I used to think courage was synonymous with stoicism. For me, bravery was fighting -- sometimes angrily -- through loss and grief in a desperate attempt to escape suffering. It was building walls against pain and while they shielded me from anguish they also hid me from everything and everyone else.
Two and a half years after being diagnosed with Stargardt's, I have finally redefined "courage." Thursday night as I played soccer in the rain, I felt lighter than I have since my last year of high school. I felt free. Courage isn't about hiding pain, but about hurting. It's about allowing yourself to feel the indignation, humiliation, and anger of losing a part of you. It's about being afraid and being vulnerable - because the only way to heal is to hurt.
And after going through all of that loss and all of that pain, courage is about starting everything over again. It's about finding that same optimism, that same faith in life that you had lost, and once again embracing it.
As Anne Lindbergh said, "To grow, to be reborn, one must remain vulnerable - open to love [and life] but also hideously open to the possibility of more suffering."
Courage is daring to be happy again.
Thank you Dan, Donna, Sharon, Tom, and all of you regulars on the Mdlist for providing a safe and productive place for people to hurt - to be courageous.
To everyone who is new, I beseech you - let yourself feel. As Shakespeare urges in Macbeth, "Give sorrow words: the grief that does not speak/Whispers the o'er-fraught heart and bids it break."
The amazing strength found in each one of us as our limits have been tested must be shared to encourage those who are still paralyzed by the news. I have found myself in situations that made me reach down to the depths of my courage...to which I am still not able to share...but I have emerged much stronger. Maggie and others, please refuse to be robbed by fear. You will make it no matter what happens.
When I was 19, I had a rehab counselor connect me with a woman who was completely blind. This woman was 60, and she was amazing. She lived alone. Her husband had died, and her daughter lived several hours away. She taught me how to crochet, she baked cakes from scratch, she spoke to the city counsel to improve the bus system, and she volunteered her time at the senior center. I had the greatest admiration for her, even though at the time I had a fear and embarrassment of those who were blind (she being the exception). I will never forget her and what she taught me.
Control over our lives is truly an illusion. Those who have all of their senses and good physical health are lulled into believing that they are in control. If that were so, then we wouldn't be in this predicament, would we? Some are mature enough to figure out the truth by virtue of old age. Some never figure it out. We who have had our sight damaged know the truth. It isn't our bodies that make us us. It is what is inside, what we are made of. No amount of vision loss can take that away. Diminished sight doesn't mean diminished self!
Fight the good fight my friends,
From Sharon:I am back from camp and want to share some of my experiences. I took my 6-year-old for the first three days, and then my husband joined us for the remaining days. I have never been to this camp and had some reservations about my ability to navigate. Of course, I had many good friends there with me, but all but one had not really spent time with me outside of my familiar surroundings (in which I am very functional). Everyone knows that I am visually impaired.
The lodge was the worst possible combination of light and dark inside, surrounded by large windows, which let the outside light in. The cabins and bathhouse were up some uneven log stairs. I did pretty well the first day and even surprised myself at night (due to a full moon).
The next day was another story. The lodge had stairs, and I could not see them for the life of me. The light from the window blinded me. Later that night, I decided to take a shower and left the cabin and got sort of lost. It was drizzling, and the full moon was gone under the clouds. I sat on the stairs of the bath house, unable to find the shower or go back to the lodge to get help. I felt very foolish and childlike. I did alot of praying and finally found the stairs to the lodge. After that, I was a bit nervous and tried to have someone with me most of the time, especially at night. I needed help with the food line, as well, and needed to do alot of self talk!
By the end of the week, I had regained my sense of humor and laughed with the kids, as I bumped into a tree with my cap bill (pushing it down on my head), apologized, and looked up to discover that the tree was the recipient! I was half way up the stairs to the cabins when another camper said, "Can you go up those stairs by yourself?" I said "Oh no! I forgot! Could someone take me back downstairs so I can get help back up them?"! We all laughed, and I trotted up the rest of the stairs. At the end of the week, I asked, publicly, that all of the kids (whom I became very close with) if they would come up to me at church and say hi, since I can't always see them. Today, most of the girls came and gave me a hug!
I struggled, and still do struggle, with the need for help with childlike things: putting toppings on food, pouring drinks, choosing condiments, etc.), and even considered not going to camp because of my disability. But I did go and had a fabulous week with new friendships. Hopefully, I helped some others to better understand the needs of one with vision problems.
There will always be those who are afraid of us: those that don't understand and don't want to. But I would have missed a great opportunity if I had not gone. I don't know if I could do such things as well if I didn't know that I had you all here with me. For that I thank you!
From Lori:Thank you all for your nice letters about my little sons. I have been sharing with my sons some of what you say. I even told my older son that he could be an inspiration to some of you here who have much better vision then he does, as you see how he adapts and overcomes at 20/400. He even still plays football in PE, and guess what? One day, he made all the points his team had for his team. He's always been the fastest runner in his grade. I'm not sure for middle school this year. But his vision teacher and teachers have watched him in amazement, and the determination that this little 12-year-old has.
