The Burdens We Carry

The Burdens We Carry

By Katie O’Leary.

Working in the film industry I often find myself examining my life and choices through the lenses of film and pop-culture. We all search for answers to the universal life questions of, “Why do I carry this pain inside of me, why is this happening? How do other people deal with it?” For most of my formative years, movies were my escape. My family is more conservative than most when it comes to analyzing our behaviors or even the past – so I look for other ways to understand.

Katie O’Leary

I do see a therapist and of course her guidance and support from her weekly sessions helps tremendously. But sometimes, there are moments in life we cannot immediately share in a clinical appointment. The visual storytelling a film can express will sometimes bring answers to the forefront of my mind – and remind me of the life and choices I am forced to live with.

A few weeks ago, I was watching Lord of the Rings: The Fellowship of The Ring. When Frodo and Gandalf are discussing Gollum while inside Mines of Moria. Gollum is of course chasing after them in hopes of stealing the ring. Frodo, aware of the incredible burden he has to face, says “I wish the ring had never come to me. I wish none of this happened.” Gandalf replies, “So do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that has been given to us.”

This scene has taken on new meaning for me. I sometimes feel that my CRPS is a burden that I must stay resilient to, an evil of sorts that will consume me if I do not fight with all of my power to remain sane. The weight of this disorder impacts my ability to control my temper, my moods, and sometimes even my appearance to the world. Complex regional pain syndrome (CRPS) is a monster – one in which only the person who has it can truly understand. We travel on a journey for peace to relieve our aching bodies, to destroy this monster wreaking havoc inside.

But so often, people do not understand the gravity of that burden. They see you and they think –“I could handle this just fine, why can’t she?” The parallels of this feeling to the film are so prominent. A member of the Fellowship tries to convince Frodo that he is too weak and pathetic to handle the task at hand. They bully him and try to bring him down. Of course, the story hinges on everyone wanting to OWN the ring for power and world-domination (and that is where the two comparisons splinter off). But in that moment, when Boromir cheapens the struggle Frodo endures, I once again found myself comparing my own disability to this fantastical story.

Friends, family, and other people will surround you and tell you that they are your allies. But as the disease takes over and as the incurability of the situation becomes more prominent – you feel as if you are poisoning them with your problems. Frodo decides to run away and deal with this evil on his own, because those around him cannot handle it.

Ultimately, friendship wins overall. Sam follows Frodo as he tries to depart for Mordor. He refuses to leave his side, despite the danger, the emotional and mental anguish, and the possibility that this will end in death. Sam represents every friend I have had in the past 3 years who has seen me at my worst, at my lowest point, fighting to prevent this disease from consuming my soul. There are days when the rage and anger at losing a significant portion of my life to an illness has me wanting punch out the windows of my room.

I have lost many people who cannot handle this part of my life, or who simply do not care. But the true friends I do have, the people who have stood by me and continue to fight alongside me: you are the real heroes. I have yet to be disappointed by my truest friends, because they are like family to me at this point. And returning to what Gandalf said, all I can do is live my life and spend the time that I do have on things that matter. Getting healthier or finding a cure is one of those goals. But holding on to myself, to who I am underneath the pain and anguish this disease has wrought out of me, is the hardest battle of all. I am no hero like Frodo, but I endeavor every day to keep walking and to keep moving forward. And as Bilbo says to Frodo,

“It’s a dangerous business, Frodo, going out your door. You step onto the road, and if you don’t keep your feet, there’s no knowing where you might be swept off to.”

I want to be swept up and step onto the road – but I know the importance of having friends and family to help me down that road.

Katie O’Leary lives in Los Angeles. She has CRPS (from a sports injury in college), knows the entertainment industry well and is a frequent contributor to the National Pain Report.

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Authored by: Katelyn O’Leary

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Nancee

You are a hero much different than Frodo. You are battling things that no one should have to battle and doing so successfully. You have sought out and discovered ways to help yourself. That takes a lot of courage. Extending an encouraging word to others takes courage. Keep up the good fight, for yourself and for us all.

Rakel

The Ring in Tolkien is from the same Norse mythology that Wagner used for his groundbreaking Ring Cycle of operas, or “Music Dramas” as he called them. It is the same story exactly Tolkien has taken so he is not as original as people think. Nonetheless I’m glad it helps, the arts are their to feed the spirit and say what remains unsaid in society. I personally find them a great comfort. Even Freud said “I’m saying nothing Ibsen and Chekhov haven’t already said”. If you want the relief of about six hours in NIRVANA without doing the meditating play Act 1 of Das Rheingold very loudly from the Ring Cycle you will feel nicely high, calm and alive but unable to do other than lie down. Your pain will go for the duration.

Cheri Furr

You are so right! It’s a very hard disease to deal with, and no one completely understands it umless they have it. Now doctors are taking our meds away or tapering them down. Do they not even realize how we suffer? I have been told everything from a few yoga lessons to cure me to being called a drug addict by my own family.

