Tag Archives: illness

A Moment Of Reckoning…Living with a Chronic Illness

29 Apr

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

Larissa