Tasia Rechisky

@tasia-rechisky | contributor
I am Tasia Rechisky, a 27-year-old professional living in Massachusetts. From the outside, I appear to be your average young adult, living the typical life, however, I have lived with your not-so-average rare fatty acid oxidation disorder called VLCAD (Very Long-Chain Acyl-CoA Dehydrogenase Deficiency) diagnosed at 6 months of age. As most commonly described, my body cannot convert certain fats to energy often leading to symptoms of muscle pain, low blood sugar, cardiomyopathy and lethargy. I am determined to make each day a lesson in patience and perspective, trying to master the balancing act of living with a chronic disorder, and sharing those lessons with others.
Tasia Rechisky

Learning to Love Your Body With Chronic Illness

We don’t exactly live in a society that makes it easy to love our bodies. Having a chronic illness, in which my body is a source of pain, fatigue and uncomfortable experiences, can make it even harder. Sometimes it feels as if I am in a repetitive struggle with my own body. Having a rare disorder, very long chain acyl-CoA dehydrogenase deficiency (VLCADD), a condition that prevents me from converting certain fats into energy, I have always had a tenuous relationship with food, exercise and what “being strong” really means. My disorder often makes it difficult to exercise, especially when I am struggling with muscle breakdown. My diet is a low-fat, heart-healthy diet, but when I am ill, since I cannot break down fat property, I must take in additional sugars and carbohydrates to stop my system from breaking down muscle and releasing the remnants into my bloodstream. It seems like every time I get back into exercising, moderately, but regularly, and eating a balanced diet, I become ill and must revert back to limited physical activity and carb-loading. The few pounds I may have managed to lose return. And more importantly, my feelings of strength diminish. As a generally active person who has trouble sitting still, my confidence wanes when I am limited in my activity, but it is what I must do to heal. Accepting that I sometimes have to do what is viewed as “unhealthy” to become healthy again can be difficult. Afterward, I am left rebuilding my muscles–sometimes starting where it seems I have left off. I lay up at night worried that my muscles will be permanently damaged or weakened by these episodes I have. I have always struggled and worked (almost obsessively hard) to not gain too much weight. During my teenage years, I was especially sensitive about it. Most of my friends had petite, athletic frames that were constantly able to be toned with their three-sports-per-year schedules. I was lucky if I could get through one sports season without a major incident. While they were all able to eat piles of french fries and mozzarella sticks, I was always scrambling to find something on the menu that wouldn’t make me sick (or didn’t and received the consequences). As I moved in to adulthood, many of my friends started on keto or full-fat diets, where carbs were “the devil.” I then had to move in to a new stage where I had to learn to explain how those diets would literally kill me without coming off as that obnoxious naysayer friend. While they were all comparing the menu for the lowest carb option, I am over in the corner grabbing a bagel and loading my Gatorade with extra fructose (fruit sugar) if I was not feeling well. I once took a class in college in which one of the topics explored was how food is both cultural and social in nature. At first, I was a little skeptical, but as we started discussing it more, I realized how much truth there was behind it. It had played out in different ways my entire life, even within the microcosm of my own family. I grew up in a family of chefs trained in traditional French cooking. Many of them love meats, sauces and butter — all the things which I could not eat. I was lucky though because my parents always took it as a challenge, creating lower-fat versions of their traditional favorites to share as a family, but regardless, the food you do (or do not eat), especially since food is such a social experience, can make you feel different. “It is always something.” That is perhaps one of the hardest parts of living with chronic illness. There are less days I feel amazing, where nothing hurts, than there are days where multiple body parts hurt. The worst days I actually feel like my body is running on empty (or below the empty line). Having to find ways to feed it and finding the exact balance of how much you can fit into the day without completely wrecking myself is in itself a full-time job. I often resent how much of my time and energy it takes away from other things in my life. I know it makes absolutely no sense at all, but when I do cave to the anger, I get angry at my body, for not holding up, for being dysfunctional or all-together broken, for not being stronger or for failing me. The worst part for me is that my body and my being often become intertwined, so I am essentially blaming my body and labeling myself as a failure, for my illness. I have grown a great deal in accepting my illness since learning this. I have had to learn that despite what anyone or anything says my worth is, it is more than how mentally or physically “strong” I can am at any given moment. What I give to the world is not measured in the inches of my waistline, the number of the times I go to gym,  the number of parties I am able to go to or the pounds I am able to lift. Regardless, those things, if and when I do them, should not be up to measure for anyone else but for me. When I look in the mirror I see all the imperfections. Now that is not meant to be a negative, but rather the opposite. I see every bump and bruise and extra pound or the dark circles under my eyes — and in that, I see the fight. Every day, when I look in the mirror, I don’t always see the skinniest, strongest, coolest person, but most days, I do see a person I can be proud of, who despite all the obstacles and limitations, has kept myself going and tried my best to also lift others up. Our worth comes from the moments in each day that we fight, that we wake up despite the pain and frustration and sense of defeat and live life to the best of our ability. On most days, our “living” probably looks a little, or maybe a lot different, but it is still living. It is a different kind of strength and love for one’s body and self. I know it may be cheesy, but one exercise that really helps me on a rough day or the end of bad episode is washing away the negativity, pain and anxiety–literally. After a painful visit to the doctor or a rough hospitalization, I stand in the shower and I try to imagine that all the hopelessness and unknowns I fear most are washed down my body and into the shower drain, so I can start anew. I scrub off the hospital tape “goo” and push forward to live another day my way, in my body.

