Sikcell: People living with Sickle Cell

We still Hope

Parents with Guilt; Treatment with Guilt; "Sicklers" with Guilt.....Is this the guilty disease???

As a parent of a child with Sickle Cell when we see them in so much pain you feel guilty, and wish you could find someway to take it away. Most of us never expected to have or ment to have a child with Sickle Cell. No Regrets! Our own families that should be there to support us sometimes makes us feel guilty; so we have to walk away. Most of the time this is were we find growth in our self and become strong caretakers.

Everyday life with Sickle Cell there is unspoken risk, risk of the unknown, but because it's unknown it's okay? Why when people talk about some forms of treatments especially Bone Marrow Transplant, we who know that there is a daily unspoken risk, make the known risk seem much more worst than the unknown. We most times make others feel guilty, for looking @ this approach. We show support to the unknown but none to the start of the known.

Some "Sicklers" at one point or another have felt guilty for not being able to do something, be somewhere or what ever the "guilt" may be. Most overcome this to be strong individuals.

At some point with this disease there is some form of guilt...
Why can't this "special" community of Sickle Cell, caretakers, patients and our surrounding community embrace each other from the beginning, and show there is no need to feel guilty. Autism is embraced, why not Sickle Cell?
Please share your thoughts and feelings, caretakers and patients and supporters.
God Bless and keep the faith.

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Permalink Reply by Ronald Ragin on September 18, 2009 at 11:17pm

I don't know if I ever noticed my parents talk about my disease until I was away in College. I am 55 and was treated for being anemic...because the physicians (white) in my rural community did not know what SCD was. My parents received tapes from Howard Univ. from a family who had 2 daughters, all dying before 15 years of age. The tapes explained to them the disease. I was never told by them I had SCD as an adolescent. I played and did all things young boys did while growing up. My limits was what my body told me and I learned to listen to it.

In high school I played varsity football, basketball, and pitched on the baseball team. I was expected to do those things and took pride in doing them. I was also the first Black President of my Senior Class. To say the least when I felt bad I rested. I never knew, although they probably discussed it in their bedroom, of any discussion about this being a terrible disease. I think this is what kept me fighting. I had scholarships to Tufts, Brown, Michigan, Boston College, NYU and many other places but declined them because my parents did not want me to go to a cold weather climate. Again, protection without me knowing

I learned of my disease, SS, when I enrolled at Howard Univ. in 1972 the year Nixon signed into law Sickle Cell Screening. I was shocked to say the least. I didn't let it stop me. I went to class and worked (U S Senate) .I asked them why they didn't tell me I had the disease, and they said; "we wanted you to grow up like every young boy'. If something happened, I guess there would have been some guilt.

Today I am retired. I have a wonderful wife and three grown childeren. My hospitalizations have increased and my parents who are in their 80's are there to relieve my wife when I am hospitalized. I thank God for them because they are always concerned but I have never detected guilt. I don't even think guilt has ever come up, we just prepare ourselves for being ready to fight my disease. I can empathize with those who feel the burden from this disease. I know, after traveling all my life I am now unable to travel and my family has curtailed their travel. Yet, I want them to go and I encourage it when I am feeling well or have someone to be with me while they travel.

We talk about the Good Life I have lived and believe me it was good. The pain may be today but the good times were yesterday. I have many more good times ahead...I just take them one at a time. So Hang In There.