One VOICE

As I began my advocacy for Sickle Cell Anemia I didn't know how much of an impact one voice would make--though it's always said that one voice can make a difference. I didn't know that my voice would take part in making such a difference but as I delve deeper and deeper into advocacy I see how wrong I was and how much I under-estimated what one voice could do.

Now, I am fueled to make an even bigger mark in the Sickle Cell Community. How can I do that? I can do that by encouraging each and every one who reads my Blogs (whether or not you have this disease) to spread the word and educate people on the things that you have learned. I have a website that I created for such a purpose (education). Please check out my website at: http://wandefightsforsicklecellanemia.com/ I encourage you all to share what you've learned and voice questions you may have by going to the~Share You Story~tab and writing in my guest book.

You know, it’s so easy for a voice to die in silence. I was there. I was tired, hurting allot, and lost in my pain. But the one thing that helps me the most is sharing my story and knowing that I'm not alone in this because by sharing my story I've freed myself up to people hearing me and all I go through in addition to hearing what others go through. So you see its not in vein. My disease not only teaches me life lessons that cannot be learned in a classroom but it opens up dialog and experiences that others don't have from living with Sickle Cell Anemia.

I'm not going to lie. Living with this disease is definitely the HARDEST thing that I have had to do and endure. In my advocacy, it may seem as though I just deal with this illness and move on but that's not true. Believe me when I say that there have been many times where I've hit a wall and been sad, in tears and frustrated by the life I was given to live. I've even questioned God and his purpose for me. I'd question many things in my life and wonder why me? Did I deserve this torture of a life? Am I a bad person and having to pay for it with this torn in my side day-in and day-out? It is Hard. It's really hard but whenever I get to that place in my head or even my heart I remember that this disease has also brought me many of the best things in my life. It has exposed things in me and how I deal with various situations. I've learned that I became a very angry person because of the constant going in and out of the hospital and the demeaning ways I would be treated when hospitalized. I became so angry that my anger took over who I was. I had to learn how to deal with and channel my anger. Funny enough, I didn't realize how angry I was till it all caught up with me. I saw myself in the proverbial mirror which was my disease and I had to grow as a person. I had to grow and deal with the resentment that came from all my suffering and in doing so I have become a better person. I have become a more grateful person.

Without having this disease I wouldn't have been able to get to that part of myself that harbored so much anger. I began to learn how I dealt not only with my illness but with everything that comes with life whether it is: relationships/friendships, family, work or any thing else. This discovery then brought me to deal with the other areas of my life that I honestly was not dealing with. Instead of dealing I would just push things under the rug, leaving it to all pile up and make me trip. I kept wondering throughout my life why the same issues would arise over and over again but learning from my illness I saw for the first time how much of my life was connected to how I deal with my illness. As a result, I began to deal. I began to heal. I'm still learning and growing and I have much more to learn but I now see how essential having this disease has meant to my overall makeup and identity.

Now, I've been very ill as I have written in a previous blog so as I talk it over with my doctor I am considering his suggestion to have a bone marrow-transplant. From the things that I have been learning I now know that though Sickle Cell Anemia has helped shape me into the woman that I am--my Identity is not Sickle Cell. Though it has such an effect on who I am and will be (as a result of what I've suffered) it is not all of me. So if I were to go through with the bone marrow transplant and be cured I would not be lost without Sickle Cell.

There was a time when I was well and not hospitalized so often. I began to be afraid of who I would be without Sickle Cell. I know it sounds really twisted but my whole life has been surrounded around this illness. So to be without that thing that I used as a driving force for so many things in my life I began to wonder if by myself I could conjure up that same drive and intensity. When you spend your whole life living a certain way how do you just switch off and begin living a different way? That's the question that would run through my mind till I worked on my security and my insecurity. Finally, I realized that though my illness would drive me to do things because I didn't want to be held back I was present in my drive. I learned that I was present and apart of whatever drove me forward so I wasn't losing out on anything because it wasn't my disease that drove me. It was the will of God within me that pushed me and was my driving force.

There is so much of what comes together to define me. There is so much that comes together to define us all. Don't loose sight of who you are and how you've come to be. We can all learn from each other. We can all relate to each other. I just hope that my words help and you can relate to any of my experiences. Use your voice as I'm learning to use mine.


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