Wednesday, April 23, 2014

You are not alone

This post is directed to people who have recently been diagnosed with a visual disorder or have a loved one who has. I know it is a shocking diagnosis and you will certainly need some time to process it. You have every right to be angry, sad, scared, even pissed off. Believe me, these are normal reactions. What I want to convey here is that you are not in this alone. You might feel like you are. You probably do not know anyone else with the same diagnosis. But we are out there. One reason I love social media (and there are reasons I do not like it as well) is the way it can connect people who are in a similar situation. 

"You never know how strong you are until being strong is the only choice you have." You will learn through this process that you are stronger than you ever thought. There will be times when you feel helpless, lost, unsure of the future. But you need to remember there is so much more to you than this. You will get lots of reactions from friends, co-workers, even strangers that often are the opposite of helpful. I have heard on many occasion "I could not live without my car." This statement always makes me cringe. I feel like saying "Actually you could. It would just take a lot of changes in your life."
You will have certain friends and family members who will try to understand and offer as much support as they can. Embrace their help and be honest with them about how you are feeling.  I know how hard it is to lose so much of your independence. Asking for help is not easy and can make us feel inadequate. But think about how much you would want to help others if the roles were reversed. There should be no shame in needing assistance.

I also hope that you will seek out others in your area who are blind or visually impaired. Being able to confide in someone who has gone through the same thing is priceless. It might take some time before you feel comfortable doing this but please try . Check out your local chapter of the Foundation Fighting Blindness. You will probably at times want to stay in bed and cry. That's OK too...  but I hope you will not let this feeling of helplessness overcome you. You have your life to live. And this life can still be full of happiness, love and beauty.  

I think it is important to stay active. As a teenager, I ran track every winter and spring season of high school. I also played soccer and ran cross-country track. I did not realize it then but this gave me an outlet for my emotions. The anxiety, stress, anger I felt got channeled to my running and it propelled me to do very well. I could not play other sports I would have liked to play (such as lacrosse) so I made the most of what I COULD do.
That is key... Focus on what you CAN do. You will find creative ways to accomplish your goals.

As a friend once said to me... You do not need good vision to be able to see the beautiful things in life.  What makes this statement even more meaningful is that it comes from someone who was diagnosed with Stargardt's last year. She has amazed me with the strength she has shown while going through this! 


Mary Jane's Playcare said...

You are not alone! Love this blog. Your words are so strong Heather. It does my heart good to know that you are writing to others with visual impairments. Being able to express yourself so eloquently is such a gift and such a blessing for those of us who read your blog.
You write so positively. Sometimes you express anger and frustration. Yes! That's what we all need to hear.
People need to know the trials and frustrations low vision people go through. How will we know if you don't tell us? Even those close to you can miss what you are going through at times.
For you to share these feelings with others, helps them realize that they too can express how they are feeling. Others feel the same way!
Isn't the internet awesome at times? 30 years ago, we were so alone and floundering. But, we did well. You did well! You taught all those around you that you were an independent and capable person. Ok, there were some things you were told not to do....but, running, swimming, soccer, skydiving, white water rafting, and even bungee jumping were obviously not on that list!
Hope people read your words and are inspired and comforted. You are an amazing woman, Heather. And your Mom is so very proud of you.

Diana Cont said...

Heather you truly are a remarkable woman. I love two of the comments you stated in your blog, "you never know how strong you are until being strong is the only choice you have" and the other "focus on what you can do. you will find creative ways to accomplish your goals." I suppose we really never know what it's like to live a day in the life of another but to be with you and see how you are with your children and family, it is evident that you welcome each day with a positive attitude and make the best of each day. You are a true inspiration and your ability to express your emotions so candidly is such a gift, since "you are not alone..."

myra hindman said...

Thanks so much for writing this. II was diagnosed with Stargardt's over twenty-five years ago. Not until I found social media this year, did I have the opportunity to hear from and speak to others with the same visual impairment. There is indeed a comfort and a renewed strength in knowing we are not alone!

Alanna said...

Sweet friend of mine...I miss you and your inspiration! You don't know how grateful I was a year ago to know you were there and that I was not alone in this battle. What a blessing you were to me during that difficult time! I have learned so many things since then and no matter what happens, I know that I am not alone. Just got a call yesterday that the Progstar Study is about to begin. Great things are happening. Slowly, but surely. There is hope. I love you and your sweet willingness to reach out and help others. Some day I will do for someone what you have done for me.

Mary Jane's Playcare said...

Alanna, you are beatiful...inside and out. You amaze me. You have done such a great job dealing with this news. I heard you have made friends who live near you that have low vision or are blind. I heard you run with a woman who is blind. And, I think, Heather told me you ran a race side by side with her. Heathrr told me all this cause she loves you and is so happy you are doing so well. I am happy that two very sweet and amazing woman have become such good friends. And are there for each other.
Thank you for coming into our lives. Someday, I'd love to meet you and your beautiful family. Take care, Honey. And keep on being your awesome self.
Love, Heather's Mom / MJ
PS...Yes, I am so very proud of her.