Read time 6 minutes
My name is Megha, though I never could relate to it. It could have been anything. 🙂
I was diagnosed with Thalassemia a few months over two years, I don’t recall what I experienced at that time. The oldest memories of resistance, are of clutching the bedroom door handle tight, wearing a pink printed frock, howling and begging loudly, “Mummy… hauspitle nahi jaana’, (don’t want to go to the hospital), and my mum sweet-talking to pacify me, also gently tugging me to take me for a blood transfusion. I must be 3 years.
Thalassemia is now fairly well-known, courtesy of actor Amitabh Bachchan who is himself a carrier, in those days it wasn’t so. In short, it is an inherited blood disorder characterized by less oxygen-carrying protein (haemoglobin) and fewer red blood cells in the body than normal, thus ones facing the severe form, need frequent blood transfusions and iron chelation to counter the accumulated iron in the body.
What was petrifying for the little me, was not the pain of the countless piercing needles, yeah, the needles did hurt and so did the thick blood when it went through the veins of my hands and wrists, actually it was the atmosphere of the hospital which was most nerve chilling. The echos of the announcements on the loudspeakers, the picture of other pediatric patients, many with swollen faces and limbs, lying helplessly on the beds, grim-looking people hanging around in the corridors, often teary eyed, the white bedsheets stained with drops of blood, and the cloth covering the blood bag, suggesting that people avoid even accidentally glancing at blood.
I heard my mother reiterate the story of my diagnosis to countless other patients we came across, “At two she started looking very pale, had poor appetite, was cranky all the time and the doctors prescribed iron supplements for anaemia only to make her condition worst, eventually a genetic blood test revealed beta – thalassemia.” I instinctively felt an aversion for the self-pity in her voice and expressions, and tell her sternly time and again, to not propagate that I have Thalassemia.
Each day there were enough reminders of the sickness already; precautions to keep infections at bay, strictly avoiding iron-rich foods, no over-exertion, constant diarrhea episodes, and embarrassing situations in front of relatives and friends, hunting frantically for a bathroom and above all my parents stressing over arranging blood and donors periodically, especially in summer months.
My family left no stone unturned, desperate to find a cure for this genetic disorder, homoeopathic, ayurvedic, some hakim (traditional healer) tied a black thread around my waist and gave me a tabiz, once I was lifted up to a stage where a Christian priest prayed with his hand fragrant with holy oil, placed on my forehead in front of ten thousand people who were all shouting hallelujahs. Yes, we went to many places to pray and beg for some relief. My mother has shed endless tears at my condition and my father has felt helpless at not being able to change the situation.
At that time bone marrow transplant was not so common and a few those children whom I met in the hospital, passed away post-transplant and from other complications arising from repeated transfusions. One time I too got infected with P. falciparum malaria, in spite of the transfused blood being tested, and spent a few critical days in the ICU.
My parents have been extremely supportive, and sensitive to my psychological and emotional needs, showering loads of affection, pampering me with new toys, and dresses every time I felt sicker than I already was, trying their best to minimize or camouflage the bitter experiences and fill the deficiency with their love.
Soon, on the surface, I became immune, and learnt to be or perhaps act ‘strong’. I heard it many times, “Ye toh brave girl hai, roti bhi nahi hai.” (She is a brave girl, she doesn’t even cry) I would take my colours, toys and walkman on the monthly visits to the hospital. My mum and I would eat hot vadas (fried snacks) in the cafeteria, sit in the park sharing peanuts with the squirrels, pray in the hospital church where I would light a candle in front of Mother Mary or walk in the hospital compounds while waiting for the blood crossmatch. It soon became a picnic day with of course some predictable pain and fever post-transfusion.
Growing up with thalassemia, made me feel special. My support system refrained to acknowledge that something was wrong with me, so in my head I glorified pain, almost feeling like a martyr. I remember entering a trance-like state in school prayers and bhajans, visualising Jesus carrying a cross and Sai Baba healing the sick in the hospitals. So, in my mind, I was a unique, proud girl, loved by my parents intensely, and taken care of by my teachers who were also well-informed about my health condition. Being quite bright in academics and arts, winning many awards in the school competition fueled this distinctive self-image. Sports, I never played anything and only bunked sports period in school, till today I’m quite scared of a ball coming in my direction.
In middle school, one evening I was sitting in my father’s lap verbalizing my desire to live independently in a hostel in college. My father pitying me inside said, “chali jaana”, I thought he was not taking me seriously and re-asserted myself, “you would see that I would indeed go to a hostel”, and I forgot about it.
My doctor informed us of some injections being given to children to increase height, for me an X-ray of the wrist revealed that my body had already reached its limit of growing taller, I was past the age to be administered those growth injections.
My ferritin was quite high, the infusion pump for iron chelation was still not so popular in India and I was also nervous about injecting deferrals in my belly overnight. At 14 years, I had the bones of a 90 yr old lady, I had severe osteoporosis with protruding teeth, ash coloured dark complexion, was extremely underweight, a little short and still considered myself pretty, till in high school, suddenly when all my friend’s bodies had changed, I still looked like a child and was even bullied.
Suddenly at 16, it was discovered that hydroxy urea, anti-cancer medicine, can minimize or stop transfusion for certain thalassemic, my doctor suggested a genetic test and by His will, I could go to a hostel after finishing school.
I’ve needed transfusions in between sometimes in two months, or a year or a couple of years or more. Was also diagnosed, after enduring repeated episodes of diarrhea for over a decade with Ulcerative Colitis, at 25. I had to stick with the chelating injections for a long time as the oral substitutes, gave me diarrhea or deformed my knees to an extent that I was limping.
So, this is the gist of my diagnosis. Yet life has only been richer and richer…. every passing day and existence is still showering more and more blessings.
The views expressed in this article are the author’s own and do not represent any kind of medical advice.