Guarding my secret

Today was a bit hard on me. My body always reacts negatively to the variation of temperature. I often joke my body is my meteo. When the weather abruptly switches from hot to cold and then from cold to hot, or when it is going to rain, I have pain in my bones. I had more pain today then yesterday because the sky looked overcast. My back hurt quite a bit and I experienced fatigue, thank goodness I did not have class tonight.

I am sitting on my bed trying to get ready for tomorrow's lecture and working on my outlines, but I can't sit still. I am fidgeting as if my movements could cast the pain out of my body. I often have high spirits but when I am trying to study, and can't concentrate on my task because the pain in my back is interferring with my ability to read and process information and can't help but get angry at my body. It feels like a betrayal. I wished my body would just obey my command and work with me. I like to think that God has bestowed so many blessings upon my person, nonetheless when I hurt, it is difficult for me to fight back my frustration at the constant pain I experience on a daily basis. This feeling never lasts, it only crosses my mind for a few seconds then I am back to my joyful self.

To me any pain that does not necessitate an hospitalization or a trip to the ER is not a big deal. I feel such an intense feeling of gratitude when every morning I get my children ready for school and am able to take them to school. To me everything is well if I can make them dinner or bake a cake or cookies for them. Today, when I picked up my kids from school, I was looking pretty pale from all the discomfort that I was feeling my oldest daughter asked me "Mommy are you okay? You look sick." I replied "I'm okay honey, I am just a bit tired." My answer did not seem to satisfy her, she kept asking whether I was alright, then I told her in a little bit I would be fine. She kept looking at me intensely like she usually does when I don't feel well. I smiled at her and she stopped her inquiring looks.

I always try my best not to let my children see when I am in pain, I don't want them to remember that their mom was sick. It is hardest in the morning. 9 times out of 10, I wake up with pain, but before getting out of my bedroom to get my children ready for school, I always make sure I have a smile on my face regardless of how bad I am feeling. I could say that life has trained me well. Since I was a little girl, I learned to smile when pain was tearing through my bones, I learned to sit still in class with pain. I carried that habit with me into adulthood. I also did it because of the shame I felt each time I became sick. Sometimes I would rather suffer inside than tell a soul that I was not feeling well and needed to be taken to the hospital.

In my country, having Sickle Cell Anemia is seen as a shame that families try to hide. Because my culture thought me to be ashamed of having SCA, hiding my pain became a way of guarding my secret. To this day, I still have friends who do not know I have SCA. When I was little,my mother used to tell me not to cry because she did not want the neighbors to know I was having a crisis. In my country SCA is so prevailant that people can usually tell when someone suffers from the illness.

I remember the first Christmas I spent with my in laws. My husband and I had been visiting his family. I began feeling a throbbing pain in my legs the day after we arrived at his mother's house. It was very cold, I had complained about the cold in the house, but after she failed to acknowledge my complaint, I decided not to bother her with adjusting the heat. I kept taking tylenol hoping that the pain would go away, even though I knew it was the kind of pain that lingers until it becomes a bad crisis and I also knew Tylenol would not cut it. But I did not want my husband to see me sick. We had just been married, I also did not want his family to see me sick. I kept that secret to myself for a few days. I was very scared not of my potential crisis, but of the embarrassment I would feel if his family found out I was having pain. I remember being so embarrassed the first time my father in law mentioned my illness. I was so ashamed I felt like hiding, I did not want to discuss it with him or anyone else. That had always been my way, not dicussing my illness with anyone.

