I know that for myself, as I was growing up I didn't share with anyone outside my family that I had this disease. That can be a very lonely place though family is by your side there is a balance that's needed. One cannot deal with all that comes from suffering from this disease with only family nor can one deal with it with only friends. There is something that each group of people brings to someone suffering from a debilitating disease.
From my previous blogs you can see how difficult it is for me living with this disease. So when I say that the role that family and friends play is Essential, I mean that when we as sufferers go to that dark place that sometimes comes with the amount of pain, pressure, and circumstances that we deal with, it can be the source that we go to, the strength that we draw from which pushes us forward through the cycle of attacks we endure.
When one goes through the hardest times in there lives, the people surrounding them are the one's that can lift that person up. Without having a circle of friends & family it is very hard for anyone, let alone someone with Sickle Cell Anemia to take on everything that comes with having this disease. My desire here is to highlight & acknowledge how integral the role you play is. Don't underestimate how much of a contribution you make to a loved one. I have only experienced one side & that side is from a hospital bed. When I think of what it takes to be on the other end, where you see the amount of pain an attack brings on, I wonder to myself & ask would I be able to continue to stand there? The fact that one chooses to continue to be that source of support for someone who is chronically sick & the fact that despite how uncomfortable & difficult it may be to witness all the pain an attack (Crises) brings on it only shows your level of Love & Commitment to that person. Though in the midst of an attack (Crises) knowing that a loved one is there by your side, it does wonders for the morale & ultimate well-being of a sufferer.
If you know someone with an illness or someone with Sickle Cell Anemia then reach out to that person. Don't feel like you have to have the right answers or worry that you have to say the right thing. Believe me when I say that just as much as you may not know what to say when your loved one is going through such incredible pain, the person suffering through the pain doesn't know what to say knowing you’ve seen them in such a horrible state. Support. Being there for your loved one means sticking by there side. When we sufferers talk about the pain we go through it may be a bit overwhelming & scary to hear the details of what we endure but you don’t have to shield your fears from a sufferer. Just as us sufferers are seeking a refuge where we can go to you & release all the emotions & trials that come up you too can open up & share your emotions & the trail of seeing us in so much pain. By openly communicating we-together are opening up a bridge of communication, a bond of trust and that is so important so that a Sufferer does not have to feel like they can’t share how they feel and YOU don't have to feel like you have to put up a front that you have it all together. I know for me it became second nature to keep my feelings to myself because the times I did share my heart it would either scare my friend or they would scare me by giving a response like: are you dying? Being shot down when I was open brought up a wall between me & everyone else which can bring both a feeling of discomfort & weirdness. Not everyone can handle a situation but those that care enough & love enough to make it happen despite fears & insecurity—I encourage you to do so.
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Sunday, April 11, 2010
Thursday, April 1, 2010
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.
Share
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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