1. Don't be afraid to be different. Accept your condition
Living with legally blindness is hard especially in a sighted world. You have to come to the realization that as much as it suck (and trust me it sucks a whole lot at times) legally blindness is part of who you are. (Hopefully until there's a cure in the not to far future) If you keep wanting to be "normal" (whatever that means) then you will be trully unhappy in your life because it's almost impossible to meet that expectation let alone try to exceed it.
Accept your differences and learn to see the beauty it can bring. I know you're probably thinking what beauty is there if I can't see, and yes I've been there too. Its simply a matter of perspectives, not seeing has allowed me to look deeper into people's hearts (past the glamour and superficiality). A shift in the mind goes a long way in helping you find peace and happiness. It's ok to be different, from the rest of society, its not easy, but its ok.
2. Physically take note of your surroundings'
Goes without say, one of the biggest annoyances sometimes is finding washrooms. What seemingly is a simple task that people don't think about, sometimes can bring about stress and embarrassment of not finding the right washroom. So quick tip is remember your location and take note of where the washroom is.
Same thing goes with directions. Photographic memory of close by landmarks and possibly maps can help you find your bearings easier and less stress. Remembering where things are take stress from having to try to find things. Even small objects athome, if you can keep a consistent habit, it'll save you alot of time in trying to find things afterwards.
3. Technology is your friend.
The rapid advancements in technology can help to make our lives easier. A good cell phone camera with a larger screen can work wondering if helping to read labels, print, or things far away from you. Plus it gives the added advantage of a GPS which means you don't have to try to read the small font on road signs.
Get familiar with ZOOM or text to speech functions. Whehter you're on your computer or even your cellphone and tablet, zooming can help you quickly navigate while text to speech can help you read info faster. As the technology progresses, we are seeing more and more innovative assistive devices and functionalities.
4. Understand people will not understand.
There is an innate isolation that comes with any form of illness or diseases. People are generally self centered and can only relate to experiences within their own experience. Just like you will not understand how a paralyzed person feels and experiences, it's difficult for most people to understand how we feel. It's no one's fault but it is a reality.
There's going to be days of frustration, for the most part if you do not have expectations of people being able to empathize or comprehend what you go through, it can help lower the frustration levels. This means, this will always be a cross you will bear, finding fellow patients may help you feel not so alone, but when you go back into real world, this is the reality that you face.
5. Process your emotions.
Believe me, a physical disability is more than just an inconvenience. There's a lot of lasting emotional trauma that will need to be processed for you to be whole again. The first thing is blame and shame, for fear of not being worthwhile, lovable, inadequacies, and possibly a sense of self blame. It's not your fault or anyone elses' fault, but for the longest time growing up, I felt it was my fault. I know logically it doesn't make sense, but perhaps that's just the pain and loss manifesting.
And then there's anger, the anger of "why me", the anger towards a world that doesn't have these problems, and the sadness of loss, of pain and self torment. Why torment? Because we are constantly reminded of what we cannot be, what everyone takes for granted and yet we cannot do. The realization that the world isn't fair, the breaking of the child like innocence. All of it is ours to bear, and you cannot run from it, the best you can do if you can't handle it is to disassociate. Like trauma victims who leave their bodies during a traumatic incident, as a child, the only thing I could do was to forget and numb myself. Until I was able to mentally process and face these emotions, I kept it hidden and locked away.
And then there's fear, the constant fear of not being good enough, of embrassment because you couldn't see, the fear of rejection. All of which the average person goes through but is amplified many folds when you are faced with a disability.
They say what doesn't kill you only makes you stronger. I agree with that saying but caution about the process. It's rough and quite painful and often a lonely path. Only when you learn to process these emotions, you will begin to see the light in things. Happiness, joy, love, and a whole list of more positive emotions cannot exist if you feel nothing. The pain teaches us to appreciate the small wins and things we have. Being grateful help us recognize the things we do have instead of focus on the things we don't. Everybody in their way doesn't have something, so I try to see it this way where what I don't have is simply somthing less common.
6. Find what you're good at.
Just because you have problems with a disability doesn't mean you have no talent. There will be things that you'd be good at, learn and explore and find what works for you. Because I guarantee that you can still excel and do great things despite of this minor setback.
