Post

Alopecia Universalis - (Partial Salvation)

I was born with my disease Alopecia Universalis a hairloss disease that removes every hair from the body, causing complete permanent baldness, through the grace of God himself I somehow survived my declining spiral to oblivion. The main reason for it was due to the fact that I was three to four months premature, as I've said without God I wouldn't be here especially after my family prayed and prayed desperately for my survival, their prayers were answered and the doctors were amazed of my survival beyond the medical capabilities available in the late 90s, the doctors even admit that it was a miracle beyond their power after giving up on me, having tried everything from fluids, incubators, injections, medications, and blood transfusions. My survival rate being born so early is statistically and critically very poor so it would've taken a miracle for me to be among the living.

I needed something to fight death and my disease boosts my immune system to fight off hair follicles so that explains why I was able to survive on a medical note, also the disease isn't genetically built in my family so, it was gift from the Almighty himself though soon I knew true pain and suffering for my journey to survive through my life. My hair initially fell out at the age of two when my mother went to brush my hair, it frittered away until nothing was left soon after.

Later on in life, this caused much pain and misunderstanding of the world around me and those who interacted with me negatively. I was scared of what had become of me, confused of why I was cursed with this disease and broken when I endured intense bullying and name calls which shattered how I viewed people for a very very long time. I prayed to God that whoever has this life altering rare disease copes with it better than I have.

After a while people began to ask me questions pertaining to my appearance, some have asked the typical questions. "Why are you bald?" "Do you have cancer?" "Did you shave your hair?" I refrained from giving them the name of the condition because it wouldn't matter, they wouldn't know what it was so I dumbed it down to a simple. "A major hair loss disease that's permanent." I wished someone had asked questions like how does it make you feel to be different from everyone else? Or does being bald affect you in the public? Questions like those that would open up doors for me to release how I've dealt with this or what I've been feeling for so long.

This carried on until the end of High School. I had so much grief when trying to grow accustomed to being different physically and socially, times of the dark brought me miserable tears and absolutely terrifying levels of depression, at times I wanted to surrender and just give up. I would've never guessed being so physically different could result in SO much negativity, really surprising. As a result of the pain and misinterpretations I closed off from people in general, shunned myself away into the blackness. I bottle up my emotions and my feelings about how I feel about things, and it's difficult at the same time when I want to vent and tell others how I feel, but I just can't bring myself to do it.

I don't damn those who harmed me verbally or physically in fact I silently forgave them, for I completely had no idea why they would attempt to demoralize despair, humiliation, torment, abuse, apathy, intolerance and prejudice upon another human being. I withstood all of it and tried to gain a higher understanding, never retaliated because I knew they were taunting and mocking me for a reason, just wasn't completely keen on the exact cause of the discrimination upon me, it was as if I were being hated for no reason at all. The best thing they received was a cold icy stare from my eyes, they were emotionless years ago, people had a difficult time reading my emotions, called me hollow. But there were few who saw pain, sadness and even tears though I never desired the need to cry. I was numb to the majority mistreatment so it blocked away what I was truly feeling which in terms...resulted in my emotion cap.

As to how I manage it? I don't, I refused wigs, ridiculous products for hair growth and anything like that. I just accept my appearance as it is.

I have no clue how to really sum up everything but for the latter. When I last visited the doctor's in regard to my condition which was three years ago. He asked me whether I accepted the condition as it was or not considering there's no known cure for it. I overtime began to accept the results of the condition and see it was it was. Nothing can be done about it, I'm cursed to live with it forever so I told him. "Yes I accepted it." He applauded me, gave me a compliment saying the bald look suits me lol. I didn't really believe that but maybe he's right? Who knows.

Though I wonder to this day why I was spared when so many have died premature. I was born into this cruel and hateful world on death's bed, even with the transfusions I wouldnt've survived. It was the grace and mercy of God that I was able to survive today. I wonder what purpose he had set for me. Perhaps show people my disease doesn't make me any different from any other human being, race included. I can still care for people even after being shunned and ridiculed, that love of philanthropy will always exist within me, that I can accept myself and have belief in God because of my survival and that the entire time he was bestowing me the graces to survive the human conditioning. I wasn't alone in my suffering, because someone was there telling me to wise up, resist temptation of self-destruction, keep pushing on, never give up and paths will be made straight in adversity. To this day my mother calls me her miracle child, and the doctors within the hospital I was born in call me a fighter.

