Today I was in an EKG class with 2 other Nigerians who just happened to both have kids with sickle cell. The guy, his daughter of 9 months just got a successful Bone Marrow Transplant and is pretty much 'cured' of the disease. The lady, her daughter of 9 years has been dealing with it and she's determined to do everything in her power to get her daughter on the BMT list.
I'm mad at my parents for not trying harder. I'm mad at them for not pursuing finding a viable treatment and cure for me like they pursued their education, careers and religious mission. I'm mad that I'm 26 and no longer eligible for BMT due to the many transfusions I've had. I'm mad that my parents just accepted what the doctors told them back in the 80s and didn't do any additional research on their own. I'm mad that my parents decided to seek path of medical management instead of a cure. I'm mad at my parents.
See the thing is, one of their friends had a son with sickle cell and they flew him to the UK to get the BMT done back in 1984 and he doesn't have the disease anymore. So they knew about it...that it was a possibility but they let the illusion of not 'having money' stand in their way. Not having money didn't stand in the way of them both having doctoral degrees but it stood in the way of me kicking sickle cell to the curb. I have 3 sisters and none of them have ever been tested to see if they are a good bone marrow transplant match.
My mom called me today to inquire about my health and I was so upset that I almost snapped at her. I know it's not their fault...I know none of it is but I'm still mad anyway. I hope this stone of anger disappears tonight. I hope that I don't end up resenting them for a long ass time.
3 comments:
Don't ... stop yourself now. Also keep in mind that BMT is a very high risk procedure and not 100% successful. Some go through all of that and still have pain crisises
Nah, sis, you don't need any of us to agree with your anger. It's yours. I might agree that it's both justified and unfruitful, but my opinion doesn't matter, does it? Can't now change what already was or wasn't done. It was done, or not. That's it.
Even so, from stuff you've said before [I've read you for a while now :-)], you've tried that letter-writing thing before, where one sets out ones grievances straight and direct without editing or minimizing. That might be useful one more time.
Parents aren't perfect, and I don't know where we got the ideas that (a) they are or (b) that they / their decisions should be immune from criticism. But we presume they love us all the same. And it's too late to send them back to the shop, lol. Successes and failures in one package -- they're ours now. Know what I mean?
I have been doing some research of my own. Since I found out that you had Sickle Cell, I was trying to figure out a way to help you as well. Someone Mentioned the BMT to me and I just hadn't gotten the chance to talk to you since then, but you just answered my questions. I still have hope for you my dear friend. HUGS a plenty.
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