Finding it will help to rebuild your sense of self and confidence. It takes you outside of your disability and into a world of talent.
Showing posts with label support. Show all posts
Showing posts with label support. Show all posts
Saturday, February 25, 2017
Friday, December 27, 2013
How to be Happy When You're Blind or Has a Disability
Happiness is an illusive feeling that we all seek as humans. No matter age, gender, race, abled or disabled, we all want it.
PERCEPTION & GRATITUDE
One might ask, how can you be happy when you have less than others? Just as in the case of the rich man vs average man, its not about the actual number that determines how rich you are, its your perception that will be the key to happiness. Add to this a sense of gratitude, then you've got the recipe for happiness.
GRATITUDE ISN'T SOMETHING TO BE TOLD
Sounds simple right? Not quite. If you have a kid who's suffering from some sort of disability, (stargardt's or otherwise) its not as straightforward as telling them you should be grateful. If anything, you'll get the opposite effect and often trigger anger. Hearing someone privileged talking about poverty isn't the most convincing story, so the worst thing you can do is tell your child they should be grateful compared to the rest of the world. Even though this is true, that being grateful will bring happiness, it not really something that can be told. As a teenager myself and even to this day, even though I am grateful for what I do have, I really don't like it when people tell me that I SHOULD be grateful or compare others to me. For me, I feel that its almost condescending to me because when people compare, (even though its in good intent) I almost want to say to them why don't you bear the cross and see how well you deal with it. We all have to take it our own pace, and being told to be grateful is almost insulting especially coming from an outsider's perspective.
TELL THE GOOD WITH THE BAD
I think what needs to be recognized is that its not an easy process to see the light in this dark tunnel, and part of what I hated about motivational speakers is they NEVER talk about the dark side. I don't buy for a single second that there aren't bad days, but the fact that no one talks about it really takes away any credibility that the motivation speaker's content has.
TEACH THEM ABOUT CHOICE
Although gratitude can't be told, it is a choice that can be made. so empower your child to CHOOSE happiness. Just because there's a disability, doesn't mean they don't have choices, they can choose to see it as a half empty half full glass. Help them understand that although they are disabled, it doesn't mean they can't do what they want, give them the hope and of any kid. Encourage them to try things even if there may be limitations on what they can do, there's no reason why they can't do something and they should know that. Teach them to protect themselves but be open to go for their dreams.
DON'T INSTILL YOUR OWN FEARS
Kids typically don't know what the meaning of can't is until an adult tells them so. Parents often rob their children of dreams because they were too scared to pursue their own. Their own fears of failure is passed on to their kids and the child become scared of doing things. Often its not the disability that is the limiting factor but the negative beliefs that surrounds the condition which prevents the child from doing what they want. And please don't justify your own fears by saying its for their own good or you're trying to protect them.
SUPPORT & NEVER APOLOGIZE
Growing up being disabled and different, it's hard not to get picked on. The best support you can give is let the child understand they should never be apologetic for who they are. Believe in themselves and go after their dreams no matter what others say. Give them the strength to face the judgemental world. When others are ignorant, this I when your child needs to stand up for him or herself.
If you as a parent empower your child, then they will find their way and come to terms with who they are. Encourage them so not to view disability as a limiting factor but instead a factor that needs to be addressed.
Be all that you can be, and happiness will follow.
PERCEPTION & GRATITUDE
One might ask, how can you be happy when you have less than others? Just as in the case of the rich man vs average man, its not about the actual number that determines how rich you are, its your perception that will be the key to happiness. Add to this a sense of gratitude, then you've got the recipe for happiness.
GRATITUDE ISN'T SOMETHING TO BE TOLD
Sounds simple right? Not quite. If you have a kid who's suffering from some sort of disability, (stargardt's or otherwise) its not as straightforward as telling them you should be grateful. If anything, you'll get the opposite effect and often trigger anger. Hearing someone privileged talking about poverty isn't the most convincing story, so the worst thing you can do is tell your child they should be grateful compared to the rest of the world. Even though this is true, that being grateful will bring happiness, it not really something that can be told. As a teenager myself and even to this day, even though I am grateful for what I do have, I really don't like it when people tell me that I SHOULD be grateful or compare others to me. For me, I feel that its almost condescending to me because when people compare, (even though its in good intent) I almost want to say to them why don't you bear the cross and see how well you deal with it. We all have to take it our own pace, and being told to be grateful is almost insulting especially coming from an outsider's perspective.
