The healing process or The process of healing is as unique to each individual as their finger prints. We all experience and process things differently, therefore we heal differently. Do Not try to stop, block or hinder one’s process. The best you can do is be supportive and patient.
It matters not how ideal our life may seem to others, or how we pretend all is well, we all encounter those days where nothing, and I mean nothing seem to go right, how do you cope?
I am learning day by day to just be! To be present, to be still, and to accept that no matter how hard I try there will be days where nothing goes according to plan. But, the off days are much easier to handle than an off week or two.
My current situation: I have been mostly immobile for over two weeks due to an unfamiliar health issue. Living with a chronic illness such as sickle cell anemia it shouldn’t come as much of a surprise when the body starts acting up or you experience new symptoms. After all, Sickle Cell Anemia affects EVERY area of your body, no part of the body is exempt, from your brain to your toe nails.
These new symptoms however startled me. Dizziness, I have experienced dizziness before because I struggle with abnormally low blood pressure but, this, this is different. Imagine being so dizzy that the very ground beneath you moves, the roof above you spins rapidly and you cannot maintain a steady balance. The only thing I can possible equate this experience to; as a child my very first trip to the amusement park I was so excited to ride the rides but found out half way into the ride I had horrible motion sickness, not only did I barf but I lost all sense of gravity. (That damn fling-mi-dash at Hope Gardens, Jamaica)
I was recently asked, “Aren’t you use to this by now?!” To which I sarcastically grinned and replied as calmly as I possibly could “Can one ever get use to being sick?!” Normally I would freak, stressing about being confined to a bed, which would only result in a worsened crisis that would end with me being in the place I hate most (the hospital) but, as much as I hate this, and it’s really starting to annoy me, I am choosing to take it all in strides believing that this too shall pass, that everything happens for a reason and all things work together for the good! From a pessimistic belief to optimism, ha, it feels better this way!
This is how I cope, I talk to myself! I’m not crazy (well, maybe a little) but, my current self talk: Well Larissa, It’s been almost three weeks, it’s about time you get back on your feet. They’re places to go, things to do and people to see and being in bed is just not working for me! This bout of illness has just about run its course, I’m so over this now whatever the source. Regardless of what the doctor says child you never listen, you are not about to start now by giving in. So with the dawn of the new day, you’re going to get up comes what may, if you stagger, if you stumble and even if you fall, you’ll simply get back up and try again, cause girl you’re a survivor above all. With that said, I await daybreak.
Consistency have always been a major issue for me, I struggle in this area not because I’m lackadaisical or lazy (though sometimes I am), but simply because my life have been a series of leaps and bounds and setbacks. This isn’t mental (though in some cases it is) this is simply because there’s a major factor at play and that is, living with a chronic disease. I make no excuses, I do what I have to do, working as hard as I possible can when I’m well, then, they’re those days when…
The pass few weeks have been a perfect example of experiencing highs, then accepting the lows. I’ve accomplished a great deal within the pass few months but in the midst of executing, prepping and planning there is another major part of my life I must contend with, living with Sickle Cell Anemia. Much like being tight lipped about being sexually abused as a child, this other part of my life I NEVER speak about openly, until now!
Living with a chronic disease such as SCA is debilitating to say the least. The good days are great but, on the days when every part of your body aches, your energy is gone and you struggle to even take a breath, it’s bad! To avoid the questions, the stares, the pity glances the insensitive and sometimes crude comments, I seldom speak about living with this disease. Outside of my family, a few close friends and my medical team only a very selective few knows how challenging a plight surviving with this disease has been.
However, like everything else in my life it’s about acceptance, realistically speaking I’m living with this thing that sometimes renders me immobile for days, at times weeks! I used to be so bummed about this and if I’m to be honest, ashamed. Yes, I use to be ashamed of being sick… My name is Larissa H. Rhone I have sickle cell anemia, sickle cell anemia does NOT have me… We speak from here on out.
When you just have to drop an impromptu testimony…
God I’m so grateful… I have journeyed a far way… Thankful…
I was awakened this morning by the younger me, forcibly asking me questions, while screaming Help! Help! HELP ME PLEASE!!
She asked, what happened to You?! what happened to Me?! What happened to that bright-eyed, vivacious, precocious child We use to be?! Remember how they told us We had potential? They said WE were the hope of a generation cursed by mental slavery and trepidation. They told ME l was the likely prospect, I would excel because of my natural god given intellect, they told ME the future was bright and they were dependent on ME! So, again, what happened?! What happened to WE?!
Filled with emotions, so deep was my remorse, pondering how to justify the reasons and respond to this little one. I dug deep questioning, how do I expound to this child?! I quivered from exertion having to explain not wanting to deny, I began to cry. Contemplating how to make HER understand reason, the how, the what, the whys. I leaped out of bed, ran to the bathroom for refuge, conjuring explanations less used. My mistake. Looking in the mirror to a sad and dreary state, my eyes swollen, I looked away with memories swirling, thinking what could be said, and how do I quite this screaming child inside my head!
