The Chronic Pain Room

The Chronic Pain Room

By Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint

Cynthia Toussaint is the founder of For Grace—a non-profit committed to women in chronic pain. She is a frequent contributor to the National Pain Report.

When I watched the movie Room a week ago, I had no idea it was my life story. And I’ve got a strong hunch it’s every woman in pain’s story. At least those of us with high-impact chronic pain.

SPOILER ALERT – Room unflinchingly tells the harrowing story of a young woman, Ma, who had a wonderful life – and how in a moment that life went to hell.

As the story unfolds, we learn that Ma was helping a neighbor, Old Nick, round up his loose dog when he abducted her. For the next seven years, he imprisons Ma in a backyard shed using her as a sex slave. When Ma becomes pregnant, she raises her little boy, Jack, using imagination and storytelling to stay sane. When her son turns five, Ma finally finds freedom only to discover the outside world is rife with emotional pain beyond what she suffered in Room.

The movie begins with Ma and Jack in Room – and the desperation, isolation and depression hit me head on. Within minutes, I was itchy with dread-filled, familiar feelings. I was surprised the movie makers could powerfully show my fear, my cage, my desperateness to escape the unescapable.

As everyone here knows, the chronic pain experience cuts us off from most things normal – and when we scream for understanding, for mercy, often no one responds. That’s how it was for Ma and Jack as one scene depicts their daily attempt to shout through a single air vent in futile hope of being rescued.

One particularly disturbing scene was when Ma cruelly wraps a terrified Jack in a rug as a scheme to convince Old Nick that the boy is dead and needs to be dumped. She yells at Jack to play stiff and dead, then run as soon as Old Nick’s pick-up slows down.

Yes, we understand Ma’s desperate need to be found, but at the cost of traumatizing her son and putting him in harm’s way? This mal-adaptive behavior reminds me of what we women in pain subject ourselves and others to because of the never-ending, seemingly-hopeless torture. We’re consumed by the hatred of where we find ourselves trapped. I for one have on too many occasions thrown things, screamed at and physically traumatized my wonderful partner and caregiver, John. And that’s just for starters.

We’ve all done unthinkable things to survive. I know women in pain who self-medicate to forget or have many sexual partners to feel valued. Many of us don’t leave abusive or violent partners as the walls of our chronic pain Room prevent us from living independently.

When Ma finally gains her freedom with Jack and reunites with her family, I related to her story even more. After the initial elation fades, family members become angry, seemingly blaming Ma for their upheaval. Her father can’t look at Jack and abandons his daughter. Even the media judges her harshly. As a result, Ma attempts suicide.

This plot line took me back to 13 years into my CRPS when I was finally diagnosed. I was certain my friends and family would re-embrace me as now we had the answer to the horrible never-ending pain and misery that impacted all. I thought my name would be cleared and I’d be forgiven. Instead, they distanced themselves to the point of emotional abandonment.

The hardest scene for me was when Ma showed Jack a picture of her having fun with old high school girlfriends. With a flash of anger, she bitterly asks him what the difference is now between her and them. I knew the answer as tears welled. Ma said, “Nothing happened to them.” I too have often felt scorn toward pre-illness people I once knew and loved who moved on with their lives as if I never existed.

I highly recommend Room as it’s so amazingly crafted and emotionally affecting. Of course the screenplay writer wasn’t thinking about women in chronic pain and illness – but many of its themes cross over seamlessly. The life being destroyed in an instant, the suffocating isolation and loneliness, the torture and hopelessness, the loss of dreams and normal, the judgement and blame from those who should support us.

Ma and Jack’s Room had a skylight that brought in a piece of the outside world, a slim view of hope and possibility. Let’s look to our skylights… and hold on to the hope of one day being free.

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There are 10 comments for this article
  1. June Ward at 6:33 am

    I’m sorry I see it now but thanks for your message it’s very inspiring

  2. June Ward at 6:30 am

    Thanks for your message. Also did I understand correctly about a film or video. If so how can I get to it?

  3. Jean Price at 7:11 pm

    Cynthia…I forwarded your article to a friend and she had seen this movie also. She felt your comparison was really on target and liked the article. I thought you’d like to know that someone outside of the pain circle saw the meaning in this too! Nicely done.

  4. JoDawn at 2:22 pm

    Cyn,
    You remain, as always, amazing.
    Thank you for helping so many of us deal with whatever room we are in at the moment.
    You are an angel!

  5. Anna at 12:41 pm

    Another great well written piece! Thank you Cynthia.

  6. Danny at 11:19 am

    I just watched “Room” a couple of days ago. I was in what my wife & I call “The Pain Room”, which has blackout curtains, is as sound resistant as we could afford to pay our homebuilder to construct and is where I spend 50-75% of my life. I suffered brain damage in the accident. The worst side effect of the damage, of which there are many, is severe, chronic head pain. (Not head-“aches”, and not migraines; my nerve “communication system” is damaged, similar to a computer damaged by an electrical surge. My brain has been rewired in a way that causes constant pain with fluctuations in severity and duration.

