Recently, on LinkedIn, I read a post from someone that shares my diagnosis. I remember growing up asking my mom “why do I have this?” and her replying, “God has a purpose.” Well, here I am 36 years later, thanking God for my testimony.
I was born with Sickle Cell Anemia, a blood disease that affects red blood cells. My blood cells are in a sickle shape, so they carry less oxygen to my organs and throughout my body. This results in a tremendous amount of pain, dehydration, and other problems that come from oxygen deficiency, anemia, and a low life expectancy.
I thought, connect with him. So I sent out a request and two weeks later no response. Hmmm, I thought. Here we are, strangers, but bonded by the state of our birth and a disease that many still do not know about, and yet, there was no connection. He told a story about how doctors told him he wouldn’t live past 15 but how he celebrated his 21st birthday! That is awesome and the same story I heard. Funny how he is a few years younger (based on his birthday in his profile) than me and the life expectancy had already increased, I was happy to hear that and even happier to know that they are still raising the life expectancy. I was told that I wouldn’t live past 10, but I did, then doctors said 13, but I did. Doctors said the reason why was because of the weekly blood transfusions. But I knew better.
Then fear set in because one of my sisters died at 21 from Sickle Cell Anemia. I was so afraid to turn 21, I literally did not celebrate. My mom bought cake and ice cream, but I didn’t want a party, I was waiting for Death with no one knowing. He didn’t show, so I thanked God for saving me and increasing my life expectancy.
When I was about 23, I went to a Sickle Cell Convention and met people with this illness in their 60s!!! But they had a different type. There are those with the type called AS or the trait. Relatively, healthy and they may never experience a crisis. There are those with the milder version called SC, who are able to function with some drawbacks and probably spend a few days in the hospital. Then there are those like me with the SS type, who spends most holidays, birthdays, and days in pain or hospitals.
I remember spending every July 4th in the hospital and on some occasions being wheeled to the roof to see the fireworks. I remember having my birthdays in the hospital but being too sick or too weak to enjoy it. I remember meeting lots of famous people too, though. They always came to visit and left a card if I was sleeping or to give a teddy bear and say hello if I was awake.
Anyways, I was curious to know which type he has, to learn more about his experiences, and to learn if he is honestly living. I have lost touch with many of my friends that share this illness and attended the same clinic as I did, either to an operation that was recommended to me or to a side effect of breaking edge treatments that I could have gotten. When I did not receive a response, I was going to write him but he has a Premium subscription, and I do not find it worth it to pay just to connect with someone that could not accept my invite, despite him being an active member on LinkedIn.
In life, I have learned, that I do not need to connect with others to validate my experiences, even though it could have been nice to exchange stories. Today, I do not look like this disease is shut up in my body, but it is there. My condition has moved from severe to almost trait characteristics, leaving the doctors baffled. My original Hematologist didn’t recognize me during the ride we shared on an elevator, some years ago when I called him by name. Once he recalled who I was, he noted that I looked healthy, mentioned that I should thank his treatment of weekly transfusions and smart decisions, but I thanked God and we parted ways. That’s how life is.
I need to part ways with people, experiences, and the need for validation because most times, the ones I grew away from did not believe in what God could do for me. During my time with this illness (since I was 8 months old) I have asked God why me, when will it end, take me home with Him if He loved me, and to stop me from suffering. This illness has caused me to lose confidence in myself, my looks, lose power in my words, and the power to set boundaries. It has beaten me down to the point where I didn’t know if I could stand up on my feet. But I did!
I got up. I would like to say that I have this illness under control and have taken back all it has stolen from me, or that I have become the person that I dream I could be if I was healthy, but I haven’t. I am still working on it and that’s what this journey is about. Learning how to become the person that God would like me to become. I am healthier, receiving blood transfusions (2 pints) once a year instead of 2 pints weekly, I am able to have a job and call out rarely (thanks to work from home) instead of losing a job because I was in too much pain to keep one for longer than a week. I am able to function like a regular person in society, rather than being confined to a hospital bed and spending every holiday in the hospital. I don’t remember the last time I was hospitalized, and I thank God.
Right when I was at the end of my rope, truly at the end, I was 16 years old and balled up on my bed waiting to leave because it was the day of a transfusion. I heard a voice speak to me and it said, “do you believe you are healed?” I replied, “yes…”, thinking maybe I woke myself up because I was talking loudly in my sleep. Then the voice continued, “you are healed.” I ran upstairs and told my mom, “I believe I am healed, I do not need this blood transfusion.” She said, “thank God. Are you sure? You know what could happen. If you believe then I believe.” Together, we believed! I have never felt or heard a voice like that in my life even to this day. I told her about the voice speaking to me and how I knew it was God, she said we’re going to tell the doctor we will no longer be getting transfused regularly.
We went in and they were ready to transfuse me but we called the doctor in the room and told him, I will no longer be getting transfused weekly, only as needed. He called Child Protection Services, the Police, and the Social Worker. Then he proceeded with I was going to die within the next month at the longest because I do not have enough blood to keep me alive. I stuck to it, I am healed, I don’t need it. He stuck to his story, they separated us and asked me if my mom put me up to this, was I abused at home, and who came up with this decision. After telling them, I was healed and I don’t need these transfusions, they made my mom sign a paper that said she is denying my treatment and she knows the risk.
She signed and we cried when we made it to the car because we knew that God had healed me that day. I was loosed that day from this illness that controlled me. I was free in the Blood of Jesus of believing I would die without a transfusion; I was loosed from the things that bound me! I can’t explain how that felt other than I was lighter. Of course, there were days that I doubted I was healed, like when I had another pain crisis, or when I turned 21, but God, nobody but God! Looking back, it took a while for my physical body and mind to realize that a chain was disencumbered that day. Here I am 36 years old and doing all of the things that I was told I would never be able to do: drive a car, own a home, work a full-time job, travel, and enjoy my life. And just think, this isn’t even my best life, because I am working on embodying the person that God wants me to be!
So, I won’t be hurt or shocked when someone does not want to connect with me, eat with me, or talk to me because my story doesn’t need validation from anyone. God has disencumbered another chain that I didn’t realize was holding me until I wrote this blog on 5/6/22. Thank you Jesus Christ, and God the Father for keeping me and setting me free!
Disencumbering my Chains 