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“Hope Dies Last” by Adaria

Looking at me, most people would never know something is “wrong” with me. I will never forget one of the first times Tony and I spoke on the phone…it was late afternoon and I had told him I was just getting out of bed. Tony sat there, thinking to himself, “…what was the matter with me?” Thinking that I was the “typical” college student sleeping in until 3:00 PM after a wild night of partying. In reality, I was up the entire night in tears from some weird pain disorder I have and had only finally crashed from exhaustion a few hours before.

Most of my life has been a whirlwind of one medical problem after another, and of course they’ve never been those easy to diagnose, “here let me put a Band-Aid on that” kind of problems. Whether it was chronic infections as a baby, crippling growing pains as a child, being diagnosed with Juvenile Rheumatoid Arthritis (or “old people’s disease” as I used to call it) in the fourth grade, mysterious red dots on my finger that bled profusely for over a month straight, knee surgery, wrist surgeries, other surgeries, mercury toxicity, chronic and debilitating migraines, allergies to things people just shouldn’t be allergic to, and of course unrelenting infections in between, I was constantly sick. My joints always clicked and creaked so I had to give up gymnastics at a young age, and because I am what the doctors cleverly refer to as being “too flexible” even dancing was phased out by the time I was 15. Nonetheless, these problems were nothing compared to everything that started to surface my sophomore year of high school.

Towards the end of my freshman year of high school I started not feeling well again and my doctors thought my JRA was out of remission. As I entered my sophomore year, things were progressively getting worse. I had a migraine nearly every day, my body hurt so bad no one could touch me, the mere thought of moving my neck would bring tears to my eyes, I was getting burns under my arms to the point that I could not put a shirt on, I had rashes all over my body, my hands hurt so bad asking me to hold a pencil was like asking me to hold a 500 lb. weight in one hand, I was losing my hair, my glands were always enlarged, and my immune system was shutting down.

The doctors kept pumping me up with medication, steroids specifically, which only did more damage. It took a blind man (yes, a blind man) who was doing manual therapy (a form of deep tissue, massage therapy) on me to try to alleviate pain, to realize that my organs were enlarged and shutting down and that I needed to see a new doctor because clearly what my current doctors were doing wasn’t working…it was killing me. Shortly after seeing a new doctor, it was realized that I had been bitten by a tick the prior year while vacationing in Mexico and been infected with a parasite that was not commonly found in humans or in the US, and because it had gone undetected for so long, and because I already had an autoimmune disorder, it was destroying my body.

I spent most of my sophomore year of high school in bed. I could not go to school, so I was on bedside assistance with tutors coming to my house, and only really left to go to the doctors. I was constantly in pain; I remember nights where I was up hysterically crying because the pain was so bad, telling my mother I would rather be dead because I couldn’t deal with it anymore. Even to this day…the memories of those nights still make me cringe. I couldn’t sleep because the pain was so bad and my brain wouldn’t shut off, so the doctor put me on medication to “shut me down,” which meant I would walk around the house leaving the fridge open, the stove on, and meant that you would have better luck going outside and having a conversation with a tree.

At that point, I felt like someone had removed me from the life I was living and transplanted me in hell. And saying I felt alone would be the understatement of the century. But even so, the worst part wasn’t the fact that I was so sick, or that I was dealing with this unbearable pain every day, the worst part was that I felt like I was trapped inside of my own body and there was nothing I could do about it. As most people do, I went through the “why me?” phase where I was depressed and angry. There were times where I just wanted to give up (and I probably would have had it not been for my family and friends), where I questioned how there could possibly be a God because how could someone be so cruel…why would someone want me to be in so much pain every day? Why would someone just sit and watch as my life was falling apart? There were days I thought that someone was just sitting up in the clouds, pointing and laughing as problem after problem kept popping up. But then it was like I woke up one day, and something or someone had slapped me in the face.

After a few weeks of wallowing in self-pity, hating the world, losing faith in God, and wanting to do nothing but curl up in my bed and die, I started to realize there was no point in wasting energy on feeling sorry for myself. I somehow came to the realization that my life could be worse. So what if I couldn’t be in school? So what if I was in excruciating pain 99% of the time? So what if I looked like a red, beached whale thanks to this stupid parasite and the medication I was on? I had teachers coming to my house and I still had the ability to learn; I still had the ability to feel anything at all; I still had the ability to see, even if what I was looking at wasn’t always the prettiest of things. I was alive. My life could be worse.

