Recently, I was browsing the channels when I saw a show “Totally T-Boz.” For those of us who grew up in the era of the female singing group TLC, that title is intriguing. Especially, when you know that one of the group members has Sickle Cell. T-Boz (Tionne Watkins) battled with Sickle Cell all of her life and recently dealt with brain tumors and many other setbacks as Warrior. I was particularly excited to see a well known figure acknowledging the pain of Sickle Cell and more importantly someone living with Sickle Cell. I thought, finally, someone would bring light to the pain of Sickle Cell on a greater scale. Finally, a voice!
Then as I thought about it more, she is A voice, just one. While I am excited to see that she is bringing some kind of awareness to the #1 blood disorder in America, she can not be the only one! In order to make a real impression on the hearts of America, it will take more than one voice. Personally, I have watched other communities rise from the ashes of non existence to world wide recognition. Seriously, every one knows what pink stands for in the store. Even though he was recently dethroned, everyone knows about the Live Strong bracelets. What are we missing as a community of Warriors and Warrior Caregivers? Why are we waiting for someone else to do the work? Why are we chasing waterfalls like the song by TLC that don’t exist unless we create them?
After pondering those questions for a moment and researching, I realized that we lack support within our community. I know, this is something no one wants hear but it needs to be said. Seemingly in the past, we all wanted to stay in our corners and live life the best way we can. Unfortunately, this is impossible. As a community, our ignorance and the ignorance of others is costing us more than we are willing to pay. Our Warriors are staying longer in the hospital and enduring the labeling of others as drug seekers and addicts. They are suffering from the lack of adequate funding to provide better care for them. Recently, I found out that Sickle Cell is the #1 blood disorder in America but it is the least funded. Seriously, This should anger us to move in great ways; however, it only angers us to move in small steps and get mad at the other communities for their profound steps toward world wide awareness.
In order for us to receive the support and recognition needed, we must stand up and be counted. Recently, I joined a Sickle Cell Support group. We had a break out session with the Caregivers. At this session, I met a young couple that had a 5 year old daughter with Sickle Cell. It was their first time coming to the meeting and they had a lot of questions. They were surprised to know that they could not count on the Doctors to know everything for their daughter. They were equally surprised to hear that they would need to teach the doctors in some cases. With a puzzled look on their face, they were overwhelmed and I could tell. So, I volunteered to help them in any way I could. The next question is the one that I was most interested in answering. Why don’t we have the information we need? I said, “Lack of Support and Consistent participation.” I had been to several meetings at that point and every time I attended I met a new group of people. Very few people attended repeatedly. This was also the truth for another group I attended. As a result the numbers where very small and it is more difficult to get support for a Community of Warriors that is not supported by its Warriors and Warrior Caregivers. With that statement, they vowed to attend the next meeting and I pray they are able to.
Nevertheless, Support and Consistency seems to be a common thread in all Communities that wish to be heard. As the Community with the #1 blood disorder, we should have no trouble rallying support. Our struggles should propel us to show up to every meeting, rally on the steps of every state house, and donate to help stop the Pain of Sickle Cell.
-Mrs. Tamara Adams
A Warrior’s Caregiver!