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.

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.