OK, I'm starting to cry, so time to go. Love and prayers for all of you. My heart goes out to each and every one of you.
(After speaking about her blindness to her church congregation.)
Hello everyone! I can not tell you how much it helped to know that you all were praying for me...all over the world! It worked! I got up there and, at first, forgot my name! I stuttered a bit, said I was scared, and then went on. It went very well. I told about my diagnosis as being similar to MD. I explained what that was and that it affected our central vision. I explained that we need that vision for reading, driving, and recognizing faces. I threw in something about wrinkles too.
I then said, "If I don't see you, your handshake or don't look directly at you, if you drop something or need help with a visual task and I don't jump in to help, or if you point one direction and say to go over there, and I look the opposite direction and say where, it's not because I am stupid, lazy, or rude. It is because I am legally blind.
I used Cathie's statement about how secrets bind, and, while this isn't necessarily a secret, it is an invisible disability, making it tricky to know when and how to announce it's presence. I shared Tabby's analogy about living in the halfway house between sight and blindness, and that sometimes we get cabin fever. I said that I had begun to get a bad case of cabin fever and needed to come out. I told them how they could help me to do that. I asked them to approach me, take my hand, and tell me who they are every time. I let them know that I eventually would know them well enough that they wouldn't need to do that, but, until then, I would be so grateful if they would.
I suggested Cathie's idea about the name tag with something on it to remind others. I told them my idea about the cute little eyeball with a line through it (this got a good laugh), and asked them for any ideas that would help them remember. I then asked them to greet one another, and then told them to do it with their eyes closed. "Just kidding," I said.
The response was wonderful. The Pastor had printed Dan's "10 Rules of Blind Etiquette" on the cover of the bulletin and I can't tell you how many people greeted me. One man said to another friend of mine that he was going to go talk to that blind lady and tell her that he was the handsomest man in the church :). Almost all of them said that they had a relative or knew of someone who was legally blind or had MD. Unfortunately, I was not thinking ahead, as I had forgotten to bring the MD cards with me. I am calling the Pastor to print the web address on the bulletin next week and I have several coming to get a card from me next Sunday. I couldn't have asked for a better response, and you were all right! I feel so much better!
If any of you think that you have no real purpose here, let me change your mind. I do not think I could have done this without your support and prayers. It is knowing that I am not alone that has given me the freedom to share myself this way. Hopefully it will help a few others to find their way here to receive more support than they have now. Not to mention those who were made to feel more comfortable with blindness!
I love you guys, and God Bless all of you!
From Sharon N:
Good Morning. I appreciated the exchange of thoughts with regard to acceptance of visual difficulties. I especially appreciated the words of Cindy and Sharon C with regard to being open and straightforward about vision impairment.
The following statement by Sharon C had a great impact on me. "We need to use tact and care, but if we are going to be left with the isolation of pretense so as not to face the discomfort of exposure, then we are, in essence, agreeing with the false stigma that there is shame and weakness in our lack of vision."
I recognize that I still view this as a weakness. I wonder why, as I have learned that most people with vision impairment are stronger than those who have never faced adversity. We meet so many people on this list who have found ways to overcome so many challenges. Why then do we, who are new to vision difficulties, see ourselves as less than we were, prior to the eye condition? I will spend some time today contemplating on this matter.
You will have to excuse any errors in text, as this morning my eyes are so poor I do not clearly see the screen. Frustrating, as I had been doing so well. I think this is as much an emotional challenge as it is a physical challenge. No, I do believe the emotional challenge is greater.
We do, however, have choices. We can choose to let this condition get us down and feel like victims, or we can choose to feel empowered and get on with providing the best quality of life possible for ourselves.
I am going to the gym for strength training. I am frustrated because I have a problem setting the equipment and can't read the computer screens on some of the machines. I don't discuss this with my trainer. I just wait for him to set everything. He was telling me he has a client who is totally blind. She has been blind since childhood. If you could see this building, you would be impressed that she even finds her way into the bowels of the University. She not only finds her way, she sets her own machines and no longer needs assistance to find her way around the busy room full of various moving equipment. The trainer was only making conversation with me, but I felt like a whiner. On Friday, I will set my own weights, and I will use my watch or whatever means necessary to note status and progress.
Perhaps I will even tell my creative writing group I actually can't see any of their beautiful poetry. I do enjoy listening. Telling them by writing about it seems like a good idea. This will be difficult, because people's reactions do change. I don't need to be singled out.
Have a good day everyone.
Sorry for not responding sooner. I'm a programmer, and I'm on a deadline right now, so I'm kind of tight on time for the next few days. I saw the pain and anguish in one of your messages and stopped what I was doing to respond. That is one positive thing this disease has taught me. I have learned to remeasure what is really important in life.
I was diagnosed with Stargardt's disease at age 39. I am now 40, with a birthday coming in a few weeks. I can tell you from experience that this is probably much harder on you than it is on your children. One very positive thing about Stargardt's is that there is no physical pain involved. There is most definately a debilitating side of it, and I would never try and kid you about it.
