Pain and Suffering

By: Loolwa Khazzoom, Founder, Dancing with Pain

February 3rd, 2008 • Mind-Body MedicinePrint Print

Everything happens for a reason — usually a stupid one. Here are my pontifications on pain and suffering, in the scheme of fate, luck, and other questionable forces of the universe.

When I was 27, a drunk guy at a nightclub yanked me in one direction, while I was turning another. Out went my back.

Three months later, a doped-up driver came into my lane for a game of hit & run, head-on collision — which, thanks to the negligence of a series of doctors, left me with degenerated discs up and down my spine, as well as the onset of arthritis.

A couple of months after that, the low back spasm that left me paralyzed for a good three minutes catapulted me past my terror of needles, into the throes of acupuncture — providing two weeks of pain-free bliss, until I was rear-ended while stopping for a pedestrian at a crosswalk.

Fast forward through…

  • the massage therapist who injured my ankle (fashionable shoes? forget it!)
  • the chiropractor who tore my rotator cuff
  • the MRI machine that electrocuted my back (so much bed, so little booty)
  • the artist who squashed my right wrist as I interviewed her for my first-ever New York Times article (don’t ask)
  • the 101 other things I’m sparing telling you about

and I found myself not only being tossed into a bubbling cauldron every time I’d clawed my way up the side of a cliff, but also fielding unsolicited interpretations of what it all meant:

From my body sending messages to slow (way, way) down to G-d mysteriously healing me from childhood abuse, and from bad luck to bad karma, doctors, lawyers, friends, and random strangers all voiced an opinion about what was happening to me and why.

Most people, I came to realize, need to find a reason for pain and suffering. It helps them feel safe — secure in the assumption that there is some kind of benevolent justice in the world.

If they do not blame a victim of a trauma or extol the virtues of a horrific experience, they may end up feeling terrified by the randomness and chaos of the world. They may even begin to wonder if they’re next on the list.

And here’s the thing: They might be. We all might be. Earthquakes, fire, disease, war, poverty, muggings, suicide bombings, starvation… Anything can happen to anyone at anytime. So why are people so freaked out — i.e., personally offended (“Why me?”) – when it does?

Moreover, who is to decide the significance of what hits us and how many times? Nobody knows why there is suffering: not rabbis, monks, imams, or priests, not your mother, not my mother, not the drunk on the corner. All we have are ideas, projections, beliefs, and assumptions.

If we push those on other people — rather than listening to their pain and suffering and asking how they need us to be supportive — we unwittingly can add yet another layer of trauma, namely that of emotional and psychological distress.

Besides, how can we possibly evaluate a person’s life and relationship to the universe, based on knowledge of one or a handful of events?

Take the times that I shared the story of some physical injuries I’d endured, and the other person responded not with compassion, but with evaluation — declaring that, among other things, I had bad luck.

Let’s put to the side for a moment the disturbing frequency with which people choose judgment over compassion. I want to focus on this luck thing:

  1. I was in Manhattan, doing business in the twin Towers a couple of days in a row, just two days before they were blown up. The morning of the attack, I was also scheduled to be on an American Airlines flight — taking the exact route as one of the planes that was hijacked, but a few hours after the incident.
  2. In a world full of poverty, I grew up in a middle-class neighborhood and had an elite education, without having to pay a dime for it.
  3. One afternoon, I was heading towards the garage of my apartment building, when a favorite song came on the radio. I stayed and danced to it. When I finally arrived, a woman in the garage informed me a man had just robbed her there, at gunpoint.

So am I lucky or unlucky? And those are just a few examples from my life.

We live in a world full of contradictions — elation and despair, strength and weakness, tenderness and violence, chaos and order. Chances are that each of us will encounter some combination of all of these things.

We are the ones who choose the focus and create the significance of that which we and others encounter. Rather than using this power to determine everyone’s pecking order in the scheme of things, how about we use it to help people make the most of what’s out there?

As for my own life, after many years of suffering through one injury after another, and after struggling with questions about why those injuries were happening, I realized that the injuries were not in fact the storyline.

The storyline was about what I was doing with those injuries. The storyline was about what I was doing with people’s responses to those injuries.

The storyline was about the fact that one tiny little match was lighting a flame against the otherwise engulfing darkness.



Comments

Anasuya February 3rd, 2008

Hi Loolwa,

Thank you for writing about this important topic. I appreciate you giving some push-back to the idea that we create our own reality. This concept has it’s uses, but sometimes it can be shaming. When a terrible thing happens and the question arises, ‘What did I do to bring this on myself? it just makes everything worse. Self-recrimination on top of trauma.

These are the times when believing in the randomness or the unexplainable mystery of the universe would be better. Skip the shame and focus on the healing. Who knows why the bad thing happened?

It is hard for people to know what to do/say when they are with someone who has experienced a trauma, an injury, a death of a loved one, etc. I realize that just as it takes a lot of energy to process and heal from a trauma, it takes energy for another person to be present to someone recovering from trauma. And for thousands of reasons they might not have the energy. Sometimes this has happened to me and I’ve felt ditched rather than supported. I am all the more grateful to those who have been present with me.

