Pain Is Political, Not Personal, Anymore.

Pain. It seems like this topic should be simple to talk about, but pain is complicated. Pain is so far reaching; I barely knew how to format this piece of writing. Maybe because pain isn’t quantifiable in any traditional way. How can you diagnose something you can’t see? How can you treat something that isn’t tangible? How do you heal what seemingly isn’t broken?

I can’t possibly write about every school of thought, stance, opinion, or circumstance with respect to opioids, the war on opioids, or how it affects people in deeply personal ways, all in one, short piece of writing. There are too many avenues, too many roads that diverge into far too many topics that contain too many viewpoints, history, and information. The arguments are so strong because this situation is that complicated and pressing. I acknowledge every perspective and that they are all intertwined in this heavily deliberated subject. And they are all important.

I write today to express my standpoint. My voice. My point of view, shared by millions more in our country.

We feel cast aside.

We feel shamed.

We are scared.

We did nothing wrong.

We will be the causalities of this war and no one is thinking twice about that.

I have lived in persistent, chronic pain for 17 years. My body chemistry has physically changed to believe that pain is normal. I’ve gone through every test and every diagnostic procedure imaginable, and pursued every treatment available to me. I’ve repeated treatment options countless times hoping many of them will one day bring relief. I have adjusted my lifestyle countless times, changed my diet countless times, incorporated methods of healing from other cultures, pulled from all resources in Eastern and Western medicine and beyond.

I remain in constant pain, despite all my efforts. This abnormality is my normal, 24 hours a day, 365 days a year.

There are millions of people, in this country alone, who suffer from chronic pain everyday, just like me. Chronic pain conditions are notoriously misunderstood and misdiagnosed.

For 17 years, I have taken pain killers to help manage my pain. I don’t take them everyday. I don’t rely on them as a solution to a never-ending problem or view them as a cure. I take pain killers when I literally think about throwing myself into a wall because being unconscious is preferable to being in that much pain.

Yes, it is that extreme, because taking pain killers has never been a casual decision, for me or for my doctors (past and present) that prescribe them to me. Doctors shouldn’t prescribe pain killers unless they are absolutely, medically necessary and patients shouldn’t be reckless about taking them.

The uncomfortable truth that no one wants to talk about is some patients need pain killers to survive. Yes, need. This is not debatable. This is not politics. But myself and patients like me are severely punished in this war on opioid addiction. We are the people whose quality of life will suffer greatly, even though we have done nothing wrong and taken our medication as directed. We are the people who are constantly shamed, everyday, for this reality we live in and cannot change. And we are the last people that should apologize for needing this legitimate, medical treatment.

I recognize that in the 90s, the treatment for any form of ‘pain’ was pain killers, with little discretion. I understand the drug company’s endorsement of pain killers as a ‘safe’ treatment played a big role in the mess we are in today. But now the pendulum is swinging too far in the other direction.

I know addiction, to any substance, is dangerous and claims hundreds of thousands of lives every year. I have personally known many people who have suffered from addiction. I have suffered alongside them as they battled it, lost themselves to it, overcame it, or lost their lives to it. I know what addiction is capable of; The destruction, anger, havoc, loss and devastation it brings upon the addicted and their loved ones. Addiction needs to be taken seriously, treated seriously, and covered by insurance.  

But I do not deserve to be treated like a drug addict when I don’t abuse my medication.

Dependent is not addicted.

If I didn’t take pain killers, the only thing that would suffer would be my quality of life.

This does not make me an addict.

I’m familiar with the counter arguments to my above statements. I’ve heard them countless times:

1) Pain killers should not be a legitimate, medical treatment because prolonged use is not safe.
2) Pain killers are addictive.

3) More and more people die from opioid overdoes every year.

These counter arguments are not fair or justified for people living in chronic pain. These counter arguments do nothing except perpetuate a culture of shame surrounding chronic illness.

Most people living with chronic pain conditions already live with constant guilt about their circumstances. The shame and stigma I have encountered living with a chronic pain has driven me to hide it from the world. It is only recently I have begun to speak openly about the side of my life I never let anyone see. Early on, my honesty was met with hostility and rejection. People don’t understand what they cannot see.

