At last, my Thank You Video!

Here it is, everyone! I apologize it took so long for me to post, but these past few days have been kicking my butt. In between medicine dosages, I sleep a great deal and barely come up for air. My body feels so fatigued, and trying to maintain my health has been an undeniable struggle.

Enough about that, though, as this video is a thank you and testament to those of you who have been there for me in some way or other in recent months. Unfortunately, there are so many friends, family, nurses/other staff members I didn't have pictures with. However, I am sure this is not the last of my video-making days. ( : I actually quite enjoyed working on this miniature project. If you see your picture in here, I hope it makes you smile. If not, and our paths have crossed, know that I sincerely appreciate your kindness more than I can express in words!

-A 

Could I have been HIS National Anthem?

I remember he grabbed me by the hand and whisked me away onto the youth-stricken, bacteria ridden dance floor. There was too much in which he did not know and in which I was not willing to share at that point. In retrospect, I am not sure if my hesitance (and ultimate failure) to reveal my medical and intimacy fears made me a coward or someone worthy of intellectual praise in regards to my tender age. I wanted to tell him, tell him all of the things that made me who I was back then. I wanted to tell him why I was only in school every other week, and why I was shy in regards to him trying to touch me in the most respectable of places despite my past of being exposed in nearly every way to various doctors of sorts . Yet, his immaturity was utterly apparent and there was no way for me to distinguish between high-school lust or genuine desire when it came to his bleak pursuit of me.

I could help him grow internally, I thought, or I could be the laughingstock of the school by next Tuesday. Already, I admit, I was doing all in which I could to help nourish my waning, delicate reputation. I was not even at the ripe age of sixteen and already was dealing with the fallout from keeping a medical condition on the down low. I would not deny of its existence to anyone who was lovely enough to ask me while making full-on eye contact, but I was also not fluttering around trying to gain awareness of it as I am these days. To fully comprehend my mindset at that point, it's necessary to grasp the fact that I was an adolescent emerging into young adulthood. I was unaware of my identity, and of the power in which my mere voice held even though it was trapped in the midst of my 115 pound body. 

Now, nearly six years later, I remember why I pushed him away from me that night and fled into another room like the scared, naive little girl I was. His hand, when in mine, brought about a hybrid of feelings; utter anxiety could certainly account for the vast majority of them. I remember, but I do not necessarily agree, with my 16-year-old sentiments in regards to foregoing taking chances and taking the risk of young, immature love. I did not know all in which I was truly capable of back then, however, and so I limited myself.   

It was a mere matter of weeks before he was with another girl. To be quite honest, I do not blame him, for life is too short to be kept in captivity due to matters of the heart. At least, that is what I believe at this point in time. That girl, I recall, wore short skirts and had long blonde hair. She donned a sense of confidence unobtainable by me back then, and it sickened me inside to watch their love blossom mere feet from my locker.

I am still exploring internally and ultimately questioning if I am capable of achieving self-actualization within this remarkably short lifetime. However, I undeniably feel that analyzing past behaviors in regards to my medical condition is a sense in the right direction. - A

With A Heavy Heart...(A Post as Raw As Mine Come)

* I am currently inpatient for infection as I write this

We were on our way there. It shouldn't be much longer than 20 minutes or so, mum was saying. 20 minutes or so felt like three exceedingly long lifetimes at that point. It felt like steak knives were being jabbed into my thigh (outer and inner) and left buttock. Every second in which I was forced to endure the pain was excruciating. I was rather frightened as I knew another 20 minutes there could have a hazardous impact on my rapidly weakening condition with cellulitis – 20 minutes was enough to go from awful condition to an absolutely nightmarish one. There was nothing else we could do as we were already in Boston, mere minutes away from the hospital. Yet, there was unexpected traffic on Sunday during an early afternoon due to a bridge somebody had decided to shut down.

I sat in the backseat of the car; my crying was incredibly heavy and persistent, accompanied by occasional shrieks stemming from a concoction of pain and frustration. In that moment, I was fighting for my survival and that was the way in which my inner warrior (or lack thereof) chose to manifest itself. My poor parents had the great misfortune of having to listen to me the entirety of the way in a cramped car (a 1979 trans am, our other, much more spacious car, was broken). It must have been an arduous task as seeing somebody you love in such unrelenting pain is a form of torture in itself. I was freezing and trembling all over, and the pain was growing worse by the instant. I didn't know how to cope in that moment. Sanity was a friend from my past that was long gone by now.

If I am being incredibly honest, I wanted to die and be freed from all my misery at that point. Please mom, I said. Pull over and just kill me. You and Dad. If you love me you'll do it. I have great trouble writing this even in this very moment, as it brings back the most horrific of memories. However, when the pain is so extraordinary and uncontrolled and your temperature is so exquisitely high, you are certainly not thinking coherently. Can you imagine what my parents must have felt though? They had been through this with me numerous times before, but never had I requested for them to kill their own daughter. Before you think me absolutely mad, please try to understand that it literally felt as though a bevy of steak knives were impeding upon the infected part of my body. Try to understand that I had a headache so prominent and painful, along with legs that felt like mush and difficulty breathing due to the exasperating infection. I was out of my mind, but with due medical reason.

We eventually arrived there, and the ER at CHB took immediate notice of my down-trodden state. They wasted no time triaging me and then getting my condition under control as my temperature was just under that of 105. On the way to the ER, I said something to my parents that I know was rather hurtful to them. At one point, someone in the car made an innocent remark in regards to my relentless shrieking and hysterical crying.

“You have no right to say anything,” I said. “This is your fault this is happening to me. You guys were the ones who did this to me.” I know what you are probably thinking. What an absolute ingrate this young woman is to have made such a malicious comment. And, admittedly, that hadn't been my first time making a comment like that during a time of medical urgency. For me to imagine you calling me an ingrate is probably somewhat mock-able, as you are probably thinking much worse of me at this moment. I get it, I truly do. Sometimes I hate myself for making comments like that, for making my parents feel as if I even think they are partially responsible for my medical condition when I know they would have never wished this upon me.

I have a big heart, I swear I do. So where do comments like that come from? I was physically sick and emotionally a wreck, but that is no excuse. In those moments, when such medical injustice is upon me, it's almost like I look for someone to blame out of anger. My parents, however, are not those people. No one is to blame, that much I know. Still, my anger got the best of me and that in itself is very dangerous. My infections will come and go, but those are the kind of words that haunt a parents forever. I sincerely wish I knew how to be a better daughter, but I don't. I am trying, though, if not somewhat aimlessly.

To parents who of children who have this condition, we know it's not your fault. We know you would change things a million times over if you could. I cannot take back the remarks I've made and the hurt in which I've cast upon my family, and that too is something in which I have to carry around with me for eternity.  - A