I had an idea that someone was watching over me over recent reflections of my dreary days, also learning that anything is possible if you so have a grain of faith in yourself, God, or whatever you choose to believe which I absolutely respect. But I personally know God put me through this experience to learn and foster wisdom, be strengthened in character like you would with upgrading the quality of a sword with a blacksmith and teach others humility, perseverance, understanding and more. I know, he will use my acquired strength to provide hope and empowerment for those who are too weak. My condition could be far worser than it is and I am grateful for my life. I think today, without my condition or my experiences because of it. I would not be the person I am today.

This is my story. Thank you for taking a leap into my past. I hope those who read this learned something. I sure have and it's brought me great strength and perspective about my life and the path of others who couldn't see where I came from.

Respects and blessings to the cyber/real world. From Lushiro~

I would also like to share a few scriptures that I believe correlate with my journey (skip past them if you like):

(John 15:18-27) - "If the world hates you, just remember that it has hated me first.  If you belonged to the world, then the world would love you as its own. But I chose you from this world, and you do not belong to it; that is why the world hates you. Remember what I told you: "Slaves are not greater than their master.' If people persecuted me, they will persecute you too; if they obeyed my teaching, they will obey yours too. But they will do all this to you because you are mine; for they do not know the one who sent me. They would not have been guilty of sin if I had not come and spoken to them; as it is, they no longer have any excuse for their sin. Whoever hates me hates my Father also. They would not have been guilty of sin if I had not done among them the things that no one else ever did; as it is, they have seen what I did, and they hate both me and my Father. This, however, was bound to happen so that what is written in their Law may come true: "They hated me for no reason at all."

(Luke 6:22-23) “People will hate you because you belong to the Son of Man. They will make you leave their group. They will insult you. They will think it is wrong even to say your name. When these things happen, know that great blessings belong to you. You can be happy then and jump for joy, because you have a great reward in heaven. The ancestors of those people did the same things to the prophets.”

(John 9:1-5) As he went along, he saw a man blind from birth. His disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind? “Neither this man nor his parents sinned,” said Jesus, “but this happened so that the works of God might be displayed in him. As long as it is day, we must do the works of him who sent me. Night is coming, when no one can work. While I am in the world, I am the light of the world.”

 

(1 Samuel 16:7) But the Lord said to Samuel, “Do not look on his appearance or on the height of his stature, because I have rejected him. For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart.”

Lushiro Lushiro 18-21, M 122 Responses May 4, 2012

Your Response

Cancel

This was so beautiful. God bless you ♡♥

Im so glad that you're a believer in God. It's REALLY important to remember that God Loves you. He/she will always receive you in his/her hands and hug you, because you are their child. (And you're a miracle) ... Dont let the world bring you down. Misunderstanding people are stupid and want to "fit in" into the dumb model of society. You are better than that. Remember that although you dont know me, I LOVE YOU TOO!

Amen! :) Love you too sister! :)

Written and expressed your experience with this so well. It gave me something to think about for sure. My faith is weak so my ideas do need yo be challenged a lot. I have become quite the skeptic; especially with my issues I have with feeling God is there and really cares for me etc. I always hang on to my relationship with God but the strength of what was there between Him and I has been tarnished. I can relate to some feelings you wrote of as well so thanks again for posting this at one time.

Thank you for reading! I want you to remember that our faith relies on Trust and Confidence in God/Christ no matter what happens in this short life :) Be strong, the journey is nearly over...if you want to talk about your faith-walk I am more than obliged to do so! I can give yourself a nice boost :)

Thanks, but I am a tough "egg to crack"?...IDK I just have a lot of hurdles. Ones others say I can get over, but some I know better. Feels like a tangled mess. The worst thing is others do have things just as bad if not worse and my scenario just seems the worst it could be for me. Little boosts then maybe...? Anything helps so thanks.

You're such an inspiration. Although life has been a struggle, I'm glad that you rely on your faith in Christ to see you through. You mentioned your parents praying for you. I've often thought my parents must have prayed for my well being quite earnestly before and after my birth. God has shown me so much grace during the most difficult times in my life. Later, it was my trusting His strength to see me through.

