I am trying really hard to do as the Good Book says, Be joyful in hope…faithful in prayer, but what I really feel right now is OVERWHELMED! I have been getting my hands dirty...so to speak...trying to make a difference in our community. This past weekend I had my very first board meeting with FACE Foundation Inc. and all I can say is WoW!!

There is so much that needs to be done that I find myself wondering if I can really make a difference. There are not enough hands on deck – point blank. Period.

Part of me is still struggling to get over the guilt I feel for only just now getting involved. I have helped to perpetuate inaction by being inactive. When you know better you are supposed to do better. I've known better for quite some time, but I just couldn't force myself to go outside of myself. I took pride in being able to pretend so well. Being well for so long made it very easy to maintain my out-of-sight-out-of-mind attitude.

The better part of me knows that I can't just stick my head in the sand and pretend the problems with SC don’t exist. I can't just think it away, wish it away or even pray it away. Some things just are so it behooves me to get busy doing something...my part, but its quite overwhelmingI

What’s even more overwhelming than realizing the gaps and wishing to combat the many disparities is the fact that since I've been living and breathing SC a lot lately, I find that I am constantly thinking about sickle cell….that's not like me. I hardly ever think about sickle cell. I didn't expect and don’t like. It’s not comfortable at all, but to do what needs to be done, I can not avoid it. I have to talk about SC. I have to share and bare witness to not only the many excruciatingly painful bouts with crisis, but also the emotional and psychological toll that it has taken on me for the last 40 years.

After spending my days researching, corresponding and talking about SC, I'm all wired up and thinking about my mortality. Sure I think about how well I am and have been for quite some time, but I have also been reliving many painful moments. The fact that I am in the prime of my life right now certainly is in conflict with the statistics on life expectancy with SC. I mean, I have thought about my body being worn out after the years of being beat up time and time again, but nothing like what I have been experiencing lately. It’s mind-numbing and almost makes me want to go back to my "normal" life where SC was not at the forefront of my mind all the damn time. It was just simpler to not deal with certain realities...but it doesn't take away from what is real or the work that must be done.

One of the chief reasons why there is such a lack of understanding in the SC community is because "we"…and by we I mean those of us that have sickle cell…don't want to deal with it. We don't want to talk about what makes us uncomfortable or what we feel makes us not quite right. Keeping itfFunky - SC SUCKS MAJOR ASS!!!

But, what is the alternative to speaking out? SILENCE. Been there. Done that. Don’t want to go back. Can’t go back...I have a six year old niece with SC and even though I don’t know what to do to make things better for her in her, I know that I have to do SOMETHING. My not wanting to deal with my issues surrounding SC isn’t going to aid her one bit.

***sigh***

The problem is that I have the heart and mind to move forward but I honestly don't know how to go about inspiring and effecting change. To say that we need to educate our community and to advocate for improved healthcare and treatment is one thing - sounds good, right? But, to actually get smack-dab in the middle of the numerous discrepancies within the healthcare system for SC sufferers is another animal all together. I feel completely overwhelmed!

Uuuuuugh! I’m having a moment. Just wanted to vent a little. Tomorrow is another day. I will dust myself off and try again.