Great topic, Loolwa. I’m glad you’re sharing what you’ve learned on your journey.

Anasuya

loolwa February 18th, 2008

Thank you for sharing your thoughts! I definitely think this is a topic that needs to be addressed more in public discourse, with those suffering from chronic pain, illness, and trauma sharing their insights with others. I think there is a fine line between patient empowerment and patient blame. I will write more about this topic in another post.

Sarah Granger July 10th, 2008

I agree – it is incredibly important for people to write about this topic in a detailed way – because those not in chronic pain cannot understand what it’s like without massive amounts of information, and those with chronic pain often have a difficult time finding nurturing communities for them.

I’m sorry it’s been ten years for you. For me, it was three for one set of injuries, then I was mostly better for 5 years, then so far it’s been nearly three more for a newer set of unrelated injuries. I find the right balance of optimism and realism, mixed with an arsenal of pain management techniques and a continued willingness to put myself out there – even if it occasionally means increasing the pain in exchange for a change of scenery or a dose of sanity – makes all the difference.

lee nevitt July 17th, 2008

Hi… i do belive that sharing and talking about chronic illnesses is a great healer.. or temp pain reliever anyway!.. i spend most of my time tracking down people to talk to and share.. not sure experinces is teh rigth word but i think you know what i mean……
i am a newbie and my pain has onl been goign for just over a year… but knowing that you have a lifetime ahead mmmm not agreat thought to dream about!

Jeri Doten January 11th, 2009

I’m a two year newbie to chronic pain (failed back surgery) and it’s been very, very frustrating not knowing anybody who understands (esp doctors) pain.
I had a career job that ended because of pain meds that were prescribed for me. I’ve tried every therapy out there but I’ve slowly gotten worse (neuropathy/burning/numbness in my back/leg/foot – very painful to walk let alone wear shoes & socks).
Doctors keep wanting to prescribe anti-depressants, muscle relaxants, nerve meds (neurontin & lyrica). NONE work!!!
People who understand and listen and laugh with me – now that does temporarily work. At least it gives some relief.
I believe in the power of prayer and I’ve heard of miracles happening to other people – I just believe it’s all in God’s timing for all of us.
God bless,
Jeri

Elaine February 7th, 2009

I too suffer from RSD, for 20 yrs. now. I found out that talking about what happened, why it happened to me, blah, blah, blah did help me understand just what chronic pain entailed. I received much education re: rsd, (which I didn’t even know what that meant), PAIN, I never knew the extreme pain (only the pain of giving birth naturally, twice), the fear of the medical world. You see, I was never injured like this in my life, nor knew of anyone in this position. But, with wisdom, understanding, it took me a long time to get to the “mental” part of it all that I am in right now. I do not “why” anymore, I just moved on dealing with treatments & meds, and lots of support of family & friends. God Bless, Elaine

Cheryl Bowie March 30th, 2009

Oh my,

I sent a message seperately on a difference website because I so
desperately need some assistance.

It was a long email so I am not going to retype it here – but I have had
3 cervical fusions and am trying to get to know my body again and its so
difficult.

To make matters worse it was associated with a crime that was covered
up here in the U.S.

I sure do hope you get back to me. I cried when I read the pages because
no where else has anyone ever described so completely what I have
struggled through. Thank you for stepping out and speaking up for this.

Cheryl

Irene Yurko April 11th, 2009

Dear Loolwa,

I was just introduced to your website today. Your personal story of years of chronic pain touched me in a way nothing else has — giving rise to hope for my own condition. I was blessed with a lifetime of perfect health until waking up one morning 3-1/2 years ago to excruciating pain which was ultimately diagnosed as severe spinal stenosis/spinal compression causing pressure on the sciatic nerve. This is a very common problem but a difficult one to live with as the pain is 24/7 and quite relentless. Traditional medicine does not seem to be helpful.

I will keep searching for relief but would also welcome any suggestions you might offer. Thank you for sharing (with humor) your own painful story.

Irene

Corry July 17th, 2009

Corry July 17, 2009
I have been searching for a meaning to all this pain. Injured in fall 2003. rear ended while waiting for a school bus to discharge passengers on a hwy by a transport truck. Lucky to be alive! 3 years later, the same day as I was to return to work, rear ended again…What didn’t I learn the first time??? Thanks for this blog where we can share our experiences and learning with one another. Explaining chronic pain is like attempting to explain faith. For those who have no faith, no explaintion will ever be suficient. For those who have faith, no explaination is necessary. The fact is that chronic pain has changed our lives. We look the same or at least we look able bodied on the surface, but we do not move the same. It is as much a physical as an emotional journey. It has been 6 years since the first accident and I am still getting to know what my capabilities are. Sometimes there is fear of re-injury and other times I foolishy push at the limits. I gravitate to friends that are supportive in order to remain optomistic. Optomisim is the engine that allows creativity to flow and invites new ways of accomplishing most tasks. I believe that you, Loolwa have also managed to find some optomism and are now moving forward. Chronic pain places all those who suffer into and interesting dance of denyal, grief, acceptance which playes itself over and over as we journey. (I appologize for any spelling mistakes…this is not my strength)

