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August 2009 - Posts
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Anthony Creer and Janet Perez are organizing an event in the Chicago area Sept. 12th. You two go! Here are the details:
Where: at MCM Pub 3907 N Cicero Ave.
When: Saturday, September 12 from 8:00 pm to 11:00 pm
Why: To raise money for the Chicago Puerto Rican Parade outreach project next year
What: Karaoke and raffles
If you live in the Chicago area and would like to support the work of the Hermansky-Pudlak Syndrome Network, this would be a fun event to attend. And,, if you’re a family affected by HPS, it would really help out to have you at the event. Our financial supporters need to meet some of the people they’re helping.
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This afternoon I peeked out the window at my back porch. The back porch is usually a total disaster. It has ivy that grows everywhere at a rate you wouldn’t believe. Keeping it well trimmed is a big job, even for such a little patio – and I’m allergic to the ivy.
I used to tank up on Benedryl and just suck it up and cut it back, but these days even 10 minutes at the task not only starts to affect my breathing, but pretty much wipes me out for the day. I can keep up a few flower pots, but that’s the extent of my green thumb.
I’d asked the landlord to suggest someone to hire to cut it back. I’d put out a few feelers, but every plan for some help has fallen through.
Then today I looked out and little elves had come and cut back all the ivy, pulled out a particularly large and particularly sick bush – I could just cry.
I’ve felt like the neighbor that doesn’t mow their yard. The patio has been such a source of embarrassment. I’m so grateful to whomever has come along and helped me out.
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Has anything ever happened in a split second that later you wish you’d handled differently? That happened to me this week while working at Homers, and I’m sorry to report I didn’t do what I knew I should have.
Homers is a non-profit coffee house run by the Christian Businessmen’s Association in our area. Needless to say a lot of people spend time at Homers that are made aware of it through the contacts of the association. Living in a very, very “red state” area, it follows that many of the people that spend time at Homers don’t share my political view of the world.
Who cares.
We might not vote the same way, but in general, they are well-meaning nice people and I enjoy being there. Last week a guy came in that I’ve seen at Homers a few times, but don’t really know well. It was the day that Sen. Kennedy’s death was announced, and this man was being quite loud about the fact he felt the world would be a good place without the Senator. I bit my tongue. There are some people that are worth having a political dialogue with and some who just aren’t worth the breath. They don’t want to engage in dialog – only monologue of their own choosing. I had the feeling this was one of those guys, so I was more annoyed at all the racket he was making than I actually was about his tacky comments (regardless of political belief – what he said was just tacky.)
He was joined by a friend.
I wasn’t meaning to listen to their conversation. I was trying to work, but the first guy was so loud it was hard not to listen. They began talking about their church, various people they knew etc. The first guy then started talking about how he’d been parked at the bank across the street, and some woman had walked out that he’d taken particular notice of. Funny thing was although he seemed to have found her quite attractive; he managed to list off what he considered every one of her flaws. I looked over at this guy, who probably weighed about 300 pounds, and just shook my head. What a jerk.
But, it got worse.
The heavy guy apparently has been going to the gym to work out (good for him). The second guy asked him if he’d seen on the news that a woman had been raped about a block away from where they both work out. They agreed that the event was terrible – that the world just wasn’t moving in a good direction in general – and then it happened.
The second guy, an older gentleman, said, “Well, you know some of these women are just asking for it – the way they dress.”
My chin about hit the floor. I could hardly believe I’d heard what I’d heard when it was confirmed by jerk number one.
I would agree that there are many women in this world, and girls, who could stand to exercise a little more modesty. But that’s not the point. The point is NO ONE has the right to force themselves on another person sexually. NO ONE. I don’t care if a woman is walking down the street buck naked – no one has the right to rape her. No one asks to be raped. No one deserves it. Period.
We are not animals. We are humans, and thus can exercise self control.
My stomach churned as I thought about whether to butt in to their conversation – a conversation everyone could hear.
I had enough. I was going to be unable to focus as long as these two were around, so I packed up my computer and left – coffee not even finished.
