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[epicfales]

When I hate My Body, I Remember What It Has Given Me

It is day twenty-seven of strict social distancing. I only know this for sure because I checked my most recent Instagram post, which says that two days ago was day twenty-five. Today is Wednesday, April 8, 2020. I only know this because I checked my watch. The days feel long and short at the same time, and I’m not sure how that can be. There are many things I’m unsure of, these days; and I trust that we all feel that way to some extent. This pandemic has shattered our collective sense of normalcy and routine, as it’s disrupted weddings, graduations, proms, birthdays, and funerals—rituals that many people cannot fathom living without. I cannot go another day without confessing what I know to be true: it’s easy to live without those things when you have no choice.

At some point over the past twenty-seven days—they all blend together—I was talking to my friend, Liv, who was impacted by cancer. I hate how people use words like “fighting” or “beating” when putting verbs alongside a beast like cancer. Because no verb in any language can describe the deeply physical, emotional, and spiritual experience of being sick in that way. Sometimes when I imagine her being pulled from what was her happy and blessedly normal life, I see her being dragged into an arena, and cancer is not the lion—she is the lion—and cancer is this dark amorphous force that engulfs her body. I imagine that she roars, and her voice is so strong that I can see the sound released from every fiber of her being, and then watch as her very essence tangles with that darkness. Other times, I imagine her as she is in a photograph: dressed as Muhammad Ali, strutting down a hospital hallway, bald and in a mask, donning boxing gloves and a cape, staring down the camera. Everyone felt the need to reassure her that even without hair, she was beautiful. This pisses me off, because they all confront that photo with the unconscious premise that hair is a vital part of the human body, and my God, do they not notice the cape?

The Muhammad Ali quote that she boldly posts alongside that photo: “I hated every minute of training, but I said, ‘Don’t quit. Suffer now and live the rest of your life as a champion.’’

I turn to my conversations with Liv in the moments when I feel most defeated. She is one of my only friends my age who knows what it’s like to be chronically sick—sick in a way that doesn’t get better. Our diseases are extraordinarily different, but our shared experiences unite us in a unique bond. Today, I feel a humiliating level of defeat. And of course, it’s all rather absurd, because today isn’t different from any other day. The catalyst for my defeat: a bike ride to the mailbox at the end of my dirt road. I can’t put the words together to confess how difficult this exercise was for me. I’m just too disappointed in myself, and too ashamed. It’s only a mile to the mailbox and a mile back, but the road is hilly, and the terrain is rough. I’m grateful no one saw me. What had begun as a leisurely ride quickly became the most difficult exercise I’ve done in memory. I pushed myself way further than I should have, and my endurance was fueled by a profound anger towards my body’s many inadequacies. It was also fueled by the simple fact that I had no choice but to keep going; I needed to get home, and putting one foot in front of the other was the only way to get there (at that point I was walking alongside the damn bike). When I finally collapsed onto the living room floor, I Facetimed my family in Kalamazoo . . . their first reaction was to laugh. I don’t blame them for this, because I really did look pathetic, and it always takes people a minute to switch from the superficial observation, “Jess is horribly out of shape” to the more somber realization, “Jess is sick”. Nevertheless, I put on an almost childlike tantrum as I raged against my body. I said to my body, “You are weak, and pathetically inadequate. I’m ashamed to look at you in the mirror. Your scars are ugly. You are undesirable. No one likes you.” We all know the guilt and remorse felt after being mean to someone who doesn’t deserve it. My poor body. It has endured so much for me, more than most bodies endure, and I’m ashamed of it. I forget that it has made me a champion.

There was a brief period at the beginning of the pandemic when the chronically ill imagined that the rest of the world would finally understand what it’s like to be us. We saw people voice dismay over missed sports games, over canceled proms, and over abandoned vacation plans. We hoped their dismay would turn into empathy, and we waited for them to realize that the sacrifices being asked of them are sacrifices that we’ve had to make for years. It quickly became evident that such empathy could not be expected. We watched from afar as young people descended upon Florida beaches, as friends took advantage of cheap airline tickets, as communities gathered at packed bars, and as people selfishly hoarded toilet paper and hand sanitizer. They will never know what it’s like to be us.

I’ve heard all sorts of justifications for the social shenanigans plastered across our Facebook timelines and Instagram feeds. Mostly, people claim they deserve such festivity, and the use their feelings of “missing out” to rationalize having a good time. There’s the infamous youth on spring break who went viral for saying, “If I get Corona, I get Corona. I’m not going to let it interfere with me partying.” What it comes down to is this: people believe they are entitled to undisrupted lives. Our culture is based on comfort, indulgences, and personal gratification. For many, the mandated social restrictions have quickly become the worst thing to ever happen to them. If social distancing is the worst thing to happen to us by the time this is all over, we will be incredibly blessed.

I could say that I wish we lived in a world where bad things didn’t happen to good people and where life was fair. But I don’t wish that. Not even a little bit. Life is often ruthless, unpredictable, and unjust. When my complex autoimmune disease caused me to go deaf five days before starting college, I involuntarily put my life on hold to get Cochlear implants; and when I recovered from that I then faced a series of dangerous infections over the years, as all immunocompromised people are prone to do. Liv learned she had Leukemia while on a school trip and had to drop everything to return to California for life-saving treatment—a treatment that went on to cause its own disease. Years later, few of our past dreams or expectations for life turned to reality. None of this is fair. Bad things happen to good people. Good things happen to bad people. And we are better for it. Having our lives spontaneously disrupted proves to us that life is hard but reminds us that we can do hard things.