Tasia Rechisky

On the Days You Feel Like Your Chronic Illness Has Won

Recently, I had to miss my dream vacation that I had been planning meticulously for months. I was so excited, getting everything in order at work and school, just looking forward to the adventure ahead. However, when it came time to actually go on the trip, I ended up sick and in the hospital. I had to make the excruciating choice to go, inevitably make myself worse, and end up in an Icelandic hospital — or postpone my trip. Just a few years ago, I would have chosen the former and pushed myself to destruction. I am proud of the decision I made not to go; it shows how much I have matured and how much more respect I hold for my health now more than ever. Even though I know it was the right decision, it does not make it any easier. I have missed out on my fair share of things living with a rare disease, very long chain acyl-CoA dehydrogenase deficiency (VLCADD). Over the years, I have gotten better at overcoming the disappointment, thinking of all the amazing things I have been blessed to do in life, and whispering to myself “next time.” However, missing out on these crucial moments, like a hand-crafted, once-in-a-lifetime adventure, can be soul-crushing. It hurts so much deep down in a place that is hard to pinpoint nonetheless describe. I try to do everything right, every second of every day. I try to control every factor. I take my medicine, stick to my diet, drink and eat enough, exercise, and get enough sleep. I subject myself to uncomfortable, inconvenient situations in the short-term so I can hopefully, in the longer-term, triumph. I do it for that one moment of freedom, standing on a mountaintop somewhere overlooking an amazing view and breathing the fresh air, reaffirming that all the effort was worth it. But sometimes, when that just doesn’t happen, it makes me wonder “Why even bother?” The weeks following my missed trip, I lounged around. It was all I could do because I was so ill, but part of me was hiding and grieving everything I was missing out on. Deep down, I was so happy for my friends who got to go, but I was temporarily slighted with both guilt and anger. Guilt that I had to miss out on the trip and precious time with them, and anger — envious they are healthy and got to go when I could not. I despise when those feelings overcome me. It makes me feel that I am prioritizing my own self-pity over my relationships, but sometimes it is inevitable. I have found the best approach is to just let the feelings come, talk about them as I can and then in due time, move past them. It is a constant struggle to swat away that annoying, overpowering voice in my head yelling, “There will be no next time! You are sick! You will never be able to do anything!” We all have those days where we feel like our chronic illness has won. I think one of the hardest parts is knowing it is not the last time; there will always be a next time. There will likely be another missed trip, but I don’t know when it will be or how to stop it. The anxiety is what eats away at me. Sometimes I am literally stopped in my tracks thinking about how it is possible I will miss, or have to suffer through my graduation, or even my own wedding because I am sick. But the way I always try to frame it, sometimes more successfully than others, is that there will always be a next time when it doesn’t happen. A morning when I wake up, bags packed and ready to go, and I get on that plane, off to the next adventure. Less than six months later, I went on an impromptu trip with a girlfriend to two different cities and had the trip of a lifetime. We ate, walked, talked, and drove our way through two cities we had never experienced. I am not going to tell you not to feel defeated. We are not super humans with emotions of steel (I can ensure you from someone who has tried, it is not a good idea). Feel defeated. Feel broken. Curse your illness and the world for a minute or two, but then breathe and start planning your comeback. Because everyone loves a comeback story.

