Look Me In The Eye

I wrote Purple Dawn recently and Lydia (@Kuchiiiii) sent me this her true story after reading it. Enjoy and share

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My name is Lydia.  I lost my dad when I was very little. I was 9 years old, he had cancer and everyday I miss him. I’m glad I have my mum and sisters and i am forever grateful for the love and support they show me every single day because being a parent and sibling to someone with sickle cell anemia is hard emotionally, physically, financially and psychologically.

I’d like to say I grew up like all the other kids but there were days when this obviously wasn’t the case. My condition makes me a walking drugstore with all the medication I am forced to take such as Paludrine, Nicosan, Folic Acid, B complex on a daily basis. I get stuffed with painkillers such as  Ibuprofen,Tramadol and Pentazocine.
These pills help me through my periods of crisis. In case you’re not familiar with what that is though, its triggered when some of my malformed red blood cells get stuck and have trouble traveling through my blood vessels as a result of their “sickle” shape. Sickle cell anemia is a hereditary disease. It affects the red blood cells by shaping them abnormally. I hate pills but they help me to cope with all the pain that I experience during a crisis. The only way to truly cure my disease is through a bone marrow transplant, which replaces the “factory” in my body which is responsible for producing red blood cells although it is advised that this procedure is done at an early stage of a sickle cell patient’s life in order to avoid risks, complications and even death.

I manage my condition very well and a lot of people in my life don’t even know that I have this disease, I don’t tell people and probably because I do not look like a sickler its a bit easy for me to hide it from the world. I’d like to say this disease does not affect me mentally but its not completely true, it doesn’t hamper my logic or reasoning but its emotionally draining. Most people are ignorant about this condition and those that aren’t seem to have a subconscious feeling that I’m a liability. I was in a cab once and 2 people were talking about how useless the life of a sickle cell patient was, about how parents of sicklers shouldn’t be encouraged to send the kids to school because they’ll die eventually and at a very early age and are by default a wasted investment. I come across this everyday, people who feel that we are walking corpses…but here I am. I don’t tell people about my condition because they automatically feel pity for me, they treat me like a feeble baby made of glass. I feel that people who talk to me and know I have this disorder always try to be nicer to me or treat me differently just because I have this condition. Although I realize that the empathy comes from a good place and they are not all really doing this out of pity I just want to be treated normally. A lot of people wouldn’t shy away from that kind of preferential treatment but most times it gets annoying, I get depressed sometimes when I know that I got my way simply because the world sees me as a sickly person.

I haven’t tried to take advantage of such treatment simply because its not who I am. I think it’s foolish for people to automatically believe me when I say that I didn’t do something wrong, when I easily could have and always give me the benefit of the doubt just because I’m a sickler. On the flip side, as a result of my condition my attitude towards life is in my opinion a lot better than the average person. I realised at a very young age the possibility that I could very well die whenever I have a crisis, its easy to make a lot of plans when you’re in good health but its not the same for me. I take life a little more seriously and I was forced to grow up really fast and I have not for one day taken my life for granted. This has brought me closer to God and makes me appreciate each day and everyone in my life a lot more.

I only wish that I could do more to enlighten more people and change their mind-set towards this and have a more optimistic attitude and point of view, never underestimate the support you get from those around you…a little love goes a very long way I promise.

My condition may have taken its toll in one way or the other but I still have my dreams and aspirations. I’m a graduate today and that’s just one of the many things I have to be grateful for.

Death is a grim reality for all of us but its a lot more real to me and as a result my relationship with God, my family and friends is one more thing I hold dear to me, I believe that by taking care of myself and trusting in God I will live my life to the fullest. All I ask is to treated like the next person, I don’t need any constant reminders that I’m this way. I’m only human and a lot of times i get depressed about having this disease. I have come to accept that just recognise that unlike all the other “normal” people, I have a very interesting life story to tell…one I know will be a very long story, I am a very unique person, with a great outlook on life. I do have a right to life just like any other person. Things I do differently are mostly things I have already mentioned.

I’m an optimist and this attitude has brought me this far…I’m curious to see how far it will take me. I’m thankful and very appreciative of the imperfect person which I am today, there’s a reason for everything and a purpose for everyone including me, I’ll find mine eventually.

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7 thoughts on “Look Me In The Eye

  1. sisijacobs says:

    This truly is inspiring, I’m glad you’re living life to the fullest. I have no idea what it’s like but this is a wakeup call, every day is a blessing and should not be taken for granted. Thanks Lydia for sharing your story

  2. ABCD says:

    I lost my Sis 2 weeks ago, she was 38yrs. She had the usual crisis, we got her drugs and was taking care of her at home. She hates going to the hospital and had bluntly refused to go. I massaged her that morning and told her when I come back I will give u a warm bath, called her 12. 11pm and she said “I am dying”, I rebuked her and told her she can’t die. I called my Sis to massage her and beg the neighbours to take her to the hospital while I leave d office and come back. She died at 1.12pm.

    The pain is unending. I feel I should have done more. My only consolation is that she is free from all pain and sorrow.

    I have seen her writh in pain during her crisis and the bold face she tries to maintain. It hurts, this hurts but as we all say “God knows best”

  3. hello says:

    God will heal you and you will live veryyyyyy long in Jesus name.

  4. kovieparker says:

    How come I’m only just seeing this? My best friend is a sickler so I think I kinda understand where this post is coming from. Yes, you are right, our empathy comes from a good place. Initially, I didn’t know how to relate with her normally, I treated her like my kid sister although she is a year older than I am. Seven years on, it’s easier now. I love her for her, as a friend and sister. I don’t do things for her out of pity, but from a place of love. I still get scared whenever she has a crisis, that never gets easy, but my faith is stronger now and I trust God.
    I admire your courage. Live your life. Enjoy the sun. Tomorrow isn’t promised, not for you or anyone else for that matter. You don’t have it worse, we are all doing the most while we can.
    (I hope that didn’t come out wrong?)
    Kisses!

  5. 0latoxic says:

    This must have taken some amount of courage to write and to share and that is in itself a reflection of how strong you are as a person.

    God bless you and continue to preserve you.

  6. No one, who doesn’t wear your shoes everyday, can begin to understand what you go through…honored to know a bit about you and the strong woman you’ve become…He that has kept you thus far can’t leave you now and in that, we take comfort…keep being you and stay in Him *hugs*

  7. Kuchiiiii says:

    I was a bit skeptical when Blue asked to put this on his blog because I didn’t want any pity and I still don’t. Thanks guys for all the prayers and kind words,God Bless you all. I’m glad I could share this story with others. Ara love thanks darling :*. ABCD I know how you feel,I’m so sorry I lost my only brother to sickle cell,it sucks like hell. It is well with you and your family. She lived a good life I bet. Kovie nah its ok lol your bestie is lucky to have you in her life. I know she knows you love her genuienly and not out of pity. Olatoxic you damn right I’m one strong woman thanks to God almighty. I have to go now before I get all teary eyed. Bless you all!!!

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