TELL THE GOOD WITH THE BAD
I think what needs to be recognized is that its not an easy process to see the light in this dark tunnel, and part of what I hated about motivational speakers is they NEVER talk about the dark side. I don't buy for a single second that there aren't bad days, but the fact that no one talks about it really takes away any credibility that the motivation speaker's content has.
TEACH THEM ABOUT CHOICE
Although gratitude can't be told, it is a choice that can be made. so empower your child to CHOOSE happiness. Just because there's a disability, doesn't mean they don't have choices, they can choose to see it as a half empty half full glass. Help them understand that although they are disabled, it doesn't mean they can't do what they want, give them the hope and of any kid. Encourage them to try things even if there may be limitations on what they can do, there's no reason why they can't do something and they should know that. Teach them to protect themselves but be open to go for their dreams.
DON'T INSTILL YOUR OWN FEARS
Kids typically don't know what the meaning of can't is until an adult tells them so. Parents often rob their children of dreams because they were too scared to pursue their own. Their own fears of failure is passed on to their kids and the child become scared of doing things. Often its not the disability that is the limiting factor but the negative beliefs that surrounds the condition which prevents the child from doing what they want. And please don't justify your own fears by saying its for their own good or you're trying to protect them.
SUPPORT & NEVER APOLOGIZE
Growing up being disabled and different, it's hard not to get picked on. The best support you can give is let the child understand they should never be apologetic for who they are. Believe in themselves and go after their dreams no matter what others say. Give them the strength to face the judgemental world. When others are ignorant, this I when your child needs to stand up for him or herself.
If you as a parent empower your child, then they will find their way and come to terms with who they are. Encourage them so not to view disability as a limiting factor but instead a factor that needs to be addressed.
Be all that you can be, and happiness will follow.
Thursday, April 18, 2013
After 20 years of Stargardts and Self discovery
Yesterday was my 30th birthday. The importance is not so much in the number but where my mind is at. Over the 20+ years having stargardts my life has been a complete emotional roller coaster. Growing up hating the world I was born into, to learning to forgive and accept who I am, to growing into who I am and just being happy for what I have. If you really look, my sight has only gotten worst from compared to before, yet learning to shift my thought patterns and mentality has turned my life around.
First 10 Years
The first 10 years of my life, I was blissfully ignorant to what I would have to face in the rest of my life - Stargardt's disease. I grew up like any other child, unaware that I would soon become legally blind.
The next 10 years
My teen years, its not something I would ever wish upon any child. Growing up being different is a lonely path and kids are ignorant to other's feelings. Being visually impaired in a sighted world especially going to school will mean they will face bullying and harassment, come face to face with what may be the worst in human nature.
Looking too normal means everyone will pick on you for being different. But nothing is as bad as trying to survive a constant questioning of self worth, self doubt, and a bunch of other negative feelings and possibly hatred towards the world. It's almost impossible for a child in their teens to understand what possible reasons there could be for this (stargardts) to happen to them. I remember asking myself what I have done to "deserve" being visually impaired.
I spent most of my teens trying to protect everyone around the me from the darkness I felt. I learned to lock the darkness deep within and built fortified walls around it to keep it from escaping. I learned to mimic smiles, to fit in, to do everything in my power to forget the pain. I learned to not care just so I can get by. I couldn't bring myself to hurting myself because I felt it would cause too much pain on my family. So I did the one thing I knew how, packed everything up and lock it deep within.
The past 10 years
I realized being numb to the world is no life to live. I didn't have any strong feelings of happiness or sadness. I realized I didn't want to live life being like the walking dead. So I made a choice, took a leap of faith, I picked someone and choose to open myself up without holding back. It was the first time I exposed myself, first time being truly vulnerable, first time being free. In some sense, I was lucky, if I had trusted someone who didn't accept me for who I am, perhaps I would have gone back into my shell and continued to numb myself.
Learning to trust was difficult, learning self worth and value was a work in progress. But making a conscious decision not to continue the life I had was what turned things around. In that relationship, I loved, lost and learned to let myself open up little by little.
