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So today I was driving my mom to visit my dad in the hospital.  Don’t worry about him, he is fine, but thanks to everyone who voiced concern.  Anyway, when my mom sprung on me her interest in visiting my father, I will admit that I was annoyed and adamant about not performing the task of driving her the meager 20 minutes up to the hospital.  After all, I don’t feel well today (yeah I’m getting sick like everyone else), I had to work, had errands to run, wanted to hit the gym (I do still have a race Saturday), and the list goes on and on.  When I left the house I said “I would think about it, but see if someone else can help.”

After sitting at work and listening to people complain about the things they had to do and thinking about it further it finally hit me.  It’s not my moms fault my dad is in the hospital, and its not her fault she cant drive.  So even though I did not want to do this I begrudgingly agreed to play taxi driver.

While driving to the hospital, and still slightly annoyed with the drive, I got to thinking further.  Why am I annoyed?  Why does this bother me so much?  Were my laundry list of activities to complete so important that they couldn’t be put off another day?  It is after all my fault most of them have not been done already since I have a tendency to procrastinate lately.  This is family, and family is important to me.  Lately, I feel that I am being asked by my mom a lot to help her with things.  Is that what bothers me?  And finally it hit me when I looked over at my mom, who felt so bad for asking me this tiny favor that she sat beside me silent.  I cant even imagine ….

Can you imagine what it must be like to never be able to do the job that you loved and did for over 25 years?  Not that you retired, won the lotto, or just quit cause you got tired of it, but that you were no longer able to perform your job because of loss of sight.

Can you imagine what it would be like to never be able to drive because your lack of sight makes it impossible to focus, see objects clearly, or know when something is right next to you? 

Worst of all, can you imagine what it must be like to have to always ask for the help of others?  What it must feel like to always feel as if you are a burden on others and that you always feel as if all you can do is ask for help, when you are unable to return the favor?

I for one will be honest and say that I CANT imagine what it would be like.  But it does remind me WHY I started FiftyTwo4Mom, why I am doing what I am doing, and why it is so important to me to help fund research to help those who not only can imagine what it is like, but who have to live with it on a daily basis. 

I love you mom, and I am sorry I got so annoyed when you were just asking for a little help.  I promise to be more patient and understanding moving forward.  And I promise to keep up my asking others for help.  Even if it is just $1 at a time.  So PLEASE, If you have not yet donated, visit our donation page and join “My Road.”  Every dollar counts and can help us to make sure fewer people have to imagine how horrible a loss of sight can be.

Thank You

Here is my story…

When I graduated from college nine years ago I began experiencing some symptoms.  I started loosing my vision and was having horrible headaches.  I would black out, not pass out, but I would have no vision for 30 seconds to minutes a few times a day. I went to doctors and no one could see anything on MRIs or C-scans.  Finally, a few months later I lost full vision in my right eye.  They realized that I had a pseudo tumor.  It is when your spinal fluid is elevated in your brain. Just like a tumor with all the side effects. My spinal fluid got caught in my optical nerve, in essence drowning the optical nerve, leaving me blind in my right eye.

Soon after I under went a surgery in my eye to relieve the pressure. It helped for about a month. Then I had to have a brain surgery to relieve the fluid build up.  A few spinal taps later and a shunt in my back with a tube to my brain it finally evened out.  Two years later it came back and I had to spend a month in the hospital to get the shunt repaired with more surgery. It has been good for five years now. It was the scariest time in my life.

As a result of all the problems with my health I have been left with a life changing reality, to function with only one eye. This probably sounds strange but it is a big deal. People don’t understand that when you have an alteration to your sight it changes things. Now I find myself counting steps to make sure that I don’t fall. I have to take extra precautions when doing simple things like pouring a glass of water or shaking hands with people.

These things have become a part of my life now. For a long time I really felt so alone in the whole experience. It is hard because people can’t relate to the things you are going through. I am thankful for fiftytwo4mom because raising awareness and support for those suffering with optical nerve disorders reminds me I am not alone in this struggle. When I think of fiftytwo4mom it is personal. I want to be a part of giving people a place to relate to one another who struggle with similar situations.

If you have a story about how optic nerve disorders have affected your life and would like to share, please add your stories below.