My Story

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Juli
17
Ohio

Note: This was originally written in July 2005 when I was 17 years old and had just graduated from high school.

I was a fairly normal kid for most of my childhood. By normal I mean healthy, rambunctious, and everything else you would expect from a child. I was "full of life", as my parents always say. Nothing could stop me. All I did was go go go. It wasn't until later that my life began to change.

I was in eighth grade when my health started to noticeably deteriorate (although, we can pretty much trace my symptoms back to infancy now). Soon after, I began fainting frequently, having seizures, experiencing memory loss and concentration problems, and was always fatigued. I would come home from school and not have the energy to do anything but sleep. I wasn't able to do much because even the least strenuous activities took a major toll on my body. I had to ration my energy and carefully choose how I was going to spend it each day. This meant no more regular get-togethers with friends, using every bit of energy I had to complete homework, and worst of all, giving up my beloved sport of soccer.

My life had suddenly come to a screeching halt. I was very unhappy and extremely disappointed with the whole situation. The most horrible and discouraging part was that my doctors couldn't figure out what was wrong. My body was a mystery and they didn't know how to solve it.

Before I received my diagnosis, I was fainting and convulsing approximately eight times each day and was receiving weekly visits from the paramedics. At that point, I had been pulled out of school and put on a home tutoring program. Although I was disappointed, the idea of attending school wasn't a possibility. I didn't have the energy to make it through one class, let alone an entire day.

I battled this mysterious illness for two years until a doctor in the Syncope Clinic at the Cleveland Clinic Foundation diagnosed me with a severe case of Dysautonomia. The specific forms of Dysautonomia I was diagnosed with were Postural Orthostatic Tachycardia Syndrome (POTS) and Neurocardiogenic Syncope (NCS). Although the diagnosis was harsh, I was happy to finally put a name to what was happening to me and relieved to now have a method of treating my symptoms.

After the diagnosis, I immediately began intense daily diet alterations (high salt and high fluid diet) and physical therapy, along with my pharmaceutical treatments. My body responded beautifully and nearly one month later I was asymptomatic. I then decided to make an effort to attend school again. That turned out to be a bad idea. My efforts to once again attend classes were unsuccessful.

Maybe my body suddenly stopped responding to the treatments and medications, or maybe the stress of going back to school triggered a flair up in my symptoms. We'll probably never know, but nevertheless, the week I returned to school I “relapsed” and ended up in the Pediatric Intensive Care Unit after a series of convulsions.

When I was finally released from the hospital the school administration called a meeting with my family to discuss alternative methods for education because it didn’t appear that I was going to return to school soon. I was fortunate enough to have the final say. I chose to pull out of the Public School District and then opted to attend an online High School. This was actually one of the best decisions I made throughout this whole ordeal. I was, and still am, very happy with my decision.

Having Dysautonomia has really made getting an education challenging for me (well, it’s changed my whole life for that matter). I have tried the traditional classroom setting, numerous tutors, independent studies, online schools, etc. None of them, except the online High School, has worked out. It’s also been frustrating and exhausting having to juggle endless doctor appointments, numerous treatments/therapies, various hospitalizations, school, and life in general, I mean I have to fit being a typical 17 year old girl in there somewhere!

It’s been rough, but I’ve gotten through it and will continue to pursue the rest of my life with the same determination and perseverance as always. I'm not going to let the fact that I have Dysautonomia keep me from achieving my dream of going into the medical field to treat other children with afflicted with this disorder. Life is just too short to let something like this get in my way of living. Yes, I've had to make some changes in the way I go about everyday activities, but that doesn't mean that I can't sill live my life and pursue my dreams. I have overcome too many obstacles to give up now. I am willing to play whatever cards are dealt to me, no matter how bad my hand may get. I am willing to play whatever cards are dealt to me, no matter what hand I may get and I intend to play this game of life with all the dignity, grace, and humor I can muster.

I am now ready to get a fresh start, make new friends, and face new experiences and challenges. I know I will be attending college in the fall if all continues to go well, but as far as the rest of my life – I guess I’ll just have to see what happens. I’m going to take one day at a time.

I have a plan, but it’s not etched in stone. If there’s one thing that I’ve learned from living with a disabling illness it’s that things don’t always go as planned. Sometimes you have to adjust, and that’s all right.

I realize that just getting through college will be a challenge because of the nature of my illness, but I am determined to do it and come out on top! I will achieve my goals no matter how long it takes. I just need to be patient with myself, as well as others, in the process.

But, no matter what happens I think the bottom line is this: as long as I can look at what I’ve done with my life and feel as though I’ve accomplished something, or at least given it all I’ve got, I have fulfilled my ultimate dream. That’s all I want. If all else fails, I can live with knowing that I’ve helped make the world a better place.

I will close this now with a short passage from a movie I recently saw entitled "A Series of Unfortunate Events". In this particular scene, 14 year old Violet is reading a letter written from her deceased parents. I have paraphrased her mother and father’s final message to their children:

“What might seem to be a series of unfortunate events may, in fact, be the first steps of a wonderful journey.”

Some people may look at my life and see the “series of unfortunate events,” but I look around and see that all people have “unfortunate events.” I’m sure all of you have encountered hardships – some even more challenging then mine. However, with hard work, determination, and the loving support from family, friends, creative educational institutions, and wonderful groups such as DYNA, we can overcome these tribulations. We can, and we MUST, strive to better that which we have been dealt.

So instead of focusing in on the "unfortunate events" when life throws you a curveball, look a little deeper and try to recognize the first steps of YOUR wonderful journey.

 

January 2006 update: I have successfully completed my first semester of college at Youngstown State Universityand I’m now in the midst of my second semester. It’s definitely taken a lot of hard work and I’ve had to learn how to manage my illness while being away at school. Freshman year is a major adjustment for anyone, let alone someone dealing with Dysautonomia! I just wanted to share how well I am doing so that all of you out there who are as sick as I was (not that I don’t have my bad days anymore!) can see that there is always hope. When I was first diagnosed and practically bedridden due to the severe orthostatic intolerance I experienced, I never dreamed that I would be attending college. But thanks to my wonderful doctors who have been monitoring my progress closely and adjusting my treatment plan as needed, I have been able to pursue my dream! So, to all of you who think it can’t be done – I’m living proof that it CAN! Please never give up and always keep your focus on the light at the end of the tunnel, no matter how dim or far away it may seem.