So, you have just been told you have Macular Dystrophy.
At first you are puzzled and think you could never understand the information that you are googling… right?
Never heard of a macula? No neither had I.
The more you read, the more the panic, the more devastation and scared you feel.
How did this happen?
How long do I have my eyesight fails?
How will I cope?
How can I explain this to friends and family?
When will I experience difficulties so badly I will lose my independence?
Will I lose people I love?
I\’m scared, nobody will understand?
Is there a cure?
Will I go blind?
Do my family have it?
An overwhelming feeling that lasts a long time.
All I can say is…
I do know exactly how you feel. From experience.
It\’s devastating and I never thought I would calm down about the situation I found myself in.
You will be annoyed by comments like… ‘Glasses will help’ … ‘Surely you can do something\’ and the absolute pearler… ‘My eyes are getting bad too’
But, if you don’t understand this disease, how do you think anyone else will?
People don’t know what to say and don’t want to say the wrong thing.
Alot of groups I’m in on facebook have peoples family members joining to understand and help the person with the disease. This is probably a good idea as they won’t just take your word for it and can begin to understand the common thread through the progression of this condition. Join them too, they are very helpful.
Don’t worry about anyone who will leave you because of this, it just shows you they weren’t going to be much help or comfort to you or a much of a friend anyway.
That probably won’t happen.
The initial shock will wear off eventually.
Now, I’m not saying you won’t have your down days but you will come to terms with the condition… Mostly.
It won’t always be like this.
Throughout this blog, I have been honest.
There are amusing, and downright scary days.
Days where you cry because it’s frightening and you feel so alone in this because how can anyone know what you see or don’t see? Or the mounting difficulties and frustrations.
But amusing days where you have lip liner on your eyes and your sunglasses on in autumn feeling a pillock. Trying to pick up a spider in your room very carefully that happens to be a leaf, trying to work out if it’s the bus coming and whether to put your arm out, then realising it’s a van … But then you laugh, because, you have to.
I won’t be one of those people who will pop some wishy washy… Live, laugh, love crap up, because, this is very real, and I think it will help people more by being real.
If you have a friend or family member with this condition it must be confusing.
I can see a blurry bird in a tree, but I will stare at your eyes intently trying to focus in on them.
I don’t like the lights, but can\’t see in the dark very well either.
I’m confused too.
You cannot take this away or cure it. What you can do is educate yourself, and join groups, listen and give hugs… alot.
As the disease progresses, a good thing to do is maybe help with a bucket list, fundraising and then at least that\’s helping find a cure.
4+ years down the line, and I appreciate still being independent, the little things in life, days and nights out while I’m still seeing everything I can.
This does feel like a race against time, but at the moment I think its only because my condition has worsened, but it will hopefully level out now for a while.
The Macular Society and RNIB have support if you need it, groups online are good for connecting with people with the same or similar condition as sometimes it’s nice to realise that they have the same problems and work a way round them of you can together.
One Vision Blog 