The pain is blinding today. I can’t see clearly & sounds from around the room vibrate through my body, setting off flares throughout my nervous system. It changes from moment to moment. And as I get use to the burning sensation it manifests into a stabbing – pulsating pain. My nerves are jumping. Literally. My body twitches uncontrollably as I lay here and meditate. You see, meditation is one of the only things I can do to bring my pain down. Except for days like this. Days like this are torture.
My nervous system is on fire,my nerves screaming in pain. My feet, my poor feet, feel as though I’m standing in a fire with the flames lapping at my calves. I look down, expecting to see a fire at the end of the bed and for a moment, I think “how can a person feel so much at one time?”
Last week I was in the hospital for a 5 day ketamine infusion following the removal of an ingrown toenail on a CRPS limb (video blog post). After one of my Physical Therapy walks my body was engulfed in the most pain I can ever remember feeling.
I told the nurse last week as she brushed my hair from my forehead while I cried out in pain, white-knuckles holding onto the bed. “This is the worst thing that can happen to a person. I feel like I’m in a burning building”. Her eyes flashed compassion and fear and I immediately felt guilty. It’s not polite to show your real pain. I tell myself.
As a Licensed Clinical Social Worker, I know that our lives are fundamentally shaped by our beliefs. These beliefs make up our morals, nurture our relationships and motivate our success. They also formulate our behavior. Where did I learn that pain is shameful? Certainly no one in his or her right mind has told me this. No, I think, I have learned this from other people’s reaction.
From the time we are small, we are rocked and shushed and told that band-aids make our boo-boos all better. Don’t cry now, be a good girl. We are expected to be tough from the get go. Cry it out, dust yourself off, get back in the saddle, kiss it and make it all better.
We teach children about pain the same way we teach them about love.
As if it were a fairy tale.
Unfortunately Chronic Pain effects over 100 million Americans ( National Academies Press).
100 million people!That’s more people that live in New York City, the state of California, Florida and Texas COMBINED!!
In a nutshell over a third of the people in America are living in defined chronic pain, which is as any pain lasting 12 weeks or longer. (3 months!) Chronic pain is known to persist for months, years and entire lifetimes. Sometimes this is from an injury, sprain or an ongoing illness but more often there is no clear cause. No rhyme, no reason.
The other component of chronic pain is that it rarely presents as a “one symptom disorder”. I’ve never heard someone say, “My back hurts and that’s it, only my back”. Chronic pain often times sets off a series of domino effects that affect a person’s wellbeing and ultimately their quality of living. Fatigue, mood changes, reduction of mobility, decreased appetite, sleep disturbance, depression, dermatological issues and our ability to have children.
So we are far from a fairy tale. Just like in love, we know that there are no knights on white horses; we also know that a mother’s kiss and bandaids don’t heal our PAIN. However as prevalent as pain is, it appears to be taboo.
We are expected to hide our pain, mask our pain, answer the how are yous with a “good!” and finished with a smile.
Even the people we love the most are uncomfortable as we say, “I’m not okay today. I am in PAIN.” Shifting uncomfortably infront of you, they are planning their escape just as you are regretting your confession.
It’s not their fault though. We are a society that likes quick fixes. Solutions. We forget that there aren’t solutions to every problem. We forget that every illness doesn’t have a cure and sometimes people don’t get better.
The “What doesn’t kill you will make you stronger” is well…..a myth. Sometimes, what doesn’t kill us, breaks us. Sometimes it makes us weak. Sometimes it strips our identity and steals our happiness.
“God doesn’t give us more than we can handle” is sometimes a well meaning but a hurtful statement to those of us suffering. Because on days like today, the days that are torture, I am not handling anything except for one breath at a time. Those statements can make us feel ashamed that we can’t “pony up” and go on our merry way the path that warriors are expected to walk. Some days, on days like today I am afraid to show you my pain because at it’s core, it will scare you. It will make you cry. It will rattle your world. I will see the hurt and helplessness and fear in your eyes. This is why on days like today, I retreat, heading to a serene peaceful space, turn down the lights, close my eyes. I seek refuge in my tears and whisper my pleas to the universe to please, please, p l e a s e … I show my broken body compassion. I hug my nerves tightly and rock slowly, breathing deep and allow myself to fall apart because in this moment I can’t hold the million pieces that are burning me alive.
In the moments as I lay in that hospital bed sobbing, the nurse with fear and compassion in her eyes, held my hand firm in her own. That touch held more healing & support than a million words. Her action showed me she was there even if I wasn’t okay. Sometimes there are no words. On these difficult days, there are no magic pills or words that ease the pain. It’s the gentle hugs, understanding, holding our hand, cuddles and sitting in silence with our loved ones and our pets who make these days possible.
So friends, as I close, remember you don’t have to do anything special to help our pain. Most of the time there is nothing that will fix us. While, we know your advise is well meaning, We have tried all of those “remedies”and have been let down by false hope. Some days we need to say “I am not okay today” because that mask gets awfully heavy to wear when we are tired and in pain. We just need to rest and feel your presence & love so we can recharge for our next battle that our body pushes against us.
Lastly, Thank you. Thank you. Thank you to the friends, medical doctors, reiki masters, family members, nurses, my boyfriend, my therapist, online friends, co-workers, friends from afar, bosses and every animal that nuzzles my hand. Thank you for your kindness. Thank you for continuing to ask how I am. Thank you for your cards, hugs, lunches, laughter, texts and wine that you have shared with me. I am grateful for everyone who is helping me be a warrior. just know sometimes warriors cry.
“AAPM Facts and Figures on Pain.” AAPM Facts and Figures on Pain. The American Academy of Pain Medicine. Web. 1 June 16. <http://www.painmed.org/patientcenter/facts_on_pain.aspx>.