Victim or Survivor?

Victim or Survivor?

Did you ever hear words from a song you had enjoyed listening to many times before, but suddenly a new meaning or perspective on a specific line catches your attention for the first time? I was recently listening to a friend sing Anthem, by Leonard Cohen and was taken aback by the words, “There is a crack in everything – That is how the light gets through.” I sat there feeling overwhelmed by what was being sung, along with being shocked that I realized I had, in the past, enjoyed the tune rather than opening myself up to the message the words were attempting to convey. But that line really caught my attention this time and I am grateful that I finally really heard it, for I felt it spoke to me on a personal level.

Living with the daily struggle brought on by chronic medical issues that include pain and long recovery periods following many surgeries which, at times, creates a great deal of social isolation, I was taken by the thought that the light gets through cracks which are all around us. So often, you feel you are isolated and alone in a sealed box as a victim of your condition, with no light or hope penetrating your prison like surroundings. However, after serious contemplation, this makes me think that I have had that wrong. When I think about it, I see cracks of light in closets, through walls, through branches of trees and leaves and most places I can mention. The symbolism for me is that light, representing hope, life, and survival are really around us when we feel it isn’t. We have to open our eyes and allow what is really there to penetrate our lives and allow us to believe we are really here and part of life, no matter how difficult our path of life has become.

As I think about these words, I also dwell on whether I am going to become a victim of my circumstances or one who is defined as a survivor, attempting to overcome obstacles in my path. We all have different struggles in life and thus we must make a conscious decision as to how we want to handle our unique circumstances and how we want to be remembered. When things go terribly wrong and not planned, there is a period of shock, disbelief and in time much mourning for what is never going to be again. And then……. we get to choose – victim or survivor.

As you, too, have to decide how to take life on as this new you, perhaps living with pain, heartbreak and loneliness, you have to try to determine what is best for you. So many afflicted with chronic problems often find themselves mired down with anger. This, the emotional component, inherent in dealing with chronic, often lifelong medical conditions, may prove to be the most difficult obstacle to overcome. In attempting to adjust to living with a chronic medical condition, anger is certainly justified but it is critical not to allow these emotions to define you and control your life. I attempt to focus my mind on how I am perceived by my children and the manner in which they are observing how I address the many obstacles I must now confront, just as I observed and then utilized the courageous manner in which Dad took on this last year’s suffering with numerous forms of cancer. Due to his determination to engage positively in life with pain and losses, yet with a smile around others and always displaying compassion towards all of those around him. I felt that this was the way I hoped to try to take on my trials. My Mom chose the opposite path. She chose to feel being the victim, expecting us to make things better, feeling bitter and not acting like a happy person. Observing them both, it became a no brainer as to who I would attempt to embrace as my role model. But choosing being the role of survivor with serious chronic medical issues, is a journey which is sure to bring on incredible stress. However, the results of my life choosing to find happiness despite what I face with two incurable conditions has been worth the daily efforts. Despite all the losses through the years, two incurable diagnosis, and now twenty-four surgeries, I do view life in a positive light. I allow those cracks of light to shine through as much as I can. There are days I want to be done with pain and hardship, but somehow attempting to embrace the good in my life allows me to often transcend the frequent days which would otherwise prove emotionally overwhelming.

I hope that you, too, will try to take your challenges and turn from just feeling the victim to considering being the survivor and feeling the good that is still around you. I find comfort in reminding myself that this is the one life I get to live. I want to feel that there is a reason I am still here and hope that there will be some positive impact towards improving the life experience of others facing similar circumstances. I know there will be days you wonder how this could be possible, but it is worth digging deep to find meaning and hope to be that survivor.

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/

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Authored by: Ellen Lenox Smith

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/

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Sonya Thompson

I am a chronic pain patient and i have a song that should b played loudly outside congress by CP advocates and doctors aswell and thats INVISIBLE by PAT BENATAR. Also need 2 play 2 doctors because lyrics says it all.