Taking what I had learned, I wanted to help others. I ended up trying to help a lost soul almost in a way to make up for what I didn't have. And years gone by only to realize,I can't change my past, no matter how much I try to help others. Bu realizing you can only help those who wants to be helped.
And finally, this past 3 years, I've tried to zoom into myself. Understanding values, understanding vision. I learned that perspectives will make or break a person. Finding self value and remembering your dreams should be part of your life. The key to liberation lies in gratitude. The ability to see the world in a different way and mentally making the choice to believe will be the critical factor about any one person to succeed.
First 10 Years
The first 10 years of my life, I was blissfully ignorant to what I would have to face in the rest of my life - Stargardt's disease. I grew up like any other child, unaware that I would soon become legally blind.
The next 10 years
My teen years, its not something I would ever wish upon any child. Growing up being different is a lonely path and kids are ignorant to other's feelings. Being visually impaired in a sighted world especially going to school will mean they will face bullying and harassment, come face to face with what may be the worst in human nature.
Looking too normal means everyone will pick on you for being different. But nothing is as bad as trying to survive a constant questioning of self worth, self doubt, and a bunch of other negative feelings and possibly hatred towards the world. It's almost impossible for a child in their teens to understand what possible reasons there could be for this (stargardts) to happen to them. I remember asking myself what I have done to "deserve" being visually impaired.
I spent most of my teens trying to protect everyone around the me from the darkness I felt. I learned to lock the darkness deep within and built fortified walls around it to keep it from escaping. I learned to mimic smiles, to fit in, to do everything in my power to forget the pain. I learned to not care just so I can get by. I couldn't bring myself to hurting myself because I felt it would cause too much pain on my family. So I did the one thing I knew how, packed everything up and lock it deep within.
The past 10 years
I realized being numb to the world is no life to live. I didn't have any strong feelings of happiness or sadness. I realized I didn't want to live life being like the walking dead. So I made a choice, took a leap of faith, I picked someone and choose to open myself up without holding back. It was the first time I exposed myself, first time being truly vulnerable, first time being free. In some sense, I was lucky, if I had trusted someone who didn't accept me for who I am, perhaps I would have gone back into my shell and continued to numb myself.
Learning to trust was difficult, learning self worth and value was a work in progress. But making a conscious decision not to continue the life I had was what turned things around. In that relationship, I loved, lost and learned to let myself open up little by little.
Taking what I had learned, I wanted to help others. I ended up trying to help a lost soul almost in a way to make up for what I didn't have. And years gone by only to realize,I can't change my past, no matter how much I try to help others. Bu realizing you can only help those who wants to be helped.
And finally, this past 3 years, I've tried to zoom into myself. Understanding values, understanding vision. I learned that perspectives will make or break a person. Finding self value and remembering your dreams should be part of your life. The key to liberation lies in gratitude. The ability to see the world in a different way and mentally making the choice to believe will be the critical factor about any one person to succeed.
Tuesday, April 16, 2013
Your Future: job stability and security
Growing up in a traditional white collar family, I was taught to look for security above all else. Traditional Asians think being a doctor, engineer, government worker or banker/acountant are the idea and secure ways to live your life and making a living. My parents simply hope I would get a job and settle for the rest of my life.
Except I beg to differ.
Settling only makes them happy but to me its torture. I hate inefficiencies, I hate lack of creativity， I hate stupidity and mundane work, and I can't bring myself to become one of those people who can't wait until the weekend because they hate their job and can't wait to retire or quit.
THERE'S NO REASON WHY YOU CAN'T DO WAHT YOU LOVE!
I always believe in the fact that if you are doing something you love, you will find a way to make money. There's no reason why you have to settle even if you are visually impaired. Being successful has nothing to do with physical disability but has everything to do with your mental attitude. If you feel you can't, then you will never achieve what it is you want. If anything, being visually impaired helps you cope with the hardships you face when chasing a dream.
I've failed many times. Been rejected from jobs, and even put down by people of position. But all of that has made me a stronger person, a smarter thinker, and a committed lifelong learner.
As parents or family members, please don't force your kid of loved ones to settle for anything less than their real dreams. It's not going to be an easy road, but what they need is not discouragement and your fears. Believe it or not, your fears will transfer into their behaviours, your doubt and disbelief in their abilities will become the foundation of their self doubt.