Our God is so amazing isn\'t He? :)) His love travels beyond sufering and pain because he suffers with us against the sorrows inflicted by this cold world, people shouldn\'t be asking \'Why does God allow pain and suffering\', they should be asking \'What kind of God allows himself to experience the same pain as mere mortals?\" Jesus wept didn\'t he? I am going with God weeps too...and feels all the pain that we do, he\'s omnipresent right? He is always with us...even under the greatest of tragedies and calamity...that gives us more comfort that he is present even then and now, holding us through the fury of the storm.

Well thank Christ you're alive... The world needs more good people. ^.^

Agreed we need more smiley faces too :)

ohh i remember reading this, youve had this up here for a while. good stuff man honestly i dont think anyone would want to suffer like anyone else has but its nice to share things so that others can comment and share things about themself as well :)

Youve read this before? Interesting lol...there is one thing that makes us universally human. We suffer. Its not about denying it. Its not about pretending its not there. Its not about comparing suffering, ie \"at least Im not starving in Africa\". Theres no prize to who suffers more. We just do. :)

i also wrote another story which is about brain fog and psychology of mind control if you\'d like to read it. in reference to my featured story and in my defense i\'m aware of what happened and everything so i\'ll get over it eventually.

Takes time for sure.

ii have a book called \"**** happens so get over it\" with a printing of a toilet on the cover and every page. which is actually more of a personal thing for myself. i never tell someone that lol

1 More Response

Praise God for His faithfulness! You've got quite a story and one that will allow you to encourage many people that all is not lost (which obviously you are doing). Be blessed!

:))

This story gets a gigantic wow from me. WOW!!!

Haha what a shocking reaction.

Well, with 415 responses so far, I had to say something that was at least a bit different.

Haha fair enough. :) God certainly used this story for harvesting and bearing good fruit. :)

You're story and life is so inspiring. You are so strong. To be honest, I am so in awe of you that I am not sure what to write to convey my emotions to you. Thank you for sharing your story.

Thank you for reading! :)

Lushiro u r truly inspiring and i admire you. Your story touched my heart or many different reasons. My father had a serious heart condition which caused him to be physically different he was bullied and put down as were you. My dad suffered his whole life because of his condition. My dad wasnt suppose to live past his twenties but he did. He proves to everyone what he could do. My dad was a very religious man and incredibly talented. He was a famous fiddle player and he touched many peoples heart. As have you. My dad recently passed away on may 6th of this year. He died at age 56. And he died impacting everyone around him. I would love to get to know you. You seem wonderful:)

I am really sorry for your dad...I definitely understand his position. But he's a definite role model for you! And for me too...wish my father were more like yours. :) Live on in his image and make him proud :) He's up there watching, smiling, guiding and whispering dreams as you sleep. But...I am far from wonderful lol!

Thank u very much! I truly believe my dad is with me everyday... And yes you are too wonderful! I wouldnt have said it if i didnt believe it were true.

we are his firstfruits:)

Amen :) (John 15:1-27) - “I am the true vine, and my Father is the vinedresser. Every branch in me that does not bear fruit he takes away, and every branch that does bear fruit he prunes, that it may bear more fruit. Already you are clean because of the word that I have spoken to you. Abide in me, and I in you. As the branch cannot bear fruit by itself, unless it abides in the vine, neither can you, unless you abide in me. I am the vine; you are the branches. Whoever abides in me and I in him, he it is that bears much fruit, for apart from me you can do nothing. ...

see I'm not the only one who.admires you. :) and your so inspiring.to be a better person.

Lol seems that way :) We light up areas of people's lives that need shine and polish :P

Who is we? lol :P but yes ya do.

Yes you too silly! lol

Haha not me :) your the silly one

3 More Responses

look on the bright side, you will never have to wash your hair or wear hairnets!

lol you are so silly.

It is true, I HATE hairwashes or hairnets. and no more drag when riding a bike

Hairnets are usually resonated with cafeteria servers O.o

I was working at a Little League food shack.

Were there hairnets? :D

unfortunatlty yes. you do not know how bad a black hairnet looks in blond hair.

