Living on the frontlines

This church is right on the village square, sort of speak, in Concord. It has a very old cemetary right next to it on the side of a hill. Looking at old graves can be very interesting. I remember doing it when we lived in Europe where indeed cemetaries can be very old and have many interesting stories to tell in the stones. We couldn't go in the cemetary, but we could take pictures of the stones from the sidewalk. With a telephoto lense you could read the markers. Many of the graves were from before the Revolutary War, and still others were graves of people who had died during the Revolutionary War.

Just as there's a British memorial on one side of the bridge, this is the memorial to the Minutemen who died during the conflict.

This place was so peaceful and the water so calm. People in canoes came by often. I looked around at the ground, the rise on the other side of the bridge with the open field, and just tried to imagine the Minutemen facing off against the British troops.

I thought some of you would find the following story interesting. It's from the Arizona Republic. Kilimanjaro hikers show that visually impaired are independent by Eddi Trevizo - Jul. 27, 2009 09:05 AM The Arizona Republic Cindy Wilhelmi and Adam Messler reached the summit of Mount Kilimanjaro in late June, trumping a lifetime of disability. Wilhelmi, 49, a Glendale resident, and Messler, 29, both legally blind, observed what they could of the famed Tanzanian mountain's scenery from an elevation of 19,340 feet, amidst a flurry of flashing cameras, tears and hugs. The two were among a group of eight blind climbers , along with 17 sighted guides, who hoped to raise funds and awareness for the Foundation for Blind Children in Phoenix. The group raised over $200,000 through fundraisers to benefit the foundation's infant care program, which provides teaching skills and assistance to families raising visually impaired infants. To read the full story go to: http://www.azcentral.c

Here's another story about NIH funding from the American Thoracic Society's Washington Letter. House Approves 2010 Health Spending Bill On July 24, the House passed the FY 2010 health research and services spending bill, known as the Labor-HHS-Education Appropriations Bill. The House passed the bill by a margin of 264 to 153. The bill provides $30.966 billion for NIH, a 3.1 percent increase over FY 2009 and a 1 percent increase for the CDC. The bill includes language requesting the CDC establish a program, including a public health action plan, on COPD, although funding has not yet been specified. The ATS is working with CDC's Office of Chronic Disease Prevention and members of Congress to ensure that a COPD public health program will be set up within the next year. The ATS was also successful in getting the following other agency directives included in the bill: • Directive applauding NHLBI's sleep research and calling for more study to modify the link between sleep di

You’d hardly think of getting behind the wheel as a point of controversy, but for some in the blind/low vision world, it really is a point of contention. Who should be allowed to drive, who shouldn’t and is it really safe? I must confess, in my younger years I was very against the whole thing. It didn’t seem safe. As I’ve come to understand how even people with the same visual acuity can sometimes have different “practical” vision, I’ve lightened up on the issue a bit. Even so, I don’t drive and I won’t drive unless there’s some technological breakthrough that would make me feel that it would be safe. My nystagmus makes it very hard for me to get my eye to look into a bioptic unless everything else in the visual field is blocked out. High glare moments, such as twilight, reduce my vision considerably. So for me, it’s a non-issue. While there are many low vision drivers who seem to be perfectly safe, I do worry that the pressure to drive puts some people behind the wheel that maybe shou

Frankie the Cat got this photo of Carmen and I standing next to this big statue of the horse. It was in a park near where Gabe had a doctor's appointment.