    I, too, saw the Room metaphorical connection between “Room” and my life, and especially with my “Pain Room”. I understand Ms.Toussaint writes for and about women, which is both admirable and necessary, as a woman can speak to specific issues in ways that other women can relate.

    However, chronic pain doesn’t discriminate. I am thrilled that this article has been made available to everyone, including men. If I hadn’t read it, I would never have been able to take my recognition of the similarities between the main characters in “Room” and truly understood how fully this movie applied to my situation. Thank you, Ms. Toussaint! Your ability to vocalize how this excellent movie is a metaphor for those who suffer from “high impact, chronic pain” has helped me in ways that I couldn’t imagine. Please don’t limit your talents to only speaking to women. Men are suffering, and we need to hear your voice, too.

  7. Jean Price at 9:26 am

    Cynthia…so many things with pain “cross over” in our lives! Your analogy of this story is a perfect example. In effect, we can become prisoners of our pain, tortured and bludgeoned on a daily basis, not only from the physical aspects but also on emotional and spiritual levels. And once named, the support…the rescue…we expected is often lacking, as on the heels of naming it, we find no cures are available and our family and friends still don’t understand! I’ve said before how important I think grief work is when living with pain. Our losses are often multiplied and have many ripples in time as new losses appear and we face more and more changes. First and foremost seems to be function, and in a world that values “doing”, we find little affirmation or support for our inablility to “do”. We may easily fall into the trap of believing the “if onlys”…if only I was stronger, if only I was more disciplined, if only I ate better, if only I paced myself, if only I could make people understand, if only I could do a few things I used to enjoy, if only I wasn’t so lazy, if only I made better use of my time, if only I DIDN’T HAVE THIS PAIN!! This is a slippery slope and can lead to another kind of imprisonment, one we unknowingly construct for ourselves. It’s the prison of self doubt and it’s decorated by loss of self esteem, loss of self worth, and loss of self respect. We find ourselves in a black hole, without company, and without a ladder to escape. It helps to realize we “made” this hole, we fashioned it from our pain and the many losses pain brings. Yet, it doesn’t have to be this way! We can stop rebelling against uncontrollable goals, start understanding we have a new normal that will be challenging but not impossible to live with, focus on the NOW…not the years of pain past or potential future pain, and we can work to let go of fear. Fear of the pain, fear of becoming worse, fear of not having ENOUGH! None of this is easy, yet it’s so very worth doing and little is done to support people with chronic pain in this area. Grief counselors can help, grief support groups can help…even though their focus is on the ultimate change of death, we can replace that word with pain and see how the losses and feelings and problems are mirrored in our lives. In effect, we can tear down our prison walls and resurrect our lives within the reality of pain. I believe the changes in health care proposed by various agencies are doing great damage to the lives of those in pain, and not just the by the denial of proven medication treatments! We’ve picked up anger, frustration, humiliation, distrust, fear, disbelief, and bitterness when learning about these system changes and how this will impact our own care! I know I have and I sense this in many others. This creates a prison all its own, and prevents us from using our energy for healing, survival, and the occasional joy we could find along the way! It’s another change, another loss to grieve…and one we didn’t vote for! Our most important job in our life with pain is keeping our perspective and not letting this tainted system further taint our lives. Not easy, not fair, but doable with the right tools. We CAN escape some of the prisons of pain…and develop a rich internal life in the process. Doing isn’t all it’s cracked up to be…but BEING is the real essence of life, of humanity….and the part of life we do have some control over. Yes, I have pain…but I’m still me, and that’s what’s important!

  8. Sheryl Donnell at 7:50 am

    Wow. What powerful words and themes you just described. I haven’t seen the movie but I feel as if I just connected to you with the same feelings of abandonment and loss and loneliness. Thank you for reminding me all of those feelings are valid and I’m not alone.

  9. Angel at 7:18 am

    Very enlightening story. I can relate to this and you’re right, most women with life changing chronic pain can. For me what’s worse than the pain is the abandonment. Life moving on without me, the feeling that I’m a burden. If this were only the pain if manage but it’s not. I call it the fallout. Pain is so isolating and that aspect is one that only the pain sufferers understand. Blessings to you

  10. Maureen at 6:57 am

    Cynthia, I am forever sorrowful for all that you have and still do endure. I am sorrowful for myself, also.
    Oh how powerful your writing is to me. You have painted a story that just penetrated my soul, my very existence. You told my story also.
    Some days I look in the mirror, put a smile on my face and say “I am woman, hear me roar’. I try to humor myself, try to give myself incentive to be the woman I used to be (or somewhat like her :)…super woman…who was a happy, social butterfly who could do anything. But, now I cannot do most of anything I used to do.
    I am awakened through my nights and immediately each morn by that monster called PAIN. Physically and emotionally. I try my best to navigate through each day feeling some sense of normalcy, to be all that I can be. And when I often fail at that…I have to also fight the monster called DEFEAT.
    Mix that with an angel called ACCEPTANCE and I find a constant war swirling around me. I have no one to give me care other than myself. I too have been rejected by family and friends. I am Ma.
    May God bless us all and protect us from the ‘added’ hardships that our government is bestowing on our already difficult lives. For they too have reject us.
    But, in numbers we can find strength. Keep together and fight for our rights.