I've spent 20 years trying to un-lesrn all the education taught to me from people who fear their own future. If anything, it takes so much more energy to erase those negative thoughts than to just simply follow you dreams.
If you are a parent, encourage your kids passion. Help them achieve their dreams, and believe in them like you would want them to believe in themselves. Installing your fears will hinder their true potential. After all, do you really want to be the people who made them unhappy? Who was the one that influenced them to give up on life and dreams?
Life is more than just about settling. So security and safety will come if you're in something you love to do. All you need to do is believe.
Except I beg to differ.
Settling only makes them happy but to me its torture. I hate inefficiencies, I hate lack of creativity， I hate stupidity and mundane work, and I can't bring myself to become one of those people who can't wait until the weekend because they hate their job and can't wait to retire or quit.
THERE'S NO REASON WHY YOU CAN'T DO WAHT YOU LOVE!
I always believe in the fact that if you are doing something you love, you will find a way to make money. There's no reason why you have to settle even if you are visually impaired. Being successful has nothing to do with physical disability but has everything to do with your mental attitude. If you feel you can't, then you will never achieve what it is you want. If anything, being visually impaired helps you cope with the hardships you face when chasing a dream.
I've failed many times. Been rejected from jobs, and even put down by people of position. But all of that has made me a stronger person, a smarter thinker, and a committed lifelong learner.
As parents or family members, please don't force your kid of loved ones to settle for anything less than their real dreams. It's not going to be an easy road, but what they need is not discouragement and your fears. Believe it or not, your fears will transfer into their behaviours, your doubt and disbelief in their abilities will become the foundation of their self doubt.
I've spent 20 years trying to un-lesrn all the education taught to me from people who fear their own future. If anything, it takes so much more energy to erase those negative thoughts than to just simply follow you dreams.
If you are a parent, encourage your kids passion. Help them achieve their dreams, and believe in them like you would want them to believe in themselves. Installing your fears will hinder their true potential. After all, do you really want to be the people who made them unhappy? Who was the one that influenced them to give up on life and dreams?
Life is more than just about settling. So security and safety will come if you're in something you love to do. All you need to do is believe.
Sunday, September 25, 2011
Stargardt's isn't something to be fixed!
Few months ago I saw the movie "Love and OtherDrugs". It's about a young woman and her struggle with relationship while facing Parkinson's. Although the nature of Parkinson's is much not related to blindness, but the idea of living and facing a disease is actually very similar.
Although we all hope for a cure someday, reality is there is none at this moment. It's a harsh reality to face for many patient's and often even harder to accept for family members. What I've seen and come to understand is that no matter how much you want your loved one to be better sometimes you just need to accept the disease as part of who they are and not force them to visit doctor after doctor knowing you will get the same answer.
Even when people know there's no cure, they still chase after doctor to doctor. It ends up being something you're trying to do not for the patient but for yourself. You want so desperately for your loved one to be better but ask yourself this question, IS IT SO BAD TO HAVE THIS DISEASE? Chasing after the same answer is tiresome and exhausting both physically and mentally. Yet many people with the disease will not refuse to see another doctor that their loved one has suggested because they don't want to kill their loved one's hope.
The best thing you can ever say to a Stargardt's patient or any terminal disease patient is to let them know you are there to support them and help make their life easier. Love them for who they are, even if it means they have a disease. Because when you chase after false hope, it tells them that they are not good enough because they have this disease.
No one wants to be sick, but when it is a part of you with no cure, it may be time to accept and love yourself even if it means you are sick. Having Stargardt's doesn't mean you can't live life, it just means that life becomes that much harder. But regardless of how hard it gets, find someone who loves you just as you are rather than try to "make you better". Because what they don't understand is you are good enough, you don't need to be better to be loved.
So stop trying to fix something that hasn't found a cure. Maybe one day there will be a cure, but until them accept that this is part of the patient and love them for who they are.
Although we all hope for a cure someday, reality is there is none at this moment. It's a harsh reality to face for many patient's and often even harder to accept for family members. What I've seen and come to understand is that no matter how much you want your loved one to be better sometimes you just need to accept the disease as part of who they are and not force them to visit doctor after doctor knowing you will get the same answer.
