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Assalam o Alaikum everyone, I shared my rare disease story on Soul Sisters Pakistan and Superwomen of Pakistan to create awareness on how to deal with this disease and symptoms positively by connecting to your Creator and people around. To my surprise, it really helped a lot of women. I have been receiving hundreds of messages since then. My purpose is to break the stereotype of hiding any pain or disease because of ‘Log Kya Kahenge!’ I managed to write my story in detail as much as I could. Now that I’ve accepted my disease and want to help more people, we can save more people from depression as well to get this disease to recognize by people coming out and sharing their experience.

Here is the complete story.

There are turning points in your life, learn from them, and when you do, pass it on to people around you. Yes, you might find people who think you’re too loud about your pain and misery, they also might warn you not to share a lot of it because in a world of PERFECTION there’s a less space for people who are differently abled. But I tell you the perfection is only the mask that most of us wear to satisfy those around us whereas the truth is we all have own kind of fear, pain, and heartbreak that we hide.

3rd March 2018; Riyadh- Saudi Arabia:

I was getting ready to leave for my friend’s birthday and all of a sudden I had a severe headache, I could feel the death very close. I told my husband we need to rush to the hospital in the emergency. I was admitted at the hospital for 4 hours and was given paracetamol and first aid, I was half asleep due to the medicine and had no sense of what was happening around. I just tried to open my eyes and next to me was my 2 years old daughter- all stressed out holding my hand and keeping her head over my shoulder.

Meanwhile, doctors suggested my husband to get my CT Scan to be done. In so much sadness, I told my husband we should leave as I’m better than before, this medicine will work slowly and I’ll sleep at home (since I had never faced any headache before so it was new to me and I didn’t see anything big coming) I didn’t know it’s a huge turn to my life. I went home and encountered same severe death pain at 3 AM at night, we again went to the hospital and they admitted me and I went for CT Scan and EEG, reports came abnormal to our shock.

We booked an appointment with the Neurologist at the same hospital as well as 2 other hospitals for the 2nd opinion as both my husband and me was in shock because it was sudden and we could not register it somehow. But the reports at other hospitals came up the same. The funny thing was every doctor diagnosed me with different disease and just wanted to blindly take those medicine they prescribed with no apparent reason on the cause of disease. I felt like a guinea pig now. I felt helpless because the medicine would keep me zoned out and bed ridden with no apparent cause or further treatment plan.

Until now we didn’t open up about it to our families as we thought it’s just a small phase and would go away in a weeks time. But little did we know Allah had other plans for us. One of my childhood friend Issra Khalid was working at King Saud Medical City as a doctor so she told me that I can only help to get you an opinion from Neurologist here but we won’t be able to do treatment or anything as you’re non-Saudi and not eligible. So I went in there just with a thought to get an opinion. But again Allah had a plan, the doctor saw my reports, looked at me and told that I can’t let you go in such bad health condition as you’ll lose trust on humanity and doctors so I’ll try to help you get admitted for further treatment.

I went to ER and after alot of hurdles and questions I was in ICU, I still remember the pain along with tears of joy that finally someone recognized my disease and I’m here in good hands due to the help of Allah. I was planned for MRI, CT Scan and CSF (Cerebral Spinal Fluid) My BP was continuously shooting down as I was not able to eat anything. So I was put on IV fluids throughout. While I was going for my first MRI (it was a closed machine more like a coffin), I remember I started screaming to bring me out of it as it was too dark and contested my head was also covered with the metal cover. I told my husband while crying that I won’t be able to do it, just take me home.

He replied, “how would we know what’s happening in your body as it’s the only way, you have to do this for me and your family. you’re strong do it! I’m right next to you”. A few minutes later I heard the footsteps going out of the room as he wasn’t allowed to stay inside the MRI room. I felt as if Im in the grave, right there I could hear my heart say, that’s exactly what’s going to happen in the next world. You’ll be left alone with your good and bad doings, no one can take that away of this simple test has to be done alone. I started reciting Quran to myself in my heart and the terrible voice patterns of the MRI machine started.

My heart was screaming while those 50 minutes of the test. Next thing was CT Scan, it was contrast, I was kept hungry for 12 hours. After MRI test, I thought to myself CT Scan might be easier but no! The contrast would hurt so much while it goes into your veins to make a clear picture of your brain. it took 30 minutes there too. The last test of that night was the most difficult CSF (Cerebral Spinal Fluid) I was afraid that with Allah’s help I didn’t panic or come out of it instead I told my husband standing next to me holding my hand while having big long needle at my spine, that everything going to be OK Insha Allah.

