Tag Archives: Rochesterny

Honest Delusions

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The title of my post comes from an amazing sermon I heard at church last week from a retired newspaper reporter. At the FIrst Unitarian Church of Rochester, we have taken on a “Provocateur-in-Residence,” named Mark Hare, formerly of the Rochester Democrat & Chronicle. Hare’s first sermon was “The Honest Person’s Honest (Even Noble) Delusions” and just blew me away. (Listen here: streaming | download ) He talked about how all people put up delusions about all sorts of things. Putting self imposed limits on ourselves that sometimes we don’t even know we’re doing, until someone else points it out. For example, telling yourself you’re too old or too busy to go back to school or to take a new job, then someone else tells you that, well No in fact you can do it because of X, Y & Z. Then you think – well yeah, of course I could do that!

The part that astonished ME was when Hare started talking about his friend with cancer, near the end of his talk. Mike & I just kept looking at each other because we knew how it felt to “deal” with a terminal illness. This friend with terminal cancer, was told he would have 6 months to live. He just kept living his life. He made plans to play music and travel and kept living. You would think he never remembered he was dying. But it was not true. As Hare puts it, he had that stuff in the “closet” until he could deal with it. He didn’t live his life as a dying person, he lived it as a living person, and every so often he’d check in that “closet.”

Well the night before this we were watching Doctor Who’s Episode “Night Terrors,” where a frightened “little boy” kept all the scary things in the cupboard! (cupboard=closet) And since he was actually an alien being, they were really going into the cupboard. Even little kids can understand putting scary stuff away from sight!

I can relate to both these stories. Yes I have ALS, with no cure, that continually progresses, but I have chosen to live my life as a person who gets up, gets dressed and goes to work. I shove that horrible news I have that I will someday not be able to do anything back into the closet until I can deal. Occasionally, I do take it out and remind myself to enjoy each day that I have as it comes. I don’t think our human minds can handle knowing that sickness will wear you down and death is coming. That dark place will freak you out.

The best part was sharing this service with Mike, who gladly, already knew I was not acting in self denial but in a place that moves me forward in life. Which I guess keeps my body motivated to live as well.

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Speech from Red Wings Game

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Hello!

Thank you for the chance to say a few words to you tonight about ALS and the important research being done to find a cure.

ALS is a rare neuromuscular disease that affects about 1 in 100,000 people.

While its cause is still unknown, and the cure remains elusive, we celebrate the progress that’s been achieved by making May “ALS Awareness month”.

We do so as a tribute to a player who, at the height of his career, announced to the world on May 2nd, 1939, that he would be leaving his position as Captain of the Yankees.

The sudden shock of seeing an athlete go from a 363 average to only 4 hits in the first 8 games of the ’39 season gave the world a dramatic example of how quickly ALS can progress, and that no one, not even The Iron Horse, could fight it.

I am referring, of course to Lou Gehrig and the disease that bears his name.

When he made his famous speech, he said he was lucky.

He said it was because of the love and support from his family, friends, and fans, that he could face ALS as he did the game of baseball: with heart and a winning attitude.

Today, the MDA and the University of Rochester Medical Center, are helping ALS patients like myself face this disease,  the same way Lou Gehrig did –  and to live each day to its fullest.

On behalf of the MDA, I ‘d like to thank all the fans of the Rochester Red Wings that are here tonight for your support, and encourage you to do what you can to support ALS research to help us find a cure.

Thank you.

Who do I think I am?

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I saw the fantastic and inspiring documnetary called Who Does She Think She Is? at the MAG. WOW! I really liked that the event also included childcare. It is hard to be a mom and an artist, and certainly a wife.

When I was a little girl, when people would ask me what I wanted to be when I grew up — I would always answer a singer and and artist. When I was a little older, maybe 8 or so, I got a camera. I just took snapshots, and eventually portraits of my dolls. At some point my ideas changed and I thought it would be cool to be a chemist or something — but I was not cut out for chemistry, judging by my grades.

Singing was another option. I loved singing since I was little rocking out to the songs on the ’70s in my mom’s car. As a teen I joined chorus and briefly did some song writing and perfroming with my friends. We had big dreams, but as I try to tell my stepdaughter, it doesn’t always work out the way you planned. So you make alternative plans. I was in photo classes in high school and learned how to use video equiptment on our in-house TV game show Beep Buzz.

Although I still enjoy music, I mostly sing in the car. My passions did change to photography (and other artisctic mediums after college) and television. For many years I had a great spurt of energy for photography. All before having a cool TV job (and using my creative drive there) and having kids in my life.

I can’t really blame the kids, though. Yeah, they take up your time and much energy but their innocense as children is incredibly inspiring. I do blame my job and the fact that working on the web and using my creativity THAT way is what has drained me of my personal creativity. I give it to my company. And I also blame my body. It isn’t what it used to be. It’s old, broken, and weak. Possibly sick as well. And just ordinary life. We have so much to do today. Everyday. Grocery shopping, doctor appointments, etc… well you know what I mean.

So for now I will just write when I’m inspired and show you my older photos until I can get around to doing something else.

Fall is Here in Rochester, NY

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Although today is 80 degrees. Seems like a cruel trick from Mother Nature. Our summer was cold and now Fall is hot! Thanks! I’ve posted my best Autumn photos. They were all taken with an SLR FILM camera, a few years back. I haven’t actually explored photographing fall with a digital camera yet. Too busy with work and kids these days. The trees are just starting to change here. Every time in the fall, I pass my 2 favorite spots on my commute, I wish I’d just gotten out and taken the damn picture already! Always in a hurry, never have time to get out and snap that shot. One spot is by an old red barn that has a huge tree that turns a gorgeous orange. I’d love to do a seasonal shot of that barn with the tree. The other shot is my look down the Erie Canal from the Ayrault Road bridge. I always make sure I look over there on my way to work every day. It’s my own “simple joy” that I treat myself to on an almost daily basis. My own little meditation on the run.