I chose to live a life that includes more than being a professional patient, with 4 doctor appointments a month. But this choice comes with the price of being misunderstood even more. The daily physical and emotional struggles I have are enough. I don’t need government officials completely destroying the quality of life I have come to know with medication.

In an effort to save the lives of people who abuse prescription drugs or become addicted to illegal drugs, this “War on Opioids” is setting up a medical system that will only bring misery to patients who are not addicts and in genuine need of pain killers. My rights and my fellow chronic pain patient’s rights are on the line. Our treatment options should not be compromised because of drug addicts. When you live in constant, physical pain and you find something that provides you with any kind of relief, it cannot and should not be taken away.

Healthcare

Lately I’m walking through life numb. I go through my daily routines, my adulting to-do lists and I am completely separate from my emotions.

I wake up, have a cup of coffee and hope my pain level will be helped by a dose of caffeine. When I’ve finished my coffee and my pain is the same, being disconnected from hope is better than dealing with the let down. Some might call this depression, but I call it survival.

But this disconnection I enjoy is slowly fading in the wake of anxiety. My civil right to health care, your civil right to health care, is being threatened. My brain can’t stop spinning out in anxious trains of thought. I feel the knots in my stomach, chest, and heart getting bigger, more complex and heavier. This administration has my husband and I afraid for so many reasons, but the repeal of the ACA in site is profoundly devastating. I know I’m not alone in that I have lost faith in my country and its elected officials. They are supposed to do what is just and in our citizen’s best interest. They are supposed to protect us.

Repealing the ACA has consequences we cannot foresee and the ones we can are depraved. 20 million people have been helped by this imperfect system. The entire medical system, from doctor appointments to insurance companies is an imperfect system, but we are entitled access to it. There are copious amounts of people that don’t even realize they themselves benefit from Obamacare. People who complain that healthcare costs are soaring should realize this doesn’t help solve that problem, it only amplifies it. People say you can’t put a price on your health, but those of us who have lost our health know just how much it costs to live with disease. Not just the financial cost, but the emotional, physical, and mental costs as well.

I know I’m not the only one that searches for a doctor in network when there is a new diagnosis to treat. I know I’m not the only one that thinks how much it costs to call an ambulance and opts for driving to the emergency room instead. I know I’m not the only one that cannot have children due to their medical issues and even if I could, probably would not, because all my extra money goes to paying hospital/doctor bills and prescriptions. I know I am not the only one that relies on medication on a daily basis. I know I’m not the only one that would go bankrupt without health insurance and physically cannot work. I know I am not the only one that without health insurance would suffer in unthinkable, inhumane ways, and lose my will, my stubbornness to get through each day. This is my community and I fear for everyone that is apart of it. Even those who are fortunate enough to not be apart of this community; I fear for them too. Not only because everyone deserves access to healthcare, but because you never know if and when the day will come that you will join our community. No one thinks about access to affordable, quality healthcare until it becomes a necessity and by that point, you’ll be terrified to live without it.

Shaming Part 1: Baby Shaming and Government Regulations

We live in a culture of shaming. I can’t really recall when this became so prevalent, but it seems it is everywhere.

Body shaming, medication shaming, slut shaming, food shaming, gender shaming, religion shaming, disability shaming, victim shaming, mom shaming, parent shaming. 

I mean seriously. Put any word in front of the word “shaming” and it’s another classification of shaming. Friend shaming. Strength shaming. Life shaming. Unknown hurtful shaming.  

Aren’t you exhausted just reading this list? I’m exhausted just typing it.

I’ve encountered disability shaming, medication shaming, body shaming, and baby shaming to name a few. I think everyone experiences shaming in their lives, whether it’s inflicted by other people or themselves. It’s hard to say which is worse, but I know the shaming from others flames the fires of my self-inflicted shaming. 

For a very long time, I wanted to be a mother. I always thought it would be great to have twins, since I am a twin. At 19 years old, I had been living in chronic pain for 4 years. I was in a significant relationship, which led me to really think for the first time about having children and being a mother. I was pretty sure that having children was not in the cards for me. I knew there was still a possibility that could change though, and I found that comforting. In all my significant relationships that followed, I was honest about my ambivalence concerning kids. I didn’t hide the fact that I questioned being able to physically handle pregnancy. With many boyfriends this was a cause for concern and for a few it was a deal breaker, which I understood. 

