Viewing 7 posts - 1 through 7 (of 7 total)
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  • #15501
    viviane salzman
    Participant

    A couple of years ago I received a telephone call from a gentleman who stated to have “gotten your number from your hematologist.  We are having a contest and inviting sickle cell patients to write a letter to the disease as if it was a person.”  I was promised a hundred dollar for the project.  Unfortunately, the day I was to turn in the letter, a snow storm was announced.  The gentleman called and informed me that he had to leave the state and would keep in touch.  This was the last time I heard from him.

    Since I had already written the lettering kept it, I will share it with you bellow.  Hope you enjoy it and let me know if you can relate.

    Sickle Cell Anemia,

    <i>You have taken hold of me since I was born.  During my early years, it was not me per se that was mostly affected.  You have deeply wounded my parents, sibling, and everyone else in my entourage.  You have brought fear, anxiety, disquietude in all who knew me and of me.  Sickle Cell Anemia, is there going to be a time when you will be history?  Or are you going to settle for good to terrorize the lives of the ones you have claimed?  Am I doomed to live my life in fear of an impending painful crisis, stroke, infection or even death?  You are so unpredictable it is scary.  I am begging for a normal life, please hear me out.</i>

    Sickle Cell Anemia, when I was about twelve years old, I remember being in agony.  I was thinking that the time has come.  Am I going to die?  I asked my mom.  Bravely, she answered: “Viane, you were six months old when you were <i>extremely sick.  I took you to the clinic just to hear the doctor telling me: Ma’am, your child is very sick, there is no hope.  I would suggest you go home and prepare for her death.”  She told me the doctor even refused to prescribe any medications, “there is no point” the doctor declared.  My mom said she was distraught, helpless and angry.  My dad felt powerless, mad and discouraged.  Thankfully for my parents, I did not die but stayed alive solely to torture them with my off-and-on crisis.  Sickle Cell Anemia, you make me feel less than a person.  I have missed so many fun moments of my childhood just to be on a hospital bed suffering.  I could not play sports, I could not travel, I could not go to sleep overs, to remember a few.  When I was a teenager, I looked underdeveloped.  I was teased, ridiculed, dismissed, bullied, misunderstood etc.  I entered a five day coma a few years ago which left my love ones in uncertainty and despair.  Again, when I got better it was just for a little while.  Sickle Cell Anemia, I am tired of being judged by people who do not understand you.  It Really saddened me to have some people thinking that I am contagious.  Somebody thought I had AIDS.  Sometimes I have people asking if I have hepatitis because of my yellow sclera.  A classmate once asked if I was anorexic because I was so skinny.  One of my family members assumed that I secretly had an abortion after having a surgery from your complications.  I feel tormented by your many erratic signs and symptoms.  I need a break from you.  You have affected every area of my life.  The thing that hurts me the most is being subjected to many oblivious health care professionals assuming that I am drug seeking while enduring indescribable, excruciating pain.  Sickle Cell Anemia, can you please stop torturing me?</i>

    <i>I would do anything to be freed from you.  YOU ARE A MONSTER!  I do not wish you on my worst enemy.</i>

    Viviane Salzman

     

     

     

    #15508
    Michael Quadri
    Moderator

    Thank you Viviane for sharing, this was a very heartfelt message and I commend your strength and courage for sharing. I can’t begin to imagine what you have gone through but I can definitely see you have been a warrior for a long time. I was extremely moved by your letter and I believe this encompasses how many people across the world are feeling. Thank you, and if there is anything that we can do through the forum to support you please let us know.

    #15510
    Tito Oye
    Keymaster

    Hi Viviane,

    Thank you so much for sharing this letter. It is something that I know a lot of people with sickle cell can relate to.

    The way sickle cell can is so intrusive and can affect every single area of our lives, and everyone in them too. We can never make our health a second thought, it always has to be a priority and unfortunately it gets in the way of a lot of the time.

    On top of dealing with sickle cell, we have to deal with peoples ignorance which makes it even harder.

    I do hope that this letter gives people more of an insight into life with sickle cell and they become more empathetic to others with the condition.

    Again I just want to thank you for your strength, and from one sickle cell patient to another, you’ve got this, keep your head up!!! ❤️

    #15514
    viviane salzman
    Participant

    Thanks to you both Micheal and Tito!  Stay blessed.

    #15540
    Muwanguzi Israel
    Participant

    Thanks Viviane for sharing this experience. It is touching. I imagine the pain you’ve battled with since childhood.
    I am in Uganda, and after reading your letter, I have resolved to do all I can to give a hand to any warrior in my area. I have to do much more than I have done before.
    May God be with you and respond to your call.

    #15542
    viviane salzman
    Participant

    Thank you so much for your comment Muwanguzi! Stay blessed.

    #15847
    Steve M
    Participant

    Wow Viviane Salzman I just read your letter and I can relate all of it with my life I have had so many health issues that is crazy and yes sickle cell is a monster it’s the worst in all ways..

    Thank you for sharing this letter with us. Stay safe and healthy

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