When I was fifteen—before I got sick—I encountered a proverb that fundamentally challenged how I viewed the world: “Tell me what you need, and I will tell you how to live without it.” Sometimes I find myself randomly reciting those words, as a reminder to reevaluate my values and priorities. It’s amazing what we can live without. As this global health crisis unfolds, we are all forced to question what is necessary, and to make the distinction between comfort and survival. I pray that on the other side, we can all call ourselves champions.

[epicfales]

The Triumph in NOT Graduating Today

In September of 2013, almost five years ago, I sat crying in my admission counselor’s office and decided to defer my education at Kalamazoo College. I had just gone deaf. I promised Suzanne, my admission counselor, that I would be back, and that she would see me graduate, and that it would all be worth it. Somewhere in the universe was my (then healthy) friend Olivia (who I hadn’t met yet), and she was embarking on a gap year adventure of her own, traveling the world. We didn’t know each other, then. Maybe in another universe we would have met sooner—maybe Olivia didn’t take a gap year, and maybe I didn’t go deaf, and maybe we both went on Land Sea (a wilderness orientation for incoming freshmen) in 2013 and became best friends. And maybe in another universe we both intentionally took a gap year and went on global adventures before starting college. And today in that other universe, on June 17, 2018, we are both graduating from Kalamazoo College. 

In case you’re reading this and don’t know anything about me and Olivia, neither of us are graduating from Kalamazoo College, today—at least, not in this universe. And I think, for both of us, on some level, this feels like some sort of failure. Olivia was diagnosed with Acute myeloid leukemia (AML) while on a backpacking trip in the summer of 2015. She had to put her education on hold. You can read more about her story, here: http://livfor.life/. My story is published on this blog, but I stopped writing at some point, and avoided updating people on my very personal reality. To summarize, I spontaneously left K in the summer of 2016, for reasons that I have trouble articulating. I tell people that I wanted to try art school, but looking back I think that was a decision I made after deciding to leave K. The reality was that I was becoming sicker—fall quarter of 2015 was rough, winter 2015 involved several experimental immunotherapy treatments, and spring 2016 felt like a sprint to some sort of imaginary finish line. I had one advisor tell me that I had virtually no chance of being successful in academia if I continued to miss school. It crushed me. My education was everything to me, but I couldn’t keep up the way I wanted to, and it made me feel as if I were failing. I have no doubt that leaving K was necessary. In the fall of 2016 I caught pneumonia, and between then and now I’ve coped with various infections and maladies that have made it incredibly difficult to be a student. I’m barreling through college, taking a semester at a time, and sometimes experiencing setbacks that never cease to humble me.  

Why am I now writing about all of this? Well, Olivia is back. I met Olivia in my Intro to Sociology and Anthropology course, and we bonded over our love for the outdoors. We had similar Osprey backpacks and similar bubbling personalities, and we connected. Our friendship evolved in the summer of 2016 when we found ourselves in hospital beds on opposite sides of the country—she in California, and I in Michigan. She was undergoing treatment for her cancer, and I was treating a minor case of Bell’s Palsy. It was 3:00 AM my time, and we texted for hours. We bonded over our mutual frustration with our bodies, and we discussed things larger than ourselves. It was beautiful. Our diseases are so different, but our experiences are not so different. We both felt nostalgia for the lives that might have been. We wondered (although not out loud) what those lives would have been like, if we would have been happier, etc. There’s a special kind of loneliness in being twenty-one years old, and being awake in a dark hospital room in the middle of the night. Talking to Olivia made it infinitely less lonely. My nurse came in to check on me, and he saw how happy I was. I could only smile with one side of my face, but my eyes lit up, and I felt a level of peace that somehow feels like a genuine gift from God.

  So, Olivia is here. It is my first time seeing her since she left K in 2015, and she came back for our class’s graduation. We woke up at 7:00 AM and went on a breakfast adventure. We had a super-soul conversation, which lasted several hours. We are both physically weak, though we’ve dealt with more physical stress than most people deal with in a lifetime. We compared pill boxes and medication side-effects, and we talked about our insecurities. Please understand, it’s almost impossible for sick people to have friends. Our friends are afraid of us, they are terrified of our lived experiences, and this makes it very difficult to have authentic relationships. Most people in their twenties do not want to talk about poop, or puss, or bones, or chemo, or health insurance, or living or dying. When two sick people come together, it’s a validation of our shared truths. We are both lonely, despite the fact that we are surrounded by people. We are scared. We are embarrassed. We feel shame for our bodies, and we feel vulnerable, even though we know that this is all beyond our control. It’s difficult, okay? And we rarely acknowledge how difficult it is. 

