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What Home Means to Me as a Person With a Chronic Illness

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 it 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 theyll 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.    

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The Art of Healing

Living with a chronic disorder, you teach yourself to heal quickly. When your body aches and your head throbs, you take the medicine, rest, despite the boredom and restlessness, and use every ounce of willpower you have to just get better—nothing else matters. You get really good at it to the point that sometimes it almost seems to be part of your essence, to heal, despite all odds. It is one aspect of your life that you grow great confidence in, in a world and a body that is often trying to tear you down. Your past has been filled with pain that clouds your mind to the point where your words and phrases do not make sense, but somehow, you find the strength to reach for the phone and call for help anyways. There have been times when you walk on your tiptoes to relieve a tiny bit of the discomfort that comes in each step. To be blunt, there have been times when you thought you were going to die, but you didn’t. This is not to scare anyone or hyperbolize. It is just your reality and you bear it. You learned that lesson long ago and now, most days, you do not waste time wishing it away. It is your life and you will continue to bear it any day and every day if you have to because it means living. Living for and with the ones you love. You 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 you can use your mind, your once most powerful tool, to overcome. It is one of the heart. An unrecognizable beast. And it will stop you dead in your tracks, despite all the fighting you have done your entire life. You have literally fought your own body and won so then once you are able to catch your breath, you wonder, why is this breaking me? You feel betrayed by yourself. It is the type of pain that feels like a coalition of the world’s forces against you, that you never wholly come back from. It leaves you 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, you feel like you are the only one who understands how badly it aches, not in your flesh, but in your soul.

At first, you tell yourself to cope with this emotional hurt like you do the physical. Why can’t you just push through this like all the times before? And if you are anything like me, you will beat yourself up about it for many moments too long. If you are anything like me, you will tell yourself that you can be better, stronger, bigger than this. Why does this pain not trigger your instinct to fight, but rather makes you 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. Don’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 your progress in “getting better.” There are no doctors in the world that can tell you how to manage this. With this pain, and this healing, it is your 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, my dear, do not do what you have become so accustom to. Do not do what you do best- use the pain, the thing so awful and disruptive, and turn it into power, or at least not immediately. Take the time. Just be gentle with yourself and let yourself feel this fully because for once, you can. You have that luxury this time. Cry into the pages of your favorite books and the lyrics of familiar melodies. Go out into a world of unknowns and come home feeling so hollow and directionless. Just rest in it. Think about it. Think about you. Think about what it means. Think about it so much your head throbs, crawling into every dark corner of your mind to discover how you feel about it.  Feel it so strongly it hits you at your core. Ask everyone you know and trust, weep on their shoulder. Do not be afraid of looking weak. Have your restless nights and exhausting days. Allow yourself to be sad, scared, angry, and isolated; they are all the feelings of the bittersweet spectrum. Do what you want, what you need. In this pain, and this healing, you have a choice. Your opinion about how it feels can be heard and this time, nothing else matters.

It will be brutal. And often you will wish you could use something to numb, or at least, dull the pain, but don’t. It is never worth it. It is always just a false, temporary retreat, leading you further from your intended path to real, everlasting truth. And even though you feel like it will never happen, it will happen.  There will come a day when you are not in a constant state of overwhelm at the existential crisis of it all.  You will 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 will become the big things. You will realize even though life is not perfect, and things almost never work out the way you expect and the confusion never quite completely goes away, you are 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, you will be able to look back and say you not only fought for your body, but for, not against, your heart—and won.

Flipping Guilt

For as long as I can remember, I have felt an immense amount of guilt. It is something that took me a while to figure out- that it was the emotion I was even feeling. It has no logic, but I feel guilty for having a chronic disorder. In certain moments, I feel its insurmountable weight on my chest. I have felt like a burden to those around me, for the trouble or the extra effort they must endure to be my friend, family, acquaintance, etc.

Recently, during these turbulent and confusing times in my life, I have been trying to evaluate why I feel of all the emotions, not anger or sadness, but guilt.  As a logical and practical person, that most would say I am, it makes no sense. I did not ask to have for a chronic disorder. I do not play into my disorder as a handicap for attention– frankly the opposite; I often shy away from acknowledging it as anything but “the way things are” and do not ask for help, even when I need it. I have this constant need to prove myself that I can do “it,” whatever “it” is, despite my disorder. Much of my life has been dedicated to trying to make up for that burden I feel like I have caused to the world.

Most of the emotions of living with a chronic disorder come in stages. I have been through my stages of naiveté, denial, anger, empowerment, and confusion, but guilt is probably the most constant. Especially in this generation, living with a disorder or disease, is not about quietly dealing with it, within the confines of your own life, home and mind. In essence, it is because at the end of the day YOU are the one living through it, but now the management and explanation of illness is so much more complex. It involves so many more external influences. There are multiple doctors and other healthcare workers involved, employer issues and workplace rights to deal with, social implications and varying streams of media of what it is “supposed to” look like living a life with a disorder.

