Ever since I was a little girl, I dreamt of traveling around the world. I grew up, the dream thrived and I traveled to the places I had always wanted to. I saw new places, I met people, and I became my travel stories. This is what I thought the rest of my life would look like until the day I lay in the hospital and the doctors looked at me and said "I’ll be confined to the bed for the next year and even after that things wouldn’t be the same"
I had tested positive for SLE or commonly known as Lupus.
What is Lupus? It's an autoimmune disease where your body goes crazy and your immune system starts attacking your organs thinking they are intruders. I was surprised to know that I was unknowingly killing myself. What a way to go right?
My only question to them was, when could I travel next? There was no proper reply. I cried every single day and wondered why I got the disease. I blamed everyone from God to the last person I met. This was the real challenge, getting over my own negativity and adopting this new life! I came home, the medications, arthritis, and the constant fatigue took their toll and I reminded myself of the dream every day.
I knew I couldn't spend the rest of my life in bed and miss out on the beautiful places out there. After all, I am my travel stories, aren't I?
It was time to take a plunge into the unknown
This thought gave me the courage to test the waters and go on a 15 days trip to Uttarakhand. Of course, my first travel post-lupus was not going to be solo, so this turned into a road trip with my siblings. The plan was simple, we would do things slowly, sleep and eat at places that were extremely hygienic hygienic, which means that street food and activities that could exhaust me were to be avoided. This instantly threw hiking out the window.
We tried to stick to the plans as much as possible, but have you tried the street food from Delhi? If you have, then you know why Rule #2 was broken within three hours of us landing in Delhi! I forgot about lupus and said a big yes to butter chicken and momos!
Was the trip a good idea?
During the trip, I was treated like a princess. I had my sisters holding all my stuff, picking up my luggage, a taxi to take us all around and all I had to do was just click pretty pictures. Sounds easy enough right? Hidden behind these comfortable scenes was me crying over hair loss each morning, looking at my pictures and then crying over how much weight I'd gained, huffing and puffing after walking a few meters and then, some more crying. On bad days, I ascertained that I was blessed with siblings who would hold my hand and comfort me, point my attention towards the beauty around me, and remind me that the fight was not over yet. I knew that they were holding my hand through all of it and would be there to celebrate the victory.
This was the beginning of a long run, better take it slow right? That's one thing I did not know how to do previously, but now, I had to learn. We had our highs and lows, our set of troubles to face each day. Some days I could dance my heart out and on others, I was bound to my bed. Those days I was reminded how incredibly lucky I was to even be able to get out of the house in the first place. I could see how my future travels would be affected but the silver lining was "I could travel".
So on this trip, we agreed to celebrate my minor victories, like when I walked over a hill for 2 km in heavy snowfall and didn't die, or when I spent 3 hours in the gypsy looking for the tiger in Jim Corbett and didn't complain about my back pain, or even when I liked a picture of me! I never knew a random stranger's compliment on my hair could boost my confidence so much or my sisters dressing me up every morning could be an important ritual.
Nothing can stop me from being a traveller
I lived in fear about how much longer I was going to be dependent on others? One of these days, I would have to go back to work, to reality, to my studio in Paris.
This trip was needed now more than ever, I needed to test my limits or rather test the "new limits". I needed to stomach the reality that this was going to be my new life and that I had to accept my new body, my brittle hair, and my weak knees. After the trip, I chose to brave through all of it. I understood that though my body wasn’t ready yet, my mind was much stronger.
I realised that I need time to heal myself and to gain strength. I'll have my battles to fight, I’ll have to carefully choose where to spend the little energy that I have, but know, that I'll be alright. I have to come to terms with my disease, accede to the actuality that the woman who could hike 60 km with a 15kg backpack needs to take a pause.
The future might be uncertain, I might not be able to make it the next year or the year after, but I ain't giving up.
We face our wars and we call the shots on what we do about it! In October 2020 I felt my life was over, and here I was, 4 months down the lane having the best sandwich of my life at Lal Tibba, with the two of my most beautiful souls and wondering, this is my silver lining. I truly started to believe in the saying "everything happens for a reason", I still don't get the reason completely, but what I know is this made me appreciate the little things around me more. This made me realize how privileged I was. I didn't want my life to be « before & after lupus » but instead « before I embraced the fight & after »
Over the days I decided to focus on the positive, the fact that I was alive and able to do this, the fact that I am immensely loved, the fact that I literally ate everything from the street and fell sick only once, Yay me! After all, life isn't always sunshine and rainbows, I am not a Unicorn.
Every morning I have to remind myself that I am not my disease, I am not going to pity myself and cocoon myself into a boring life. That was never me, so why should lupus change anything?
Lupus can travel with me!
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