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Finding the Bright Side of My Dark Times With an Undiagnosed, Rare Disease

Twenty-one years. More specifically almost 22. For almost 22 years I have been living with various conditions, some rare and undiagnosed, and some a little more common and treatable. I have been living life to the fullest, but also with arthritis throughout my body, an inoperable L5-S1 herniated disk in my back, depression, anxiety, bipolar disorder, chronic pain, and most importantly, an undiagnosed never-before-seen disorder which has caused my right leg and foot to enlarge itself with hard fatty tissues, masses etc. This is my story up to now.

I’ve been lucky enough to have grown up with such a loving and dedicated family. My parents have also been dealing with my struggles from the moment I was born. My mother always says she may not feel my exact pain and struggles, but she feels them in her heart. I’ve spent so much time in hospitals for surgeries and procedures, in doctors’ offices, but I still cannot fathom how much time I have lost to that. Starting at a young age, doctors worked hastily to try to slow down the growth of my right leg. The first surgery I had I wasn’t even 6 months old yet, but somehow the doctors continued to persist throughout time.

These are memories I don’t recall, but there are the ones I do. Some of my earliest memories are of me post-surgery. One of my first ones I believe was around the age of 3, lying in a hospital crib crying because the pain was so incredible. During this period of my life they continued to try and manage the growth of my leg, but had also started amputating my toes which grew similar to that of someone who has macrodactyly. Things start to get a little fuzzy at this point in my life, as I have lost most of my positive memories. I frequently get upset that I cannot remember much of my childhood, except the grave things. In the coming years I had similar surgeries that left me with only one toe, specifically my big one.

However, when I was 9 my life started to change. Up until this past summer, my surgery in the third grade was the last one I accepted to do. I can’t exactly recall all of the specifics of the procedures, but in short I know they attempted to do a large amount of liposuction (which failed), and an extension of my heel cord as my heel has never touched the ground. I ended up having to stay in the children’s hospital for quite some time to recuperate. Although it was nearly 13 years ago, it’s as if I can almost remember every moment of that time period. I remember watching the same movie on the Disney Channel every night because I couldn’t sleep. I remember how violently ill I was from the amount of heavy-duty painkillers they gave to such a young girl. I remember crying to my mom about the doctors taking away my “piggy toe,” leaving me with one last toe, and the phantom pain that ensued. But of course, I especially remember the horrific pain I had to endure at such a young age. After a time, I got to go home. Following these moments, I am always so glad to be back at last at such a familiar place where I know there is comfort and love, especially after my last procedure and hospital/rehab stay this summer.

Following all of this I believe I started to develop depression, anxiety, and bipolar disorder (and I’m pretty sure a hint of PTSD from the trauma I have endured and continue to endure). For a 9-year-old child to endure all I have endured undoubtedly takes a toll on the brain. To this day, I still am affected by my mental illnesses but I don’t allow them to control me (as best as I can). Around the age of 13 or 14 my anxiety truly started to set in. I can clearly remember the first day I had a panic attack. It was at night and I was laying in my bed unable to sleep. I started to hyperventilate, have heart palpations, and just generally “freak out.” At the time I had no clue what was happening. I remember calling out for my mom who in turn almost started freaking out herself. These panic attacks went on for months, and always at night. My parents would have to take me on drives around the town and through the city to try and calm me down, but nothing really helped until I started taking anxiety medication. I continue to have panic attacks, but not as bad as they used to be as I’ve developed my own ways of controlling them with and without medicine.

Throughout my teenage years, my anxiety endured and I began to develop depression. Again around the approximate age of 13-14 my depression began to come at me full swing. Being in my early teens, going to middle school, battling all my bullies at school, and dealing with my physical issues undoubtedly had an effect on my mental health as well. Around this age is when I started to self-harm. I still have the scars of my worst and even less noticeable injuries. Unfortunately I do continue to self-harm from time to time, but I am in a period of having not done it for a few months. My depression makes me feel worthless, down, physically and emotionally exhausted among many other things. But my way of dealing with all of this was becoming reclusive, drastically changing my style, and of course, the self-harm. When I hit high school in ninth grade, I still struggled with a similar amount of depression as I did in middle school, however, at this time I began experimenting with drugs and occasionally took more of my anxiety medication than I was supposed to, or completely stopped taking my meds without anyone knowing.

