I want to live and I need your help | Milaap
I want to live and I need your help
60%
Raised
Rs.1,50,685
of Rs.2,50,000
60 supporters
  • SJ

    Created by

    Sophia John
  • S

    This fundraiser will benefit

    Sophia

    from Vasai Virar, Maharashtra

UPDATE 1

At the time of making this fundraiser I had just signed a contract for a project which would have brought me a tidy sum. I poured my soul into it. Unfortunately, the company that hired me has lost the project and I am scrambling around for a job again. I had only asked for the amount that was strictly required to pay off my debt. Since I had been counting on the project money which I can no longer get, I have fallen short again. I am raising the original amount so if possible, please share this among friends and help me reach the new amount. Thank you for all the support you have shown me so far.

Saari umr hum, mar mar ke ji liye
ek pal toh ab hamein jeene do jeene do

Song: Give me some sunshine (3 Idiots)

Translation: 
All my life, I was dying as I lived
At least for a moment let me live, let me live

Dear World,

If I die before my time, will you mourn me? Will you sit up and take notice of what I’m trying to say? Will you miss the stories I would have told or my hilarious sense of humor? Will you miss my excited smile, my silence, or my insightful thoughts? Will you miss my kindness? Will you miss the love I want to give? I guess this is a suicide letter from the countless people who lost the battle that no one should have to fight. The battle of basic human rights. The battle for a normal life. The battle to live with dignity and independence.

-{excerpt from an anonymous letter}


What happens when you don't have a baseline of steady income, no property, support, and no job? What happens when your medicines cost 10,000 per month but you have no income? How do you put food on the table? How do you afford medicines or pay rent? These questions actually don't have an answer. 

I am a woman suffering from Fibromyalgia, Diabetes, PTSD, Clinical Depression, Anxiety, Insomnia, Vasculitis, and Asperger's Syndrome. 

Many of these are invisible illnesses and the heart-breaking part of it is that sufferers slowly become invisible themselves and the next moment they're gone. We don't have external injuries and  and gaunt faces to attract sumpathy. We aren't hooked to IVs but we're still struggling to stay alive and achieve relevance in a world that is ableist and uncaring.


What is Fibromyalgia?

It's an invisible chronic pain illness that causes debilitating body pain, immense fatigue, and brain fog. It's not a terminal illness and yet... it can be.

Here are some animated videos I've made in case you want to know more about Fibromyalgia 

Fibromyalgia Awareness: https://youtu.be/EkiAxLTpDm4

Spoon Theory explained: https://youtu.be/U94-8_kWo4Q

My story so far...

(TLDR: Repeated domestic abuse until 30 years- Diagnosed with Fibromyalgia,  Diabetes, Depression, PTSD, Anxiety, Insomnia, Vasculitis, nerve damage- abuse got worse- mostly no income- buried in debt- hoping for a fresh start at life)

I have never really known what it is like to live a normal life. I was subject to domestic abuse at a very young age. The person who gave birth to me and should have protected me was the same person, who made me, a child, wish for death. This continued for many many years-
 wearing me down in ways that I could not comprehend then.

I tried leaving my house for a place in Bombay ostensibly for shorter commute but my symptoms were already manifesting. First, I was diagnosed with Diabetes then I started getting debilitating pains in my body that rendered me unable to sit at my desk at times. I was diagnosed with fibromyalgia an invisible chronic illness that causes widespread pain in the entire body, fatigue, and brain fog. I was fired for not giving my 120 per cent to a job that paid peanuts.

When I moved back home, the abuse worsened, I was told that I didn't deserve to be treated like a human if I couldn't earn. When I finally could not take the abuse, I ran away. Friends helped me with funds to live as a paying guest. I got freelance projects, since my career graph was chaotic. Due to necessity, I had to take up any job I came across so I don't have linear career progress. Full-time jobs were out of the question. Freelance jobs were sporadic. Most people have a financial baseline that ensures that there will at least be food on the table. As a person with no family support or property, I have no such baseline. when I say I don't have money I literally mean it. I have spent countless days wondering how to get my next meal or my medicines. My medicines are such that if I try to stop, I get really horrible withdrawal symptoms. A month's worth of medicines cost around 10k per month. This has been a source of major stress to me. I have only survived so far because some people were kind enough to help me with my finances. An NGO called Chronic Pain India came to my aid with the medical help side of things. 