When my husband, Max, and I started dating many of my friends were married with children. My brothers each had 2 kids as well. I love being an Aunt. It is one of the great joys of my life. This joy unexpectedly revealed that my concerns about pregnancy were short sited. There are a number of ways to have a child, but it is a completely different thing to be a parent. Having a child is the easy part. Once you have that life to protect, raise, support, and love, that is when the real work begins. This is a completely obvious statement. There is no surprise in this revelation. Yet when people talk about kids, pregnancy somehow seems completely separate from being a parent. When people have pressed me about having kids, it is always and only focused on the pregnancy. My being a parent never enters the conversation. I know that were I to have children, I would want to be the kind of mother my parents were for me; I would do everything for my child. They would come first, always. 

Since Max and I got married, I have also been diagnosed with Degenerative Disc Disease/Arthritis in my spine and Pseudotumor. I had spinal surgery in our first year of marriage. Every doctor, nurse, and physical therapist I saw eventually realized we were newly weds. All of them did a pretty poor job of hiding their panic and concern when they arrived at the topic of family planning. “So…did you want to start a family right away?” This question was always posed to us in the highest pitch voice coupled with the most anxious body language. When we replied we weren’t intending on having children, we received identical reactions from everyone; “Oh! Oh that’s so great! If you tried to have a child, it would break you!” 

Remember that possibility in the back of my mind? That little piece of me that still had the option to have a child? After too many medical realities, that small possibility that had always comforted me is gone. One of the hardest things I have ever done is admit that my child would not be able come first. I cannot live a life where my health is not prioritized first. There is a medical need for me to take care of myself and put myself first just to function on a daily basis. It is one thing to make the choice to not have children. It is another to have the choice essentially made for you. I guess I always knew it was never in the cards for me, but it doesn’t mean that I wasn’t heartbroken.

Thankfully, Max completely understands and I am grateful everyday that we are enough for one another. We focus on all the kiddos we get to love and spoil that are in our lives. Our lives are made richer and fuller by all the kids we love so much. Our hearts burst with each visit, photo, and milestone. We feel so incredibly lucky.

The decision to not have children is something I thought about for the better part of 10 years. It’s also a deeply personal topic with an equally personal journey at how I arrived at this decision. 

So every time an acquaintance says “So when are you going to have kids?” I don’t really want to reveal all of this. A general, impersonal response like, “I don’t know,” is my go to. Can you imagine if you were making small talk with someone and they launched into such a deeply personal narrative? 

 There have been times when someone who knows me relatively well has inquired about why I haven’t had children yet and I tell them I’m not planning on it. Before they ask why, they judge. Here’s a list of responses I’ve received from people who know me as well as a close colleague:

-       “Oh that’s a bad idea. Who will take care of you when you’re old?” 

-       “Oh. Do you hate children?” 

-       “But you’re so great with kids! Why would you want to deprive yourself of that       experience?!” 

-       “You know it’s the best thing you will ever do with your life.” 

-       “No. I don’t accept this. You will be a mother. You should be a mother. It’s your job to be a mother.”

-       “If you’re not having children, why did you get married? There’s nothing to celebrate unless you have a family.” 

It’s fascinating to me that someone will pass judgment on me without knowing or understanding anything about me or this situation. Why is it okay to judge first and ask questions later? (If people even have the good sense to ask questions later.) Why are we so hard on each other? It shouldn’t matter to anyone else, except my husband and I, why we’re not having kids. While I understand that my family and those closest to me may feel sad for me, that is different. They don’t sit in judgment of me. The don’t condemn me. They support Max and I in whatever we choose. I don’t know why we live in a world where if someone finds out that I’m not having children, their first instinct is to shame me for it. Here’s a list of reasons why people could not have kids:

-       People physically can’t have children.

-       People physically can’t be parents.

-       One person recognizes they physically can’t be a parent and does not want to overburden their partner in an unbalanced marriage.