Hahaha!

yeah, your special

5 More Responses

I will give you the truth: Your appearence is fine, I do not see anything wrong other than those people insulting you. That is just part of life, there will be good and bad, unfortunatly you have runt in to alot of bad. One time when I was in the military, I was shot in the arm, It left a spot on my arm that would not grow hair. And I have a natrally hairy arm, so it looked funny.
Sometimes we just have to laugh at ourselves I do it all the time because it is funny.


Yay, I am your 400th comment!

Thank you for sharing doolittle, sorry for your incident ._. comes with being involved in the war and turmoil I guess. And congrats :P

and one more thing, you baldness is way better from what I saw...

You have no idea...

... A hairless horse and German Sheperd

1 More Response

I see why you often seem more mature than your age would suggest. You are one of the young people that I have come across on EP who has been through rather extreme things early on in life. If there is such a thing as good and bad karma then I am sending you some good Karma because that's all I can do. :-)

Thank you very much Wraith. I appreciate your comment and sentiments a lot. :) Karma to me is like a flip of a coin in life, you can land on the good or bad side, too much of both isn't a good thing, but too little of either is just as bad. Balance is the key. :)

Before even reading this I thought you are one heck of a young man. Now I know it for sure. Thanks for sharing your story and for uplifting the name of Almighty God and giving witness to His truly divine love.

Awww thank you sir. :) It was my pleasure, be blessed my friend! God is with us. (Immanuel)

There was a Green Bay Packer (american football) who had that same issue. Played for years and was well loved in our community.

Hang in there.

I surely am. And wow that's awesome!

Its awesome that you recognize God. You seem like a very mature soul. This is an inspiring story, thank u so much for sharing it. I'm tempted to share it w my son. God bless and keep you and yours. Great scripture too.

Thank you! Share it with whoever you can :) I hope it inspires your son somehow.

You must look wonderful in drag.

Keep dreaming lover boy :)

Ah you got me there, good game, sh!tface.

You hurt me feelings :( I'm telling mom.

>:(

1 More Response

I have had thinning hair on my head since my teen years. Friends used to call me "receding _____" (where the blank is my first name). Now nothing grows up top. For the past decade I've had to wear hats in the sun to keep from getting burnt. Yet now it doesn't bother me since I'm almost middle aged and hair loss is common. My hair is also greying. If I let my beard grow it is full of grey hairs! I feel old.

In some ways you are lucky. Hair can be annoying. It retains moisture and this breeds nasty smells and rashes. In response, I've been shaving as much of my body as possible. I cannot reach my back, however. It is an endless struggle and I can never win. And I hate having to shave my face every morning. Sometimes I nick the skin and it bleeds like hell. You are blessed to never have to worry about shaving!

I'm very sorry you had to endure ridicule while young. That is just not right. I wish you the best.

Bald men are attractive too. You keep going - and ignore the insults.

:)

Very touching story. I hope you live as long & a blessed life as possible. Much love & hugs for you.

You are really kind to me. Thank you! :) Love and hugs back.

I wish you the best & have a happy day. I'll talk with you later. Love you very much too.

A powerful account,touching and well written throughout...
until the ending!
I've no problem with attributing your recovery to God
In my opinion: Blasphemy starts with quoting from the "Book of myths" John 15:18-19 :(

The scripture means something to me...but thank you for reading and understanding.

Wounded from the start
With every drop
Comes Strength Beyond The Usual

Those who have listened
Applaud You
Your Courage is Theirs

Shared, you have this moment
Nods to you
To what else may come.

This was wonderful to read...highly poetic. :) Thanks for sharing.

being hairless? that's legendary! lmao

Haha!

God bless you Lushiro, your a strong believer. May your story affect others the way it has me.. <3

:)

Thank you for sharing, and having courage in yourself and in God :)

:)

Thank you for sharing this story! I hope everyone here reads this and learns from it :)
Think of the money we both save on shampoo! :D

Lmao too funny! You're welcome. :)

I wish i could give you a hug :). You're so strong and brave. Blessed you.

Aww thank you...(hugs)

May you only find the best from now on.

Thank you ^_^

I know how it feels to deal with people who are jerks,But I think it really is good that you accept yourself for who you are,somethings are just out of our control,You really are a strong person.

You are too! We all are :) Btw I linked you to the wrong story LOL!