Tasia Rechisky

My Response to the TSA Agent Who Called My Medication a Joke

I love to travel, but it can be very difficult process for me due to the medication I take for my rare disease. The medication is an oil that is transported in a large jug. To make it more complicated, I am on a medical trial, meaning the medication is not FDA-approved. I have to carry it on the plane with me since if my baggage was lost, I cannot just pick it up at the local pharmacy. Traveling gets more and more difficult as, understandably, security requirements get more rigorous at airports around the world. Airport security has always taken me longer to get through, but recently, it has become even more stressful. I recently went through an experience at airport security that exemplifies living with a rare disease, especially an invisible one. Foremost, I want to say how grateful I am for TSA personnel at airports and cannot imagine how much pressure they must be under on a daily basis. I am glad security is so rigorous and I know they are doing their job to keep everyone safe. I am sharing this experience not to criticize TSA or even this one man in particular, but rather to expose a greater example of living with a rare and chronic illness. I moved through security as I normally do, but as always, my medicine, along with my being and all my other personal items, needed to be searched and tested. My first reaction was to step to the side and not touch any of my belongings, as I have been told before. I knew it could take anywhere from five to 45 minutes so I just waited, watching as people passed me by, curiously looking on. One of the TSA agents said to me, “You know exactly what to do! You are so calm. You must do this a lot.” I laughed and said “I do!” Then, she turned her attention to the next person coming through the detector. While I was waiting, bubbling with excitement for my vacation that was a matter of hours away, I overheard one of the agents examining my medication bottle say, “What is this? For investigational use only?… What is this — a joke?” There were a lot of people whirling around and I don’t think he realized I was standing there, within earshot. At least I hoped not. At first, I was stewing. “A joke!” I thought “Don’t I wish it was joke? All the medications, hospitalizations, stress, pain… if only!” It took a few minutes, but I snapped myself out of it, cooling down. I learned long ago that the “what ifs” and the bitterness is a downward spiral that I need to stay above. When you struggle with illness, you build up these walls and a tough skin. If you crumbled every time someone did not understand or said a mean thing or you got sick, you would spend your life curled up in a ball. When something pierces through that wall, even just for a moment, especially something as little as an under-the-breath comment, it’s an odd feeling. I questioned, “Should I say something or should I let it go?” There are times to make a point, when it can actually make an impact, and there is a time to let things go. That moment, in airport security, with TSA agents trying to do their important jobs and travelers trying to get to their destinations, was not the time to make a scene, in my opinion. All I wanted to do was get on a plane, with my medicine in hand, to enjoy my vacation with college roommates and at that time, that was more important than proving a point that likely would not have even gotten through in that scenario. I just looked at all the TSA agents, smiled, even the man who had made the comment, and went on standing calmly out of the way. The best time to make a point and have people actually listen to me is not when I am enraged. If I am too overtaken by emotion, I cannot clearly get any point across, never mind reach someone. When the agent called my rare disease a joke, the second thing I felt, after de-escalating my initial shock and anger, was sadness. If I am being 100 percent honest, the comment made me more sad than it did angry. Yes, I was angry at the insensitivity, but my heart also sank when I heard the comment. I know it is often hard for people to understand what they cannot see or have not personally experienced, but when people say something so blatantly insensitive, it hurts. There is no other way to describe it; it just hurts. It was like all the effort I had put in, the years dedicated to managing my disorder, all the commitment and effort, was belittled to almost nothing in a matter of seconds. To me, that medication is my lifeline, not a joke, and it hard when others can’t understand that. Through my experience, I have come into my role as living as a rare disease advocate, finding so much personal growth in inspiring and teaching others, but it is also important for me to remember that I don’t