I knew he’s going to faint as he could see what’s happening behind so I told him to go out and relax. He was shocked because I was uttering these words while was going through horrible test myself. I still don’t believe how did I go through that night but it was nothing but Allah’s help and my loved ones’ prayers and support. We informed our family in Pakistan at that time. Next day my results came out to be abnormal but didn’t lead to any disease that they could rule out instantly so they knew it’s a rare disease and I’m too young for all this. Doctors told me that I’ll be admitted for a long time and they don’t know for how long maybe until we know what’s happening.

My 2-year-old daughter was with my elder sister and I was missing her terribly, staying longer at the hospital was making me drown. Test after test but no apparent treatment to actual disease. I was then given shots of steroid for 3 consecutive days which is considered as a safe medicine to autoimmune and cancer diseases. Believe me, it was more painful than anything else as each drop would give a pain more like labor. One shot of injection was 9 hours long each day. During this time, I was listening to Quran, Surah Rehman, Ruqqiyah, was praying as well even lying down on the bed.

I knew it was a test from Allah so I asked for strength and patience. I had no single space on my hands where I had no canolas or needles attached. After a week, I was able to sleep, At a place a where we expect best of humanity, I experienced people who were heartless. Nurses won’t listen to any of my calls because probably I was too demanding as per them. I was kept on potassium drip which makes you pass urine every 5 minutes but I had not a single nurse to assist.

Whenever I call her, she told me to learn bearing it. I understood she’s annoyed and doesn’t want to come anymore. I saw her detaching my drips so that I move from my bed to washroom, I learned the way on how to do it and would help myself- although I had to tighten the drips with my mouth as my hands were full of needles and I had zero energy. My vision was not clear completely a blur, so the nurse was assigned to help me around but they wouldn’t do that, as watching videos out of the ward was more important that they would ignore any patients call.

I used to help myself. I cried and cried to my Creator as I couldn’t bear this pain anymore, I couldn’t sleep at night even with heavy doses of medicine. My body was immune to medicine anyway. I asked my doctor how long I’ll be here, he said maybe few more months or weeks. That day I told my husband and a friend who planned to stay the night with me at the hospital to leave me alone as I wanted to connect with Allah.

I chose to stay alone on the most painful night of my life because I knew I’ll find Allah nearer to me in my loneliness and I’ll find answers to my questions within myself. Alhamdulillah, I did. After the painful night, I could feel my heart and soul clean- no more questions, no more restlessness. I knew no one in this world even my own parents will be able to take away even a pinch of the pain I’m going through so I decided to keep it between me and Allah. Yes, I decided to make it less painful for my loved ones. That was my choice and it shouldn’t be same for everyone else. And yes I slept that night very peacefully even nurses were shocked and came to check if I was alive or not.

My doctor came early morning which usually he won’t. So I knew he has something to tell, I knew Allah was preparing me for something to come. He told me I have to be strong to listen to it, 8 doctors at a time were standing and told me that they have ruled out Limbic Encephalitis, (Limbic Encephalitis is a disease characterized by inflammation of the brain. Limbic encephalitis is caused by autoimmunity: an abnormal state where the body produces antibodies against itself). To say that it’s associated with cancer as of now in my case is too soon- as my cancer screening was due until now.

He told me all this and I smiled, he was shocked and asked if I heard what he said. I told him yes, but am I going home? He replied, unfortunately, yes you have to as we can not further keep you here because of hospital protocols as I am non-Saudi and this environment at the hospital can bring me into the deep depression. He told me that time will reveal more obvious symptoms so I’ll have to be patient and accept. I smiled again and told him, Allah is kind. I’m going home to my daughter.

My husband came, thinking that doctors have planned for further treatment and I’ll be at the hospital for few months. But I told him with a smile on my face that I am going home. He said to me, but you are in the same condition, you have not been treated. I told him, Allah has the plan, wait for it and take me home to my daughter. He cried because he knew he’s taking his sick wife home where I’ll have no medical help. I came out of the hospital, sitting in a wheelchair, to my shock I could not see anything clear, it was a complete blur. I started crying but my heart could feel the fresh air around and I was happy too.

My elder sister Faiza, May Allah reward her for every single day she served me, until now, leaving her home and not thinking of her own kids for 2 months. During this time, I was on oral steroids and other medicines so that would keep me bedridden. During a normal daily walk, I usually got faint, my vision was the blur, I used to have memory loss and anxiety as well. Alhamdulillah, my best friend Rafea stayed with me at the hospital every now and then and recited Quran next to me. I knew I was blessed, I knew I was not alone.

