My Mom , DR. Victoria Ross , had a tough time raising me. None were there to help her , No one would want to tend to a baby , who was covered in dry black scales all over. The only skin care regime for was to have me lathered up in liquid paraffin or white petroleum jelly. My eldest aunt ( Solomon) was so spiteful , that she used to hide washing detergent , so that my Mom shouldn't wash my clothes or nappies , because she was scared that her daughter too would get infected with similar skin condition. My aunts were so superstitious , that they spread rumors that I was born like this , because my Mom exposed herself during eclipse.
Some said that , I was born like this as a result of curse. My Mom told that I didn't speak till the age of 5. I had a delayed growth. My mom , worked as a Gynecologist in many hospitals. The house help who was employed to take care of me , in my Mom's absence , never fed me on time or well, Hence, I was prone to several deficiencies and severe malnourishment. I had severe visual , hearing and mobility challenges. My bones were very fragile , I had many fractures as a child.
I was a loner as other children never played or interacted with me .I remember 2 dogs and a cat as my best friends during my childhood years. There were times when these animals used to save me from been beaten or stones being thrown at me .
Whenever my mother returned from work , she used to notice many bruises all over my body . she had to wrap bandages all over the bruised area. She said , many times people spat on my face . My Mom never gave up on me.
When it was time for me to go to school, none were ready to accept me in any school. My mother was my teacher . She used to spend all her time taking care of me and teaching me, tending to my wounds and broken spirit.
My mother was troubled a lot by my aunts and their husbands : So my mother joined the missionaries, St. Ann's of Providence in their group of hospitals. We relocated to a new place. I remember the kind Nuns , took me under their care. I was given all the love and care . My Mom was busy helping and serving the poor travelling all over. St . Ann's congregation took up the responsibility of taking care of me. They were my new extended family.
Sr .Immaculata ( Mother Superior), Sr. Nathlina (late), Sr. Setimia (late), Sr. Alfreda ( late), Sr Cruz Mary , Sr. Rosita , Sr. Jacqueline , Sr. Rosetta . These nuns showed me that humanity still exists. They never cringed touching me or holding me.
I learnt to write , read and speak well . I developed a penchant for reading and gardening in the convent , I was raised. I was in the convent chapel choir. I was also tending to the seniors and the destitute in the hospice and infirmary. I was taught , how to love, take care and share . I was transported in a different benevolent world .
I joined a convent school , but it was a terrible time again . I couldn't wash my face and hands often and moisturize them during the day, because by the time I reached home in the evening, my skin was like dry hard wood. My entire body was all in cracks, cuts and deep fissures. In school , many times kids used to push me and run away , my knees were always bleeding and I was in pain always. I resented my school days a lot.
Few teachers were too rough, some boxed my ears which left them cut and bleeding . Some used to beat with a big cane . Once a teacher whacked me on my hand palm that it left a deep gnash and my mom had to put 12 stiches at home. My fingers are deformed and I cannot write for more than 5 minutes. the fingers tips split so easily that I end up leaving a trail of blood on whatever I touch.
I was highly myopic as a child, my mother realized it only when she saw me struggling to read . I wore spectacles and it was another challenge , because they used to slip from the nose bridge , because of the heavy creams on my face.
I had lot of issues in school , I was highly tolerant to heat and cold. I remember wearing a cardigan in summer inside the class , because I was seated near the window and the cool breeze used to dry my skin fast , causing more cracks and cuts. I was so confused about my skin condition .
I had challenges hearing, the skin used to build up so fast during the day , that my noon time , I had difficulty hearing . I was dyslexic , this was a another big problem. My Mom never insisted that I come 1st . She used to tell me that , she secretly prayed hard , that I should be able to complete 10th at least . I realized the torture of writing so much in less time . While all the students were writing , I was here writing 4-5 lines, then waiting for the pain to reduce , so that I can at least write the remaining answer. The 10th , board exams were always in March/ April.