Media naturally turns everything into a phenomenon, Facebook and Twitter say everything needs to be documented. Movies, TV and other forms of media always show illness as being the center of life; illness is what gets us jobs, nope just kidding, makes it so we cannot work, leads us to love, oh wait…no, makes us so emotionally damaged that we can never fall in love, etc. It is not OK for anything, especially something as tragic as illness, to just be, not for even a second.It is true that illness affects every part of my life, but it is still an influence, not the basis. So my fight has always been trying to underwhelm the overwhelming, within my own head and others perceptions.

I realized, for so long I was trying to be “Tasia- the chronic disease warrior,” and not just coming to terms with “Tasia- the person.” Who is that person? Do I like her? Am I proud of her?  I made up for my guilt by trying to be everyone’s everything—the best family member, the best friend, the best employee, the best student, the best partner, the best person in every and all scenarios. Let me tell you…that is not a possible amount of pressure for one person to handle. But what about being my own everything? I forgot that there is a time and a place when that is all I need to be and that is OK.

Despite my guilt’s profound negative impacts it has on my life, it also is part of my world view. It will never leave me.  Guilt, in its own way, stems from a place of love- a sensitivity (yes maybe a hyper-sensitivity) to how my actions affect others. As much as a chronic illness should not define you, it is intrinsically, and inerasably, part of who I am. The guilt associated with it is also so, but I have come to accept that. I am developing way to use that guilt for more productive means. Other than just a restraint to hold me back, I use it as a means to open my eyes things I may not have otherwise seen. It has helped me look at the world the way I would look at myself, knowing what I have been through- with kind, forgiving eyes, often looking past first impressions or surface flaws.

What WILL you do?

As many people with chronic disorders, I spent most of my life focusing on how to feel better, just trying to lead a somewhat normal life. I did not have much extra time to explore my interests in depth the way most people do. During sports, I was always focused on monitoring my exertion level. During biology class, I was trying to digest the material as quickly as possible and finish all the paperwork, in case I need to miss school due to illness. I did everything I could just to be able to do the things in the first place, and could never really take the time to digest what I was doing. As I work my way through my adult years, I often find myself in a state of confusion. I often feel like I am not living out my purpose, or what I was meant to do, but rather just going through the motions. It is ever-present in my life-career, interests, friendships, etc. Recently, I am trying to become more conscientious of my feelings toward things and allow myself the time to seek out new opportunities without putting too much pressure on myself to find an answer. Let me tell you, as a results-based person, that can be extremely difficult.

However, one thing I have learned in this past year, in my transition from college to the “real world” is despite what I do, I know that I can do whatever I need to do. I may not know if I want to be a doctor or an astronaut or a teacher (these are exaggerations of course), but I do have the confidence that whatever paths (and I use the plural here purposefully because it will probably be many!) I pursue, I will prosper. VLCAD, unlike any other preparation, has given me a unique ability to, as some say, “fake it until you make it,” or what I would just call adapt to sometimes very odd and uncomfortable situations. Whatever the world has in store for me, and I may not like it, I may in fact hate it and be angry or sad or confused by it, I will face it. I will face it head on.

I will face it for the simple fact that it is my life. My life. My responsibility, and what I slowly realize, my honor, to take part in. Hope is an amazing tool. It makes the task seem less daunting. But the true driver is will. Just like those personality tests that tell you where you get your energy from determines if you are an introvert or an extrovert, I think of will similarly. We all have a will, even if it is buried deep down inside, but we each bring it out in our own way, in our own time. As we all know, our will can often get beaten down. Sometimes, we often feel like we just want to curl up in a ball and give up. But if we know where our will stems from, we can find our way back to it.

My will has always come from other people. Now some may say, “well that is silly, how can will, which is supposed to be internal, come from the outside?” My answer: When I get to that point, which we all do sometimes of just wanting to throw in the towel, I remember other people and the impact I can have on them. On my bad days, obviously I often think of my closest relations of family and friends, but for me sometimes it can even be strangers. Sometimes, particularly strangers. I think “what can I do or will I do to help that person?” I have a will to live so that I can personally be here to help make the world around me a better place. I am not naïve to the fact that I may never solve some large-scale social problems, but even if it a smile or a laugh from a person who was previously having a really bad day, to me, that is a success. And what is life really if it not just counting all our small successes? #vlcadprobs

What “Rare” Means to Me?

