Thursday, February 18, 2010

The Scary part!

Since I was a child I've known that death was a very really and very soon possibility for me. Of course, all of us are going to die one day but to know that you may have to deal with the pure reality of that fact because of the blood that runs through your veins is scary for a little girl. Since I was a baby I've been in tremendous and agonizing pain but it didn't scare me. No one really knows this about me but since my illness has grown increasingly worse those fears I developed as a child have become very real to me. I talked to one guy I befriended about it and to another but understanding is something that people lack when it comes to this disease or when it comes to me. You see though I suffer greatly from this disease i don't look like it. It's as if you have to look like your red blood cells are clotting together keeping blood from flowing and holding back any oxygen from getting to the other parts of my body creating EXCRUCIATING pain-to look sick. Many times I wonder. Who can I go to? Who can I confide in? Those of whom I have stirred up the courage to talk to at times take what I go through as a joke but its no joke. Sometimes I just want to SCREAM! Just because I look okay doesn't mean I am. Living with this disease any sufferer will tell you that one develops a threshold of extreme pain. Many times with a smile on my face in the crowds of people surrounding me with people I called friends I stand in pain with no one knowing. I pray its only fears. Death will one day find me but I hope it is after I have done all of what God has planted me here to do.

My talents are minimal. I cannot sing, dance, or do what so many others can do but I can speak up. Speak up for the disease that God purposed me to have so that I can somehow make a mark in my community or maybe even the world. That is why I work so hard to create greater awareness and education when it comes to Sickle Cell Anemia and not because I happen to suffer with it but because it is so highly mis-understood, ignored, and out-casted. So many speak of and know of AIDS & CANCER as they should but do those same people know of SICKLE CELL ANEMIA? The majority don't. Those that do know of it see it as a Scarlett letter thinking, "only black people get it while others think most of the people who have it are drug users-abusers faking their pain to get a fix." I say that because that is what some have thought of when it comes to me. While they think that and hesitate to aide my pain I sit there in pain-DYING-FIGHTING THE TEARS-swallowing the agony that comes from the simple movement of my circular red blood cells transforming into the shape of a sickle. Those simple acts are what place me in the mercy of others every single day.

That's why I fight so HARD and so much! In whatever ways I can. Many can't understand but my goal before I do leave this earth is to help people to Truly Understand-not judge, criticize, overlook, or doubt but UNDERSTAND. Wherever~whether it be in Africa or the United States.

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6 comments:

  1. Thanks for sharing that Wande, it really helps to see you for who you are, as God intended. Like you said continue to use your voice to help others.

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  2. Hey Wande, I did see how hard it was for u in High school dealing with the sicle cell. You really hid a lot of what you were going through. I did see you going in and out of the hospital but I just never knew that much about the pain that you went through. It is just unbelievable and God bless u. Its great that you have created this blog.

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  3. Thanks Nicole! I didn't even know you knew.

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  4. carla6173@hotmail.comMarch 11, 2010 at 4:48 PM

    HI WAANDE I KNOW IT IS NOT EASY FOR U BOTH MY CHILDREN HAVE SICKLE CELL AND IT NOT EASY FOR MY SON ESPECCIALLY TOO DEAL WITH BUT IF THERE IS ONE THING I KNOW WHEN U TRSU GOD AND LIVE FOR HIM HE WILL SEE U THROUGH WHY ISAY THAT? THE DOCTORS GAVE UP ON MY SON TWICE AND TODAY HE IS STILL HEAR HE HAS BEEN ON THE VENTILATOR TWICE AND PRAISE BE TOO GOD HE IS STILL HERE SO DON'T GIVE UP TALK TO GOD.

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  5. I haven't given up. Not at all. If I had I wouldn't be writing and advocating as I am. All I want to do is create better awareness of the detailed things a sickle cell sufferer goes through and the only way to do so is by writing about my experiences. So please don't confuse my openness for complaining. Thanks for reading and for your support!

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