as it does it makes it extremely difficult to not want more control over the situation.
At 33 years old I struggle with chronic pain from a nerve disease called CRPS (or RSD) that resulted from an injury I had in 2005. I’m on disability and work hard everyday to manage my physical pain. It has been a long road and still continues. With the strength of my mindfulness practice and my determination to not let my pain define me as a person I am committed to taking good care of myself. I’m the only one that can truly take care of myself. Others can of course help support my journey and my community of friends and family are vital to my overall heath and happiness but ultimately if I am not invested in my own well being and putting forth the responsibility, effort and diligence to practice self-care then transformation is not possible.
Some days his depression is like carrying around a bag of rocks everywhere I go. Today is one of those days.