always have to be a rare disease “warrior.” I aspire to be that strong person, a voice for the rare disease community and a lot of the time I am, but it is not a pressure I always need to put on myself. I can just be a person who gets a little sad when someone makes a snide comment. This experience speaks to a larger issue of society’s view toward illness and, just more generally, our ability to be empathetic. In the third stage of this experience, on my plane ride to my destination, I was able to think about it more objectively. My thoughts drifted toward a hope that that man, that man’s family member or someone else close to him never has to suffer from the pain or fear, but most prominently, the isolation, that comes with the diagnosis and symptoms of a serious, lifelong illness. I hope that they never have to feel singled-out and silly, the way he made me feel.   Isolation is one of the biggest social challenges people with illness face. When you are ill, and especially in a chronic or rare way when there are not many who share your experience, you may feel like you are in it alone and most of the time, you are. I am just going to come out and say it, people sometimes act weird around illness (this includes people who have struggled with illness! This is including myself.) It is like, when faced with someone else’s illness, we forget everything we know about it and would have wanted when we experienced it ourselves. We often don’t know what to say or do so we sometimes automatically distance ourselves. Healthy people over here  and sick people are over there, and once the sick people get better, they come back, out of a world all encompassed by their illness. It is the classic us versus them mentality that comes up time and time again in situations where we don’t understand each other or are different. But the crazy part is that we do understand. We have all been sick before or been in the inner circle or caretaker of someone who was ill. We can maybe not understand to the same extent as someone who has a rare or chronic illness, but the basic mental toll illness takes is universal. Even if it is “I had a cold,” I bet you remember what it felt like to feel miserable, not able to breathe or swallow, missing out on social events or feeling like you can’t keep up at work. For people with a chronic illness it is like that, but a lifetime of it and you never get “better.” For people with rare disease, it is like that, but it is not always known what to do to make it better. It is this distance we create that allows us, in a moment in time when we feel so far away from that person’s experience, that we feel OK laughing off someone else’s struggle. We might feel uncomfortable so instead of asking a question (for example, if the TSA agent would have just asked me what the medicine was for, I would have gladly shared the information with him) we laugh it off. With a rare disorder, I am constantly finding that fine line between my disorder being the most serious, life-or-death thing and being able to make light of the situation, for my own sanity. My illness brings about situations that I often have to laugh out loud at the ridiculousness (e.g getting the bomb squad called on me for trying to transport my medicine on a plane, people giving me weird stares for putting my medicine into drinks at restaurants, chugging gallons of Gatorade with added sugar, buying an ungodly amount of blender bottles and yogurt) or I would just lose it. It is OK to make light of illness when it is done out of respect, when you know it is what will make the person feel better. That is making light of something through knowledge, not ignorance, which is an important thing to remember when talking about illness, in general. However, this again is not to criticize because we have all done it at one point or another, not even thinking about the implication or the person’s feelings who really has to live that experience. It is not our struggle and therefore, it is easier to distance ourselves. It’s not our problem, right? Wrong. Because rare and chronic illness, along with a lot of other societal issues — healthcare, human rights, education, are not your issues or my issues, they are our issues. If we do not attack them together, put our heads together as to how to solve the problem or at least counteract the negative effects, then none of us benefit. As best said by my longtime doctor and friend (yes, when you have a chronic rare disorder, if you are lucky, your doctors become friends!), “I chose a career in medicine because unlike most jobs, when you and another person are on opposite sides, being a doctor it is all of us, banning together, against disease.” We want to hear your story. Become a Mighty contributor here . Thinkstock photo by BSPC