This is a press release from the National Federation of the Blind - I want to go to Virginia just to try this out! Grin! Blind can take wheel with vehicle designed by university engineering design team 7/20/2009 News Outlet: Science Blog.com Publication Date : 7/15/2009 12:00:00 AM A student team in the Virginia Tech College of Engineering is providing the blind with an opportunity many never thought possible: The opportunity to drive. A retrofitted four-wheel dirt buggy developed by the Blind Driver Challenge team ( http://www.me.vt.edu/blinddriver/ ) from Virginia Tech's Robotics and Mechanisms Laboratory uses laser range finders, an instant voice command interface and a host of other innovative, cutting-edge technology to guide blind drivers as they steer, brake, and accelerate. Although in the early testing stage, the National Federation of the Blind -- which spurred the project -- considers the vehicle a major breakthrough for independent living of the visually impaired. "

I was wanting a way to dampen the munchies - and God took care of it. Grin! I don't know what's up, but this morning I woke up with sores all inside my mouth that hurt like *(^(^(^., Tylenol didn't do it. I had to break out the big guns. I also have this ongoing little ulcer thingie so it's been code brown galore, at least once a day or more. I need to go to the store, but I'm afraid to get too far from home for fear of "code brown." My joints are acting up too. Whine, whine, whine. Suddenly I don't really want to snack. Guess that took care of that!

Here's an update on the proposed NIH budget. So far, so good. House Passes Proposed 3 Percent NIH Funding Increase July 27, 2009 By a GenomeWeb staff reporter NEW YORK (GenomeWeb News) – The US House of Representatives on Friday passed a 2010 budget for the Departments of Labor, Health and Human Services, and Education that would increase funding for the National Institutes of Health by nearly $1 billion over its appropriation for 2009. To read more visit: http://www.genomeweb.com//node/921113?emc=el&m=451175&l=1&v=244e9bc480

This guy was at the memorial to the fallen British, but he didn't seem to be a historical reinactor. He talked with visitors, let them check out his uniform, but he really didn't say much.

I don't know what's wrong with me. I have a very bad case of the munchies and have had for about two days now. This is bad, bad - very bad. I don't know why. I don't feel stressed, or depressed or any of the normal emotional things that make you want to snack your life away. I feel like I felt when I was on steroids, or birth control pills - as if my appetite just won't quit and I never feel full or satisfied. It's as if some chemical switch got flipped in the past two days and it's taking every ounce of willpower I have to not eat constantly. What is that all about??????? It isn't just a craving. This is sooooo annoying. I need this like a hole in the head. Someone make it stop!

This was a memorial on one side of the bridge in honor of the British who died in the battle.

We brought our lunch with us every day to avoid the high cost of convention center food. Frankie made tuna salad, one of my favorites!

This is my friend's son Seldon. He's the oldest of the kids. I think they all had a good time swimming. We like to have never gotten them out of the pool.

While doing some housekeeping, I realized that our Yahoo group for adults with HPS has really come a long way! We were founded on July 11, 2004 with just a handful of members. Today we are 85 and exchange several hundred messages a year - some of just chit chat but others of emotional support as we all try to figure out this life with HPS. I started the group because my first HPS conference had such an impact on me. I was officially diagnosed at the end of the summer, but it wasn't until February of the following year that I got to attend an HPS conference in New York. Until then I'll I'd read about HPS was gloom and doom. My lungs were already affected and all I heard were negative things about my life expectancy etc. Going to the HPS Conference and meeting so many other people walking in the same shoes, yet thriving, was the best thing that could have happened to me. As the next year went on I was frustrated that such a wonderful support mechanism was only available once

Here was another sight we stopped to see on our quick trip to Concord. This is the Old North Bridge. When the fighting broke out between the British and the colonists, there had been a few skirmishes that first day of the Revolutionary War, starting in Lexington. It's at this bridge, however, that the forces sort of faced off with the Brits on one side and the colonists on the other. It was on this spot that the first official orders were given to fire on the British troops. Can you imagine what that must have been like? We didn't yet have an identity as Americans. These farmers known as the Minute Men were essentially being asked to fire on their own - as if we were asked to fire on other Americans. How badly things must have become from their point of view to reach such a place.

A little inspiration for the final Goodsearch push

Our friends at www.goodsearch.com pay to charities once a year. September is the cutoff, thus we've got one more month to make an impact on our Goodsearch numbers for the year. When I was working as a journalist, I used it all the time. Now that I haven't been in a constant info-seeking role, I haven't used it as much. Our numbers are also down for the year so I guess I'm not the only one. Let's see what we can do to make the biggest impact possible in the next month. Encourage all your friends and family to help us search for the cure at www.goodsearch.com .