-       People believe the greenest thing you can do is not have a child.

-       People maybe hesitant to be parents themselves, for any number of reasons.

-       People prioritize travel over children.

-       People hate children.

-       People don’t want to deal with the financial burden of having children.

-       People like sleep.

-       People are too OCD to deal with the messes, physical and emotional.

-       People like sanity.

-       People like date night.

-       People like drugs.

-       People like sharp edged furniture, skydiving, and having pet snakes.

-       People can simply not want to have children.

Let me address one of the serious items on that list; “One person recognizes they physically can’t be a parent and does not want to overburden their partner in an unbalanced marriage.” I knew on the third date with Max that we were going to get married. I had found a partner. I saw someone I could lean on when I needed support, but who recognized I would still be independent. Max has never seen me as limited by my health issues and I have never seen him as a caretaker. We rely on each other as partners, spouses, and best friends, like any other marriage. It is comforting to be treated by my husband as ‘able.’ It helps me feel more secure with myself when confronting harsh realities like not having children, which makes me feel ‘unable,’ and selfish. That being said, I do not see this item as a hypothetical concern. This would be our future. 
My chronic pain condition and other health issues dictate the decisions I make everyday. "Should I do the dishes or wash my hair?" I am physically able to do only so many things in a day. If I am having a particularly rough day, I am lucky to accomplish anything. Sine I am not currently working, one of my goals is to do one thing everyday that contributes to my marriage. Sometimes that's cleaning our apartment, going to the pharmacy, grocery shopping, etc. Other days, I have to settle for emotional contributions; Telling my husband I love him, that I'm proud and grateful he is supporting us financially, and that he makes me incredibly happy, everyday. If I can't do the dishes and wash my hair in one day, it's not hard to understand why I worry my husband would be an overburdened parent, if we managed to have children. 

Every time I encounter baby shaming, if I don’t want to reveal my personal story, I always think about saying one thing; I don’t want to risk destroying my marriage to satisfy a cultural standard. Let’s add that to the list; 

-       People don’t want to sacrifice what is important to them to satisfy a cultural standard.

           

Last week the Ohio senate passed “The Heartbeat Bill.” It can still be vetoed by Gov. John Kasich. Regardless, the fact that it was passed through the senate is very disturbing to me and I’m sure countless other women. The decisions a woman makes about her reproductive rights should not be regulated by law. As far as I’m concerned, the government trying to control a woman’s body is the most appalling kind of baby shaming. When any woman is making decisions about family planning, like having a baby or not, these decisions are the most private and personal.

This bill disturbs me particularly thinking of mother’s who cannot physically handle pregnancy, like me. Though I am able to conceive, it has been strongly recommended by my doctors that I not have children or ever carry a child to term. What if I had to because of this law? Why is the life of a fetus more important than mine? Call me selfish or a murderer or whatever you want, but I don’t want to put my life in danger because someone else declared rights over my body. These are my choices to make. My consequences to live with forever.

So the next time you’re talking with someone, and it comes up that they’re not having children, if you can’t simply say, “That’s cool,” and move on with the conversation, then ask them “why.” Don’t give up and jump to shaming. Whether you know them well or not, taking a few minutes to convey a genuine interest and open up the conversation to sincere dialogue is the superior alternative to shaming. Taking the time to appreciate a different point of view is never a waste of time. If you took the time to read this blog, then you have contributed to appreciating a different point of view and thank you for taking the time. We could use a little more understanding and a lot less judgment these days. The best way to start that process is to just ask, “why” and remain open to one another’s perspectives.

Wiggle Your Big Toe

Daylight pierces my vision and I flutter my eyes through sleepiness. I’m still cozy and wrapped up in my blankets. I have one foot in my dreams, but the other is inching toward the waking world. My senses slowly start to awaken with me, but there is always one sense fully in gear well before I am. As my pupils adjust to the morning light, I am trying to mentally and physically adjust to the pain that overtakes my entire head. It is always the worst in the mornings, though I’ve never understood why. The pain is an overbearing wave that engulfs me. I always feel like I’ll never make it out of bed. The promise of another day has just been fulfilled, but I am already deflated.