Even when people know there's no cure, they still chase after doctor to doctor. It ends up being something you're trying to do not for the patient but for yourself. You want so desperately for your loved one to be better but ask yourself this question, IS IT SO BAD TO HAVE THIS DISEASE? Chasing after the same answer is tiresome and exhausting both physically and mentally. Yet many people with the disease will not refuse to see another doctor that their loved one has suggested because they don't want to kill their loved one's hope.
The best thing you can ever say to a Stargardt's patient or any terminal disease patient is to let them know you are there to support them and help make their life easier. Love them for who they are, even if it means they have a disease. Because when you chase after false hope, it tells them that they are not good enough because they have this disease.
No one wants to be sick, but when it is a part of you with no cure, it may be time to accept and love yourself even if it means you are sick. Having Stargardt's doesn't mean you can't live life, it just means that life becomes that much harder. But regardless of how hard it gets, find someone who loves you just as you are rather than try to "make you better". Because what they don't understand is you are good enough, you don't need to be better to be loved.
So stop trying to fix something that hasn't found a cure. Maybe one day there will be a cure, but until them accept that this is part of the patient and love them for who they are.
Saturday, September 17, 2011
Talking to Others withvision problems
Lately, I've had the opportunity to speak with others who also have severe visual impairment. It's given me a chance to see myself in a different perspective.
I tend to be fairly hard on myself, always expecting more from myself then waht is really needed, especilly when it comes to my attitude towards my disability and how I adapt in everyday society. But recently I've had a chance to meet and speak with some others that are also dealing with low vision or vision loss, and all of a sudden, I'm starting to ease off on myself. I realize, I'm doing pretty good given my situation. I smile, I laugh, I live a fairly unrestricted life, I push myself to do more than what is expected, and I learn to deal and face my demons on a bad day.
How do I feel when I talk to others? Truth is, I don't think I will ever NOT be emotional when talking openly about my vision problems. I can't help but be a little teary when I hear others go through similar struggles. Its nice, to be able to talk openly and realize that although your friends and family may have trouble understanding what i is like to be visually impaired, the person you are talking to can relate and share a similar experience as your struggles. It's real comfort when I hear someone who really understand give words of encouragement. I mean not that support from friends and family isn't important, but for most people, they do not realize the amount of effort needed to deal with the smallest things in life.
I spoke with two visually impaired middle aged individuals and it made me realizeI shouldn't be so hard on myself. I see them and I still see emotional baggage. They still have trouble really face and accept their realities. A lot of time I just smile and say, well life doesn't stop because of you or anyone. If we have to live, then try to make the best of it.
The best advaice...
Forgiveness sharing the love, and a open heart. It is only when you lose something you learn to charish what you do have. Those of us that have Stargardt's, its not a curse. Its a gift of sight, it helps you to see the world for waht it is and not the blnket that covers it. For those that goes through difficult hardships and endure, they learn to love more, appreciate more, and can lead to a more spiritually fulfilling life.
For the parents of any Stargardt's patients out there, "its not your fault"... You can't possibily imagine the kind of hardships they have to endure both physically and mentally. So the best thing you cna do is give them words of encouragement . Let them knowthey can do anything they wnt to and that its always better to try and fail then never to have try at all. Even if you fail, it doesn't mean you're not good enough, it just means its not the right thing for you. Don't overprotect, it will hinder them from reaching their true potential because of fear. Love them just the way they are, let them know they don't need to apologize for their condition. Its not anyone's fault.
Thursday, September 1, 2011
What does it mean to have Stargardt's Disesase?
There's no one single answer. Different people may discover they Stargardt's at different stages in their life. For me, I found out when I was 9 while there are other who discovered it even earlier or much later in their lives.
Even though we may all be diagnosed with SStargardt's some people are able to drive and while others can barely see. Some of us lost much of our vision in a few short years while others lose it over a long period of time.
Hence there's no black and white dfinition of having Strgardt's because like all things, there are variations and situational factors.
Regardless of which stage you are at, living with fear is always apart of the reality we face. There's lways going to be a scary thought in the back of the head telling use perhpas we may be blind one day. No doctor can guarentee we won't lose our vision, all they can tell you is in most cases you will only lose central vision and still retain peripheral vision.