The HPS Network will be conducting another capital campaign this holiday season. We will be sending letters, like so many you get in the mail, asking for donations to help support the work of the Network. We enclose a Christmas card to make it easy for friends and family to make a donation as a gift, and then send the card to the person in whose honor the gift was made. We don't, however, just plaster the world with our capital campaign. We only send to members, and to a list of friends and family submitted by all of you. If you have a list of people you think might be willing to help us fund the cure - grandparents, friends, relatives etc. - please send them to the HPS Network's New York office. We really appreciate the help.

Don't forget to update your mailing address with the HPS Network's New York office. The latest copy of the HPS Network News is at the printer and will be shipped to the Network office to be sent to all of you next week. We will also be posting a PDF of the newsletter to the Network's Web site. I just have to say, this has been kind of an involved, difficult process. If anyone finds any typos, just don't even tell me about it - grin! We did have to hold over a few stories on fundraisers and I'm already working on the fall issue now.

I took this view of Wayside to show what the first house must have looked like. Each resident sort of added to it. When the stories I enjoyed from Little Women were taking place, the house didn't have a wrap around porch. The "sides" or wings of the house were added, but the second floor on the wings wasn't there, nor was the third floor. Instead, it was more of the traditional New England style house. Where the bay window is now is where the front door used to be.

Today I had some visitors of the short variety - grin! Seldon and Kelsey are the kids of friends of mine, Annette and Christian. They came over to play in the pool, and I used the opportunity to play with the different high speed settings on my camera. I love it when I can catch the water in midair, or an expression in an instant. It's so much fun!

One morning Frankie drove me to Concord, a place I'd LOVE to visit again someday when I have more time. This is a house owned by the National Park Service, (where I got my pass) and as it turns out it's the home where the actual events of one of my favorite childhood books took place - Little Women. I'm going to copy below what Wikipedia has to say about it because it's almost word for word what the brochure says about it. From Wikipedia: The first record of the Wayside property occurs in 1717 . Minuteman Samuel Whitney was living in this house, which still retained most of its original appearance, on April 19 , 1775 when British troops passed by on their way to the Battle of Lexington and Concord at Concord's Old North Bridge . During the years 1775 and 1776 the house was occupied by scientist John Winthrop during the nine months when Harvard College was moved to Concord. The Alcotts In 1845, educator and philosopher Amos Bronson Alcott and his wife, Abby, p

The National Park Service has a program for people with disabilities whereby if you present proof of disability, you can get a lifetime free pass into America's national parks. Depending on the park, and the ranger I suspect, you can also get other perks as well. Normally I am opposed on principle to such programs. Why should I get a free pass just because I'm blind? If I want to be an equal member of society, why shouldn't I pay what everyone else pays? I've had to swollow and choak on some of my principles this last year. In my current economic state I can't really afford to turn down any financial break on anything, even if I don't like the reason it's being offered. Frankie kindly drove me to a nearby national park area so I could get the free pass and have it on hand. It wasn't far from where they live. These flowers were growing alongside the parking lot. I thought they were pretty.

And another health update......the ulcer under my stoma that was the size of a quarter before I traveled is now a long shape about the size of my pinkie finger. It now doesn't just ooze blood - it bleeds actively making life a real challenge right now. I should probably go in for it. Dr. Seward and I had discussed Amicar, but I never followed up as things had improved. Maybe I should do that - oh how annoying!

There was a big hill in the park and the kids decided to roll down the hill multiple times. Just watching made me dizzy - is that a sign I'm getting old? They were in a state of total bliss - no troubles in the world. Oh to be a kid again. There's a daycare right next to my apartment building. I can hear the kids outside playing every day, and often I see them just running in circles and screaming at the top of their lungs. It looks like it must feel really good to be able to run in circles and scream for no good reason at all. I'm jealous.