In high school all I wanted was to stop being bullied (as I had been my whole life) and to fit in. I tried to get in with the “cool crowd,” who were into substance abuse, bad behavior, etc. My grades started to slip just a little, I tried a couple different drugs such as marijuana, ecstasy etc. My best friends, and teachers I was close to, began to notice a difference in me. It didn’t take long for me to straighten out though, after hearing the concern of those around me who truly cared. I began to clean up my act after several concerned friends and teachers intervened. I realized that my behaviors at that point were not truly my own. I ended that school year with tremendous grades and a better outlook on life.

Most of the rest of my high school years, until senior year are a blur. I do recall some bullying, but things seemed to be running smoothly in my life. However, when I hit senior year everything began to change. At the start of the year my pain became increasingly worse leading me to be in a wheelchair for the third of the year I actually was able to go to school, and up until now. Most of my time was spent in bed crying because my pain had become so horrendous. Around this time I realized not only my leg, foot and back were hurting, but my whole body began to hurt. I can only imagine how increasingly overwhelming this was for my parents and family. The way things started to go throughout my senior year health-wise led up to what I am dealing with now. I saw many doctors during this time, but to no avail; they had no idea what to do with me, and still don’t. Surprisingly, having missed two-thirds of my final year of school, I graduated. I decided I was going to try and go to art school, one that was not too far away from home if any issues occurred. Unfortunately, my very high GPA (3.76 to be exact), dropped to a 3.4, but I am more than grateful I graduated the year I was supposed to.

College was not a very enjoyable time for me. I fell into a deep depression because of the huge life changes I endured the previous year as well as moving to a different place, living on my own, etc. I tried my best to succeed, but it didn’t go as intended. I missed a lot of classes because of my pain as I had to walk a few blocks to campus each day, and dealing with my mental demons was not a great help either. I wish I could’ve finished going to college, but I had to drop out one semester before the end of my first year. This still haunts me, plagues me. Fighting with the demons in my head is rough and especially with the subject of dropping out of college. However, I was happy to go home and be in a familiar and comfortable place during this rough period.

Not much has happened since then, other than a month long hospital and rehab stay for a bone infection in my enlarged foot due a chronic foot wound this past summer. This is when we fast forward to now. Every day I am in constant pain; my leg swells, my body aches, I battle with my mental illnesses, etc. However, I believe there there will always be a bright side to your dark ones. Despite not being able to work a conventional job, I work as an artist at a wonderful arts center here in Reading, Pennsylvania called the Goggleworks Center for the Arts. I do everything from painting to printmaking, photography, jewelry and more. I spend a few hours out of my week there to escape and create because for me, art is my greatest therapy. I aspire to someday provoke (in a positive manner) the world with my creations. I have been featured in various shows since my beginnings at the Goggleworks. A lot of my work centers around the previously stated things I have been through and continue to go through. Along with this I spend most of my time at home being with my family and friends. I also am a huge music enthusiast and love learning new instruments and playing the ones I already know. I have a wonderful family, a wonderful best friend, and a wonderful boyfriend. All the people closest to me in life are the most understanding and empathetic people I know and I do not believe I could have made it this far without them.

If you’re reading this, you may be wondering why I’ve decided to share my life story with you. I’ve written this piece because living through the things I have makes me want to share my story with the world. Everyone experiences different things with their illnesses, disabilities, etc. but I believe we can all find some kind of common ground. Some people may feel alone, or scared. I want you to know that you are not alone, and being scared is OK. I quite often, feel alone and scared, but I also believe everything happens for a reason. There is some reason in the cosmos that I have been born the way I am. I may not know yet, but someday all the pieces of the puzzle will fall together and I will understand my reasons.

I want anyone reading this to know that you are a special being. You have your struggles, yes, but inside is an amazing human who can do anything they put their heart into. I want you to know that I believe in you, even if I don’t know you. I have faith in you. And if I can make it as far as I have, I believe you can too.

Read more on Maison’s blog.

Getty image by M-Gucci.