I don’t often talk about mental health, but I had a clinical nervous breakdown this past December. I was humiliated, and it felt like an out of body experience--pardon the cliche, but I snapped like a rubber band. However, the more I talked to people, the more I realized that I was fine—at least, that the emotional release I experienced was something that was valid, and very necessary. For people like me and Olivia, we are expected to be “inspirational.” We are beacons of light, and our positivity throughout increasingly dark experiences stirs something beautiful in others. Do you know how exhausting it is to be inspirational all the time? We are expected to take everything that comes, and to persevere with enthusiasm. People tell us we are strong, and damn right we are strong, but it isn’t like we have a choice. We endure, because we have no other option. You don’t see us raging at God, begging for mercy, crying, throwing up from pain. You don’t see our mothers worry about us, you don’t see them sacrificing everything for us, and you don’t see the toll our illnesses take on our families. Being sick is not glamorous. It’s ugly, and raw, and incredibly human. 

Both Olivia and I are the kind of people who believe in barreling through. We both immediately turned to blogging when our physical health began to spiral. We both put on tough faces, and insisted that we were fine. I asked Olivia why she felt like she needed to come to this graduation—I don’t want to be within a thousand miles of this graduation—and I think we both needed to sit and reflect, and try to cope with our present realities. There is a quote by Cheryl Strayed that I think is appropriate, here: “I'll never know, and neither will you, of the life you don't choose. We'll only know that whatever that sister life was, it was important and beautiful and not ours. It was the ghost ship that didn't carry us. There's nothing to do but salute it from the shore.” We sat in my air conditioned Subaru, looking out over the Kalamazoo skyline, and aptly saluted our sister lives. 

An interesting fact about Olivia and I is that even when sitting in a parked car, we both insist on keeping our seatbelts on. The physical trauma that our bodies have endured makes us feel perpetually unsafe. We talked about why this is. How could it be that our guts and souls felt so uneasy, even though our minds logically know that we are fine? I want to make a point about this, because this is what our lives are like on a good day. And this was a good day. This was my first time eating out since emergency surgery last Monday. Olivia flew across the country, and walked up several flights of stairs. This is as good as it gets. This is as close to “normal” as we get. And yet, we still feel uneasy. We still feel this dark cloud of danger and despair. It’s important to recognize that we don’t normally confront this cloud. No one wants us to confront this cloud. People want to hear about acute trauma, and tales of triumph—they don’t want to hear about the day-to-day lives of the chronically ill. And in so many ways, that invalidates our existence. The world goes on when we take our daily naps, and we feel as if we shouldn’t be napping, because we are twenty-three years old, and dammit, we should be doing stuff.  But we are doing stuff. Every day is a triumph for us. We get out of bed, and we take baby steps towards wellness.

When I first began this blog in 2012, I wanted it to be a tale of triumph and recovery. I wanted a beginning, middle, and end to my story. Now, in 2018, I realize that my disease isn’t something I can conquer and eradicate. No matter what happens, Olivia and I will always live with the threat of that dark cloud—we will always be at risk. In so many ways, this makes us angry. What is important is that we do not sit in this anger. We need to meet it, confront it, and give it a safe place in the back of our minds. Because without anger we wouldn’t have the capacity for compassion and forgiveness. We live in a world of people with complex stories, and we have nothing to gain from resenting those whose lives seem less troubled than ours. Today, we listen to our ex-classmates worry about the heat or the possibility of rain for graduation. To be honest, it feels exasperating. Healthy people are hard to be around, yes, but we cannot invalidate someone else’s genuine emotion. A quote from Brené Brown’s Rising Strong works well, here: 

“The opposite of scarcity is not abundance; the opposite of scarcity is simply enough. Empathy is not finite, and compassion is not a pizza with eight slices. When you practice empathy and compassion with someone, there is not less of these qualities to go around. There’s more. Love is the last thing we need to ration in this world. The refugee in Syria doesn’t benefit more if you conserve your kindness only for her and withhold it from your neighbor who’s going through a divorce. Yes, perspective is critical. But I’m a firm believer that complaining is okay as long as we piss and moan with a little perspective. Hurt is hurt, and every time we honor our own struggle and the struggles of others by responding with empathy and compassion, the healing that results affects all of us.”

I think, this is what it means to be triumphant. It does not matter that we are not walking across a stage, today. That life was not for us. It is a sister life, a ghost ship that we must wave to from the shore. 

On my way home from breakfast with Olivia, I listened to Oprah’s podcast where she interviews swimmer Diana Nyad, whose motto is “find a way.” I think this applies to not only us, but to all people. There is sublime beauty in endurance, in pushing our bodies past the realm of human possibility. For Diana Nyad, that meant swimming from Florida to Cuba. For Olivia and I, it means something different. Make no mistake, Oivia and I have stories of triumph, and so do you. They might not be the stories we wanted, but they are ours—singular and our own.

[epicfales]

Keep on keepin’ on

[epicfales]

[epicfales]

Thank you to my friend Thomas, who sent me this photo a year ago when I lost my hearing and began more intense treatment for my autoimmune disease. You can get through anything with this attitude. Remember who you are, and stay true to that no matter what you face. Somehow it works out.