HELLO!! Help! I’m trapped here inside, the time has come, explain to ME why WE hide?! Hello! she shrieked! I looked up, afraid to meet her gaze and surely there to greet me was her willful, defiant, interrogative stare. Are you going to tell me Larissa or will you continue to tuck me away?!
I sighed a sigh of relief and began to explicate. We were hampered, We were altered, our life’s course kinda changed when the violation started, followed then by rape. We were forced to keep secrets, forced to rehearse lies, forced to hide and cover for others while stifling our cries. We were asked to assume positions We were much too young to hold, required involuntary to undertake an adults role, and with each occurrence and each terrorizing blow that light that shun brightly then turned to a glow. That light barely flickered with each passing night until the flames that once flickered dimmed lowly until it died.
So, as You developed and other things were thrust at You, We unknowingly adapted dads negativity, adopted moms fear and tucked and concealed them securely inside of Our pains, so insecurities grew, as Our self-worth diminished until the hope WE were left with became extinguished.
STOP! STOP! She interrupted; PLEASE, help ME understand, yes, WE were faced with these challenges, these obstacles, AND?! Why? Did all this cause you to run, to hide, to succumb?! Sounds like excuses for YOU not wanting to try!
Oh, wait a doggone minute! the older me interjected, cause I’ll be damned, being redirected by this child, ME. I took that shit personally! Refusing and not wanting to accept the truth in which She speaks. I lashed back, Listen! little girl, listen to me! Let’s not forget about the impediment, that hindrance, YOU know, that debilitating life altering disease that rendered US handicap threatening OUR lives from age three! Do you remember all the lengthy and frequent hospital stays, not to mention near death experiences and surgeries?! Remember mom being told to make funeral arrangements for US not once but times three?! They gave up on US, they wrote US off, YOU and ME! So forgive ME if I grew weary, got tired, gave up, no longer wanting to fight, I fought little one, an arduous fight not just to keep US sane but to keep US alive…
Sooooo again, let ME get this right, because You no longer wish to fight I have to now curl up, remain small, go away and do what?! Girl, YOU better wake up and think twice! YOU best reignite that fire cause I’m not ready to die!! Yes, I’ll admit, some of these assaults were crushing BUT I refuse to accept all this pain was for nothing! So, go search deep down within, find the strength honey and come again! I know we’ve been wounded, hurt, feeling broken inside, BUT, now I’ve been awakened, together WE ride, reunited, unapologetic and unified!! She then called me out…Larissa, what now?!
What now? What now?! Little one I vow…
I will write for You, I speak for You, I claim victory over all WE say and do! I will reclaim that which was stolen, I break the bondage of lies, torment, defeat and proclaim though Our start was in hammered We will finish victoriously! I am so sorry Larissa, sorry I tucked you inside but today WE walk out of darkness and into the light.
I hugged Her inwardly. Larissa I immensely apologize, I beg of you my darling please be my alibi, hold me accountable and let’s ride! I now release the fear We were not meant to hold, letting go off false insecurities and false pride, I release you my darling, no longer will WE hide! Little girl so full of light, life and of love, I release you now, go, go on take flight but, before you go, please know, I am so sorry, I love you Larissa you’re released, now go…
I felt elevated, like joy was restored. I smiled and muttered for the first time in forever, I Love You Larissa Rhone. Just then I felt a tug, a pull, a gentle little hold and a voice in passing whispered, Larissa our story must be told!
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 15th 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
I am approaching the mid thirty year mark with my son by my side, all my body parts still intact, in good mind and spirit. As I reflect on all the things I have been told I can’t and should not do, I can’t help but marvel at my survival…They said I should have died at five!!!
I was three years old I remember…I began feeling excruciating pains throughout my body, unexplainable pains. The kind of pain that no three-year old child should ever have to feel, the pains were so awful and it was everywhere within my body. There were times when I cried uncontrollably from the intense pains I felt, other times being unable to cry, all I could muster was a groan. I would ask my parents why does it hurt so badly and all they would do is simply look on in horror. They didn’t have the answers to give or render any assistance.
This sudden illness and the frequency of these crises called for speculations of all sorts. My parents took me to the doctors many times, however they were unable to diagnose the source of all the pain I was feeling, I went undiagnosed for years. I was ten when I was first diagnosed with Sickle Cell Anemia.
Now having a name for the illness didn’t really change much just the fact that we now knew what to call it. Living in a third world country and having this chronic illness was a challenge. The medical community had very little knowledge of this disease, therefore my family and I went through a process of trial and error constantly. I spent days, sometimes weeks in the hospital at which time they would stuff me full of drugs, however the pains remained or would return as mind numbing as they did before the medicine.
We knew there was no cure for Sickle Cell Anemia. My parents who were full-fledged Christians would call upon the church to pray in an attempt to combat this illness. They resorted to taking advice from folks in the community in an attempt to provide some form of relief from the pains. My parents tried several natural remedies provided by the elders in the community, friends, family, neighbors, and strangers alike, some remedies so disgusting in taste that for years I could still taste some of them. I remember loved ones offering my parents to take me to various types of folk doctors, spiritual healers etc.