Tasia Rechisky

To Those Who Stand With Me as I Fight Against My Rare Disease

My chronic, rare disease is with me every day. There is not one day that I get to take a break and forget of its existence. It takes intense focus and stamina to fight an everyday battle, to manage the unmanageable and stay one step ahead of the unpredictable. Health always has to be the number one priority, with everything else falling in line behind it because without my health, I have nothing. It can be exhausting and extremely scary. I understand that for all of us, rare illness or not, the future is unknown. But for those of us living with a rare illness, the stability of that future is also unknown. I don’t know exactly what things like having children or old age looks like for me. I don’t know what the future regarding my medication or potential new therapies will be. There are limited resources, if any, to get the answer to these questions. I often question, “Is it even possible?” I was raised to believe that I could do anything I set my mind to and I truly believe that. I use that mindset to motivate myself every day to keep going despite the challenges. But living with a rare disease is a whole other matter not one only of the mind, but one of the body. It is hard to not let my mind wander to the idea that one day my luck and  my relatively good health will run out, and my body, which is missing key elements to survive, will give up on me. Everything is a big question I try not be concerned about – but naturally, I worry. It keeps me up every night and impacts every decision I make. Most days, I fight rare disease with no hesitation or sense of self-pity. But some days, it is just too much to even process: the pain becomes unbearable or my emotions of feeling useless take over. Sometimes both. Those days are the worst. Those days, having a rare disease overwhelms me and the anger comes pouring out, and sometimes to my own embarrassment, gets directed at you, the person standing by me. For this, I will never be able to apologize enough. Please know that I am never angry at you. I am angry at the situation and often, my inability to keep it all together. I am a perfectionist with a rare disease and that is not always a graceful combination. I always think that I should be able to handle everything seamlessly and when I can’t, it feels like a personal failure. None of this is to excuse my action, but to explain to you that I am aware of this flaw I have and reassure you that I work every day to not let having a rare disease turn me into a bitter person. Those of you who know me know that I am not easily angered person, but sometimes, as with all of us, we have our moments. I recognize that you are not just standing by me, but with me. You are fighting with me and know that I could not fight this fight without you. You are the reason I fight it with such vigor every day. Whether you are one of my fellow rare disease fighter or my unaffected friends and family, you are my strength. Thank you for understanding when I cannot be there, even if it is a special moment for you. It breaks my heart not to be there with you but I am always there in spirit. Thank you for adjusting the plans to accommodate me, whether it is where we go or how long we stay. I am so amazed to have someone in my life that helps me feel included. Thank you for staying with me while I am sick and in pain, even if you cannot do anything to make it go away. It is OK if you cannot think of anything to say. It is hard enough to be in pain, especially to have to go through it alone. Just you being there means the world to me. Thank you for reminding me that tomorrow is a new day and that yesterday’s pain will fade. Thank you for making me laugh and smile, when all I feel like doing is crying. Your words of reassurance and positive spirit are priceless. Thank you for never making me feel like the burden that my illness tries to convince me I am. I struggle every day to keep my confidence up. I often overcompensate, trying to prove to myself that I am independent, that I do not need anybody – but we all know that is not true. You remind me that we all need help sometimes. Thank you for not treating me like a patient, but like a person. The truth is, I do need you. Not in the sense that I need you to take care of me, but just to remind me why I work so hard to take care of myself and for the emotional support. And most importantly, thank you for staying. Despite the endless hospitalizations and medical treatments, the burst of anger and moods swings, the overanalyzing or incessant planning, you chose to stay when a lot of people left. I cannot promise that the it will always be easy to live a life with me, but what I can say is that I recognize your support. I will always try to ensure our moments of happiness, laughter and joy outweigh the negativity. I promise  I will always fight anything that tries to tear us down. And please, always know that you are the primary reason my fight against my rare disease has been a successful one. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: nd3000