[epicfales]

Sitting on the Rim: Insights From the Grand Canyon and the Mayo Clininc

Two weeks ago I was walking along the rim of the Grand Canyon. Most people would have been completely captivated by the scenery, but I was completely captivated by my fellow tourists. For example, there was one lady with two little dogs that she pushed around in a stroller. There was a family with a bunch of redheaded kids who reminded me of the Weasleys from Harry Potter. There were many people who didn’t speak English. This was all very interesting. I jotted down little details in my journal, trying to preserve these memories of strangers so that I could write about them later. There is certain energy in a place like this. I could tell that this place is powerful, and I wasn’t sure everyone was aware of the power. Many people ran from overlook to overlook in a hurry to snap photos with their ipads and cell phones. There were, however, some people who sat in silence and stared at the view for a while. These were the people worth wondering about…especially the woman who looked very sick. She sat there in silence and just took it all in. This is the sort of place that people want to see before they die.

I am thinking about this woman, now. She probably had bake sales at home to pay for chemotherapy, or other medical expenses. That frustrates me to think about—that some people have to hold spaghetti dinners in order to live. That doesn’t seem fair. Here I am at the Mayo Clinic, and I see her everywhere. There are hundreds of people just like her. I wonder how many bake sales were held throughout the world in order for them all to get here. I bet a lot of these people have been to the Grand Canyon.

I’ve talked about this before, but the Mayo Clinic always provides me with new perspective. I can reach out and touch a hundred people who are probably sicker than I am. At a restaurant last night, I saw a man with his family. He was bundled up in blankets, and looked like a corpse. I’ve never seen someone so close to death. He’s here because it’s his last hope. I don’t think many of us know what “last hope” means. It’s a challenging concept to wrap our heads around. I am a very hopeful person. I am sick, but I still see a life ahead of me full of opportunity, and I wonder what it feels like to no longer have that.

I frequently hear people casually say, “My life is over!”

Like that’s a phrase we can just casually throw around when we have a bunch of homework, or we go through a nasty breakup, or the weather is unfortunately dreary.

Perhaps the people who say this should sit on the rim of the Grand Canyon and take it all in.  

[epicfales]

Spilled Milk

I sometimes wonder if I live in two different worlds, because it seems impossible that eight-year-old boys can die of cancer while teenagers publicly agonize over homework and the weather. I temporarily allowed these worlds to coexist in my mind, but this didn’t last long. One cannot simply spend her days exposed to the various realities that exist in a hospital and simultaneously sympathize with the girl who complains about her chemistry teacher on the Internet. It is difficult to socialize on social media, which mostly deals with ordinary situations, while being aware of extraordinary circumstances.

Extraordinary circumstances make people uncomfortable. I recently read an article that questioned the ethics of tweeting a terminal illness. You have got to be fucking kidding me. Do you mean to tell me that those of us with maladies have to sit around and listen to people continuously bitch about the absolutely minuscule problems in their lives, and they can’t extend the same courtesy to those of us who are genuinely suffering?

This is when I got off of twitter. It is also when I started thinking about suffering.

My initial goal on twitter was to force people to see reason and to gain perspective. I would say, “You could lose both legs and an arm tomorrow and life would go on.”

And life would go on, but people don’t want to hear that. Pain is a highly individualized phenomenon and I cannot minimize anyone’s pain by forcing sad stories down their throats. Despite how I may feel, I cannot say that one person is more entitled to pain than the next person. I cannot tell someone who describes what she is feeling as the worst pain she’s ever felt that her pain is not substantial. Letting her know that things could be much worse does nothing to comfort her.

This is not to say that I do not find her misery somewhat annoying. I will admit that there are times when I hate everyone. I sit at my computer, pull my hair out, and scream, “YOU ARE ALL SO STUPID”.

There are people who have questioned my emotional and mental health because I am chronically ill. I find this mildly amusing and seriously annoying, because I believe that being sick has made me both mentally and emotionally superior to most. My disease has seriously weakened me in a number of ways, but in regards to my psychological situation, I am flourishing.

In fact, people with maladies are arguably the most psychologically healthy people I know. They are seriously enriched by their unfortunate circumstances, which I believe is the result of a profound level of acceptance. The emotionally unhealthy people are those who carry on as though things couldn’t possibly get any worse. I believe this mentality to be absolutely juvenile, and I am quick to sneer at it.

A week before I was supposed to start college I said, “At least things can’t possibly be worse than they were last year.”  Then I went deaf and my physical health began the downward spiral to where it is now.

I’ve grown a lot since then.

A few weeks ago, there was an old lady with cancer at the infusion clinic who occupied the room next to mine. She was accompanied by three of her closest friends, and they sat around drinking wine and telling stories while she received her chemotherapy. It was a party. This lady was pathologically positive.  Most of the sick people I know are like this. It has tormented me for a long time. Why on earth are these people so much happier than the rest of the world, when they are forced to endure awful situations? Why are they not entitled to personal pity parties on twitter? At what point did they stop wallowing in self-pity? At what point did I stop wallowing in self-pity? How many bad things have to happen to a girl before she realizes that things can always get worse?

Most people only understand bad circumstances to be those things that happen and then get better. To realize that things don’t necessarily have to get better is really empowering. At first it’s a blow, but with it comes a new understanding. I don’t get upset at the little things, anymore, which makes me genuinely happier. For example, it is impossible for me to get upset over spilled milk, now. However, sometimes I cannot help but to get annoyed at those who do. So it goes.