From that point forward, I decided to stop focusing on what was wrong in my life, and to focus on everything in my life that was great. I was alive, I was surrounded by family and friends that loved me and supported me, and most importantly, I now had the hope that I was lacking before. This is around the time I started living by the phrase “hope dies last”. Not everyone gets this … some people say it sounds so depressing, but if you really think about it, it’s the exact opposite. When everything else in your world is falling apart, when it feels like everything else around you is dying, as long as you have hope…everything will be okay. I literally lost the life I was living, my body was dying on me, my friends were disappearing because no one wants to be around someone that quite frankly, isn’t any fun, but somehow I still had hope that everything would be okay, and because I did…I am sitting here writing this story today.

Shortly after I adopted this new mentality, God slapped me in the face again. Sure, I decided to just accept that this is how my life was going to be for now, and understand that my life could be worse, but that didn’t mean I understood why…

I first heard about Erin in the local newspaper. A great way to reaffirm that your life could be worse is to read about a girl younger than you, that is suffering from one of the rarest forms of cancer known to man, and has been for most of her life. Erin was diagnosed with neuroblastoma at the age of 4, and neuroblastoma took her life at the age of 11. Imagine that…8 years battling a horrible disease. You would think that she would have been an angry person, that she would have been mad…not even the tiniest bit. But that’s what made Erin different.

When I first met Erin, she was all smiles. Despite the fact that she was in pain and probably felt like she had just been run over by an 18 wheeler, she was smiling and asking me how I was doing. Forget the fact that she was smiling, this little girl was asking me how I was doing?!?! All I wanted to do was hug her, tell her how sorry I was, and find some way to make her better, and she wanted to know how I felt. If that isn’t an Angel, I don’t know what is. Erin taught me that everything happens for a reason; Erin taught me that everything that I have gone through, my medical problems and everything in between have actually been blessings in my life. If I had not been sick, I would never have met Erin. And if I had never met Erin, I would not have realized at the age of 15 that I wanted to be a philanthropist; I would not be sitting where I am today, writing this story for Let’s Hear Your Story.

Today, I like to think I no longer look like a beached whale. In fact I am pretty sure I don’t, because most people, like Tony, have no idea anything is wrong with me. Then again, I don’t think anything is “wrong” with me per say; I am just different than most people, I am unique. I have spent the last couple of years still dealing with various medical problems, three surgeries in less than a year, debilitating migraines, some freaky pain disorder amongst other things…but I consider myself healthier than I have ever been. In fact, during this all, I managed to start a business at 19 years old, graduate college with honors, meet Tony Lombardo, the inspiration behind Let’s Hear Your Story and finally fulfill one of my dreams, starting my own nonprofit organization…the reason I am writing my story.

If my journey thus far has taught me anything, it is that everything happens for a reason. I used to like to blame my “abnormal” health on the fact that I was born 6 weeks early…maybe if my immune system had more time to develop my body would be a bit kinder to me, but as I’ve matured I realized that my medical problems have been more of a blessing than anything else. If I was born “on time”, if I wasn’t chronically sick as a child, if I wasn’t diagnosed with the JRA, if I hadn’t been bit by that stupid tick in Cancun, if I didn’t have to deal with every medical problem I have up to this point in my life…I would never have met Erin, I would never have met Tony and I may never have realized that my purpose in life is to help other people. If I had not been thrown the twists and turns…I would not be sitting here writing my story, something I never wanted or thought I could do.

One of the biggest challenges I faced and still face to this day is being okay with people knowing I am “different.” I am happy with who I am, I wouldn’t change me for the world. But there are still days where I feel broken…days when I don’t feel my best, where those imperfections and the “remnants of my past” have to surface and remind me that I may never be normal. It is easier, especially now that I look “normal”…to let people think that I am just like them. I can hang out with my friends, I can go to a bar, and unless I stand up on a chair and announce to the room “hey guys my immune system sucks!” or “hey guess what? I have this freaky pain disorder that will leave me up all night crying in pain unless I take painkillers in time” no one will ever know I am different.

So up until now, I chose not to tell my story. I was too afraid of what people would think of me if they knew I was broken, that I’m not perfect; I was too afraid it would make it all real. But guess what? This is reality. Everybody has problems, everybody has to overcome obstacles. Everybody has a story to tell…I want to hear your story.

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