“Wiggle your big toe,” is my morning mantra ever since I saw Kill Bill Volume 1.

“Wiggle your big toe.”

Get up. Push through. Be productive. Get to adulting.

“Wiggle your big toe.”

Find the will to move. Summon the motivation to sit up. I need a cup of coffee.

“Wiggle your big toe.”

For 16 years I have gone to sleep in pain and woken up in pain. Living in chronic pain is exhausting. Having a disability no-one fully comprehends makes living with it difficult and lonesome. It is extremely scary for me to declare publicly “I live with this condition,” when I have spent more than a decade perfecting my performance of hiding it from the world. Hiding it has always been easier than explaining it, but here goes nothing.

My condition has been classified as Chronic Daily Migraine. It is theorized that is the result of how I was placed in the womb, as a twin. The best working theory to explain why or how this happened is just that, a theory. I still don't really know. Maybe I'll never know. So here's the best guess multiple doctors and I have come up with; I have a pinched nerve in my brain stem, my Trigeminal Nerve. This pinching didn't occur until puberty, as a result of bone growth and development. Since then, I have had a 24-hour, 365 days a year, for the past 16 years. 

Chronic Daily Migraine/Headache is a tough diagnosis to carry. Migraines are still very misunderstood in the medical community. As a consequence, I went through over 2 years of hospitalizations, every scan and test imaginable, and every treatment possible offered by both Eastern and Western medicine just to prove my pain was real, not psychosomatic or the result of medication abuse. It was also during those 2 years I consistently hoped every test would reveal something or each new treatment would magically cure me. After those 2 years, I stopped getting my hopes up with each treatment and test. To this day I remain open-minded to new treatments, tests, and theories but it protects me to approach each proposal with realistic expectations and remain emotionally neutral, not to be crushed over and over when things remain the same.

Migraine sufferers know that migraines come with any number of side effects, depending on the type of pain, the location of the pain, and the intensity of the pain. My side effects include light sensitivity, noise sensitivity, nausea, dry heaving, dizziness, exhaustion, blurred vision, loss of appetite, halos, and all out incapacitation. I deal with most of these daily.

I never know what kind of reaction I will get from someone if I decide to share this diagnosis with them. I have received an array of reactions ranging from “I’ve never had a migraine, but I can’t imagine living with one is that bad,” to “I don’t know how you function.” In high school, I had teachers and other authority figures lecturing me that if I was sick, I needed to act sick, look sick, and be sick, but this lecture was not for my benefit. They didn’t have my interests at heart or true concern for my well being in mind.  It would make ‘my situation’ easier for people if I looked the part, since there is no external, physical evidence of my ‘being sick.’  But when I presented myself honestly, sick with something unknown and complicated, I was alone and isolated. So I rejected their lectures and learned a completely different lesson. Perhaps it was not the lesson they intended to teach at that young age, but it has repeated itself over and over none the less. When someone asks, “How are you?” They don’t really want to know. They are just being polite.

I’ve read many stories of people living with disabilities. Most of them are inspiring stories of triumph, overcoming adversity, finding faith and God, and accepting themselves as they are.

That is not my story.

If and when I have overcome adversities, it is basically because I’m too stubborn to let the alternative occur. I lost my faith and belief in God. I still struggle to accept this part of myself that I often times hate. 

If a person is the sum of their experiences, then I can’t say this chronic condition has ruined my life. It has foraged an arduous, sometimes grueling, path that I have stumbled through, but I'm stumbling through. I wouldn't be able to walk or stumble without the love and support of my amazing family. If I had walked a different path, I wouldn’t have met my husband, who is my everything. I wouldn’t have the most loyal and amazing friendships that make my world brighter.  I wouldn't be who I am today.