[epicfales]

Get a Grip

I want to talk about the most important day of my life: December 14, 2010. It was a Tuesday. I know it was a Tuesday because I came home from Colorado on Sunday, and on Monday we had a snow day. This was an ordinary day for fifteen-year-old Jessie, and it’s interesting that the only thing I remember from this day is my physics class. What the hell, right? I’m a high school graduate who has gone deaf and relearned how to hear (plus a crap ton of other stuff) and the most important moment of my life is a random Tuesday in my sophomore year of high school (and not even the whole day, just the physics class)?  Yeah, it is. This has been nagging at me for months, now. I’ve had to get out of bed in the middle of the night to write down bits and pieces of what I can remember, not exactly sure why I was remembering seemingly insignificant details; but if ideas wake you up in the middle of the night, you must write them down, and so I did.

On Tuesday December 14, 2010, Jessie Fales was a new woman. I walked into school feeling like the coolest shit. I even remember what I was wearing (because some girl made a comment about me trying too hard). I sported overpriced ripped jeans, converse high top sneakers, and an oversized red Copper Mountain hoodie to subtly brag that I had just ditched a week of school to ski in the mountains on a soul-searching adventure to find myself. I was a badass. I had something to prove. My biggest problem was homework, what I wanted more than anything was a boyfriend, and I longed to be extraordinary.

This day marks a crucial point in my existence. This is the last time I consciously remember being healthy before my gradual decline into the land of the malady. I had no idea what was coming, and so obviously it requires retrospective contemplation to appreciate why this was important. On December 14, 2010 I was a girl who got sick. Since then, I have been a girl who is sick. It’s taken me years to learn the difference.

I’ve been waiting for the appropriate time to write about this. I don’t just sit down and write blog posts—I wait for them to write themselves. I am mildly amused that it is now that I find myself so inspired, but it is fitting that I juxtapose this fifteen-year-old Jessie to the Jessie of this past week. This past week was absolutely the worst week of my life.

As I write this, I am sitting in a resort and spa somewhere in the middle of a desert in Arizona. My being here has a similar effect to plunging a burned hand into a bucket of ice water. This past week has been hell, and I am not writing this for sympathy, I am writing to let people know that realities such as mine exist, and that people suffer—I want to remember my suffering. Remarkably, pain cannot be described from memory, and so I am not exactly sure how I can possibly convey the essence of the past week.

Seven days ago I started my first series of intravenous immunoglobulin (IVIG), which is medically a shot in the dark, but I was optimistic going into it. So optimistic in fact, that I insisted on going to the ER to receive my first dose because the infusion clinic was closed due to a snowpocalypse bearing several feet of snow and sub-zero temperatures. The whole city was closed, and I wanted this drug more than anything. This was Monday afternoon. Twelve hours later I was back in the hospital and begging God for mercy; I’m not even sure how I feel about God on most days. Pain is interesting like that. It starts and you complain, and then it gets worse and you cry and scream, and then it escalates to the point where you can’t hold back your own vomit or make any sound because you feel as if your body is about to explode. At this point everything is internalized, because you can’t see or speak, you just feel the pain, and think to yourself over and over If there is a God in heaven, please stop this. Please, I beg you, I’ll do anything. There are six days of this, thankfully accompanied by morphine, and at the end I don’t remember the pain, and I’m left with a body pumped full of blood-product from thousands of donors who have no idea that I exist, but they might be changing my life, so good for them.

Seven days later, and my arms appear to suggest that I am a junkie. They are covered in bruises thanks to the countless needles that have been shoved into assorted veins for various reasons. My kidneys are infected, my eyes are infected, the infusion sites are infected, I’m dehydrated, I haven’t been able to eat a meal in a week, and I’m tired.

It is the tendency of modern medicine to encourage people to remain polite, and I am nothing if not polite when I make small talk with the plethora of nurses and doctors I encounter. Hospitals are familiar now, but in a way that makes me ask how the hell I got to where I am, which then makes me wonder who the hell I am. What is this sick body? Certainly it isn’t Jessie. But if it isn’t Jessie, then who is it? Who am I?  The nurse says, “This will only be a little poke.” and I bite the inside of my mouth until it bleeds, just in case the poke hurts more than she suggests, and it usually does, but I compliment her on her gentle hand, anyway.

This isn’t only my story. There are thousands of people who live in this other world, and they drag their pole of drugs to the bathroom, the same way I do. We are pumped full of chemicals that don’t make any sense, but we trust that smart people know what they are doing, and maybe this will be our ticket out of malady-land. We hug our nurses, because eventually they become familiar; and our stories are so similar that many would be quick to suggest that we are all in this together. The truth is, we have a lot in common, but we aren’t fighting the same battle. No one else can do this for us. In fact, while we are choking on our own pain and vomit, the last thing we contemplate is being some sort of courageous and gallant warrior. We aren’t heroic, we are just people who have been dealt a lousy hand, and who have no choice but to go forward and face whatever it is that comes next. Usually what comes next is completely unexpected, and to get to where we are, a lot of bad things have to happen.

