Hi ! It took me years and days to make an effort to write this. At this point of life, it has become utter most important because all I seek is to set myself free. Free from what I thought I was or what happened to me or I wish I want to become.
P.S. Its not a #METOO post. I know that is the most important thing these days and it takes a lot of courage to express those things.
I am writing this because I don’t know what else to do.
So here it goes,
The major important part of my childhood or what stuck with me the most during my childhood years is the medical issue I have/had. I was diagnosed with SLE/ Lupus(https://www.healthline.com/health/systemic-lupus-erythematosus) in year 2000. I didn’t really know what it was back then. SLE is an incurable autoimmune disease that affects the cells of the body to work against the bodily functions.As it was an incurable disease and doctors were too unaware of what medications to provide so they gave me STEROIDS I was unaware of what was happening to me but my parents knew how harmful steroids were.
So they stopped my allopathic medicines and went for Ayurvedic. I used to live in Dehradun before and in Rishikesh(few kilometers from Dehradun), there was Ramdev baba’s ashram where he used to provide ayurvedic treatment. We started our treatment that side and it went on until one day my legs started swelling and my thighs had red patches. Unable to understand what was happening. We went to various doctors.I was in 9th grade I guess and I had sanskrit/Hindi class when a kid comes and tells the teacher that “Principal is calling Keertika with her bag”. I was super happy that I had to go home and bunk the class. Unable to understand the events,I reached home. My dad came home after few minutes and started crying. I still remember the words he spoke and how he couldn’t stand after uttering those words. He told my mom,”Neena,(my mom’s name) iski toh Kidney khatam”. I didn’t understand what was happening.Please someone explain me what was going on!
My mom-dad took me to Chandigarh. As my Mausi lives there, they suggested me to go to PGI Chandigarh.I remember how I had a craving of Bread Pakoda that day and I am telling my mom that please after the doctor’s visit can you make Pakoda for me. My mom didn’t say a word instead nodded. I didn’t go home.
As it was a Sunday, doctor told my parents to admit me as soon as they possibly can. My Blood pressure was shooting and they have to admit me.I have a hazy image of how my mom-dad keeping me on stretcher keep on circulating in the whole hospital as there was not a single room available.We all spend the night on some corridor.They gave me anesthesia and a lot of injections were inserted in my body.I was blank what happened after that I just know my mom was making me eat food which was saltless. She requested my mausi to make bread pakoda for me. I guess I remember eating saltless pakoda that day.
Next day, they shifted me to the hospital.I counted my days in that room.Different patients to my right and left. I remember my dad sleeping on the floor and my mom with me. On raining days I dreamt of running from this place.
I can’t take snoring so my mom used to ask the nurse if please she can tell that patient/care taker to stop snoring. Every morning I used to chant Hanuman chalisa and pray to God to please do some magic and please for just that day.For that one particular day, doctor doesn’t insert injections on my body. I had no long term prayers,just at that moment. And one day it worked,I was chanting Hanuman chalisa and nurses started laughing saying “Iska Chalisa start ab doctor aaya toh”. Luckily for that day doctors just gave me medications.
I remember every part of my body swelled. There was not a single space for them to inject those injections and take my blood. But Doctors have their own methods. To my horror, they took blood injecting near my private parts. I cried a lot that day.
I remember my bua and cousins visiting me in the hospital and how everybody is telling me I look different. I had no idea how I looked.I showed them how my hand has all injections and how it pains wherever you touch.
One day,doctor’s told my parents they have to do my Biopsy in order to see how much Kidney has been damaged. Doctor’s said they will put needles inside my body to see and then I will not be able to move for 24 hours.I was super scared. They gave me some anesthesia and I don’t remember a single thing.
I have flashes of how my parents used to rush in stretchers at mid night and some ECGs run over my body.
After 20 days, they discharged me from the hospital saying that I have to visit PGI every month for a follow up.My body was a circle. A full circle. My face was all swelled(side effect of steroids and SLE) and because of biopsy my stomach was filled with water. I look like a pregnant woman.Doctor told my parents that they can put injections in my body to take the water out or it will gradually flush out. Having seen all these pain already,my parents chose the later option.
I still remember how one day I woke up at my nani’s place in Dehradun and went to Bathroom and I was shouting as loud as I possibly can to my mother saying ki paani nikal gaya.It took more than 2 months for that.
But before that , As I skipped school for 20 days, nobody recognized me after coming back.I still remember kids giving me nicknames on the corridor with the way I look.I remember crying a lot and not sharing anything with anyone.I started hating myself.I ran district level so they gave a certificate after a month, when I went to collect the certificate the teacher told everyone this is not that girl who ran.I was embarrassed.Everyone laughed.
I just had my friend,Jaya and my cousin Disha rest nobody wanted to talk to me. My then best friend made fun of my disease by spreading all stupid things across.I was losing all my hair because of medications so my teacher suggested my mom to cut my hair to boy cut and my mother agreed.
I remember joining a Guitar class, and how the teacher asked me if I was a guy or a girl. I stopped going to the classes.