I felt I was inside the oven , when I was writing 10th board exams. I took 2 bottles of ice cold water and poured it all over me , so that I do not get a heat stroke and faint . I really didn't know , how I managed to write all papers . I passed scoring 59% in 10th . Yes, I missed 1st division by 1 mark.
My Mom was very happy that I passed my 10th class. She told me that the college principal refused to let me take science . So, the subjects , I chose was English Literature, world history and political science . I used to read a lot of books, newspaper , magazines . I took part in general knowledge quiz competitions (oral) . I scored well in them . I loved to listen to music and also used to sing .
Life in College - I majored in English Literature , World history and Political Science . The college I studied was almost 10 kms away from home. I had to travel in public transport ( local bus ) . The buses were so crowded , I fainted many times because of heat exhaustion , with the people , fighting , screaming , pushing , jostling left huge scars on me . I was vexed with life , mentally , emotionally , physically I was drained . Those were the most difficult and terrible years , I don't ever want to remember or think about.
The bullying and ragging in college was terrible . The taunts were even bad. I was constantly red because of continuous over heating . The college never had a proper washroom, that I could wash and apply moisturizer .I used to be the college only for 2 or 3 hours , then I used to rush back home . There were times the bus drivers never stopped seeing me all red . I often ended up walking home taking rest every 10 or 15 minutes. It took 3 to 4 hours to reach home walking from college to home . I never told my mother of my ordeal . But, One day she saw me walking a lonely stretch slowly , then she said that I should stop going to college .
I didn't know , how I finished my graduation. I wrote half papers during annual and remaining half during supplementary , because I couldn't write the papers at a stretch because of my deformed and painful condition of my fingers . Those days , there was no option of a person who could write on my behalf.
As per them or the government , this condition doesn't come in the physical disability category .
Why this discrimination for Ichthyosis affected people . I have a very severe type , but I had a lot of aspirations , but I had to just let go because the physical pain , mobility and visual challenges never allowed me to pursue me dreams.
I had learnt to be content , not complain and accept , which I did . But, please I appeal to people not to take our condition and silence as our weakness and bully or harass us .
I request the school / college authorities to create more place , which allows students with rare skin conditions to pursue our studies . The teachers and staff should be trained and more awareness about the challenges Ichthyosis affected individuals face.
We, Ichthyosis affected need people to understand us , support us and have lots of patience when they interact with us.
Some said that , I was born like this as a result of curse. My Mom told that I didn't speak till the age of 5. I had a delayed growth. My mom , worked as a Gynecologist in many hospitals. The house help who was employed to take care of me , in my Mom's absence , never fed me on time or well, Hence, I was prone to several deficiencies and severe malnourishment. I had severe visual , hearing and mobility challenges. My bones were very fragile , I had many fractures as a child.
I was a loner as other children never played or interacted with me .I remember 2 dogs and a cat as my best friends during my childhood years. There were times when these animals used to save me from been beaten or stones being thrown at me .
Whenever my mother returned from work , she used to notice many bruises all over my body . she had to wrap bandages all over the bruised area. She said , many times people spat on my face . My Mom never gave up on me.
When it was time for me to go to school, none were ready to accept me in any school. My mother was my teacher . She used to spend all her time taking care of me and teaching me, tending to my wounds and broken spirit.
My mother was troubled a lot by my aunts and their husbands : So my mother joined the missionaries, St. Ann's of Providence in their group of hospitals. We relocated to a new place. I remember the kind Nuns , took me under their care. I was given all the love and care . My Mom was busy helping and serving the poor travelling all over. St . Ann's congregation took up the responsibility of taking care of me. They were my new extended family.
Sr .Immaculata ( Mother Superior), Sr. Nathlina (late), Sr. Setimia (late), Sr. Alfreda ( late), Sr Cruz Mary , Sr. Rosita , Sr. Jacqueline , Sr. Rosetta . These nuns showed me that humanity still exists. They never cringed touching me or holding me.
I learnt to write , read and speak well . I developed a penchant for reading and gardening in the convent , I was raised. I was in the convent chapel choir. I was also tending to the seniors and the destitute in the hospice and infirmary. I was taught , how to love, take care and share . I was transported in a different benevolent world .