Circling back to fifteen-year-old Jessie. She wanted more than anything to have her life be a story worth telling (if only she knew what was about to hit her). So many people sit around wishing for their lives to change, but do nothing to accomplish this. Life happened to me. Life happens to many people, and it is important to recognize that there is a lot of suffering in the world, and this suffering isn’t always evident. The one thing I admire about fifteen-year-old Jessie was her spontaneous decision to get on that plane to Colorado. Many people have suggested that living is more than breathing, and it is important to act while we can, because we never know when life will be out of our hands. I highly encourage you all to grab a hold of your life with both hands, if possible, and do whatever the hell you want with it. 

[epicfales]

Is Sound Made Beautiful When It Is Created, or When We Hear It?

I have to take my cochlear implant off in order to write this:

It’s been ten days since activation; evidently it has taken ten days for me to find words.

I know you've heard of the five stages of loss and grieving first described by Elizabeth Kuebler-Ross: denial, anger, bargaining, depression, and acceptance.  These are typically associated with people learning they have a terminal illness.  In recent years, some have tried to connect all or some of these stages to other major life-altering or bad events-- including having serious, but not terminal, medical conditions.  Regardless of whether or not these five stages have any role in people with chronic diseases, I think most would agree that anger is a human emotion that is commonly experienced when a person has a serious medical problem.  Over the past few years, as I've repeatedly dealt with everything that has been thrown at me, I have demonstrated a number of emotions.  These include frustration, sadness, fatigue, resilience, determination, optimism, and humor.  Not once though have I ever shown anger for what has happened. 

I have spent a great deal of time pondering these notions, with the belief that I had somehow transitioned from denial to acceptance while avoiding the other three stages of grief, entirely. This was an extraordinary error. Over the past several months I have undoubtedly been numb. This is to say I might have been subjected to a plethora of unpleasant thoughts and feelings, but I was not aware of them due to some subconscious barrier. This is a beautiful, but frightening thing. It has allowed me to withstand this time while feeling as little pain as possible. I have previously characterized this quality as being emotionally dishonest with myself. I have recently come to a different conclusion.

On Activation Day I was overwhelmed by profound feelings of relief. There are hundreds of videos on youtube that capture the first moments in which people experience sound. I have devoted countless hours to watching these, and you can imagine the suspense I felt as I waited to experience this for myself.  In many of the videos people are moved to tears. This is not because the sound is beautiful—if anything it sounds rather comical and weird—I believe, from my own experience, that people are moved to tears by their overwhelming sense of relief. It doesn’t matter what we hear, because hearing something is so incredibly powerful in itself. I remember learning about cochlear implants several years ago, and hating the idea that the sound is so robotic. Having now experienced deafness, I have quite a different perspective.

Had I been alone in those first moments in which I first experienced sound, I would have cried from the relief. Notably, I had decided beforehand that I would not cry during activation, because planning to cry involves high expectations and an overdramatic performance, usually for the sake of a camera. Hearing was so sudden that I temporarily lost track of all other senses and just focused on the experience. As I have said, the sound definitely was not beautiful, but that didn’t matter because it was sound. Hearing had me choking back tears, but this quickly turned to laughter, because holy shit, I was hearing.

Circling back to Kuebler-Ross and her stages of grief: I do not think I am somehow immune to anger, bargaining, or depression. Surely, I must have experienced these things, even if I did not realize it at the time. However, when my implant was turned on, I felt acceptance, accompanied by relief, which was such a divergence from whatever it was that I had previously felt; in turn, this made me acutely aware that whatever I had been feeling before was incredibly unpleasant, even if I had been numb to it.

This is what it is like to hear sound. You feel everything at once. 

[epicfales]

This is just me hearing with my implant. No biggie. (Happy dance!!!)

[epicfales]

Activation Day! A picture is worth a thousand words, which is good, because right now I’m speechless. FEEELINGSSSS

[epicfales]

With her permission, I am posting a paper that my lovely friend, Abigail wrote about me. She's 12. This left me incredibly humbled, and really just makes me feel that despite everything, I'm okay (or I will be, soon).

[epicfales]

A Letter From a Doctor

Dear Jessie Thank you for writing. Your wishes and desires are what they should be, and are the hopes of you, and your family and doctors. I appreciate you expressing them so well. I hope we can get the fire out. When a person has something like this, it is life changing, and there is no way around it. It changes how you look, and what you can do. It should not change the goodness and the warmth of your heart. None of us is going to be an Olympic athlete or an Einstein, but we should do what we can within our capabilities, and always work to stretch these, regardless of where we start from. And that starting point is different for everyone, and different at different points in life. While there are very many people who have their lives affected by chronic diseases, there is only one you, and no one else really knows what it is like to be you. You have been used to being “normal” growing up, but now your “normal” has changed. You are very lucky to have such a great family. It is also important for you to have contact with your friends. And despite everything, remain optimistic. Winston Churchill once responded when asked how he could be so optimistic when everything was going so poorly for Britain in World War II. He said “I am an optimist. I can’t see the sense of being anything else.” Sincerely, (You don't need to know his name to appreciate how beautifully kind it was for him to take the time to write such a thoughtful letter that includes nothing about science, medicine, or my disease. This is what makes an extraordinary doctor.)

