Death is inevitable this I know for sure, so why is my heart is knots, why am I feeling afraid, why does her passing bother me so much? I had similar feeling when my aunt passed in 2009 but for some strange reason this feels somewhat more personal. It’s very hard to express what I feel, I can’t seem to put a handle on it! I am perplexed, I’m bothered and I’m scared. But Why?!

My cousin passed away on Wednesday May 15^th 2013… Ms. Khadine Nugent (Dassa) as she was called by the family, and my heart is in pieces! I’m shattered! I just can’t seem to focus, I can’t take my mind off, or escape the hurt…I had to deflect and write about the current anxiety I’m feeling.  As I blog my way to free, and as occurrences happen daily most I have no control over, I’m desperately hoping for some relief while I feel this fresh pain in my heart, I am full of questions!

I find myself being short, irritable, easily agitated and angered since Wednesday. It hurts and that’s understandable, I’m in shock/disbelief because of the sudden and unexpected nature, but the emotions I’m feeling I can’t seem to capture, I’m trying to write my way into understanding, healing and some form of insight but I’m coming up short. There’s a knot in the pit of my stomach! Let me dig deep. The similarities;  we had an illness in common, we both have one child, and we’ve had countless hospitalizations, the awkward uncomfortable explanations, the feeling of inadequacies, we have had love ones thinking with each crises, this is it, it’s our last before we make our exit and visit the land of no return, medical professionals telling our parents to make the necessary funeral arrangements as there is nothing else they can do, the similarities many, but something is just not connecting for me. I have experienced loss before, the finality of the experience but I can’t put a finger on it this time.

Could it be because internally I struggle as I look back over the jist of my life, and realize the things I have experienced, the many touch and go moments, the close calls, the times I gave up or came rather close to it and justified why I could, should and can give up? I did all that, felt all that pain, had organs shut down on me, but I’m still here and the question now haunts me WHY? Why her, why not me? Why wasn’t her life spared, I’m not more special! In fact some of the experiences I’ve had she hasn’t, and this I know because we spoke about them, I had the stroke, the paralysis, I’ve had the biseptic necrosis of the joints, the depletion of the spleen, I’ve had the countless transfusions, I’ve had more hospitalizations by far etc. etc. so WHY? Why am I still here and she’s not?

From a religious perspective you are often told or frequently hear you are not supposed to question God and I try my best not to, yet at times when things are rather difficult, unfathomable or just unexplainable I find myself asking the Why’s… Who else am I to question, with and to whom do I seek a response/retort to these my poignant conundrums? Whom else will grant me the relief and peace I so desperately need? Khadine was a very sweet spirit and a gentle soul, yes she had her quirks like each and every one of us, and not knowing for sure what caused her demise is unsettling! Did she give up because the pain was too much, did she succumb to septicemia, as we are so prone to infections, did her organs fail her?  I wonder even if I knew exactly what happened would it make a difference? Could it be that I’m bothered that with all the technological advancement in recent years and studies been done, and cures for various disease been sought after, I hear, see and know of very little being done in the fight against Sickle Cell Anemia?

Could it be I am angered at the fact that so little is still known about the disease and it affects so many? Could it be, my opinion that because this disease affects a large percentage of minorities it’s not approached with the same level of urgency as other illnesses, could it be that instead of focusing on cures, people including medical professions are busy feeding their egos assuming, speculating, taking very little interest and saying, well they are not expected to live long lives anyway…so as a result they don’t even try?  Could it be that some medical professionals think that it’s not as bad as we say, and most of us are passed over and seen as drug addicts thus not considered a valuable asset to society, could it be that I’m just afraid because I believe this will be my fate? Could it be the expectations or the lack there off? Could it be as I hurt tremendously for Dassa’s child I fear for mine?

The pains you feel with this disease is indescribable! I have felt pains in every square inch of this little body I possess, I have felt pains in areas I didn’t even know one was able to feel pain. The joint pains, the back pains, the stomach, the chest, the fingers, toes, teeth, ears, eyes, nose, lips, I have felt pain even in my…,  shooting, stabbing, traveling pains, pains so severe, excruciating pains that renders you helpless. I mean pains that you can’t even be touched, because someone touching you makes it that much worse, pains that makes you unable to move, you can’t find a comfortable spot, you can’t move a muscle and at those moments when you beg God to end it! I have spoken to my aunt on several occasions since and it seemingly gets worst with each conversation as she relays a conversation my cousin had with her boyfriend prior to her death being unable to put into words the pains she felt she simply asked him to imagine someone being in a car wreck and every part of their body is mantled that’s what she felt like.

I have had countless moments where it seems as if speaking, breathing even blinking was too much because it hurts so badly, your breathing is so shallow because you dare not take a deep breath because pain is intensified as your lungs hurt, thus enough oxygen is not getting into your lungs, blood, therefore causing bad situations even that much worst. I recall times being in crises and having to explain to a medical professional what is going on, what you need, what they must do, what medication to administer, what not to do…

Being rushed to an emergency room in pain and having someone tell you, you have to wait, or like that of my experience in the very hospital my cousin passed, having been taken there and having to wait for hours because they didn’t have the medication I needed in the entire hospital, having to send off campus to a hospital in another parish to get basic but vital medication, knowing it’s a life and death situation, it’s rather critical.  Having some nurses be very rude, cold and crude, or having medical professionals trying to use you as their personal guinea pig, LOL…I’ve had a doctor try to administer horse tranquilizer on me in Australia, others in the US try to talk me into taking a drug that had more side effects than the illness itself and the never-ending list goes on. Having a doctor look at me with amazement then utter the words, “hmmmm Ms. Rhone you seem to have beaten the odds” Why, because I made it to twenty-five. Having folks question or blatantly ask if you’re a walking pharmacy? The mean, judgmental and questionable stares etc.

Knowing, I will not be able to speak for all but also knowing my cousin, my aunt, myself,  Ann-Marie Cooper, believing you’re a burden to those around, when you have to ask for help or rely on others for simple things, being told or hearing that your inability to perform simple acts at times is an excuse, I’m not OK! though I know I must live!  I am indeed eternally grateful that God has spared my life, and I’m thankfully counting my blessings for several reasons, I still can’t help but ask the questions that plagues my mind…

So Ms. Khadine Nugent, Mrs. Viola Cherrington- Rhone, Ms. Violet Dixon, Ms. Ann Marie Cooper, Mr. Nigel Miller, Mr. Oneil Miller, Ms, Diseree Poteat, Ms. Valencia Dixon, Mr. Mark Thomas, Ms. Felecia Durrant, and all the thousands of others that have succumb to Sickle Cell Anemia or complications relating to this dreadful disease, R.I.P.  As I hurt for the unfulfilled dreams, goals and wishes, I make a promise this day, I will try my utmost best to live out my days, reaching, aiming, striving to accomplish, reach my greatest potential,  fulfill my dreams, and attain my goals. I will also teach and educate as many as I can about this chronic, life altering, debilitating, disease. I have never and will never use being ill as an excuse, a crutch or a reason not to do… I will think of you often. Sleep my lovelies, your rest is well deserved. Seeking answers and journeying to free.  Join me as I/we journey to free…

From my heart to yours

Larissa