Tasia Rechisky

Woman With a Chronic Illness Explains What Home Means to Her

From a young age, my parents made our home an oasis. My childhood house will always be a very special place to me, but it wasn’t so much the house itself. It’s what represented. It was a place of rest after an exhausting day of trying to maintain a happy demeanor through weakness and pain. Our walls were a judgment-free zone, where lying on the couch in a noticeably bad mood didn’t make me lazy or unfriendly. It was a sanctuary for healing when I felt broken and alone. A quote from one of my all-time favorite movies, “Under the Tuscan Sun,” sums it up perfectly: “What are four walls anyways? They are what they contain. The house protects the dreamer.” However, in their infinite wisdom, my parents never made our home a permanent escape. It wasn’t a place where I could hide or cower from the challenges of living with a chronic illness or just life in general. It wasn’t a place where the excuse of not participating would hold up. I was expected to engage fully, but when the day had been long and the world seemed cold, home was a place to rest and regain my strength for the battle ahead. It was a place where the oddities of living with a fatty acid oxidation disorder, such as drinking massive amounts of Gatorade and eating multiple doses of oil-infused yogurt wasn’t a spectacle. It was the one place in the world where those practices were considered normal with no additional explanation needed. Having a place where the ins and outs of my disorder were known by everyone was a relief. Outside my home, daily interactions about my disorder involved questions followed up by even more questions. Everyone and anyone had a standing invitation to our yearly Christmas Eve party, which is one of my favorite holiday traditions. As my parents often said, “It is a place for the people who do not have anywhere else to go because no one should have to be alone.” Our home was always filled with people — old and new friends and people with nothing and everything — who needed a place to laugh, smile, joke, eat and be surrounded by others who just “get it” and accept you, regardless of their circumstances. It is there that I learned one of the most important lessons of all: A home is meant to be shared. For this reason, especially since as I’ve gotten older, home has become increasingly more important to me. I’ve always found myself searching for a piece of it in almost every aspect of my life: my family, my friendships and relationships, my career, my hobbies and even down to the non-obvious things such as the clothes I wear and the words I speak. Eventually, I had to leave that original home to go to college and then for my first apartment of my own. But that feeling and yearning for home never left me. A home as warm and comforting as the one originally created for me was hard to come, but I wouldn’t settle for anything less. This led to me being heartbroken more often, and possibly more easily, because I seek out that deep part of “home” in everyone I meet and everywhere I go. Sometimes, it’s just not meant to be, which I tend to take way too personally. Not all people share my comfort level with complete, and sometimes overwhelming, transparency. It took me a long time to get this way myself, as I am sure anyone with a chronic illness can relate to. I can be self-conscious about it, but eventually I realized it’s a “human thing” to be messy, scary and complicated, not a “chronic illness thing.” There is no point in hiding that part of me from the world because it’s a part of me that will never go away, just like my illness is never going to go away. I often ask myself, “If someone doesn’t know about my illness, do they really know me?” The answer is always no. I agree that it can be hard to let people in, especially when you don’t know how they ‘ ll react, but it is better to have them know and walk away then have to hide a crucial part of yourself — at least you know the truth. At the end of the day, though, others have experienced different lives that have shifted their inclinations elsewhere. I accept that, but in first attempt, I always try to gain their trust, so they know it’s OK to share those messier parts with me. I don’t see these parts as flaws, but rather as triumphs — proof that a person has survived hard times. But in the end, there will always some who don’t want it to be found. I have learned, somewhat reluctantly, that I must accept that, too. Home isn’t always easy to find, and it is certainly not always easy to keep. How do you define home, never mind find it and make it last? To me, home isn’t necessarily so much about comfort, especially for those of us living with a chronic disorder, since the concepts of comfort or even stability may never be completely possible. However, I’ve realized that in no way means home is lost for us. I also discovered that home can never really be “found.” It must be built, rebuilt and patched up often — from within. Home is a real part of everyone and everything we come across, but it takes strength and dedication to seek it out because it isn’t easy work. And a lot of the time, it can be messy, scary and complicated due to the fact that it’s the one place you are vulnerable with your defenses down. For me, seeking home requires finding love from myself and others, even in the most bitter and angry parts of the soul. It’s accepting that my home may not be, now or ever, be picture perfect like something you would see in Traditional Home magazine, but that doesn’t mean it’s any less meaningful or beautiful. When the lights are dimmed, the gaze of the camera is turned and the expectations and commitments fade, the piece of home built within ourselves and how we share it with others is what’s left. Even though that part of me is flawed, unpolished and unpredictable and maybe even some days seemingly unpreventable, it’s the truest part of who I am. That is where I want people see me and love me because that is where, no matter what happens in life, I will always need to see and love myself. We want to hear your story. Become a Mighty contributor here . Lead photo by Thinkstock Images

