Aruna Misra, 60 from Faridabad has only 8 per cent peripheral vision left, which is also on a steady decline. But that does not stop her from living independently, doing all her chores, and even cooking when her husband had COVID. Most importantly, it has not sapped her zest for life.
Please tell us a bit about your condition
I am suffering from an advanced stage of Retinitis Pigmentosa. I have a mere 8 per cent of vision left now. And it is mainly peripheral. I don’t have any vision without light. My vision is blurred and broken, and its like an old painting, with water sprinkled on it which makes it even more hazy. I am an active person and try to do almost everything on my own, and that includes travelling alone by flight. In fact, my doctor is very surprised that I can do so much with so little vision.
When were you diagnosed?
I was diagnosed by the doctor at the age of 10. My mother also had this problem. In school I discovered that I increasingly had trouble looking at the writing on the blackboard. It was not clear and I had to sit on the first bench. So my father took me to a doctor who said I had inherited it from my mother.
What were the early symptoms?
I was not able to see the school blackboard, as I have mentioned before. There was no vision in the night without light. When I went out with others, walking around my house or in my locality in the evenings, I could not understand how others could see the road, and craters or other obstructions, which I could not. I guess those were the early symptoms.
Please describe your experience of managing the condition?
I needed extra light to study. But my eyes used to tire easily. So I used to rest my eyes after studying for some time. I would carry a torch with me always. I have done knitting and embroidery also. I could see then. But the day I conceived my daughter, there was drastic deterioration of my vision. The doctor said it happened because it is a genetic problem, and conception can aggravate the condition. But luckily my daughter has been spared of the condition, and I am very grateful for that.
What medications are you on?
I have always had natural food with Vitamin A. Right now I also have Vitamin supplements for 3 months or so, and then discontinue it for a while, as advised by the doctor. I go for my routine eye check ups every 6 months.
What were some of the challenges you faced?
I have had to face quite a few challenges. I am from Jammu. But I had to leave my friends and family and come away to Delhi because my daughter met with a serious accident when she was 5 years old in 1996 and she needed regular physiotherapy sessions. Jammu didn’t have enough opportunities. So we had to move to Delhi for better medical treatment. Moving to Delhi was a far cry from my comfortable life in Jammu, where I lived in a big house with a lot of servants. With my limited vision, a big city like Delhi seemed a huge challenge to me. It was a new place, a big city something I was not used to, and people were shrewd. My husband used to be at the office. But I had to take my daughter for Physiotherapy everyday. She would come back from school, eat, we would then taken an auto and go for Physiotherapy. Everything was tough for me with my vision impairment. We then moved to the centre of the city which was more convenient. Delhi was also a more expensive place, so it was a drain on our finances.
What kind of specialists do you consult and how often?
I consult eye specialists who deal with retina.
You are self sufficient, and you go about your chores, mostly without help. How do you manage that? What is your advice to patients who face similar challenges?
My husband and daughter and son in law everybody helps me in their own ways. People around me also help me so much. I don’t crib. I don’t complain. I am unable to use public transport, which is why I need to hire cabs for my movement around the city. But I always make sure that I behave nicely with the cab drivers, and if I am carrying food for myself, I also carry some food for the drivers. In turn, they take me around safely and bring my things right up to my apartment. Good behavior has gone a long way to be of help to me.
Fortunately I have always been blessed with good friends. When my daughter grew up she would help me a lot as well. My advice to others with a similar condition would be to develop one’s internal strength. Thank God for what you have, and don’t blame others for your misfortune. Try and be a pleasant person. That will draw others to you. Be a happy person. Be a polite person. I often need to take the help of others, because of my challenge. I need to often ask the policeman on the road for help, or my cab driver to help me with my things, or even my neighbours to help me with certain things. Everyone readily helps me because I talk to them politely. Because of my behavior, my old students still call me up, which makes me so happy and grateful. I had started teaching in Jammu soon after I completed my B Ed exams in 1982, and I continued teaching even after I got married. I gave up teaching after I conceived my daughter. I have gone through so many things in life. But it has only strengthened me.
You mentioned you also have diabetes. How do you manage?
I was diagnosed with high sugar a year ago and that has complicated matters. It has drastically deteriorated my vision. I had accepted slow deterioration of my eye sight, and had learnt to live with it. Last year I also developed cataract and even got a cataract operation done. The sugar has worsened my vision quite sharply. For sugar I have Glycomet GP 1 in the morning before breakfast and Amaryl 1 mg tablet before dinner. And I walk in my house for exercises. I also try to do some hand and leg exercises.
Has it been difficult emotionally to cope with your condition?
It has been a little difficult, but it also depends on the people around you. I used to travel, teach, do almost everything . My in laws have always been supportive of my condition. They accepted me fully. They put on extra light for me every where in the house, which was a huge help to me. I have also had a very supportive husband. My family and I have been very frank with my husband when our marriage negotiations were on about my challenges, and he accepted me with my challenges It is also important for fathers who have daughters with a condition to stand by them and make them self sufficient. I had a very supportive father. All this made me confident as a person and also develop faith in myself. It is also important to love oneself. I have so much confidence that I actually travel alone to meet my daughter in Bangalore. The airport people help me with the luggage etc, and I take the flight alone to my daughter. This would not have been possible without the love and support of the people around me over the years. We don’t need pity from people. We just need their support.
How did you look after your husband when he had covid?
That was a difficult period. Fortunately, he was detected early and he immediately quarantined himself. I had no maid, and there was no help for me. So I was worried. But I was determined to help myself. So I started cooking. Simple things like Dal Chawal. And I also started cleaning the house on my own. People in my community/ shopkeepers were getting things for me. My daughter also sent me groceries etc through online shopping. I did everything on my own, with my poor state of vision, for 3 weeks . My biggest fear during this period was, if I also get covid. In that case it will be a problem for me to manage. Otherwise I am usually not deterred by anything. Since I knew I had vision challenges, I would handle one thing at a time, so as to avoid accidents.
Have you ever seen a counselor for support? Were you offered counselling by doctor?
People take counseling from me. I don’t need it.