For most people, they don't realize the severity of this disease, to them, my ability to walk talk and do noraml things is just.. normal. They don't realize I stare at a menu even though I can't read a word. I nod when they point at something far away and say hey look at t that. Perfect strangers wonder why you stare off to the wall behind them instead of looking straight at them. They ask if I"m talking to them and always has a pzzled and often judgemental look on their face.
I smile, and shrug it off like always. But i guess the worst part about hvaing Stargardt's is more likely than not, your friends and family can't understand you. Not unless they themselves have been through some life altering trauma. So much is taken for granted because we
"look" so normal.
But it doesn't mean you can't have a good adventurous life. It just means everything is that much more harder even just being "normal". There may be things that you can't do, but most things you can. Often the only thing that stops you from it is yourself or people that care for you. They become over protective and deter you from living life to the fullest. Remember that htey mean whell, but also rememter to live your life. Life's not worth living if its lived in fear. Not to say there isn't fear in our lives, but more so not to let this fear stop you from trying.
Maybe being safe is what you want, and tha'ts ok too, just as long as you are happy. Stargardt's taught me to see things beyond the surface, it made me a much more humbler and compassionate human being. It gave me an appreciation for the simplest things in life and the wisdom to not take things for granted.
Sometimes the worst thing a friend of family can do is to tell the person how they should feel. The intentions are always well, but the effects of that statement usually does the exact opposite of good. Trust and support is the best present you can give to any person. A simple belief that they will find their way and unconditional support even if it looks hopeless. And by support I don't men tell them there will be a cure one day, I mean support them and let them know they can still do anything they want. The worst that cn happen is they find out they really can't, but even then at least they tried and for most people that's more important then the end result.
For those who have Stargardt's, no one is punishing you, you deserve happiness just as much as the next person, and renenber that life is often a self fullfilling proficy. So believe in yourself, don't ever let someone tell you you can't.
Even though we may all be diagnosed with SStargardt's some people are able to drive and while others can barely see. Some of us lost much of our vision in a few short years while others lose it over a long period of time.
Hence there's no black and white dfinition of having Strgardt's because like all things, there are variations and situational factors.
Regardless of which stage you are at, living with fear is always apart of the reality we face. There's lways going to be a scary thought in the back of the head telling use perhpas we may be blind one day. No doctor can guarentee we won't lose our vision, all they can tell you is in most cases you will only lose central vision and still retain peripheral vision.
For most people, they don't realize the severity of this disease, to them, my ability to walk talk and do noraml things is just.. normal. They don't realize I stare at a menu even though I can't read a word. I nod when they point at something far away and say hey look at t that. Perfect strangers wonder why you stare off to the wall behind them instead of looking straight at them. They ask if I"m talking to them and always has a pzzled and often judgemental look on their face.
I smile, and shrug it off like always. But i guess the worst part about hvaing Stargardt's is more likely than not, your friends and family can't understand you. Not unless they themselves have been through some life altering trauma. So much is taken for granted because we
"look" so normal.
But it doesn't mean you can't have a good adventurous life. It just means everything is that much more harder even just being "normal". There may be things that you can't do, but most things you can. Often the only thing that stops you from it is yourself or people that care for you. They become over protective and deter you from living life to the fullest. Remember that htey mean whell, but also rememter to live your life. Life's not worth living if its lived in fear. Not to say there isn't fear in our lives, but more so not to let this fear stop you from trying.
Maybe being safe is what you want, and tha'ts ok too, just as long as you are happy. Stargardt's taught me to see things beyond the surface, it made me a much more humbler and compassionate human being. It gave me an appreciation for the simplest things in life and the wisdom to not take things for granted.
Sometimes the worst thing a friend of family can do is to tell the person how they should feel. The intentions are always well, but the effects of that statement usually does the exact opposite of good. Trust and support is the best present you can give to any person. A simple belief that they will find their way and unconditional support even if it looks hopeless. And by support I don't men tell them there will be a cure one day, I mean support them and let them know they can still do anything they want. The worst that cn happen is they find out they really can't, but even then at least they tried and for most people that's more important then the end result.
For those who have Stargardt's, no one is punishing you, you deserve happiness just as much as the next person, and renenber that life is often a self fullfilling proficy. So believe in yourself, don't ever let someone tell you you can't.
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