Wednesday, April 23, 2014
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!
Thursday, April 3, 2014
Things have been a bit stressful lately so I have the urge to switch gears and focus on humor for a bit.
Last month, my husband and I went to a comedy club in Boston to see the hilarious Josh Blue. We knew of him from when he won Last Comic Standing a few years ago, and we have talked about catching his show if he comes to town. So for Chip's birthday, I bought tickets to his show at Laugh Boston. If you are unfamiliar with Josh Blue, I encourage you to check him out. He has Cerebral Palsy and finds humor in himself and life situations. He has a stage style all his own. The show was great despite the drunk members of the audience who seemed to want their 15 minutes of fame. They were a major distraction and undoubtedly affected the overall tone of the show. But I imagine this is par for the course for stand up comics. We had some good laughs which is always good for the soul! We even got to meet Josh after the show!
Recently we started watching the new sitcom Growing Up Fisher. It is a semi-autobiographical series about an 11- year old kid and his father who is totally blind. I remember a few months ago when I saw ads for the show, I was quite skeptical. A show about a blind guy that is supposed to be a comedy? Doesn't seem very politically correct and might be a bit offensive.
Well, turns out I love the show. In fact, it is one of my favorites.
This week's episode had a touching moment that sticks with me. The boy, Henry, was nearing his twelfth birthday and was very worried that he was going to go blind just like his dad had. He does not mention this fear to his father. Instead he gets himself into trouble by sneaking into the girl's locker room so he could see naked "boobs" for the first and maybe last time. Only problem was that he and his buddy got caught hiding in a locker and it turned out to be the boy's locker room. Anyway, he finally confides in his dad,and when asked why he has never mentioned his fear to him, he says because he didn't want his dad to think he didn't want to be like him. The response of the dad, Mel Fisher was to say how sweet and insane that was. That of course Henry wouldn't want to be blind. "I don't want to be blind!" he said. And this was surprising to the boy because he had never heard his father complain about his vision. He went about his life and never let his vision drag him down. But no.. He did not WANT to be blind.
This hit home for me because I do not want my kids to think that I let my vision hinder my life. I want them to know I am string and they are too. If there are things I can't do, we will be creative and come up with a plan. I will probably not cut down trees with a chainsaw like Mel Fisher but I will do what I can!
Again, if you have not seen this show, go on demand and watch it! Do not rule it out because they are laughing at a blind guy. The show has a way of making you laugh but not in a derogatory way towards anyone. You will see what I mean.
The father is played by J.K Simmons who I knew as Juno's dad and the psychiatrist from Law and Order. He is wonderful in this role. And the boy, Eli Baker, is great as well. The mom, who has recently separated from the dad and is attempting to reclaim her youth is played by Jenna Elfman. She is very convincing as an annoying mom!
They say "Laughter is the best medicine" and I am in full agreement. There was a time nearly three years ago (right after the birth of my youngest daughter) that I did not think I would laugh again. I am happy to say that I got through that very difficult time and am now making sure my life is full of laughter. It is pretty hard for it not to be when you come from the Gangi family, are married to a Garbitt and have two little ones!
I would like to end with a story that relates to my vision and is very funny. So do not feel bad if you chuckle a little. A few years ago, my good friend Kate was visiting, and while she was here I got a package delivered. I was very excited to see the new curtains I had ordered online for my kitchen. They had looked so cute -black valances with a trim of white with black flowers.
I opened the package and we looked at them. "Cheetah, Heather?" Kate asked. We both laughed and I did not really need to explain that I did not in fact want cheetah print curtains in kitchen!
Those got stashed away in a closet for months until I asked my mom to help me change them into something I could use. Coffee cups replaced the cheetah print, and they look adorable in my kitchen! Thanks Kate for sharing that moment with me! And thanks Ma for your constant willingness to help!