[epicfales]

Deaf Means Different Things to Different People

The truth is, Deaf Jessie is different from Basic Jessie. The reason for this is I’ve heard sound for eighteen years and suddenly I can’t. I’m different. A cochlear implant means that I’ll be able to return to what is familiar: sound. Now to someone else, being deaf could feel just the opposite. Some people have only ever known what it’s like to be deaf, and so maybe hearing for them is just as alarming as silence was for me. This makes sense. I think we are afraid of what is different, and so maybe cochlear implants aren’t for everyone. What we need to understand is it’s a choice, and one that is highly individualized. Consider this, and respect it. Disregard everything you know about the world, and maybe you’ll understand that for someone who has never known sound, hearing is just as terrifying as going deaf. It’s change. And how do we know if change is good or bad? The thing is, change just takes time. And then it becomes normal. Silence isn’t so scary, anymore. Maybe it’s a little comforting. And now maybe I’m a little afraid to activate my implant, because that’s just another thing that changes everything.

The point I’m trying to make is that the world isn’t this flat place (there’s evidence to back me up, here). It has multiple dimensions, and infinite sides. There are many laws in the universe, but I don’t think anyone can speak with conviction and say what is normal. Because we are always changing, and so everyone is different, and we all have our own ways of perceiving the world. So the “Cochlear Implant Controversy” isn’t really a controversy: it’s just a bunch of people arguing the notion that their reality is “normal” and that nothing needs changed.

[epicfales]

This Will Seem Beautiful One Day

Being sick is complicated. I just spent a great deal of time trying to figure out how to introduce this blog post, and finally settled on “Being sick is complicated.”

I want to say, “Seriously, Universe?” plus a bad word that starts with the letter “F”, but that doesn’t really help.

I originally wrote this post explaining what happened to me, and how I ended up in the hospital this week. But being sick is about more than what happens to me. It’s about how I feel when I am stripped down to nothing when I lay down in a hospital bed, and how my body doesn’t even feel like my body anymore, so I don’t care that I haven’t shaved in a few days, and my toenails need cut. Those things don’t matter when I’m sick. Being sick means being very concerned for my body and therefore I don’t really think of myself. I don’t care who touches me. I don’t notice my nurse put an IV in. I don’t care about the 4 EKGs and an ECHO. Being sick makes me raw. Like when the doctor said, “Jessie, the more I learn about you, the more comfortable I am with you being in the hospital.” Again, I sure as hell didn’t see that one coming, but that’s normally how these things happen. They happen and they make me raw.

“It breaks my heart to see you back here, Jessie.”

“It’s okay. It happens.”

“Yeah, but to you. It happens to you.”

This doctor went on to explain the complicated diagnosis in as simple of a way as possible, “Who the F knows?”

I really like this doctor.

My heart rate has been a hot mess. I have chest pain. I’m eighteen. These things shouldn’t happen to people my age. We should be able to run across the driveway to get a lacrosse ball without blacking out. We should be in school, we should be able to hear, we should be able to do whatever we want to do, because being young is all about limitless potential, and we shouldn’t have bad things happen to us. Forgive me if that comes off as a sense of entitlement.

Being sick makes me want to watch Disney movies because l crave the warmth of a happy ending. Despite being locked in a tower her whole life, Repunzel broke free of all of that and discovered her new reality.

I’ve been dealt a crap load of new realities this year. I’m just waiting for the one that makes me feel like I’m going to live a happily ever after—like a freak’n Disney princess.

"One day, in retrospect, the years of struggle will strike you as the most beautiful."

[epicfales]

I am Going as a Deaf Girl for Halloween

Hi, my name is Jessie. Wait, there’s more…I’m deaf. Now at this point, usually one of two things happens. Option One: you awkwardly apologize, stop talking to me, and don’t make any further effort to communicate.  Option 2: you keep talking as if I hadn’t just told you I am deaf.

I’m just going to go out and say it: this “deaf thing” makes people uncomfortable, and they don’t know how to respond. I am acutely aware of people avoiding me—especially some of my closest friends. They ask, “What is it like talking to Deaf Jessie?” and say, “I am afraid that I won’t be good at being a deaf person’s friend.”

Okay, what is it like talking to Deaf Jessie? Dammit it is exactly like talking to normal Jessie, except it takes a little bit more work. Being Deaf Jessie’s friend is exactly the same as being normal Jessie’s friend because…wait for it…I am the same person I was two months ago. 

There have been very kind people in my life. After I went deaf these people immediately invited me over for dinner, and they were prepared with stacks of note cards, journals, white boards, and smiles. They explained that they were worried people would be afraid to visit with me. This was shocking at first. No, I thought, that can’t happen. People are better than that.

The reality is people are freak’n scared. I understand. I’m not bitter about it, because it makes sense.  It’s as if we are preprogramed to be uncomfortable around those who are different from us. Good for us.

To Hell with all of it. Just kidding. I will now explain my new reality.