I’ve been ashamed of myself the rest of the week for not speaking up.
You never know whose listening.
I was sitting right next to them. What if I had been a survivor of a rape? How were they to know that the subject might be more than abstract for some woman sitting in that coffee shop? Why didn’t I speak up and call them on the carpet for that? They probably would have blown me off as a “feminist” – as if that’s a dirty word – but maybe there would have been some unknown woman sitting there who would have felt better having someone stick up for her.
I’ve felt so terrible these past few days for having not done what my conscience told me I should do.
One final note on the topic for my friends who are Christians. We all sin. We all have not done the right thing or said the right thing at one time or another. Remember, however, that when you publicly call yourself a Christian, the world is watching and listening, even when you might not know it. Do your actions and words demonstrate compassion, kindness, forgiveness and love – or judgment, condemnation and hatred? I would have found this comment by these two men offensive no matter who or what they claimed to worship – I found it even more so because in the context of their conversation, they were wearing their faith on their sleeve.
Maybe that’s not fair – but its how I felt. If I had been a woman sipping her latte who was a non-Christian and a rape survivor, the encounter would have left me with the impression that I should be leery of these Christians who speak of love, but don’t seem to show a lot of it.
Again – you never know who’s listening.
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If you’re in need of a little laughter, this comedy was a riot. It’s not a new film. I think it came out in 2000 – ironic given the current economic situation in our country now.
The story is about your typical, upwardly mobile, upper-middle class family that seems to have it all. They’ve got the big house in the suburbs, the car, the life sort of speak, and they’re in competition for even more.
Plans go wrong, however, when they both find themselves without a job. They try everything to stay afloat and keep up appearances, but ultimately, they turn to a life of crime.
In the end, however, they turn their newfound criminal know-how back on the corporate criminals that caused them to lose their jobs in the first place.
The very last line of the movie had me belly laughing for a while.
I give it four out of five spoons.
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 Here's another photo from the Puerto Rican conference. Unfortunately, I don't know who all these folks are, but they're a great looking bunch!
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 Photo from Dr. Camona - here he is with another cute baby!
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 Photo submitted by Dr. Camona
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 Pictured above: Adam, a very cute baby, and Dr. Carmello Camona-Rivera from the NIH. Congrads Puerto Rico!
I haven’t posted yet about the HPS Puerto Rico conference. I wasn’t there personally, and so I’ve been holding back waiting for more details. But, Dr. Carmelo Camona-Rivera, one of the researchers in Dr. Gahl’s lab, shared photos with us.
I’m giving the folks in Puerto Rico a little time to recover from the conference. I know when you’ve put on a conference, it drains you and you need a chance to catch up with your regular life.
The conference was a huge success! We enrolled 45 new HPS’ers on the patient registry – perhaps the most at one time ever. In addition, there were 73 HPS’ers in attendance that had been to one of our events before – and of course everyone’s family.
There was also a separate session for medical professionals and 45 attended.
The week also brought many outreach opportunities speaking at various clinics and hospitals. HPS also got a lot of coverage in the Puerto Rican media. Those are some of the details I’ll have to post later, along with more photos I hope – wink wink.
A big hat’s off to Richie, Ivette, Yeidyly, Manuel, Herman and Hilda who went early and scouted out places where we could do outreach. You all did such a fantastic job to make this event a success.
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Below is a tidbit that was in the newsletter of the National Organization for Rare Disorders (NORD). It's from the Department of Health and Human Services. I'd argue the problem is actually bigger than this report suggests, as it only looks at the individual insurance market, and most Americans get coverage from employers. As a result, people like me are not included in this report - people who find themselves unable to afford COBRA, and in order to maintain coverage, essentially must rid themselves of all assets to ensure long-term care of some kind. How is that in the government's best financial interest? Here's the tidbit: Millions Denied Coverage Because of Pre-existing Conditions
The U.S. Department of Health and Human Services (HHS) has published a new report, “Coverage Denied: How the Current Health Insurance System Leaves Millions Behind,” that examines the insurance company practice of denying coverage to Americans with pre-existing medical conditions.