Dan

I’ll try to be brief. 20 years of wrong diagnosis and 20 surgeries. A 25 year marriage gone. I see my grown Children not as much as I would like. This 90 mme is ridiculous since after such a long period tolerance has had a huge affect. I’m now more than half where I was a year and a half ago med wise. Life sucks. I’ve joined many groups and hope something will happen to help others and myself !! My condition is a combination of doctors not listening and politicians not giving a rats …. And things were going so well.

Cynthia

That is beautiful! In fact the book I am writing is called “Slipping through the Cracks” There is a real difference between affects and effects!! I love Leonard Cohen. Poetry in motion!!

Thomas Kidd

I have been a fighter against chronic pain about all of my soon to be 67 years. I trust by faith in my Redeemer’s Saving grace. But I am logically minded and don’t sign on to the things of this world. I have known about light filtering through the cracks in life. I grew up in what most people call poverty. We had the necessities needed and when we didn’t I observed my mom and dad on their knees in prayer. The mind is a powerful thing but chronic pain many times shuts down the mind and body. Being mistreated as we have been lately has caused many people to give up, committing suicide. While many continue to suffer. Being labeled as criminals is dehumanizing to say the least. Many of these bandaid fixes are an affront to me and millions of people. If people in horrible pain go to the streets for pain relief I cannot condemn them. Those who are supposed to help have run cowaring in fear of loosing their license and their money. This only causes more suffering. They mismanage our pain withholding medicine which we desperately need to function, and make lame excuses. I would have no problem growing Poppies and making Morphine for personal use. Yet the government buzzards sit on their dead trees watching so more money can be taken from innocent hurting people. If some poor suffering soul breaks into a pharmacy to obtain pain medicine these bastards caused it. As you can see I am feed after 30+ years of suffering pain and being humiliated belitted and cursed at because of no fault of my own. Judgment in the here and now is to soon strike these uncaring incompassionant people, in putting many of them in the same boat as those they have chosen to ignore and mistreat. What I say is most unpopular. I continue trusting and obeying my Redeemer. I encourage all to do this as well. Good day. Thomas Kidd. Thank you!

Deb Whitmore

Great analogy and I have chosen to be a survivor instead of a victim too so that I can be a testimony to others who suffer constant chronic pain that there is light thru all the cracks in our lives

Beatiful article Ellen. Thank you. Up until the doctors office put assistants in charge of simply elimimating my pain meds I could say I was surviving. They dont care whst you have or how much you hurt. But in a few short months I know I will not be able to go down to 90 mme. Plain and simple I will then clearly be a victim and a causaulty. I know how low I can go and 90 is too low. I wish I did not feel like I am not strong enough or being a baby. Even here at NPR I am a REJECT because I have a degerative, genetic disorder called CMT that I cannot endure the pain involved without medicine. I did not give up I am being tortured and killed by BIG BROTHER. That now makes me a victim then so be it.

Gary Raymond

We are victims of the Centers for Disease Control and Prevention.

Ellen, you are an inspiration to all of us. Your post always bring hope. I am a survivor, I will continue the good and bad fight that a lot of people are struggling with. Thank you for the light you manage to show so many of us. God bless you and all the people living in pain 24/7

lauren Seavertson

Well written, but i feel myself getting angry with some doctors, and yes, even with my situation. I know being a survivor is the way to go… But i am alone, no family, or close friends for support. I try to be a giving person, inquire about others, be positive. But i am now poor, can barely pay my expensive rent, at a retirement community. Don’t know where i can go, as there is no housing for disabled seniors, with out 5 or more yrs, waiting time. The hardest part for me is the isolation. Men won’t go out with me, because i use a walker and can’t hike, bike etc. The severe isolation gets me depressed. I feel that my life has “passed me by” for many years. Many things i would like to do, but finances, disability, circumstances, make it close to impossible. I am trying to get out in the world, but lacking money, affordable transportation, or not being able to sit up, or walk much, makes it very challenging. Online support groups, don’t cut it, when U have no one present in your life. My insurance won’t pay for a pain, or disability specialist for counseling. So i often get counselors who cannot relate to the loss and isolation. I have lost pretty much everything meaningful in my life and struggling to get over the anger, loss issues. I know it’s hard for most to relate. So i always try to be positive when i
m with others. But i am crying inside and wonder why no one understands, or can relate?

