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Lessons from Systemic Lupus

by | Feb 15, 2021

When I was eleven years old I was ravished by an unknown disease. I was taken to several doctors and received different treatments just to deal with the fever, nausea and pain, but there was no assertiveness about what I was dealing with. My parents had to travel up and down to the nearest big city to look for experts. Finally it was concluding that I had Systemic Lupus. I was told that usually African women are prone to get it; that from every ten women, one was a man; and that from every ten men, one was a child. Talk about feeling like one in a million…

Since Lupus was attacking my kidneys, they got inflamed and I starting loosing red blood cells and eventually got anemia. It got complicated with a kidney infection and stomach parasites. I spent a couple of weeks in the hospital, and soon after, I started with chemotherapy and harsh drugs. I was given a diet restricted in sodium to take care of the kidneys, and I had to follow it for a few years ahead.

I used to be quite attached to eating salty snacks. To keep enjoying that, I remember grabbing only one chip and eat it by minute bites that would take me about thirty to forty-five minutes to end with it. I learned to enjoy every bit of flavor for as long as possible, before that, I would munch a whole bag of chips in a few minutes. As well I would take a grain of salt and savor it on my tongue by itself, before putting a bite of food in my mouth, this somehow worked to make unsalted things taste salty! So something as simple and small as one grain of salt can make a difference!

It was fun when I would make bets with my father about how many droplets were left in the intravenous chemotherapy solution. I don’t know if he let me win on purpose, but every time I would win and he would buy me a music CD. In a way this made it exciting to go get chemo, as strange as it sounds.

You realize how many people care about you. It is in the worst case scenario times, when you realize many people actually care and want to do something for you. Even the owner of the video rental business would give my dad free rentals during the time I was in the hospital. People would take me to my favorite restaurants as soon as I was outside of the hospital and able to eat normally. I don’t think I ever received so much love and gifts from some many random people. It makes those times in my memory not bad, as the pain I can’t really remember it as vivid as the good memories. It was for me a proof of the human kindness that is hard to notice during normal everyday living. I remember the positive impact it made on me, and up to this day,  and it is one of my drives for caring about others and make somebody else’s life better when possible. This is a double-sided knife as then some people tend to try to use you, but this is rather their problem and not mine, and I keep to open the door for every new friend.

I learned that faith makes a difference. Besides all the orthodox treatments I was receiving, I was taken to endless self-healing seminars and workshops particularly from spiritual human yoga. When you are a child it is much easier to believe deeply in something, and so I believed with every cell of my body that I was healing. Curiously, the medical tests started to improve drastically around this time. It was a surprising case for the doctors, and as well for the teachers and founder of the healing seminars as he asked us to keep sending him my medical results. Eventually I came to land in the seven percent of statistics from the people who achieve a permanent unmedicated remission. What you hold in the core of your beliefs makes a HUGE difference, be very selective and smart on what you choose to believe.

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