On Christmas day, we went to my husband's family gathering, I was in misery, the pain was becoming so unbearable I could hardly walk, but I faked being alright. But, each step I took felt like a knife cutting through my legs. I still did not disclose my discomfort to a soul not even my husband. I had just been so used to hiding my crisis to the world that I did not realize that my husband was a part of me. I just did not want him to see me having a crisis, that shameful thing that caused me to feel undesirable. After a few hours, we drove to my father in law's house. As soon as we got there, I knew I was in trouble, the pain was so hard it was hard for me to fight back tears. I went straight to the bathroom, took the hottest shower my skin could possibly whisstand without being burn. As I washed tears began rolling down my cheeks. Back then I was still pretty mad at the Lord for taking my brother and my sister but I said a prayer. I said "Please dear Lord, don't let me have a crisis here, please not here, not in front of my in laws." I got out of the shower and went directly in the guest room where we had our stuff. My daughter was just two weeks old, I think my husband had her or somebody else. I was in so much pain that I could not think straight. I laid down on the bed, my husband came in and found me crying, he asked me what was wrong. I could not lie anymore and I told him I was having a crisis. Even though I was in pain, the shame I felt in that moment was undescribable. He left and told his dad's girlfriend they needed to get me to the hospital right away becasuse I was having a crisis. In the van that took me to the hospital, I covered my face, I did not wnat anyone to see my pain, my tears,and my shame. I cried becasuse I was hurting so bad, but I also cried because they had seen me like that in all my vulnefrability. I was mad at God for allowing my body to expose my shame when I was trying to guard my weakness. The two weeks that followed are a blur because I was dosed up with heavy duty painkillers. The only things I remember are cries, pain, sleep, pain sleep. I missed my daughter so much I thought I was going to go crazy. At two weeks old, she was sleeping at night without her mommy to nurse her to sleep. That thought did not help, I cried until the painkillers nursed me to sleep.

I think it was the first time the reality of my illness hit me with being a mother. Before I never really thought about what could happen if I did not make it. Until I met my husband, I never quite felt loved or needed, I always thought no one would truly miss me, but then, I realized my daughter would miss me horribly. I spent sleepless nights crying over my poor child. Was I selfish for bringing her into life knowing about my medical condition? Was I no different than my mother who I was resented over the fact she kept having children knowing they could end up with SCA? (I am the first of seven) I asked myself a thousand different questions. I stopped crying when I realized she was my gift from God and that he sent her in my life for me to enjoy her. If he did not want me to enjoy motherhood and be there for my children, he would not have made me a mother. I decided to simply love and not question the future. My husband once told me when I was having another bad crisis. "God did not send me to Africa to meet you and then take you away, you are going to make it." I did make it.

My husband tells me God gave me this illness to shape my personality. Sometimes I agree with him other times I don't. I know that being constantly sick has made me much stronger than I would have been have I not experienced all the tribulation my illness has made me go through. Furthermore, I have an incredible ability to persevere in my difficulties regardless of how unsurmontable they may appear at the time, for I know God always see us through.

My faith helps me see the end of my trouble each time I am faced with a new challenge. All orthopedic surgeons I have seen up to date have all been quick at telling me to get surgery to help cure or resolve the Avascular Necrosis I have on both shoulders . At some point when the pain in my shoulders's joint seemed unbearable, I gave surgery my thought and considered going through with the procedure.

At the last minute, the Lord put a wonderful orthopedist surgeon on my way and after his thorough examination of my case, he told me he would not feel comfortable opearting on my shoulders given a number of circumstances. For one, he told me that I was way to young to have a shoulder replacement sugery. He told me in my particular case I needed the humeral head and the glenoid replaced. However that was not all, there was a catch. A shoulder replacement surgery is not a one time procedure, for often times it is necessary to replace the prostesis a few years down the line, which means putting me under, going in removing the former prostesis or implant materials and installing new ones. By doing that, each time they would go in they would remove more bone mass in order to fit me with a new implant material. (Just hearing him talk about the whole thing me my stomach pretty upset). Then he told me given that I have low oxygen from Sickle Cell Anemia, putting me under involves some serious risks on its own. But the one factor that made me decide not to undergo the surgery was the recovery process. I have three kids and my youngest one (3) is one the laziest kid I have ever seen. She only wants to be carried around and I just did not see how I could get away with not carrying her. I was not sure I could be able to function without being able to use my hands.

So far I am happy I did not undergo the surgery. I learned to live with the pain, it is quite uncomfortable at times, but I would take it over the pain I get from my crisis.

In Christ