In celebration of Rare Disease Day yesterday 2/28, I thought I would write a short post about what having a “rare” disorder means to me. In my earlier years, having a rare disease was nothing but an utter inconvenience. “Rare,” I thought, was just a less cool word for unique. I thought it implied negativity.
However, after many years of actually living with my disorder, as our love-hate relationship played out before me, I realized that “rare” does not need to be negative. Being a rarity myself has given me a keen eye for other rare things and that in of itself is beautiful. I no longer see the world as simply a collection of black-and-white, cookie-cutter pieces that need to be kept in their place, but rather, a collage of mismatching parts that somehow work together. Life is not perfect. People are not perfect. And how absolutely boring that would be if it were the case!
Not everything has an immediate function, purpose or reason. But often times we just need to put our trust in something that it will work out and then the function, purpose or reason comes to the surface later. That is what I had to do with my disorder. I did not want it and I did not like it. I did not understand why, of all the people and places and things in the world that I had to be the “rare” one. It did not seem like any sort of blessing at the time, but actually a curse. In my darkest time, I had no choice but to just put my faith in the fact that this disorder has some rhyme or reason and that it would come to me at a later time, when I most needed it.
I passed through childhood and adolescence and the disorder seemed to get harder. I just felt different and often times, that meant feeling weird. I looked at others; all I saw was how flawless they were and how flawed I seem to be in comparison. But then one day, and I honestly cannot pinpoint when this one day was, I started to really look at what makes up the world. I started to look closely at all the parts and pieces and what I saw was not perfection, but imperfection. A person who loves themselves or loves another despite society’s label of being broken or abnormal. Because what does “normal” really mean? Well no one really knows…so you should make up your own mind about what you want to be. Don’t try to fit the mold. Don’t let anyone tell you that “rare” means “weird.” It means beautiful.
Flaws may not actually be flaws at all, but as something of beauty. See your flaws in a new light. #Raredoesnotmeanweird #VLCADprobs

A New Hope in the Future of Metabolic Medicine

Last week, I had the opportunity to speak at Boston University’s (coincidentally my alma mater) Medical School in a graduate-level biochemistry class about living with VLCAD. My metabolic specialist, since six month of age, invited me to be part of his guest lecture on fatty acid oxidation disorders. He explained that students retain the technical information better when they understand the human-side of the biology. It becomes about more than just enzymes and metabolic chains, but about people. He has also dedicated a portion of his busy career to spreading awareness and educating doctors, current and future, about fatty acid oxidation disorders.

Recently, he told me there are only 95 metabolic specialists in the country. With the increase of cases in fatty acid oxidation disorders increasing significantly faster than the influx of people into the field, he has been trying vigorously to recruit medical students into the specialty. He also educates those who will be going into other areas of medicine to boost awareness of the patients, their symptoms and treatment that leads to healthier lifestyles. Honestly, I cannot think of anyone better to do this; I was so honored to be a part of it, even if just in a minor way. He has been the most amazing doctor—always knowledgeable, on the cutting-edge of medicine, but with a kind heart and impeccable bedside manner. As I told the students in the lecture, he was patient with me, even when it was probably unbelievably frustrating. Even when I was sick, but too young and reckless to listen to his advice, he was patient. He was not only a doctor who provided the best care, but with his guidance, I learned how to manage my disorder. As those with chronic disorders know, it is about more than one-time treatment, but learning how to live a happy life despite illness.

Looking out into the audience, I saw students my own age looking back at me, which was surreal in itself. But these students listened attentively. I saw not necessarily the stereotypical students, but the future researchers and doctors of the world. The memory of their faces gives me great hope. Despite my speech which I am sure got convoluted at times, there was not one interruption and all I could see were faces of genuine interest. With my speech going longer than expected, there was no time for Q&A in the lecture. However after, instead of rushing out after class ended (which I probably would have done in many of my college classes), they stuck around on their own time to ask me questions. Not only questions, but great questions that you could tell were truly to enhance their learning “How does alcohol intake affect your disorder? Why would you take oil for medicine? What do you find works best to help you feel better during times of illness?”

One girl came up to me and said “Thank you so much for being here. We are in-between exams right now and it has been a really stressful time. Listening to you speak reminds a lot of us why were are going through all of this.” Their questions and enthusiasm was truly inspiring. If these students are a glimpse into the future of medicine, it gives me such tremendous hope for not only my future, but the future of others who will suffer from fatty acid oxidation disorders and other chronic disorders. It gives me hope that the medical community will continue to grow and gain more knowledge on how to help those with fatty acid oxidation disorders live healthier and even more productive lives. I hope my contribution to these students’ education was that to be not just a good doctor, but a great doctor, one has to understand not only the physical side of their patient’s battle, but the emotional one as well. That is something I always had in a doctor, which was especially crucial through childhood and adolescence. It allowed me to be where I am today. I have not only thrived physically, but learned how to cope, which was a crucial part of improving my quality of life. I need to thank my doctor for not only saving my life, but helping me live my life to its fullest potential. #VLCADprobs