James McCay

Dear Ellen, you are becoming my new hero!
Even though I just found National Pain Report a month ago (because my Pain Management doctor expects me to do his work for him FOR FREE!), and only read a few of your posts; you write so eloquently that mirrors my feelings. I can count my life’s heroes on one hand; as I know my standards are high.

Reading your words is like I used to be able to write- before debilitating, life altering widespread pain and fatigue took over much of my life by 2009. I have three Neuromuscular diseases (two are autoimmune diseases too), plus Hyperthymusism which blocks all meds from working right or at all. I started getting sick at age 34 in 2001, BUT DON’T FEEL BAD FOR ME!
All my life I’ve had great instincts that many called psychic. BUT I LIVED EVERY DAY AS IF IT WERE MY LAST FROM AGE 24-34 (regardless of how little money I had)! I did this because my instincts were screaming that I did not have much time left. Specifically, I had no clue what that meant.

I loved Marine Biology and Ichthyology (freshwater fishes) since age 10 in 1977! I was born and raised in NYC, but moved to FL the first chance I had in early 1990 (I lived in FL 9-years total). I spent all free time in the ocean. I snorkeled with a small pod of bottlenose dolphins in Naples, FL (just to the right of Naples Pier) over a dozen times. They’d be nowhere in sight, but as soon as I swam to the end of the 1000-foot fishing pier (sometimes with a friend, most times by myself) and made clicks and whistles with my hands cupped over the water, all 7-8 dolphins appeared as if out of nowhere all swimming within a foot of me mimicking my clicks and whistles! IT WAS MAGICAL… I never went to any mammals, they came to me!
I also swam with BIG barracudas often off the FL east coast, a family of manatees once, and every breed of fish I could think of on reefs. Those memories alone will keep me going forever.

We’re are war now, but as sick as I am; I’m FIGHTING FOR US ALL!

Nancy Wilson

Beautiful!

Terri James

Several days ago I thought seriously about not putting my two cents out here again. Although, I can’t let this one go. This particular comment only involves myself and one man that I can count on 24/7 365. I am a survivor! I have been since the day I was born! I’m praying to and counting on Jesus Christ that after all this time, I do not become a victim. I shall continue to pray with faith that He continue to help ALL of us and give us the miracles so desperately needed.

Geoffrey Nielson

I recently attended a pre – Spring Equinox “Sweat Lodge”. Arriving early and welcomed to help place wood (my small bundles) for the fire, place blankets and skins over the strong “willow wood” frame and greet others at their varying arrival times.
Fast forwarding to the 12 prepared candidates sitting down around the fire pit and 4 sessions of “Grandfather rocks” and accompanying prayers, songs and drumming.
Inside the “Sweat Lodge” it was very dark save for the glowing rocks and the opening of the skin door flaps ushering in Moonlight and more glowing rocks. And then closed flaps for another prayer, song and drumming session.
As Helen wrote of inspiring cracks of light, the 12 of us candidates could see and feel the inspiring light only when the skin door flap was open.
The “Sweat Lodge” ended with Ceremony around the great fire.
I was assured by close community that we are chosen to be survivors.
We were not destroyed by our disabilities but renewed. And take upon ourselves the Spirit to guide us for many blessings and many days.
My drumming beats for all survivors and the many survivors yet to come.
Willingly giving the drum, song and prayers forward for all of us “Survivors” no matter the statistics and circumstances of calamities and choices.

Linda

Excellent description of living like this most of my life.

Alex

So very well said. I was diagnosed with CRPS about 10 years ago – before that they just called it RSD. I chose the “Survivor” path because I didn’t want my then 3 year old son to see his Dad as a victim. I got hurt at work, no one hurt me, Accidents do happen even when you take every safety precaution. We cannot each be responsible for other people’s actions or behaviors, and it is in those situations where “accidents” do happen. Am I a victim? No! Did I survive an injury? Yes! The life I have is the life I make. I truly believe that so just in that sense alone…how could I be a victim?