Finding Dory; Invisible Disabilities Seen Clearly

Finding Nemo reached world-wide success, charming audiences with it’s family friendly accessibility, superior and trademark Pixar animation, and lovable characters. It stuck to a familiar tune with it’s messages and themes; That “Parents shouldn’t be so overprotective,” “You are not defined by your limitations,” and “If you have enough determination, you can overcome any adversity and anything is possible.” These themes are important and radiate with fans of all ages, but it wasn’t what made me fall in love with this movie. I fell in love with the creativity. The fish that ‘drops off’ her kids to school by opening her mouth, as if she is a minivan. The group of sharks that are trying to kick their addiction to fish. The parenting philosophies that are pure poetry and gibberish from a sea turtle. The animation that is so exquisite you don’t understand how those jellyfish are technologically possible. Marlin and Dory hitching a ride inside a whale because, you know, Dory speaks whale. And the dialogue is great. I have every line of dialogue memorized. To this day, watching Marlin and Dory travel the ocean is still one of my favorite experiences.

When I heard they were making the sequel, Finding Dory, I was instantly nervous more than I was excited. Even though Pixar has a pretty decent track record for creating amazing films, they still have some pretty big mistakes in their catalogue (i.e.: All transportation vehicle movies, and most recently The Good Dinosaur.) This sequel would either be the best thing to ever happen or the worst. (This is now currently how I feel about the inevitable 3^rd movie in the series to come.)

Andrew Stanton wrote and directed Finding Nemo, released in 2003, and would not cave to demands of when a sequel would be ready. It is to our benefit technologically that Finding Dory took 13 years to conceptualize. The digital advances are extraordinary and the attention to detail is exquisite. Who else, other than a Pixar animation team, would spend 2 years animating a grouchy septapus to perfection? As the animation team toiled away to create the visually perfect story, Stanton waited patiently for Dory’s story reveal itself. 

In the Finding Dory movie commentary, Stanton talks about the fact that he had conceived Dory as a tragic character. Finding Nemo is a light hearted film and Dory is the beloved, forgetful sidekick. No one thought of her backstory as one filled with sadness. She is detached, misunderstood, and lost in a world without compassion. Finding Nemo introduced us to the underwater world Pixar created with the potential of harsh realities. Finding Dory takes place almost exclusively in the harsh realities of the world, in the ocean and beyond, while still remaining a family friendly film. 

When Baby Dory came on screen I completely lost it, as did everyone else I’m sure. She is pure genius, Pixar. Well played. We were all hooked after Baby Dory told us that she suffered from “short term remembory loss,” and that “She liked sand because sand is squishy.” It broke our hearts to see that she grew up all alone. Not just without a family or friends, but without memories, without understanding, and completely isolated. She just kept swimming, armed with nothing except knowing she can’t remember anything, and she is looking for someone. 

I have read many reviews that call this movie “safe,” “underwhelming,” or “that it fails to journey to new places.” Perhaps there is some truth to that, but I feel the importance of this movie is only being half acknowledged and then passed over far too quickly. Critics judge the plot threads and character developments as one note or unexplored, but they are failing to see the bigger picture this movie presents. Without trying or meaning to do so, Stanton has made an exceptionally honest and profound movie about what it means to live with a disability. This film is deceptively simple and quite successfully, depicts very real struggles for anyone living with a disability. What resonates so intensely is Stanton’s consideration of the infinite guilt the disabled live with. I live with a disability, and just like Dory, it is not something that can be seen. This is one of many key and fundamental differences between Finding Dory and Finding Nemo.

Nemo has a small fin which makes it more difficult for him to swim, but with fortitude he fights to be treated as any other fish, not defined by his physical disability. This familiar story of overcoming adversity is easily translated into inspirational films. While Dory and Nemo share this same message, their journeys are totally different, just like their disabilities. 

Dory has memory issues, which is depicted as many mental disabilities are, extremely complicated. The movie suggests Dory is capable of remembering after spending enough time with people she knows, staying in familiar surroundings, and remaining calm. When she is upset, alone, or in unfamiliar places, she tends to enter a downward spiral, which is not uncommon to many processing disabilities and mental health issues. Dory is also portrayed as relatively functional and she puts on what I recognize as “the brave face.” I know that what I see as a “brave face” may actually just be Andrew Stanton’s excellent character relate-ability, but as someone with a disability, I see them as one in the same. My disability is a very complex, chronic pain condition involving the nerves in my brain. With the exception of a very close circle of friends (who quite honestly may not truly understand my disability), to the rest of the world, I am just like any other person. My “brave face” is my character relate-ability; The performance of being an upbeat, positive, energetic person who is a pain free, fully functioning adult. My disabled, pain filled reality never reaches the surface if I am outside my home. The only person who doesn’t see one version or another of my “brave face” on a regular basis is my husband. My inner circle and my family interact with a version of my “brave face” far more than my medical reality. It’s a more comfortable situation for all parties involved if I don’t “break character” and I’ve gotten very good at this performance with 16 years of practice. 

