Can you tell me what you were doing when eyes degeneration began to proceed? What did you do when you realized you were tired when just got up bothered by any kind of light? What were you doing when the mood was down? How did you manage to have a social life without stress? How can you not be afraid and do not cry without falling into clichés and gooders advices? How do you know when the best medicine is to force yourself to deal with stressful situations and when it is the case to give up?
A friend of mine, she also suffers from Usher Syndrome, wrote me yesterday this series of questions. Maybe she was seeking a little ‘comfort in a time of “low tide”, as we call the moments when the mood is down and the desire to cope with the difficulties very low.
If you try to type on a search engine any of these questions or the more general How to live and survive with retinitis pigmentosa? rhe answers you get from the web are scarce. You have to comb through forums and facebook groups or pages to find some good advice.
Most of the websites and blogs cite definitions of the disease and treatment options, scientific discoveries and personal stories.
Among the findings there are useful tips, ranging from purely practical to those related to loss of vision stress.
Interesting the Decalogue in this article.
Ten Tips for Living and ENJOYING Life with Retinitis Pigmentosa, among whom I like very much the last four .
Get Involved: There are numerous national and regional organizations that offer resources for people dealing with vision loss from RP or other blinding diseases. There are also some great RP Facebook communities where people share resources, frustrations, fears and hopes. Connecting helps you realize you aren’t alone. And getting involved gives you something proactive you can do to help yourself and others.
Have Fun: Listen to your favorite music, sing, indulge in a double chocolate mocha, catch up with old friends, make new ones and laugh. Enjoying life may be the best remedy for any disease —eye diseases included.
Embrace the Moment: The one thing my journey with RP has taught me is that none of us are immune to disease or death, life can change in an instant, and all we have for certain is now—so we better make NOW count.
Some time ago I had collected a number of useful links on the psychological aspects of vision loss .
I do not think that my friend was asking me a collection of links and texts. As if he was doing an ccademic research and needed a bibliography to start.
However, living with retinitis pigmentosa is a bit as to search for the answer to the great questions of humanity: who we are, where we come from, why we are here.
As we all know there is no answer, and there are two ways to address this lack. Do not ask questions or seek your own answers.
If one is born a Christian and continues to be, can find in God the answer to the origin of the world and maybe the reason of life. For others, the answer is closer, within us. For the more mechanistic matters are simplified: we are nothing but machines.
Starting from the basic concept that everyone, sooner or later, we will have to deal with the difficulties, whether they are related to personal illness or of the loved ones, major losses or in difficult financial situations, the questions of my friend might seem unnecessary when compared with that of a child from Burkina Faso who wakes up in the morning, feel hungry and think :Will I eat today? Or those of any father of a family of Syria who does not know what to do to save his children.
The questions of life, such as those on how to deal with retinitis pigmentosa have the luxury of those who have no worse to think about.
Here, have relapsed in the first gooder advice.
To paraphrase what I wrote, you could say that I should answer my frined: all your questions friend do not deserve an answer because some people die of hunger, other have more serious diseases and others who do not get out of bed because they can not and not because bothered by the light.
Nice friend I am.
It is clear that I too have moments of sadness, despair and fear, but fortunately are always temporary. I think it’s impossible to be always positive and cheerful and always have the wish to go out. In fact, I changed a lot in recent times. I avoid stressful situations, or I try to manage them in order to limit the damage. For example, if I have to go to a club where I know it will be dark, I make sure to meet with a friend before entering, or call you from the entrance.
This is just an example and if I started to write a list of practical advice for every situation, the list is endless.
All tips can be traced back to the basic rule: ask for help when necessary and never be afraid to ask. Everyone enjoys helping others. It makes us feel good, so there are many friends or people who would be happy to do so.
This first piece helps me broadening the reflection and say that in order to better address the low vision is necessary to overturn the social rules and care less of many of them.
Retinitis pigmentosa is a bastard disease because it comes when you think you are a man or a woman ready for life and you’ve built your parameters and your style.
You like playing football, skiing, you like to paint with oils, collecting coins, you like to go dancing, to drive the car, to ride a bike. But, slowly, you have to stop doing all of these things and try to like something else.
Besides having to change the things that you like and you’ve always done in a certain way, you have to change your way of doing them and sometimes adjust to some actions that are not the ones you’re used to.
When you drop a pen you generally bend your back to collect it, but if you do it when you have retinitis pigmentosa the risk scratching your forehead against the edge of a table is very high. You have to bend down while keeping your back straight, unless you have scanned all within a meter to be able to move down as you always have.
To Impose this action every time you drop a pen is very difficult.
The same applies to the way you walk, cross the street, go shopping .
But why should I go to a mall or train station where the flows of people are so random that it is impossible to make a meter without colliding with someone?
Yet I can not stop traveling and so you need to develop my own self-defense.
For example, I always try to get to the station well in advance so I do not have to rush to go to catch the train. Always insert the variable “unexpected ” so I can go slowly even though I have waited a long time at the ticket office.
In any case, the white cane is a passport to many situations. Try to hold one and walk throughout the mall: the people will move as the waters for Moses .
And here we return to what already written. A list the practical advice for any situation or environment is not possible. But the basic rule is that you must readjust your own life and your own way of living with the disease, so that you can still be master of your own choices.
If I read now the questions of my friend I can see that many of them are asked by who lives and thinks with the mind of a normally sighted.
If I answer that everyone should find the answers alone, according to their character and personality according to friends, family and the city in which he lives, it would seem a non-answer. If you think of yourself as a visually impaired before asking the questions, you will realize that the answers are coming.
What were you doing when degeneration began to proceed?
Honestly I have not done anything closely connected to the degeneration, if not ‘use’ it as an excuse to get myself to do more and want more from myself.
I would never have left for the trip to Australia and for that boat if I had not wanted to show me that it was possible to do so.
What were you doing during periods when the mood was down?
I do not remember, but generally when my mood is down I donothing but wait for it to go.
If there is a risk that moodiness turns into depression maybe it’s time to seek the help of an expert.
If before answering any other questions I think I am visually impaired responses could be the following
How did you manage to have a social life without stress?
I have the social life of a visually impaired with all that entails. I do not think I’ve even lost a friend for this reason, but it may also be necessary to change the type of social life, such as meeting places and habits. If you’ve always went to the bar by bike, now you get a friend to pick you up, if you always went to the cinema alone now some one will take you there.
How can you not have fears and do not cry without falling into clichés and gooders advices?
We all have fear, because fear is one of the feelings of man. At times the fear wins the choices, sometimes it is the opposite. Which one are your fears? I believe that to overcome fears is necessary first of all to identify them. To be blind? Of not to find job ? Try to understand what you really fear.
How do you know when the best medicine is to force yourself to deal with stressful situations and when it is the case to give up?
I think is never the case to live stressful situations, just for the fact that they are stressful. Why should you bother going to meet up with friends if this becomes a reason not to feel good ? In this case, the jump from normally sighted to partially sighted is obviously necessary, because I think it best to try to eliminate or reduce stress before you deal with situations.
I do not know if my friend will be happy with the answers, in any case, as I told her before, there are often no answers, but better questions, so once you have made the conversion from normally to partially sighted you will not cease to ask questions, but they will be for this strange game of low vision and not universal questions for which the answer is life long lasting.
Is it not true that we live according to the answers that seem more suitable for us?