Here's an update for those following this story.

I saw a great t-shirt and thought many of you could relate to it. It said, "I used up all my sick days at work, so now I'm calling in dead." HA!

Normally I’m a very good walking public relations person for blindness, but hey, we’re all human. I have a confession to make, I let a Boston cop walk me across the street for no good reason. Carmen and I were trying to cross the street outside of the Boston Convention Center. It was a confusing intersection because it wasn’t just a four-way traffic flow. One of Boston’s finest was keeping watch on things and saw me, the woman with a cane, trying to make her way across. He came over, offered to take my elbow, completely stopped traffic, and escorted me across the street making delightful small talk the entire way. I don’t think he even noticed poor caneless Carmen. And, even worse, I let him. He was very, very, cute. Sometimes a girl’s got to do what a girl’s got to do. So much for the cause.

Regular readers have heard me whine about the expense of medical care time and time again. Here's yet another reason we need some real change in this country. I thought I was well protected by good insurance. Think again. Our problem isn't just the uninsured (which, by the way, are made up largely of people with chronic illnesses that have lost coverage, and now can't even buy coverage because of theri pre-existing conditions) - it's also the growing number of underinsured. Medical bills prompt more than 60 percent of U.S. bankruptcies By Theresa Tamkins This year, an estimated 1.5 million Americans will declare bankruptcy. Many people may chalk up that misfortune to overspending or a lavish lifestyle, but a new study suggests that more than 60 percent of people who go bankrupt are actually capsized by medical bills. Bankruptcies due to medical bills increased by nearly 50 percent in a six-year period, from 46 percent in 2001 to 62 percent in 2007, and most of those who

This was another memorial in the park, and as memorials go, I thought it was really cool. It has the faces of different nationalities coming out of it and it's in honor of all the people who have come to the United States and helped to make our country what it is today. The memorial had a silver shiny quality to it that you can't see well in the photo, but it gleamed when the sun showed on it.

This was a house at the edge of the park. I loved the architecture in New England. So many times we drove by the cutest houses with white picket fences and flowering gardens in the front. I wanted to yell to Frankie to pull over so I could get a photo - only there was usually no place to pull over and we would have never gotten anywhere because there were so many of them.

Right off the harbor there was this lovely park. The kids enjoyed running off some energy and the adults enjoyed the peacefullness of the place. This was a memorial to the people who settled Plymouth.

It’s coming up sooner than you think – craft season at the HPS Network. For those who don’t know, the HPS Network maintains a “craft bank” full of hand-made items made by HPS’ers or their family and friends. These items are then sold to raise money for the Network. This fall we have at least two craft selling opportunities, provided we have enough items to cover both events. One will be at a craft fair in Greensboro, NC and the other will be at the HPS Christmas Concert in Oyster Bay, NY. We need a wide range of items. Do you make anything? What about your grandmother, aunts or uncles or even the sewing circle at your church? We need more crafts than ever before. Last year was our first attempt at selling crafts as a fundraiser. We sold crafts at the Christmas concert and the HPS Conference in New York. In total, we made around $800. We can get that number up with more and a wider variety of items to sell in all price ranges. Crafts should be sent to the HPS Network home office at: One

This was a nice little accidental movie find. Arranged is the story of two women, both teachers, who meet at a school in Brooklyn. Other teachers and students expect the two to have friction as one is an Orthodox Jew and the other Muslim. Instead, they become best of friends. They share the expectation of entering into arranged marriages and they share the struggles of balancing their own traditional cultures with the rest of modern America. I thought it was a great movie and family friendly. I give it four out of five spoons.

My friend Ana commented that the boats in Plymouth Harbor looked like swans. Here's another image of them.

These were rowboats people had "parked" at a pier near the Mayflower. I just thought they were interesting looking. I thought it might make a painting someday, but I can't decide which I like better.