A recent national survey found that 12.6 million non-elderly adults—36 percent of those who tried to buy insurance on the private market—were discriminated against in the past three years as a result of pre-existing conditions. The discrimination took the form of denial of coverage, higher premium charges, or a refusal to cover the pre-existing condition. More details can be found here: http://healthreform.gov/ reports/denied_coverage/ coveragedenied.pdf
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Need a little comic relief? I thought this film was pretty funny. Either that, or I just really, really needed to laugh. The story is about a manager at a call center. His company decides to outsource his entire section’s duties to India. They’re firing everyone but him. His job is to go to India and train his replacement.
He arrives in India totally not interested in India, it’s culture and certainly not happy about the job. Much of the humor is based on cultural misunderstandings.
I do wonder how the movie would go over in India as it sort of portrays India as being backward. From the people I’ve met that have gone there, this isn’t universally true.
But, if the main character wasn’t impressed with India in the beginning, he does have a change of heart and finally begins to take an interest in Indian culture and all it has to offer.
I give it four out of five spoons.
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 Here's Dr. Kantor, a low vision doctor specialist from Wichita who presented at the KC NOAH event. He was a very nice guy!
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We HPS'ers want to thank the NOAH folks in Minneapolis St. Paul. They've agreed to put out some HPS brochures at their end-of-summer picnic. We really do appreciate it! Just in case any readers are in the area, here's the info on the event. You can also check out the NOAH site too for other albinism-related coming events - www.albinism.org. Twin Cities End of Summer Pot Luck PicnicMark your calendar for the Twin Cities potluck albinism picnic!
When? Sunday September 13th at 11:00am
Where? Beards Plaissance on the west side of Lake Harriett in Minneapolis.
What? Please bring a dish to share and beverages for your crew. And, of course, sunscreen. :-)
We’ll supply plates, utensils, condiments, etc. There is a toddler park on the grounds, but if you have some fun summer games bring those along as well. We’ve reserved the picnic shelter, so we’ll plan on gathering rain or shine.
Questions? Contact Sue at gsmckinley@comcast.net or 952-830-1515.http://www.minneapolisparks.org/documents/permits/park_maps/Beards_Plaissance.pdf
Parking is available along the lake parkway as well as on Upton.
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This is not a movie to watch after a bad day. It’s a tear jerker, but oh so good. The story is about a little boy growing up in Nazi Germany. His father gets a promotion and the family has to move from the home they loved in Berlin to a place far away in the country. What the boy doesn’t understand is that his father’s new job is running a concentration camp.
The boy is very lonely as there aren’t other children to play with. He wanders off and eventually makes a friend of a boy in the camp about the same age. They play checkers etc. through the wire fence.
The ending is unexpected and I won’t give it away.
The movie has a great moral point. It’s easy to justify something as long as it’s happening to someone else.
One thing I liked about the movie is that to me, it really felt like Germany. I don’t know where it was filmed, but one thing I remember fondly about Germany is that it was always green. Even in the dead of winter when all the leaves were gone from the trees, it was still green. Germany gets so much rain and moisture that the grass always stays green and green moss grows on everything.
The house that the family moves to at the concentration camp also reminded me very much of some of the houses we lived in – built in the 1940s or 1950s. Of course Germany is full of quite beautiful old houses, but a lot of the construction was post-war.
On a darker note, the absurd notion that the camp was hidden hit home. Many Germans that I knew who lived in Germany during the time of the war would tell you they had no idea what was going on. Probably some of them didn’t – but many others had to have known.
Although the house is some distance from the camp, the boy still finds it. How could he not?
It reminded me of this place near where we lived in Germany. It was a huge cement structure on the Wesser River, a quarter of a mile long with walls 15 feet thick. It was a repair facility for German submarines built by French, British and American prisoners of war. When one of the prisoners would pass away, they’d just dump his body into the cement mix and force the workers to keep working.
Literally only yards away is the cutest, quaintest village. There’s a bakery right there that always had the best looking pastries in the window.
How could no one have known?
Enough of my memories. It’s an excellent movie. I give it five out of five spoons!
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