Tasia Rechisky

How to Emotionally Heal With Fatty Acid Oxidation Disorder

Living with a chronic disorder, I taught myself to heal quickly. When my body aches and my head throbs, I take the medicine, rest, despite the boredom and restlessness, and use every ounce of willpower I have to just get better — nothing else matters. I have gotten really good at it to the point that sometimes it almost seems to be part of my essence, to heal, despite all odds. It is one aspect of my life that I have grown great confidence in, in a world and a body that often seems to be trying to tear me down. My past has included pain that clouded my mind to the point where my words and phrases did not make sense, but somehow, I found the strength to reach for the phone and call for help anyway. There have been times when I walked on my tiptoes to relieve a tiny bit of the discomfort that came in each step. To be honest, as someone who has a fatty acid oxidation disorder, there have been times during flare-ups and hospitalizations when I thought I was going to die, but I didn’t. This is not to scare anyone or hyperbolize. It is just my reality and I bear it. I learned that lesson long ago and now, most days, I do not waste time wishing my disorder away. It is part of my life and I will continue to bear it any day and every day if I have to because it means living. Living for and with the ones I love. My mentality steadfastly becomes, “Bring it, pain, I will win.” But then one day, as part of the growing up we all must do, a different kind of pain comes along, one very foreign and unfamiliar. It is not one of the head or the limbs, not one of bodily malfunction. A kind that no amount of wincing through the muscle cramps or deep breathing can lessen. It is no longer a pain that I can use my mind, my once most-powerful tool, to overcome. It is one of the heart. An unrecognizable beast. And it stopped me dead in my tracks, despite all the fighting I have done my entire life. I have literally fought my own body and won so I wonder, why is this breaking me? At first, I feel betrayed by myself. It is the type of pain that feels like a coalition of the world’s forces against me. A pain that I never wholly come back from. It leaves me changed. It is the type of pain that even though each and every one of us has felt it in some way or another, at that moment in time, I feel like I am the only one who understands how badly it aches, not in my flesh, but in my soul. At first, I tell myself to cope with this emotional hurt like I do the physical. Why can’t I just push through this like all the times before? My instinct is to beat myself up about it for many moments too long and tell myself that I can be better, stronger, and bigger than this. Why does this pain not trigger my instinct to fight, but rather makes me want to curl up in a ball and hide away? It is because this pain is not the same. Not at all. And it is not supposed to be. I can’t make the mistake of treating it the same. This is not a matter of urgency or necessity. There is no test that will measure my progress in “getting better.” There are no doctors in the world that can tell me how to manage this. With this pain, and this healing, it is my choice in when and how it is done. With this healing, it can be an actual process, not a mission, not a matter of pure survival. So this time, I do not do what I have become so accustom to. I must resist the urge to do what I do best: use the pain, the thing so awful and disruptive, and turn it into power, or at least not immediately. I take the time. I be gentle with myself and let myself feel this fully because for once, I can. I have that luxury this time. I cry into the pages of my favorite books and the lyrics of familiar melodies. I go out into a world of unknowns and come home feeling so hollow and directionless. I just rest in it. I think about it. I think about what it means. I think about it so much my head throbs, crawling into every dark corner of my mind to discover how I feel about it. I feel it so strongly that it hits me at my core. I ask everyone I know and trust, weep on their shoulders. I try not to be afraid of looking weak. I have my restless nights and exhausting days. I allow myself to be sad, scared, angry, and isolated, the feelings of the bittersweet spectrum. I do what I want, what I need. In this pain, and this healing, I have a choice. My opinion about how it feels can be heard and this time, that is what matters. It is brutal. And often I wish I could use something to numb, or at least, dull the pain, but I don’t. It is never worth it. It is always just a false, temporary retreat, leading me further from my intended path to real, everlasting truth. And even though I feel like it will never happen, it happens. There comes a day when I am not in a constant state of overwhelm at the existential crisis of it all. I just start to notice the little things again — the way the wind tickles the leaves on the trees, the pure and genuine smile of a child, the ability to talk and listen to a friend, or even a stranger, and learn something new. And then, even if slowly, the little things become the big things. I realize even though life is not perfect, and things almost never work out the way I expect and the confusion never quite completely goes away, I am not doomed. The truth of the situation is it is at our lowest point that we learn what we seek in this life, what truly can set us free and yes, what truly matters. And for the rest of our lives, we remember what lifted us up. Then one day, I look back and can say I not only fought for my body, but for, not against, my heart — and won. We want to hear your story. Become a Mighty contributor here .