Living with any chronic, often lifelong a condition, we are all faced with the challenge to attempt to figure out how best to live with this new and often novel set of life challenges. Living with chronic conditions, including pain, the initial sensation is that you are alone. As time goes by and you allow yourself to open to listening to others, you realize so many are trying to cope similar life altering situations. Taking the time to listen to others, allows one to place their situation in perspective and realize that you are indeed not alone. I realized that there was a larger picture of which we are part of. There was a degree of comfort in realizing one is not alone. The results were shocking. I gained more compassion towards others battles, gratefulness for not dealing with many of their trials and better acceptance of what I have been given to face for the rest of my life.
As I thought about this topic, I came across an old poem I wrote when first diagnosed with my two incurable conditions and as I was struggling to learn how to figure out how to go on with any quality of life:
Coping: Living a Complicated Life
Written by Ellen Lenox Smith
The only hope I get is self-declared
The only relief I get is to put the mind in other directions away from the pain
The only stabilization I get is surgically produced
The only way to turn away from total panic and disbelief is to keep moving
forward and not looking back for long
How do I do this?
I am grateful for the good around me
I am lucky with my marriage filled with mutual respect and compassion
I am lucky to have my sons, wives and grandchildren in my life
I am lucky to be able to still value the good in people, the beauty of nature,
the excitement of what unfolds in life
I may be drowning at times with these conditions
But I do consider myself lucky to be moving forward with life and still being
able to feel and celebrate all around me.
I know they are just words and thoughts, but I have found that the theme has helped me to learn to not feel alone and try to find things that I could still be and do.
Recently, the words below were read out loud at an event. This so grabbed me to remember, we are not alone with trials and in life. Take a moment and read what John Pavlovitz expressed so poignantly.
Everyone Around You is Grieving
FEBRUARY 21, 2019 / JOHN PAVLOVITZ
The day my father died, I was at the grocery store buying bananas. I remember thinking to myself, “This is insane. Your dad just died. Why the hell are you buying bananas?” But we needed bananas. We’d be waking up for breakfast tomorrow morning, and there wouldn’t be any bananas— so there I was. And lots of other stuff still needed doing too, so over the coming days I would navigate parking lots, wait in restaurant lines, and sit on park benches; pushing back tears, fighting to stay upright, and in general always being seconds from a total, blubbering, room-clearing freak out. I wanted to wear a sign that said I JUST LOST MY DAD. PLEASE GO EASY. Unless anyone passing by looked deeply into my bloodshot eyes or noticed the occasional break in my voice and thought enough to ask, it’s not like they’d have known what’s happening inside me or around me. They wouldn’t have had any idea of the gaping sinkhole that had just opened and swallowed the normal life of the guy next to them in the produce section. And while I didn’t want to physically wear my actual circumstances on my chest, it probably would have caused people around me to give me space or speak softer or move more carefully, —and it might have made the impossible, almost bearable.
Everyone around you; the people you share the grocery store line with, pass in traffic, sit next to at work, encounter on social media, and see across the kitchen table—are all experiencing the collateral damage of living. They are all grieving someone, missing someone, worried about someone. Their marriages are crumbling, or their mortgage payment is late or they’re waiting on their child’s test results, or they’re getting bananas five years after a death and still pushing back tears because the loss feels as real as it did that first day… Maybe they aren’t mourning the sudden, tragic passing of a parent, but wounded, exhausted, pain-ravaged people are everywhere, everyday stumbling all around us—and yet most of the time we’re oblivious to them… Everyone is grieving and worried and fearful, and yet none of them wear the signs, none of them have labels, and none of them come with written warnings reading, I’M STRUGGLING. GO EASY. And since they don’t, it’s up to you and me to look more closely and more deeply at everyone around us: at work or at the gas station or in the produce section, and to never assume they aren’t all just hanging by a thread. Because most people are hanging by a thread—and our simple kindness can be that thread. We need to remind ourselves just how hard the hidden stories around us might be, and to approach each person as a delicate, breakable, invaluable treasure—and to handle them with care. As you make your way through the world today, people won’t be wearing signs to announce their mourning or to alert you to the attrition or to broadcast how terrified they are—but if you look with the right eyes, you’ll see the signs. There are grieving people all around you.
These words above shocked me into keeping in mind that we all are facing something. For some of us, it is chronic pain and medical issues. Others cope with and natural or even premature losses of loved ones, failed marriages, burned or flooded homes, homelessness, inability to conceive, etc. The suffering list is seemingly endless and although we are not always aware of its constant presence, it is always around us. We need to find a way to take on what was given to us for our trial and learn to still find positive, happiness and meaning in life despite the losses. We all know this is not an easy assignment but what I always put into my head is that my children are always observing how I handle life and I want them to think back on me as a fighter, a happy person and one who cares about others despite any obstacles I was challenged to overcome. That is a lesson my Dad taught me as he fought for seventeen months with bone cancer, while keeping his sense of humor, compassion and passion for life. May we all somehow find similar strength to take life on and not allow unforeseen circumstances such as chronic medical conditions to control our destiny and diminish our lives.
May life be kind to you,
Ellen Lenox smith
Author of: It Hurts Like Hell! I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!
The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.
Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/