I recall being in this hospital for over six weeks, the nurses would inject pen insulin injections in my bum daily. When they ran out of room on the right side, they proceeded to inject the left cheek, when there was no room on my bum, they began to give me the shots on my thighs. The process had become unbearable for my mom and one night at midnight, she stole me out of the hospital without consent from the doctors. I vividly recall that night because it was the first time I saw my mom stand up to someone to the point of physically warding the staff off. LOL
During my early childhood years, I always had something to care for, various pets and or plants which ironically with each major crisis something would die. My parents would simply replace whatever had died in an effort to try to maintain normalcy in my life.
A week ago an associate of mine lost her battle with Sickle Cell Anemia. Quite honestly I get a little rattled each time someone dies from the disease (yes, I’m fully aware my demise could be from other causes) but my worry intensifies when I hear the reason or the age. I find myself worrying about these things because I have been told or heard so many times that I won’t make it past a certain age, and with each defiance of beating the odds another five years is added to my supposed life span, as another part of my body is physically altered, I’m encouraged to add another drug, or do another procedure for the expansion of my life.
I migrated to the US some years ago, and while I was ecstatic to be reunited with my parents I was more excited and hopeful to know I would receive better health care. (I was in for a rude awakening) it’s been better in some cases on the part of care, but, and it’s a big BUT to my surprise only a few doctors have in-depth knowledge about Sickle Cell Anemia, as a result I find myself having to educate the medical staff about the illness. The worst part, being in crises; everywhere hurting and having to have a lengthy conversation informing a medical professional of what to do or what I need. Sickle Cell Anemia is a chronic illness that has and continues to alter the lives of so many and still in this day and age it’s only known or recognized by a handful of doctors.
Since I decided to begin this journey to freedom, talking about these issues, blogging and writing my books has been forcing me to revisit unpleasant places, remember the pains, deal with the issues and this journey has awakened memories I had suppressed, stirred up feelings and emotions, caused me to laugh and to cry. The overwhelming emotions I have experienced since embarking on this journey has forced me to question if I should continue on this path to free me. It has been a lot and a lot to process but I KNOW I have to do this! I have had some major setbacks throughout this journey people are curious as to why I am baring my soul, my innermost feelings to the world…
I have had conversations with God over the years asking why, why was I exposed to these things, why was I dealt these cards, why? Well apparently I was and am being prepped for something bigger than me, it has not been an easy under taking. The average person may not have been able to cope, for in addition to being born with a hereditary disease, I was exposed and experienced other issues no child should have to deal with, “but, why not me? For years I convinced myself the reason I survived was the drive I had and the passion to push on because my siblings needed me. I couldn’t give up or give in until “after they passed the worst,” I had to be here for them.
There were many moments when I wanted to die, and in those moments I would repeat their names like a mantra, not a bible verse, not a prayer, but the order of birth of my siblings. Nemmy (Horace) John, Ricky (Ricardo), Candy (Candeesia) and Sam (Samuel). The pain that one experiences from Sickle Cell Anemia is excruciatingly mind numbing. There are times when I feel so ill, I can’t move and with pains shooting through every cell in my body it’s unspeakable and unexplainable. Even as I write, it’s rather difficult to explain the depth of the pains I have felt and continue to feel. I can only express it as being on the NASCAR track and seeing cars zooming by at such speeds that it is difficult for the eyes to follow and the mind to conceive, that’s what the shooting pain feels like when it hits. It’s rather unpredictable and most times comes on unexpectedly, in these moments I simply will myself to smile, especially if I’m out or anywhere but home, I simply pray and ask God “please just allow me to make it home.”
For years I hid the knowledge of my illness from everyone around me. School mates, class mates, work colleagues, teachers, professors, friends and even boyfriends. I was embarrassed to tell, I was made fun of for missing days at school I was looked at funny, questioned, I had friends and potential boyfriends shy away from me as if I had the plague, most important I refused to speak of being ill or any other trauma in my life because I do not, did not, nor ever want to be pitied!
I hate/hated the thought of being treated differently, or have the ewes and awes directed at me. I didn’t want to be a side-show or a spectacle and surely didn’t want to be treated as such. LOL. I recall using being sick to my advantage as a child a couple of times, that too was short-lived, because I soon realized whenever I told my parents a lie to get out of something, surely soon thereafter what do you know? I would get sick. So I stopped that quickly!
This path has been a tumultuous one! I had my moment of reckoning, my life-changing insight at the dining room table recently…The insight was simply, I am alive, He kept me, and sustained me simply because my time has not yet come. I have not done that which I am meant to do, I have not even began, the experiences I had, the things I have been exposed to are so much bigger than me, I just could not see it! Yet at the table with my sister, I was awakened to the fact, I’m not here because I really willed myself to be, I’m here simply because God has a grander purpose for my life and he wasn’t and is not through with me yet… after many years of making excuses after excuses, rationalizing and procrastinate like hell, I realize there a few things I need to do! with His guidance and leadership I’m accepting and walking boldly…. Join me as I/we journey2free…
From my heart to yours