Thank God for giving me the spirit and the strength to fight. That spirit was born out of sheer, determination, unbelievable pain, disillusion, love, frustration, and faith…all of the faith I have. Interestingly enough without it, I could be somewhere very different. The knowledge that I have stood at a real fork in the road, acts as a humbling reminder of the life that could have been mine, all the same. Without His Love…I believe with all my heart, I would not be here to tell you anything at all. I am confident in my belief that the Lord Jesus Christ had and continues to have his hand on my life and I thank God for my praying mother Christine Arrington and my no nonsense father Nathaniel Bailey, Jr. My faith, this fight, determination and the guidance I received from my parents, are and always have been my foundation to move forward despite any circumstance that comes fourth being a person living with Sickle Cell Anemia and Beta Plus Thalassemia.
Waking up every morning I have to remember first,
“1: I WILL lift up my eyes to the hills – From whence comes my help. 2: My help comes from the Lord, Who made heaven and earth. 3: He will not allow your foot to be moved; He who keeps you will not slumber. 4: Behold, He who keeps Israel Shall neither slumber nor sleep. 5: The Lord is your keeper; The Lord is your shade at your right hand. 6: The sun shall not strike you by day, Nor the moon by night. 7: The Lord shall preserve you from all evil; He shall preserve your soul. 8: The Lord shall preserve your going out and your coming in From this time fourth, and even forevermore.” (Holy Bible, The New King James Version, pg.405)
Then it is all about remembering who I am at the core, keeping it front and center in my mind. Though I am a work in progress growing changing and learning; I do NOT proclaim to have all the wisdom I need; but I am always seeking and open to understand how to do this better, how to be stronger, how to thrive instead of merely surviving this disease.
My daily reality for the past several years has been 14 hospitalizations totaling over 300 days in the hospital. Every day, I lay in any hospital bed is utter isolation. I feel cut off from life and the feeling of having the sun on my face and the freedom to move about without dragging an IV pole around in an ugly hospital gown. Each day feels like a bitter battle between my senses and my spirit. All my senses told me you are immobilized in gut wrenching pain. What can you do? Who are you but this? Care for our patients fluctuates hospital to hospital. In some hospitals I remember THE BEST Dr.’s and Nurses who took pride in their work and did everything they could to ease my pain and encourage me. Then, there were those hospitals I remember shaking uncontrollably, screaming, sweating through my pain only to hear the voice of a nurse yelling at me to:
“Try and be quiet, because you are scaring the other patients.”
I AM scared! This is the sound of anger, fear and pain, like your bones breaking not once…but over and over. Sometimes, my anger took over and I would YELL RIGHT BACK! Wishing I could produce blood or some other evidence to somehow validate my need for pain medication that some Dr’s deemed unnecessary as there is only my word, my history and my pain. I YELLED BACK, full of anger with all the power I had left. If only to let you know that I fully intend to survive this and stand up and look you in the eye, and dare you to say it again!
Then someone else would ask:
“ What is your pain level Ms. Bailey on a scale of 1-10”
My response was sometimes,
“50…Can you not hear me screaming?
Finally, when the calm ushered over the pain, my thoughts went to what was I doing before I got here How long, what have I missed? I have to catch up, instantaneously! There was no peace, not for long anyway. I constantly tried to invent ways to stay informed and present in the world I felt was passing me by, every hour of each day in the hospital and at home recovering. I was losing control. Keeping it one hundred; I had lost control and did not even know it. I struggled between the possibilities of jumping back into the world I knew prematurely, which involved a career with a growing fortune 500 company in Dallas, TX. At a mid-management level my aspirations were to go further. I knew God had given me this path and I was determined to follow as far as God would allow it to take me. I had my eyes set on a career growing professionally and personally within a company I felt God placed me. I felt humble and ready to work hard like my mother and father did to earn, sew, live and prosper.
Instead, God put two people in my life in late 2010. First, a well-known leader in the fight against Sickle Cell Disease, Mrs. Phyllis Zachary – Thomas; we spoke twice. The value of those conversations with her cannot be measured. Phyllis encouraged me to fight this disease, but not in anger as I had been doing. Rather, to fight through awareness, education and activism. Secondly, SFC. Farron Dozier, aka What’z Da Count on Sickle Cell Trait Awareness. (www.wdconsctawareness.org) Farron created an internet radio talk show centered toward awareness and activism. He invited me to speak for the first time publicly about my experiences as an adult living with SCD. It was God at work. That platform was empowering. I had never experienced that feeling with SCD and it was a turning point. I am grateful for both Phyllis and Farron and all the community groups on FB for embracing me and so many others.
Finally, I believe God for a complete healing which will conclude at least my fight with SCD. The faith continues with my every breath, every experience (this one included), every piece of information that I can find to assist others, spread awareness and educate others living with SCD. To let others know it IS possible to sustain your faith through this fight; survive and most importantly thrive.