I joined a convent school , but it was a terrible time again . I couldn't wash my face and hands often and moisturize them during the day, because by the time I reached home in the evening, my skin was like dry hard wood. My entire body was all in cracks, cuts and deep fissures. In school , many times kids used to push me and run away , my knees were always bleeding and I was in pain always. I resented my school days a lot.
Few teachers were too rough, some boxed my ears which left them cut and bleeding . Some used to beat with a big cane . Once a teacher whacked me on my hand palm that it left a deep gnash and my mom had to put 12 stiches at home. My fingers are deformed and I cannot write for more than 5 minutes. the fingers tips split so easily that I end up leaving a trail of blood on whatever I touch.
I was highly myopic as a child, my mother realized it only when she saw me struggling to read . I wore spectacles and it was another challenge , because they used to slip from the nose bridge , because of the heavy creams on my face.
I had lot of issues in school , I was highly tolerant to heat and cold. I remember wearing a cardigan in summer inside the class , because I was seated near the window and the cool breeze used to dry my skin fast , causing more cracks and cuts. I was so confused about my skin condition .
I had challenges hearing, the skin used to build up so fast during the day , that my noon time , I had difficulty hearing . I was dyslexic , this was a another big problem. My Mom never insisted that I come 1st . She used to tell me that , she secretly prayed hard , that I should be able to complete 10th at least . I realized the torture of writing so much in less time . While all the students were writing , I was here writing 4-5 lines, then waiting for the pain to reduce , so that I can at least write the remaining answer. The 10th , board exams were always in March/ April.
I felt I was inside the oven , when I was writing 10th board exams. I took 2 bottles of ice cold water and poured it all over me , so that I do not get a heat stroke and faint . I really didn't know , how I managed to write all papers . I passed scoring 59% in 10th . Yes, I missed 1st division by 1 mark.
My Mom was very happy that I passed my 10th class. She told me that the college principal refused to let me take science . So, the subjects , I chose was English Literature, world history and political science . I used to read a lot of books, newspaper , magazines . I took part in general knowledge quiz competitions (oral) . I scored well in them . I loved to listen to music and also used to sing .
Life in College - I majored in English Literature , World history and Political Science . The college I studied was almost 10 kms away from home. I had to travel in public transport ( local bus ) . The buses were so crowded , I fainted many times because of heat exhaustion , with the people , fighting , screaming , pushing , jostling left huge scars on me . I was vexed with life , mentally , emotionally , physically I was drained . Those were the most difficult and terrible years , I don't ever want to remember or think about.
The bullying and ragging in college was terrible . The taunts were even bad. I was constantly red because of continuous over heating . The college never had a proper washroom, that I could wash and apply moisturizer .I used to be the college only for 2 or 3 hours , then I used to rush back home . There were times the bus drivers never stopped seeing me all red . I often ended up walking home taking rest every 10 or 15 minutes. It took 3 to 4 hours to reach home walking from college to home . I never told my mother of my ordeal . But, One day she saw me walking a lonely stretch slowly , then she said that I should stop going to college .
I didn't know , how I finished my graduation. I wrote half papers during annual and remaining half during supplementary , because I couldn't write the papers at a stretch because of my deformed and painful condition of my fingers . Those days , there was no option of a person who could write on my behalf.
As per them or the government , this condition doesn't come in the physical disability category .
Why this discrimination for Ichthyosis affected people . I have a very severe type , but I had a lot of aspirations , but I had to just let go because the physical pain , mobility and visual challenges never allowed me to pursue me dreams.
I had learnt to be content , not complain and accept , which I did . But, please I appeal to people not to take our condition and silence as our weakness and bully or harass us .
I request the school / college authorities to create more place , which allows students with rare skin conditions to pursue our studies . The teachers and staff should be trained and more awareness about the challenges Ichthyosis affected individuals face.
We, Ichthyosis affected need people to understand us , support us and have lots of patience when they interact with us.
No comments:
Post a Comment