The Ring Trilogy that inspires Katelyn’s post, appears to be symbolic of atomic energy, a topic of which author Tolkien was doubtless aware in the late 1940s. Like the nuclear bomb, The Ring had to be un-made, for peace to prevail, yet few shared sufficient dedication to the pure goal of peace, to cast the Ring back into the fires of Mount Doom and un-make it. Most preferred to steal the Ring and use it to inflict fear and misery upon others, ignoring the dangers The Ring posed to everyone.

The politics of illicit drug trafficking work identically like the machinations Tolkien’s story tells. Drugs to relieve pain are absolutely necessary for folks who suffer real pain. Without them people are not functional. With them we have a life.

It is only the Gollums and Boromirs of our world, who imagine themselves immune from ever suffering pain, who would seek to keep such an evil as the Drug War in operation. Merely telling the truth about what drugs are and why they work, frees everyone and burdens no one.

Yet it was by lying about drugs that vast powers to do evil, were gained. In the 1880s cocaine was promoted as a “safer” alternative to morphine. In the 1920s alcohol was prohibited but tobacco was promoted as a “safer” alternative to alcohol. In the 1930s cannabis became prohibited. Synthetic substitutes have come to be promoted, that mimic these drugs. Adderall is a synthetic cocaine substitute. Methadone is a synthetic heroin substitute. Rarely do we ask the mentally-ill why they buy illegal drugs to alter their thought processes. Yet understanding why the mentally ill seek drugs, will lead to better treatments for mental illness. Prohibition has not caused an outbreak of sanity because lies do not lead us to the truth.

Pain patients are a lot like humble Frodo. They simply need the pain to stop. And that’s what makes their choices honest.

Maureen M.

Hi Katie, Well written post! Love the relations to the quotes, specifically the one from Bilbo at the end. That one can be applied to many aspects in life.
For me… Life in pain (CRPS is one of my conditions) keeps coming back around to ‘acceptance, capabilities and making adjustments’… it’s a full time job!
Keep strong beautiful warrior!!

Susan L.

Heather: Your comment is a gem.

My husband lives with chronic severe pain and fatigue stemming from HSE that he contracted over 10 years ago. It’s been a nightmare.

We took the opposite track from you: we circled our wagons and kept everyone out, except for a very persistent few. I’m not sure we did the right/best thing, but who knows what the “right” or “best” thing is?

Isolation is a drag, and it’s depressing, even for introverts like me. Not having enough (or any at all, for that matter) pain relief makes everything worse.

You might FEEL alone, but you’ve got an army of very lonely people behind you!

♥️

Rakel

A brave post Katie. You are not alone. What you say certainly rings true for me. What is NEVER discussed is that chronic pain is neurological and is there because our central nervous systems are over sensitised. Technically this is brain injury, like stroke, and it does affect our behaviour. I find it helpful to think “I can no more control the [adverse] changes in my behaviour than a person with Tourette’s Syndrome can stop swearing or an autistic person can make eye contact. This is why we are not understood. Apart from a good therapist with neurological training it is having learnt to be happy in
solitude without feeling lonely that has helped me most. I think (though I say it myself I formerly worked in psychological medicine) that is the definition of maturity. Be proud. If you can do that you have done well. And remember as these factors are neurological and not psychological, we cannot be expected to control them.

Heather

I do find myself resentful that I can’t be honest. I feel frustrated that when I’m feeling fear about the future, facing an exacerbation of symptoms, or just kind of down about the relentless physical (and consequently mental) beating that chronic pain is – well, I don’t know who to turn to, really. Instead, I “lie” for everyone else’s benefit. My mother is in chronic pain, and we talk honestly most of the time.

Other than that, I have become fearful of confiding in others because I placed my trust poorly in the past and it honestly set me back even physically when a “friend” decided to tell me what they thought – usually in the context of ending the friendship. I am “too sick” or I “didn’t live up to (their) expectations.” My reality is too complicated for people who don’t even live it? I’m doing my best but “not good enough” for them?

Of course it’s their problem, not mine. I wish they’d have gone quietly away. They were self-righteously telling me (“helpfully”) how I can better myself. Except I can’t.

I wish doctors and the medical community would also focus on how isolating chronic pain is – how it changes relationships, it changes work life (if the person with the illness can still continue to work), it changes our abilities in such a way to limit our interaction with others to at least some degree. I’ve been LABELLED as depressed, but I hate the label. It does nothing much to acknowledge the situation, doesn’t direct me how to positively cope (except to take pills, right?), it doesn’t even validate how I feel. I’m depressed BECAUSE…

Because.

I had a therapist who was wonderful. She said “Of course you’re depressed. Don’t you think it’s NORMAL to be depressed under these circumstances?” THAT was validating. I wish doctors had more time and more training and certainly more understanding.

I’m doing my best. That’s my mantra, now. I acknowledge there are ups and downs. I appreciate the “better” days, and on the bad days I try interventions and keep my head above water.

David Cole

Inspirational Katie, thanks for posting, all CPP’s can take something from these words you have written.