The fast forward month later, we decided to move to Pakistan for further treatment where my family is, my parents and my in-law’s side, who are extremely supportive. I knew I could rely on them. So I left for Pakistan with my family for good. I had my EEG test repeated in Lahore and it came out abnormal again, probably worse than before. So I was suggested to go for MRI again.

I did get MRI and came home and slept as I got up, to my shock everything was dark, I managed to get my phone from the side table, I clicked on the screen and no light… My heart sank!! I started screaming I called my mother-in-law. I asked her, Amma turn on all the lights. She was shocked as the lights were on, but to made me relax she said the whole house phase is off and there’s no light. I could feel her voice shaking, she hugged me and told to close my eyes… I asked her if the phase is off and there’s no electricity how is A.C. working? She told me not to ask anything and just calm down. She ran out of the room I could hear her steps. She asked my doctor and he said maybe due to MRI her brain optic nerves got pressurized or something but just tell her to sleep back and not to panic.

In this situation, how could I sleep and not panic? I cried, I prayed to Allah sitting and begging Him, do not test me in this way. I won’t be able to bear this. My whole family was next to me, I could hear them crying outside, so worried. Doctors said put her to sleep and next day she will get her sight back. I slept after crying and praying all night but next day too I didn’t get my vision back. I broke from inside, I was emotionally and physically exhausted now but I had faith in Allah. My mother told me to offer Friday prayer as it’s time. I told myself if with blur vision I was walking around and accepted it as Allah’s decision then why not this blindness? even if it’s temporary.

I stood and walked holding walls around using my other senses. I prayed and spent the day with my family. I knew in the other rooms my Amma and Abba are crying and praying for me, my baba and my ammi, my sisters, my family is heartbroken and they are praying hard. My husband was in utter shock not because I was in temporary blindness but because he knew somewhere inside I’m losing it now. But again Allah had planned something for me. So the next day my mother woke me up as I opened my eyes, I saw LIGHT!! I had tears of joy, my sister asked me, can you see me? and I said no, but I can see the light. I could feel her sad again. But I told her I have to offer Nafal prayer, help me walk to do wudu and lay off the prayer mat. She told me to pray while sitting and I said, no I can see the light, and I know it’s an answer to a prayer of one of us. Let me do it.

I sat down after prayer and told myself, the vision will come back slowly don’t stress out. Leave it to Allah as the day passed by night it was fine Alhamdulillah Alhamdulillah. My fine blur vision turned into the perfect vision. Yes, it takes me time to think about my daily chores, I can’t enjoy malls or any other activity that makes the usual person happy. I can’t sir in gathering for long. I can’t go out and enjoy lights. But I’m striving to accept Allah’s plan. Because He knows better and I don’t. I will be going to Islamabad after Eid, to get my Encephalitis Cancer Antibodies screening Insha Allah. Need your sincere prayers.

Just two days later, I had complete memory loss for the whole day, I knew Allah wants to test me more in His own way Alhamdulillah, He did. Currently, I am admitted to Sheikh Zayed Hospital for further test and treatment. My purpose to share story is that don’t let people tell you to keep your disease or pain to yourself, don’t let them dictate your pain and how you handle it because they can’t feel it. Share it with them, tell them how you want them to deal with you and help you.

Don’t let anyone tell you how to handle your pain, choose yourself. Decide your ways to let it go only when you feel you’re ready to. Not everyone is same if the battle is not same then how can the struggle be same? If you feel like crying in front of everyone and that makes you feel better, do it! If no one can take away your pain then no one has the right to tell you how to bear the pain.

When Hazrat Yaqoob A.S lost his son Hazrat Yousaf A.S., he cried for years and years until he almost lost his eyesight. Does that mean he did not believe in Allah as a Prophet? When Allah, Himself has mentioned these emotions in Quran; who are we to devalue them?

He said: “I only complain of my grief and sorrow to Allah, and I know from Allah that which you know not. O, my sons! Go you and inquire about Yusuf and his brother and never give up hope of Allah’s Mercy. Certainly, no one despairs of Allah’s Mercy, except the people who disbelieve.”(Yusuf 12:85-87).

All this left a fear in some corner of my heart about what future holds but I know I’ll get up, again and again, Inshaa Allah as long as my Allah and my loved ones are near and praying. I don’t feel ashamed of my shortcomings, I feel empowered because I’m not living the norm but I’m struggling every day and appreciating every day for what I have now. You should too, let go of anything that makes you or others uncomfortable, let go of your fears, life is too short and it’s not in your control anyway so live and let live. Always remember in life that you can not achieve anything alone, there’s always another person standing behind you, praying for you, supporting you, NEVER lose that person.