These days I think a lot about death. No, I don't want to die. I want to be able to live, love, laugh, and create things. Yet, I feel invisible, as if the equation of the world has no place for me. The logical solution would be to die because for the life of me, I can't see how I'm ever going to reach a financially stable condition. I don't want to but life makes me feel like I have no choice. There's only so much one can take. 

I've never really had the time to stop and do things the way I want especially after I moved out. I feel so lost. I'm smart, very creative, and a hard worker yet I am unable to hold a job. 

My financial debt is a vicious cycle that never stops. To pay bills for basics like food and shelter, I have to borrow money. When I eventually get paid for the odd project that I am able to pick up, I have to return the money I borrowed but by that time other expenses have piled up which leads to more borrowing.

My current status: 

Lately, I have been living day to day. Sometimes I have no idea if I will be able afford a meal or if will get the medicine I so desperately need. I have to scramble to ask my friends for money and each time, it kills my soul bit by bit. It feels like the walls are closing in on me to crush me. I feel like my mind is being strangled, I feel like I'm being pushed towards an ending that I do not want. 

Diabetes: I was diagnosed at the age of 28 but I think I've had it for many years  before. The thing is, I cannot even take proper care as a Diabetic. When I went through all that trauma growing up, I turned to food, especially chocolate, to calm down. Now if I try to avoid sweet and oily stuff like I'm supposed to, I am unable to function for long. I get anxious and restless. Everything is just too much to deal with. To top it all, insulin is super expensive. 


I get Depression spirals far too easily. At rock bottom, I become catatonic. I find it difficult to move at all. My back feels like there is an open, vertical sword wound on my back and that my energy is being sucked out. Sometimes I can't make eye contact with people and sometimes my speech gets affected. Sometime I cannot smile with my eyes. 

Fibromyalgia pain feels like there's a network of steel spreading throughout. It feels like there are little hooks in these wires that dig into my muscles and suck up my energy. Breathing becomes painful and . At worst, I cannot bear even soft sounds or a little light because it feels like I am being punched. I can't go to a hospital for treatment because there is no treatment. My only option is to rest as much as possible and wait for the flare up to calm down. This happens whenever I am stressed. 

The tools of my trade as a writer, my fingertips, have nerve damage. Which means they hurt when I type. They hurt a lot. My meds are moderately effective but not always.


Even so, I have not given up on a single  dream. Painful fingers or not, body pain, depression, brain fog, and fatigue or not, I want to get there. 

I want to write books and become a famous author, I want to write stories for games, I want to love someone with all my heart, I want a family, I want to travel around the world, I want to have a lot of meaningful conversations  I want to make as many friends as I can, I want to raise awareness about invisible illnesses, I want to show people that Fibromyalgia doesnt have to be the end.  I want to seize life not cease it. 

Every couple of days the walls close in when I can't gather money for medicines. Not only will my symptoms reappear without medicine but I will also go into withdrawal. Fever, delirium, brain zaps and pain so bad that no medicine will work except for the one I've been taking. This is dangerous and can actually lead to death. If you've ever experienced this, you know what I am talking about.

I have lost friends and family because of this. I don't know what to do anymore and I feel like there is no space for me in this world.

I have pending debt and medical expenses that amount to rs 10,000 per month. My medical debt equals 90,000 and I'm currently trying to get settlement on both my credit cards. Credit cards that I took only to be able to pay rent and for basic essentials.

To conclude,
With everything, there's just too many things to deal with, much like trying to hold water in my fist. Fibromyalgia gives you fatigue and brain fog which makes it difficult to think. It makes it almost impossible to deal with multiple things(illnesses). You could compare my body to a computer that can only work one tab or it crashes. I have vasculitis and I haven't even had the time or mindspace to address the issue. 

I want a chance to live and experience life without always struggling for food and medicines. I'm an intelligent, creative and passionate person who wants to leave a legacy behind. With your help, I can overcome the obstacles to realizing my full potential. With your help, I can truly live and help others do so.  

I hope you will give me this miracle. 

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