Nicole Fraser August 23rd, 2009

Hi there, I was a nurse and i have been living with long term pain for 9 years now. I was injured on the job, a heavy stroke patient fell on me and i injured my back. There has been disc issues, sciatica, mechanical back, soft tissue dammage. I have been to the pain clinic , where i had injections done to see if it would temporarily heal my pain, it did not. I attended the self referred pain management clinic where i learned ways to live with pain. ex set a timer , work for 15 minutes, break for 15 minutes.. otherwise i would be so sore i would end up back in bed for days.
I have been on almost all the pain meds, muscle relaxants out there. I was even involved in a marijuana study (the only of it’s kind in the world here in Canada) I have walked with a brace and a cane .
I was a single parent who lived with domestic abuse. Once i left that situation i unfortunately had the experince of a very brutal sexual assault and battery in my home.
I am to see Adam in two weeks in Toronto. I am so very excited to possible learn ways to heal myself.
A number of years ago, i met an amazing man. We dated, became engaged and although i thought i never would.. i remarried. This man is kind and gentle and he loves my children as if they were his own. Amazingly enough i am doing better these past few years than ever before. I often wonder does the company you keep effect your outcome? I am trying to do exercises and use my stationary bike to become more well but i do still have a lot of pain and difficulty. Depression is another thing that i feel is linked to pain. It is hard to stay mentally well when you are so frightened of the pain coming back or never leaving.
Just wanted to share my story. I hope one day to be well enough to run , jump and not worry about whether or not it will land me back on my back in bed!!!

Ione October 2nd, 2009

I found this site from googling chronic pain abandonment.
I had a severe work injury 6 yrs ago fracturing both scapulars, rgt clavicle, rgt cheekbone, 3 1/2 inch gash on lft shoulder along with road rash and scarring along my face and body.  My L5-S1 disc is out 5mm. I was paralyzed for 3-4 months as all of my upper extremities were fractured. I could not bathe myself (and btw, when a nurse you hardly know bathes you, it is the most humiliating thing anyone could ever experience, I think).  It was a workers comp situation and Arnold Schwartzenegger  had just changed laws to immediately accuse the injured of faking. I fought and fought and fought for proper medical treatment.  WC hired doctors to lie on medical reports so they would not have to continue treatment. I was even followed by the insurance carrier.  Mind you, I had half of a face and my limbs hanging off of my body at one point.  Once I was able to move around, they started following me.  I even have the videotape my paralegal swiped for me.
In the beginning of this incredible healing time I had before me,  many so called friends decided they could not deal and took off. I was crushed to put it lightly.  I deal with the residual pain now and try to move forward.  I do get dragged down too when pain is present.
Currently my 2nd blow took place 2 mos ago.  My 19 yr old cat who I had since birth passed away.  Now for the second time, I am feeling abandoned by people who just can’t deal.  I am lonely, chronic pain continues, but overall- I really do not have much faith in mankind and I do not trust anyone b/c they are sure to thrown my weaknesses in my face and turn against me…many have.  I am deserted again, it stings to high hell leaving me w/ bitterness and rage.  How can people be so unfeeling?  I stay to myself and mainly only communicate with people who have stuck by me.  Even that is hard b/c I don’t want to exhaust them or give them compassion fatigue.  I am single and meeting new people is a whole new thing that plays with my mind.  No one wants anything to do with you if there is something physically wrong with you. I am ex  sensitive now about everything, nothing is lighthearted anymore and I miss that part of my self so much.  I am 39 and I feel like I’m going on 60 with the aches and pains.  I cry all the time of the loss of my baby and fear of living a life alone.  I have little to no support outside of the therapist I pay.  This life is difficult but I keep trying. Bad days good days.  I just want to make it to the other side of these depressions.  I don’t want to be on anti-deppressents.  People tell me I’m beautiful as the facial scars have healed and no one can tell I have a plate in my face.  I know they are there though.
I’m all over the place with this comment and I apologize. Thank you for giving me an outlet.  The stories I read  help in certain ways.
I live in Los Angeles, work as an actress- in pain and try to make due with what I have. It’s all for the health insurance.  It’s really all I CAN do. When I am around people, I only want to run away from them as fast as I can.
I feel no one will want me b/c I’m damaged goods.
Thanks Loolwa & yes, I am feeling sorry for myself.  I thought life was going to be better at this point.

Shosh October 24th, 2009

Id also like to find a way of trying to wrk with you – David Simon sounds incredible the whole site is great by the way-Id be interested in doing techniques that would be good to strengthen and relieve chronic back pain

fabulous to get to know you here in the blogosphere!  you’re a fabulous writer!
there can be something very strained about needing to know the reason why things happen (and then, sometimes, needing to invent a reason).  this strain adds to the already complicated relationship between people with chronic pain and those who have not experienced it.

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