I really hate that I have to use this show to explain my life, but here it goes. It isn’t scary to watch deaf people from the safety of a living room, and so somehow fear turns into curiosity, which eventually becomes amusement. Don’t get me started. In ABC Family’s Switched at Birth, the deaf character that I most relate to is Daphne. She wears a hearing aid, and is sometimes able to communicate with hearing people without using writing or ASL. I, like Daphne, wear a hearing aid, and I still choose to use my voice to communicate. Talking is scary. I can’t accurately sense how loud my voice is, and I have to trust that if I talk the same way I’ve been talking my whole life, it’ll somehow sound right. My hearing aid is turned up as loud as it can go. If you give me a hug you’ll likely hear high-pitched feedback, because I am pushing that thing to its limit (it’s dangerously close to spontaneously combusting). Wearing a hearing aid helps me be aware of my surroundings. I can’t make sense of sounds, but I can hear the difference between sound and no sound. I heavily rely on lip reading, but that doesn’t mean I can understand everything that is said. I can catch one or two words, and then I have to put the sentence together using their context. If I’m desperate, I always have a white board with me. Just yesterday, I had a nice conversation with door-to-door salesman, and he thoroughly enjoyed writing things down on my board, even though I didn’t buy his product. He liked the orange marker (yes, I have different colors).

In Daphne’s situation, even though she can seemingly hear and speak just fine, her family still signs for her. This is because Daphne is deaf. This show is surprising to some people because its characters don’t look or act the way deaf people are supposed to. What people need to understand is deaf people don’t fit into this mold that has somehow manifested in our society. I don’t talk the way a deaf person should talk. People are continually surprised by my ability to understand them. Newsflash: I’m still deaf.

Because I don’t fit into this mold, people are not sure how to respond (especially since I could hear them just a short while ago, and now I am telling them I can’t). Should they talk? Should they write things down? Should they run away in terror? My brain has to work its ass off to make sense of the world right now. If people write things down, it saves me a lot of energy and keeps me from getting frustrated. It has taken me seven weeks to muster the courage to walk into a Starbucks and order myself a coffee, because not only is communicating frustrating and exhausting, but it is also terrifying.

Happy Halloween. 

[epicfales]

Tiptoeing Into My Deaf Identity

I have a disability, but don’t you dare call me disabled.

Today (for the first time) I found myself on the other side of the deaf culture debate…you know, the deaf side. As a deaf person, I realized that I actually have the capacity to form an opinion, and it can’t be wrong because I am deaf, and so I can actually attest to what that means—no one can take that away from me. I am also someone who has just had a cochlear implant surgery, and so for the first time I am on the other side of THAT controversy—you know, as someone who actually has an implant. All of these new changes in my life have really been empowering, because now I have a voice that means something.

The first thing I noticed when I went deaf is that everyone had something to say about it. I do mean everyone. I also immediately realized that everyone had this newfound capacity to piss me off. Wait, that’s an understatement. When I first went deaf and was bombarded with the opinions of those who had no understanding of what it is like not to hear…well I wanted to rip their legs off. There, that sounds accurate.

I will never call a deaf person disabled, and if you call me disabled I will punch your nose into your face.

Side story:

A dear friend of mine is nine years old, and she wrote a paper about me in her fourth grade class. I am her hero. She was made fun of because her hero is “disabled”. That was the first time that word has ever been used to describe me, and it ate me alive.

I am not disabled, but I cannot deny that being deaf has made my life extremely challenging. While I have become confident enough to place my order in a coffee shop, I was almost hit by a car in a parking lot this morning because I didn’t hear it coming. I am not in school right now because of this sudden reality that has me living in a world of silence. It has been shocking, uncomfortable, and sometimes infuriating.

Let’s talk for a minute about the “Cochlear Implant Controversy”. I was not born deaf, and so I do think cochlear implants mean something very different to me than they do to those who have gone their whole lives without hearing. I do not think any deaf person should feel forced to receive an implant. I know I felt like I had no other option. I live in a hearing world—none of my friends or family know ASL, and I do not personally know anyone else who is deaf (I’ve met some cool people online, and they rock). A cochlear implant is my golden ticket to getting my life back. The same way I believe that no one should be told to get an implant, I believe that no one has any right to say a deaf person shouldn’t get one.

Today a hearing person described an implant as “a chunk of metal shoved into your skull”, and while I understand that she was speaking out to defend deaf people, I, a deaf person, have been greatly offended.

Hearing people have absolutely no right to speak negatively about cochlear implants. That “chunk of metal” in my skull is my miracle, and to speak against it is simply not okay. We live in a beautiful world, and I want to hear it. I am deaf, and I have a phenomenal gift that will allow me to pursue my limitless potential. I do not need hearing people to fight my battles for me, and I certainly do not need them to fight against me.

Another point I’d like to make is words like “deaf” and “disabled” are extremely personal. Only individuals can decide how those words relate to them. It is not within anyone’s rights to decide that someone is disabled, or that someone needs to be “cured”. Something I’d like to clarify about cochlear implants: they are not “cures”. A cochlear implant will help me hear the same way a prosthetic leg helps someone walk. The Dad admitted to me last night that The Family views this time (Jessie as a deaf girl) as a temporary inconvenience—it’s as though I broke my leg, and this is simply a time for healing and then everything will go back to normal. Oh, Dad. Bless his soul. He means well, he really does, but my cochlear implant will not fix my ear, it will provide me an entirely new way of hearing. I will always be deaf. When I go to bed at night, I will be Jessie, the deaf girl. In the morning I will be a deaf girl who can hear. This is how I choose to identify myself, and that is something only I can do. No one else can tell me who I am. Don't ever let someone tell you who you are. You are who you chose to be.