One of the users of the Sickle Cell forum posted this awesome testimonial about her sickle cell epiphany that I'm allowed to share with everyone. Since my epiphany occurred when I met another sickle cell warrior who was not ashamed about her disease, it's so heartening when other people get the same attitude.
Without further ado, meet Kim.
Lately I've been talking about SC a lot. More than I ever have in my entire life. It is the one thing that I have always avoided and hated talking about.
Back in September I celebrated my 40th birthday. Words alone can't adequately express just how THANKFUL I am to have made it to the BIG 4-0!
According to my doctors, I have long out-lived my life expectancy; however, the Father said otherwise. I’m still here. Turning 40 had a major impact on me in several ways. First, it compelled me to express my gratitude by finding a way to reach out...to get involved in the SC community.
On October 17th I attended my first ever SC event. It was a Family Education event. At that event I had the opportunity to meet and speak to a group of adolescents, ages 13-18, about SC, how it affected my life over the years and and how I've coped with the disease up until present time. It was comforting for them in some way to know that I was 40, relatively healthy and well and that I was stable and had been on the same job for nine years...that I was normal (so to speak). What's more, I was able to share with them the fact it had been more than five years since my last hospitalization!
Unlike their peers, physicians and other health care professionals, I knew not only the ins-and-outs of the disease, I most importantly knew how they felt. It was a very rewarding experience for me.
At that event, I had the honor of meeting a very special young lady by the name of Aaron Washington who has been cured of Sickle Cell Disease through bone marrow transplant. Her mother, Joyce Washington, who is now a dear my friend, is co-founder of the FACE Foundation, Inc.(Family Advocacy Coalition for the Empowerment of the Sickle Cell Community). I have been in constant contact with her and am now offering my talent and time to doing all that I can to aid and assist in bringing about awareness, forming alliances, raising funding for research and support services while serving the SC community.
I have much respect and admiration for Joyce. She is more passionate about the cause than anyone I've ever known or met, myself included. I asked Joyce why she works so tirelessly for SC...why she still does what she does...seeing as her child no longer has SC. She said to me, "How dare I walk away and not do all I can? He saved my baby! I have to do this. I have to do my part to make sure that somebody elses baby can be saved. I can't walk away when there's so much to do. How dare I not thank Him for saving my baby?" Her passion is inspires me!
Turning 40 also forced me to "come out of the closet", so to speak. I never expected to see 40, so despite things working out for me and my life coming together nicely, I really didn't plan for 40. I knew that my turning 40 had more to do with God's purpose for my life than it did with me. Wretch that I am, I didn't deserve 40. I knew this, so I asked God to show me the path that would lead me to my better self. I promised the Father that if He opened the door that I wouldn't be afraid to walk through it. I asked Him to show me how to help someone else cope so that they could not only see 40, but also plan for a life well-lived. I asked Him to take my hand...to give me the courage to speak up and out about sickle cell anemia.
Prior to my 40th birthday, I hated talking about having SC. Wouldn't do it...no one understood anyway and I despise pity! Talking about it just wasn't something that I did...it wasn't an option. If I wasn't sick, I didn't even acknowledge the fact that SC existed. For the most part, I've always looked healthy and but for those who knew me well, no one really knew that I had SC. I have always struggled with having SC and not being "normal". ALWAYS.
There were times when I'd get sick and not let anyone outside of my family know...so much so, that I actually would rather push people away and out of my life instead of fessin' up to having this painful and debilitating disease. Sad, but true.
That time has come and gone. I'm Coming Out! With 40 came a certain freedom and acceptance that I don't quite know how to explain. I no longer worry about feeling different. I am different, but I really like who I have become. I have had a good life in spite of SC. Yes, it has been quite difficult at times, but I'm still here. Yes, I have had crisis after crisis over the years...some so severe that I actually prayed for and welcomed death...but I am still here! It is not because of my doing but because the Father has made it so.
Yes, now is the time to own this new found freedom. I'm Coming Out! I am no longer ashamed of having SC because it certainly doesn't have me! I am coming out of the closet because I need to be a voice for those who likewise suffer from SC but have yet to find their voice. I'm Coming Out to lend an ear to those who need someone to listen who actually knows what its like to deal with SC. I'm Coming Out to be an advocate for the support of funding for research and support programs for those living with SC. I'm Coming Out because I have a story to tell that God kept me here for 40 years to tell!
Yes, indeed! I'm Coming Out!.
Its not all good, but it certainly ain't all bad either!