I clearly remember my 10th farewell,we had to wear a Saree. Jaya came to my house.We both dressed nice and clicked picture.One of the activity of the farewell was every boy has to choose a girl from the class and dance with it. I was very anxious. I prayed please someone pick me.Someone do please.None.Nobody picked me.I was sitting alone on the chairs while the whole class was dancing.All alone.To reduce the embarrassment,I ran and hide between some faculty members. Then and there I told myself you are not beautiful and that stayed forever.
I spend the entire next year on Bed. Either vomiting or just trying to stand.My fever was not coming down. Doctor’s thought I had TB. So they started giving me injections for that(As per what I remember).I still remember my quilt and me. How every part of my body hurt with just moving. I was unable to stand on my own feet. People said I have arthritis. I stay in a joint family,I clearly remember my whole family went to a marriage during daytime and I was alone at the house with the servant with not even an ability to make my body shift.I remember it as clearly as it happened yesterday.
As ayurvedic ditched us and allopathic was a combination of Steroids,Blood pressure medications,kidney medications etc. I heard my mother, her brother and my dad talking about my kidney medicines that it has a side effect which can cause cancer. Or was I dreaming?I have no idea.The memory is too hazy to distinguish itself. My mother suggested me to start Homeopathic.Failed.We started Naturopath, he told me to stop eating non veg and he gave me his own diet which was to be very frank very difficult to eat.I cried,prayed and eat. 2 years and the blood reports still the same,we gave up!
I clearly remember during my 10th board,I was mentally exhausted.I was unable to sleep.I still remember it was Holi time and all I was craving was a sleeping pill.We tried music,my mom laps,the lights anything that can help me sleep but I couldn’t.I was starting to become super anxious.I remember calling my brother(As he was in Bangalore that time) that “mera syllabus khatam nahi hua and Disha jo mere se padhai mein achi nahi hai woh toh kab ki padh li.Bhai,mein pagal ho rahi hu”.I remember how my cousin called me a pagal at that time.My parents rushed me to PGI chandigarh neuro department and they told that Nephrologists gave me a very high dose of steroids and its the side effects of it. That mental state still is crystal clear in my head.
Ayurvedic,Allopathic,Homeopathic,Naturopathic, Everything failed on me. Dad read an article on the newspaper of Stem Cell Therapy one day. My parents left no stone unturned for my medical.We went to the hospital and doctor told me my case is critical so he has to do stem cell treatment which was around 1 lakh rupees and Oxygen therapy every weekend.My brother shifted to Australia then and he helped us with the money.I was at TCS,Gandhinagar at that time.I used to come to Baroda every weekend and inject oxygen in my body.After these treatments too,my blood report said the same thing.I lost hope. Doctor told me to listen to healing meditation and think that I am healing. He also suggested to have one more stem cell in case that might worked. My brother and my parents again arranged for 1 lakh rupees and help me inject artificial cells in my body.
Few days before my Teach for India joining, we did our blood tests and it was getting worse.Allopathic doctor suggested to not use my left hand as much because they will do dialysis on that hand.
I cried.I cried a lot.
I don’t want my body to be on machines.I told my brother that I will die but I won’t let my body be on machines.I tried committing suicide too once,i just couldn’t take that pain back then. My brother told me not to worry we won’t do anything.If nothing permits we will do transplant. But we left it as it is and I went to Teach For India.
I loved Teach For India because I just forgot my pain.It was a different life,nobody knew anything about my past life and I was starting afresh.I didn’t tell anyone about it.
I used to go home for my vacation, cry looking at my test reports and come back to Mumbai and continue with my life. Gradually all this inscribed in me, I started believing everything. Not beautiful/not enough/nobody likes me.My insecurities started affecting my relationships. I wanted somebody to see me,validate me,love me. It took me years to understand that I was/am waiting for my own validation. To accept my disease/my face/my body/my life.The steroids and SLE made my face all round(If you look at my childhood photos you won’t be able to recognize me).I exercised and lost a lot of weight. I remember how my childhood slam books are filled with my hatred towards myself.I love writing so I wrote/cursed myself.I even wrote God cursed me.I used to look at the mirror and ask my mom which is my actual face as this one is medications face.
Recently,I went home and did my blood tests and the reports are all critical but I didn’t cry.Maybe I accepted the disease.May be.
My parents are worried about my marriage as my dad thinks nobody will marry me if they know about my medical.He suggested that we will hide some parts but I said I won’t.
Okay,So recently i started JIVA Ayurvedic treatment .I stopped steroids after the stem cell. I take Blood pressure and kidneys medicine daily.
It’s been 18 Years!
And here I am, I am writing this thing to get this out of my chest and accept it. This made me doubt myself.Every step I take in my life makes me demean myself. Not seeing my self worth is reflected in how everyone else sees my self worth. It affected all my relationships. People come and say anything they want and I believe them because that what have been happening to me from last 18 years. I never broke up with anyone. I blamed myself for everything.and that is why I am here, writing this today.Not for anyone at all but just for me.
I just want to let it go,so that I can start on a clean state.Afresh!
I am still learning my self worth and trying to stop my the self blame game.
For the people who know, for the people who don’t, it’s really difficult.I got mixed responses when I shared my story. I have no motive to write this story here in order for you to read.My motive is to take it out and gave it the space to breathe and let go.
I am learning.
My only motive is to set myself FREE.
<I dont want to share any photos here as it will be reflected in Google.I have some with me for the close people in my life>
Thank you 🙂