I do not mean to suggest it is more difficult or challenging to live with a disability you cannot see. Whatever the circumstances someone lives with any disability, it is always challenging. Always. It doesn’t matter if it is visible, not visible, impacts your life greatly, or minimally, if you were born with it, or if it is a result of an unfortunate occurrence; It is always challenging. 

I do absolutely mean to highlight the distinction of visible and invisible because I truly believe the world treats disabilities you can see very differently from ones that you can’t. I have lived it. There is a basic incapability to comprehend things you cannot see vs things you can see. There have been many times in my life where I have thought if I lived with a more ‘politically correct’ disability, a more common disorder, or at the very least something that people could see, I would not struggle with such overwhelming feelings of guilt. Being so misunderstood in my attempts at honesty have affected my relationships, just as Dory’s relationships are affected by her disability and persistent feelings of shame.

Guilt. It’s that knot in your stomach, the weight that sits on your chest, the worry that gnaws at you and presents itself in most situations, mundane or complex. This knot gets bigger and the weight is overbearing in the more obvious moments where someone is frustrated, worried, or upset. We know that our trusted friends and loved ones genuinely have no problem being accommodating. If they are frustrated or worried it comes from a place of love. 

 But our guilt takes over and “I can fix it,” is our mantra born of desperation, cloaked in contrition. There are many times it is Dory’s mission and I have shared the sense of urgency to “fix it,” whatever it is, for whoever I can, though most of the time we are trying to fix ourselves for those we love. When my friends and loved ones have snapped at me or when I am struggling with my disability, I feel as Dory feels; I see myself as ‘damaged,’ someone with a problem and I will always apologize for it and I beat myself up for it, as we see Dory do. When Dory is finally reunited with her parents, after they all embrace in happiness, the first thing she says is “I’m so sorry. I know I've got a problem, I know.”

So in an effort to “fix it,” we go find purple shells. I have been where Dory was, searching for a purple shell to make her Mother smile. I have looked for simple gestures to let my parents and loved ones know and to believe that I am able, that I am okay, or that I will be okay. The best way for us to prove we are able, we are okay, is simply to live our lives and prove it. But when we stumble and fall, when we go through a hard time, disability related or otherwise, our “brave face” doesn’t always carry us through. So we need purple shells. I am in my 30s and I still stumble, I get back up, and I still search for purple shells. 

Dory’s “brave face,” like mine, is how she manages to function throughout her life. She is the endless and eternal optimist. She is brave. She is outgoing. She is lovable. We root for Dory and we are crushed by her past experiences because we love her, even though we may not fully understand her. When you live with a disability, the eventual lack of understanding inevitably leads to more complicated emotions for everyone involved and oftentimes more frustration. Our “brave face,” keeps all of that at bay. It protects you from having to deal with our situation, but it protects us just as much. It is a way for all of us to just keep swimming.

I’m aware that these emotional and psychological complexities are apparent to me due to my obvious bias and unique perspective. I’d like to believe that Andrew Stanton and all the other people who contributed to Finding Dory made these choices purposely and hoped people would pick up on them, as subtle as they are, but I can’t make that claim with any certainty.

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Finding Nemo and Finding Dory and their explorations of disabilities will influence young generations without them even realizing it. The family-friendly angle of these movies make their messages that much more accessible, which is nothing short of brilliant. Finding Dory was never conceived to be a deliberate, over-politically correct, movie about disabilities, visible or invisible. Never the less, Finding Dory has achieved the most emotional depth of any animated movie I have ever watched. This masterpiece of cinema is soul crushing, straightforward, insightful and quite literally the best animated movie ever made.