Alok Kaushik, now 40, talks about his transition from the life of a sighted person to a blind person. “Start living in the solution domain rather than the problem domain,” he says, sharing the solutions that help him maintain his independence.
Please tell us a bit about your condition.
I have Retinitis Pigmentosa (RP), which is a disease of the retina that causes the photo-receptor cells in the retina, i.e. rods and cones, to degenerate in a progressive manner, leading to visual impairment over a period of time.
When were you diagnosed?
I was diagnosed with the early stage of Retinitis Pigmentosa around the age of 30 years.
What were the early symptoms?
Since the disease is progressive in nature, its presence was not apparent or recognised during its initial stage. Some very minor points of observations included missing out a moving object from the field of vision momentarily. Another symptom was a tendency to watch things at an angle rather than directly towards them. For example, I had a tendency to look towards the head of a person to get his / her face in my vision. Looking directly towards the face did not give that clarity.
In many cases of RP there is tunnel vision, and people are able to see through the central part of the vision. However, in my case the central part of the eye, i.e. macula, also had degeneration. Hence it directly affected my ability to focus on anything, and I had to rely on unclear vision through other angles of the visual field.
With early progression of RP, a need for bright light in the ambience was felt.
Is there a history of Retinitis Pigmentosa in your family?
There is a history of RP in my family on my mother’s side of the family. My mother has RP as well, and I have inherited it. One of my elder sisters also has RP, and both she and my mother are blind at present.
What is your present condition?
At present I am legally blind with an estimated visual impairment of more than 95%. I do not have any functional vision. Only a certain level of residual light perception is present.
Please describe your experience of managing RP.
Since there is no known cure for RP, I had to transition from the life of a sighted person to that of a blind person. Management was not required for the disease but for the ways in which a better life could be led in the given condition. Details for that are covered in the subsequent points.
What medications are you on?
I am not taking any medication at present.
During early stage of RP I was recommended to take 15000 IU (International units) of vitamin A on a daily basis. However, I discontinued it after a few months due to its side effects.
Were there any side-effects of the medicines?
Intake of excessive vitamin A on a regular basis impacted my liver functioning, and the lever function test showed various levels outside the normal range. This is a known side effect and the doctor who prescribed vitamin A had mentioned this to me.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
In my case major challenges were lack of relevant information during the time of transition, and outdoor mobility thereafter in general.
As soon as I got connected with individuals who faced similar challenge and organisations working in the related field, information started flowing to me, and that took care of many other challenges. AccessIndia mailing list (accessindia.org.in) is a good source of information, besides people who are already leading an exemplary life with visual impairment.
Outdoor mobility persisted to be a challenge for a long time. However, after I started using a white cane for tactile navigation and took a few mobility lessons from a resource person at National Association for the Blind, Delhi, I was more confident in stepping out on my own. Recently I made my first solo trip to Bangalore since I became blind, and it was a great and liberating experience. The first step is always the most difficult one. Now that the inertia has been broken and a level of confidence is achieved, I am looking forward to stepping out on my own and go anywhere in the world.
My suggestion to others who are facing similar challenges would be to reach out for information and people. That would make many more things possible for them.
Another suggestion would be to avoid comparison of life before and after visual impairment, and start living in the solution domain rather than the problem domain.
It is important to recognise is that at some point of time we will have to break the inertia and take the plunge. It would be better to do it by choice rather than by compulsion at a later point. There is no need to be afraid of getting hurt or perception of other people. What we can achieve by transcending our challenges is worth much more than sympathy of people and live with a constant sense of limitation.
Have you learnt anything in managing in your condition that you wish you knew before?
At the time when my visual impairment became significant I was not in touch with any other person with a similar challenge outside my family, nor was I aware of various organisations that are working for people with visual impairment. I was not even aware about various tools, devices, and software that could have made doing many of the things possible.
I came to know about many of these things much later, but since I have known them and got connected with several individuals and organisations in the related field, it has brought about a significant change in the level of my independence, and comfort level in general.
What kind of specialists do you consult and how often?
After consulting at Sankara Netralaya in Chennai in 2005, and at Dr. Shroff’s charitable eye hospital in Delhi a few years later, I did not have the need for any further consultation. With my current condition even visual field test cannot be performed. I do not consult any medical specialist at present.
However, I keep myself aware about various developments in the research around the world related to RP.
What resources are available to you in your city, Ghaziabad, to help you manage the condition?
I am not aware of any resources that may be available to manage RP or the state of visual impairment in my city. However, due to proximity with Delhi, I am able to get help from some organizations working in Delhi in the area of visual impairment.
Some of the organisations that provide various kinds of assistance, tools, softwares, and information include Saksham, National Association for the Blind (NAB), All India confederation for the blind (AICB), Score foundation, and Samartha Trust.
Have you had to make some changes to your lifestyle because of your condition?
I had to make several significant changes to my lifestyle in order to manage living with blindness. Among other things, it includes the following:
- Doing professional work of software development using a screen reader on a computer through listening to audio output.
- Using a screen reader called talks on mobile phone to be able to use it.
- Using assistive tools to perform certain tasks. For example, using a liquid level indicator to find out the level of liquid poured in a cup / container, using talking thermometer, weighing machine, clock, etc.
- Using audio recorder for making notes and meetings.
- Being more open to ask for help from others, including strangers in outdoor places.
- Hiring a driver for mobility.
Have you tried complementary medicine or therapies, like homeopathy or yoga?
I have not tried homeopathy, yoga or Ayurveda for RP. I tried a micro current stimulation therapy using a device provided by a company named Scifix. I tried it for many months but it not help in reducing the degeneration. On the contrary, I used to feel a slight but temporary blurring of vision immediately after its use.
Has it been difficult emotionally to cope with your condition?
It was not difficult at all for me to accept the condition or even transition my life to that of a blind person. I would attribute it to the upbringing that I received and a general positive approach and energy among my parents and siblings. I try to live by the philosophy of present-moment living and not resisting what the present moment has to offer. In that state of non-resistance I look for solutions, and challenges just become situations rather than part of my identity.
How has your family supported you?
I am immensely grateful to my family not only for their support at present but also for the kind of family environment and values I have received from them. While their support at present is more logistical in nature, their positive way of living had an innate strength and outlook that made the condition and associated challenges look manageable. It actually goes a step further and I try to look at the lessons that I can learn and evolve myself through those challenges.