A couple of thoughts here. First of all, recognize what's going on in your own head. You are grieving for the losses your children have and will undergo. This is normal. However, recognize that this is NOT your fault. You could not have prevented this by "being a better mother". Your husband could not have prevented this by "being a better father". While this disease will certainly change your children's lives (at least for now, but I'll come back to that in a moment), it does not mean that they cannot live very full and healthy lives. I know my wife and my mother were both devistated by the news (once they understood what it meant) that I had this disease. Both have come to realize that I have no intention of letting the disease take anything important from me. What's important? Well, I can support myself, I can be a good husband and father, I can participate in my community, and I continue to be active and have fun with my family. When I started looking at what I might have to give up, I could only come up with a list with two items on it. Can you believe it? Just two! The first thing I will likely have to give up is flying. I'm an instrument rated pilot (former military). Right now, the FAA is letting me continue, but I'm having to jump through a lot of hoops to do so. I'm sure I'll call it quits before they make me. I fly with my family, and I have no intention of endangering my loved ones. The second thing I'd have to give up is driving. My wife is probably a better driver anyway (certainly fewer tickets/accidents over the years).
When I was diagnosed with this disease, it was really hard. I didn't know anyone else who had it; I'd never even heard of it! The thing that probably helped me the most was a 45 minute conversation with the Executive Director of Macular Degeneration International (www.maculardegeneration.org). When I talked with Tom, I found out he was diagnosed with Stargardt's at 27. Now many years later, he has no central vision left. But he still reads, rides a bicycle, works, helps others, has a family. I came away knowing that this guy really isn't missing out much in life. Sure he'd like to be able to see better, but his life is rich and full. I decided mine would be too.
Most of us, once diagnosed, are very frustrated because there is literally nothing we can do. I'm not a medical researcher, and this one is in the hands of talented professionals who are just that. Nothing I can do can hurry it up. I started watching several different, but related, scientific disciplines. I monitor microbiology, nanotechnology, genetics, gene therapy, stem cell research, and a few other topics here and there. The conclusion I've come to is this. It is my opinon that within 5 years, Stargardt's will be not only treatable (as far as halting the damage), but also reversable (as far as restoring the lost vision).
So, I'll offer this. Cry if you need to, but remember that a day will come when you will take your son to the doctor, and they will do a treatment on his eyes that will probably last about 45 minutes. You'll take him home, and over the next few days, he'll start seeing better. And one day, he will walk with you and tell you that he'd forgotten how pretty all the leaves were on the trees, and then he will look at you and tell you he thinks you are pretty, too. THAT is what you are looking forward to, and THAT DAY IS COMING! Plan for the party now Lori, because you are going to want to scream, shout, and holler with everyone you know that your sons are CURED!
I wish you the best. We're here if you need anything.
I stood among the rows of stars and crosses, an American among 10,000 countrymen but not really home. As the wind beat the waves, and the waves crashed to the shore, I attempted to jump generational gaps to imagine this beach as it stood over fifty years ago.
This year I have walked through the slums of a 3rd world country in Africa, I have marveled at the brilliance of Michelangelo's Sistine Chapel, and I have stood in the middle of the American Cemetery at Omaha Beach.
I cannot count the lessons I have learned or the invaluable experiences I have had.
But the sad truth is that with time, the outrage dissipates, the colors fade, and the waves stop echoing. I am not saying that the lessons I have learned will be forgotten. They will not. But they will be pushed to the side because life will go on.
That is what is so special to me about the lessons we take from MD. Being visually impaired, we have found that our problem cannot be put to the side, but must be carried with us.
It exists in the very window to our world, a constant and unchangeable testament to the power of determination and perseverance, the importance of charity and compassion, and the necessity of beauty and appreciation.
Though at times our journey may be harder, in the end we can justify our efforts: we realize that instead of a lesson in humanity, we have a link to it.
To all of our new folks, welcome. This group offers wonderful support, and it is made up of people just like you all over this globe. You will find people who care, who see as you see, who feel as you feel. All of us, though different in personality, at different stages of vision loss, and at many different ages, blend together to form a truly unique family.
Imagine this. You are alone in a small boat on a lake. It's a perfectly beautiful day, calm, the water is sparkling, and you are taking it all in. Out of nowhere, clouds come in heavy and dark. You hurry toward shore, but your boat begins to sink. You slip into the deep, dark, murky water. You panic, for you can't swim. You thrash about and cry for help.
You are about to give up when you find that you are being raised from the water and carried to shore. There, beneath you, is a net; but it is not made of rope. It is made of people, and you are being warmed and dried, comforted, and held firm.
This net covers the whole globe. It supports you until you are strong and confident. It is mostly invisible beneath the water's surface, yet it is there to rise up when you need it. All you need to do is call out. Gently and quietly, strong and firm, beneath you lies this wonderful net of support. You are not alone.